tag:blogger.com,1999:blog-66645050814142814992023-11-16T01:49:23.025-05:00Isabella Grace-ciousMikaelahttp://www.blogger.com/profile/04299699527313278772noreply@blogger.comBlogger27125tag:blogger.com,1999:blog-6664505081414281499.post-26872276941318784842013-10-23T01:05:00.000-04:002013-10-23T01:05:34.292-04:00Awareness<div class="separator" style="clear: both; text-align: center;">
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Two years ago this past August, our
sweet Isabella was diagnosed with Kabuki Syndrome. I remember the day
we received the call from our geneticist confirming that her genetic
test proved what my research and my gut already knew... I remember
my body shaking uncontrollably as I hung up the phone, my heart
shattered into pieces all over our kitchen floor, the floor where my
children sat waiting for me to return to our pretend picnic lunch.
The relief of answers battled with the reality of a future I was
afraid to face. I struggled to compose myself, knowing that I had to
call my husband and tell him that our perfect baby had a genetic
syndrome, that she would never grow out of her illnesses, her delays,
her “quirks”, that she would have to continue to fight for every
simple thing that comes as second nature to most others… My life
changed that day, but Isabella's did not. She started her life as a
hero, battling blow after blow with resilience and grace, and
although we had never even heard the word “Kabuki” until she was
nearly 5 years old, her journey with this rare disorder started the
day she was born.</div>
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The first 5 years of Isabella's life
were hard. Really, really, really hard. It is a terrifying thing, not
knowing what is wrong with your child, yet realizing that whatever it
is, it is bigger than what I, as her mother, could handle alone. I
couldn't fix her. I couldn't heal her illnesses, or even shelter her
enough from having her catch every bug that came her way. I couldn't
make her talk, or walk, or eat, despite taking her to therapy 3 times
a week and constantly working with her at home. I couldn't take away
her fears of things that I still, to this day, cannot understand. I
couldn't be everything she needed, and even though I took her to
every medical specialist there is, where they preformed test after
test, and even though I researched for hours and hours every day to
try to fit the puzzle pieces into some shape that made sense, I could
not even give Isabella an answer to why she had to struggle every
single day of her life. I was failing her.</div>
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I think back to those dark days and I
can still feel it, the terror, the anxiety and the bewilderment.
While I struggled, Isabella began to thrive. Always on her own
time-line, always without a care in the world, she sang her way
through procedures, giggled through her therapies, and nursed her
illnesses with books and popsicles. She faces her hurdles without
hesitation, and never wants for more than the beauty she gets out of
the life that she has. Although every mother will say this about
their child, the truth is, Isabella is the happiest, the bravest, the
most joyful and empathetic child I have ever known. She doesn't know
anger. She doesn't know cruelty, or jealousy, or evil. She is the
child that wants to know your birthday, will remember it forever, and
will be the first to make sure you are celebrated on your day. She is
the child who, when asked her favorite animal, will smile broadly and
declare that unicorns and butterflies are tied for that title. When
another child once swiped a toy from her, she squealed happily and
said “I am so happy that you love that princess too!” She will
give anyone her last M&M if they ask for it, and she will talk
about how happy she is that she could do that for the rest of the
day. She never complains about the injustices of life, she never
feels bad for herself, she never asks why she endures so much. She is
content to just be here, living her joyous life the only way she has
ever known how... with resilience and grace. And a whole lot of
giggles.
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I look back at myself during those
early days, and I look back to that day two years ago when I picked
up the pieces of my shattered heart from the floor, and I realize
that it is Kabuki that healed me. I was afraid of what her future
might hold, and I was afraid of what it meant to have a special needs
child, to be a special needs parent. Her diagnosis brought us
answers, directions for more specialized help and most importantly, a
worldwide family of people who were walking the same path that we
were struggling to navigate. And even though it brings a wide range
of hurdles for Isabella to battle, she wouldn't be the most inspiring
and spirited ray of light that she is without Kabuki Syndrome. She
still continues to heal me every day.</div>
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Today, I am proud to raise awareness
for Kabuki Syndrome. Knowledge is a powerful thing, and it would be
an honor to help make it possible for other families to receive an
early diagnosis and avoid years of unknowns and heartaches. I am
proud to show the world my beautiful daughter, who has taught me more
about love, living, and acceptance than I ever would have known
without her. I am proud to tell you about the journey we have been
on, about all that Kabuki Syndrome means for Isabella, about the
things we have learned along the way. I would love to brag about all
of the amazing people that have come into my life because of my
daughter. I would love to share what it feels like to celebrate every
single milestone and accomplishment that your child reaches... We are
so blessed.
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There will always be obstacles, there
will always be fear, frustration and hardships to battle through, but
Isabella has taught us to battle without failure as an option. She
has taught us that giggling soothes the soul, and that even the most
shattered of hearts can be made whole again, rebuilt with love, held
together with hope, and sealed with acceptance. Mine is living proof.
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Happy Kabuki Syndrome Awareness Day.</div>
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(Thank you, Peta Colton and www.sakks.org for the beautiful awareness posters <3 p=""><br />
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Mikaelahttp://www.blogger.com/profile/04299699527313278772noreply@blogger.com0tag:blogger.com,1999:blog-6664505081414281499.post-29451050722755540522013-02-06T10:03:00.006-05:002013-02-06T10:03:46.391-05:00The Past 15 Months In One PostHi.<br />
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I was so annoyed with myself that it had been 9, then 12, now almost 15 months since my last post that I kept putting it off, because hey, what's another month? But when I look at all the amazing things that have happened since I have last posted, I realize that a month's worth of changes in our family is huge, and I am even more annoyed with myself that I haven't documented it like I've wanted to.<br />
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So what have we been up to?<br />
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Meet Lilia:<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjL9ABmnTupmLiRVdD4X3Xw-n8J2CdJYz2gCAfmcIPt3pmvrYxgIhlW-rYZ_VZdj1WC1aOlygTP2RSouBLki8EPKtkdjqebF2T_73tw5dUOB1PWxEcdsCQIJVeyLaM6sl4mdr11pIJC59E/s1600/Lilia+4+months.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjL9ABmnTupmLiRVdD4X3Xw-n8J2CdJYz2gCAfmcIPt3pmvrYxgIhlW-rYZ_VZdj1WC1aOlygTP2RSouBLki8EPKtkdjqebF2T_73tw5dUOB1PWxEcdsCQIJVeyLaM6sl4mdr11pIJC59E/s320/Lilia+4+months.jpg" width="240" /></a></div>
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She's awesome. I love watching Isabella and Noah with her. Bells thinks she's hilarious, she laughs at everything Lilia does. She'll ask her questions -- "Lilia, are you happy?" "Lilia, how was your day?" "Lilia, what's your favorite color?" -- and then she'll ask me what Lilia's response to those questions are. And then she'll laugh. </div>
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Noah is the sweetest big brother I could have ever imagined. I'm not just being biased, he really is so good to her. Where Isabella sometimes forgets Lilia exists, Noah knows where she is and how happy or sad she is at every given moment. He checks on her when it's been a while since he's seen her, he kisses her 100 random times throughout the day, and he tells everyone that meets her that "we named her Lilia and she's very fragile". This boy of mine has a soft spot for babies, and especially for Lily.</div>
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So besides growing a baby and then loving on her for the past 4 and a half months, we've been busy with the normal routines of life. Noah is in preschool again this year and he is thriving. His speech has improved dramatically, and he's always coming up with phrases that make us laugh. He is sweet (he tells me he loves me all day long, which is usually followed up with a "do you love me so much mommy?") and very sensitive (his feelings get hurt and he cries easily if he is disciplined), and he is also the most stubborn child I have ever met. He loves to hang out with Lilia and I in the afternoons when he is home from school, but he also enjoys hanging upstairs in his room playing by himself. He just turned 4, which, while being a sometimes difficult age with his stubborn nature, is also a really fun age to parent a little boy.</div>
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As for Bells, the girl is PROGRESSING! Sometimes the speed of progress is hard to see because in some areas, she is still moving at a snail's pace. But in other areas, her improvements are huge and real and absolutely thrilling. She loves school, loves her teachers, loves going to therapy, and loves working on her reading, flashcards, and homework at night. She is working on and has shown improvement with holding her writing utensils the correct way with the correct pressure used for drawing and writing, and has shown a new interest in coloring (which she used to show absolutely no interest in).</div>
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She has also improved in her gross motor skills; sometimes she will run so fast across the house that I am afraid she won't be able to stop herself before she runs into a wall. She can bounce and hop, and jump forward a few inches and down off of a step. She is working on kicking, throwing and catching with more accuracy, but she is alternating feet when going up steps and is starting to put her coat on with minimal help (still not close to zipping or buttoning small buttons yet though). Her muscle tone is still ridiculously low, and she is always moving and leaning on things to help offset this, but she keeps trying and learning new skills.<br />
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Some of the biggest issues we are working on right now are her irrational fears. She is currently terrified of all movies, and will scream in terror if you even take out a DVD or VHS case. I'm not sure where this fear comes from, as she used to watch movies all day long. She has no problem watching her shows on TV, and even loves it when movies come on the Disney Jr. channel, but if I try to put those same movies on in DVD form she will flip out. I'm talking turning pale, uncontrollable shaking, and screaming in complete terror flipping out. It's pretty awful to watch, so we obviously aren't pushing her into facing her fears right now, but we are trying to talk to her about them. She can't really explain what she is afraid of, which is hard because I'm not sure that she really even knows. I know that sounds, sights, and textures can be overwhelming for her with her sensory processing disorder, but I'm always surprised when old fears dissipate and new fears emerge. She is also afraid of certain toys that she used to love... One of the hardest parts about these fears is that they are starting to effect her in school. She had to leave music class (her favorite!!) this week because they were watching a video. Another time a little girl in her class was playing with a balloon and Isabella melted down in tears. I hate this for her. I can't imagine having to face things that I am absolutely terrified of every single day, without having anyone else or even myself understand these fears. I wish I knew the best way to help her through this.<br />
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Health wise, Isabella is doing reasonably well lately. Somehow we have dodged the respiratory flu so far this winter, but she has gotten hit with frequent colds that have turned into pretty nasty ear infections, three of which have perforated her ear drums. She is scheduled for surgery to insert another set of ear tubes on Monday. I'm kind of bummed about this because for years it seemed like the horrors of the recurrent ear infections were behind us, but now that doesn't seem to be the case. My biggest worry surrounding this is her hearing. We've determined in the past year that her hearing isn't great... in fact it's bad enough in her left ear to warrant a CT scan next month to see if there is a surgery that can be done on the bones in her ear and head to somehow improve her hearing. If this doesn't seem to be an option for her, she will get hearing aides. I know that such frequent damage to her ear drums from the infections is only making matters worse, and I am noticing how poor her hearing is getting lately when I am trying to get her attention. I really hope that in one way or another we can fix this.</div>
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But overall, compared to last winter, she is tolerating illnesses as well as can be expected. Last winter her immune system really took a beating. One illness in particular (although what it was, I'm not sure... some virus turned very ugly) had me remembering days of her toddler-hood where her usually bright and smiling eyes were glassy and helpless. She was completely couch bound for ten days, and didn't even have the energy to walk herself to the bathroom, so we carried her. Although she required three different doctor visits and a night in the ER, luckily she wasn't admitted for a lengthy stay at the hospital. When Noah caught the same bug the following week, I prepared myself for another sleepless half of a month of nursing him back to health, but in typical Noah fashion, he recovered in two days. It's times like those that I resent Kabuki syndrome and what it does to Isabella's immune system.</div>
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Kabuki syndrome had already pissed me off a few other times last winter. In January her geneticist called and told me her spinal x rays showed that she had scoliosis, and not a mild case of it either. She thought it looked to be an 18 degree curve, which in a child Isabella's age is pretty significant. Later, at an appointment with a pediatric spinal specialist, we learned that it was actually closer to a 23 degree curve, but luckily spanned the length of her entire spine, making it's effects mild at the moment. So, for now, we watch and wait to see if it worsens and we go back for follow up appointments every 6 months. Surprisingly, with all of the many developmental and medical issues she has had, this one seemed to hit Nik the hardest. I even caught him Googling scoliosis treatments, which, if you know my husband, is totally not like him. But, in typical Isabella fashion, another diagnosis is not slowing her down a bit, which once again helps us to get through it all.<br />
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We also were discussing with her ENT the possibility of doing a surgery to repair her submucosal cleft palate and velopharyngeal insufficiency, but we have decided to put that on hold for now. Her speech has come so far in the past two years, and especially since she has started kindergarten, and recovering from a surgical procedure which would change the anatomy of her mouth and palate would require her to relearn how to make certain speech sounds. When she speaks now, air escapes out of her nose, which results in a nasally sound to her voice, but with that closed off, her speech would be almost incomprehensible (which we realized when she was completely stuffed up with that ugly virus last winter... we actually thought she may have had a stroke because her speech was so affected... turns out she just can't form sounds when her nose is blocked off from her throat. Which is exactly what the surgery would do).</div>
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She's working so hard at the things she knows she is behind on... and her just realizing that it's important to me for her to work on these things makes me so proud. Especially when it comes to making eye contact and looking at cameras... Enter: The Lean Head Toward Camera and Stare Directly At It Face:</div>
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It cracks me up. Between this and her scrunchy face, she takes the most ridiculous pictures, but to see her trying so hard to look at the camera for an extended period of time, something that is so hard for her, makes me love these pictures more than any other I could possibly take of her!</div>
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So there it is, the extremely condensed version of what has been happening in the past 15 months. Although I'm still experiencing severe writer's block, I am going to make more of an effort to update more frequently -- these kids are growing up way too fast for me not to document as much of this amazing time as I can!</div>
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<br />Mikaelahttp://www.blogger.com/profile/04299699527313278772noreply@blogger.com1tag:blogger.com,1999:blog-6664505081414281499.post-24635071572184136622011-11-14T21:12:00.000-05:002011-11-14T21:12:52.715-05:00The Fifth Candle<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiV69piYzIbeILW52nW2i2LTILpLUwEHPWim4C9oJ6AyQXbAU-x7zHRIC8icZiH_OoypXQH8KkScSVy1bigJFuMPOoJjX8AnrwHLguTvptrRwG4nR1qab8SKEvm4oFY3A4tlm6ccau4y6s/s1600/2011-11-04_07.31.05.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320px" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiV69piYzIbeILW52nW2i2LTILpLUwEHPWim4C9oJ6AyQXbAU-x7zHRIC8icZiH_OoypXQH8KkScSVy1bigJFuMPOoJjX8AnrwHLguTvptrRwG4nR1qab8SKEvm4oFY3A4tlm6ccau4y6s/s320/2011-11-04_07.31.05.jpg" width="240px" /></a></div><br />
My daughter turned five a week and a half ago. <br />
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Five.<br />
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There are still times when I find myself looking through racks at clothing stores and picking out clothes for her in a size 2T. And then it hits me. She is growing up. She hasn't worn a 2T in two years. And now she is five. A weight lands on my chest and my eyes start to burn. Five. How did this happen?<br />
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Shortly after we brought Isabella home from a lengthy and serious hospital stay when she was 2 and a half, I went to check on her in her bed a few hours after she fell asleep. It was late, and very dark, and emotionally, I was not doing well. I sat down on the floor next to her bed and held her hand while I watched her chest rise and fall. I pretended to brush a curl off of her head while I really checked (for the hundredth time) for a fever. <br />
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Fear and exhaustion were eating me alive, and I realized that the biggest fear that I had was that she could leave us at any time, and I would be left here, without her to worry about. That thought sent me into a tailspin, and I started to cry. Nik came in and knelt down behind me, hugging my back as he wordlessly stared at our sleeping baby.<br />
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"I am so afraid that she isn't meant to be here for long." I whispered.<br />
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And all he said was "I know."<br />
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We both cried, unmoving on her floor for a long time, because we knew that a lifetime of worry would be worth every extra second, every smile, every breath that she could give us. Yet there we were, guaranteed nothing but the moment we were in, which was horrifying and beautiful, endless and fleeting.<br />
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Now she is five. Not a baby, less a toddler, more a "kid". She is miraculous: exceeding expectations, living fully, and unbelievably happy. I wish I could go back and count the wishes I've made since she was born, because the number of those that have come true is a miracle, too.<br />
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I have not journeyed far enough away from those dark days to not be grateful for every moment that I get to worry about her. It is a gift that attaches itself to me heavily, slowing me down and making every moment alive with emotion, while simultaneously setting me free to see every second as a wish come true, something to celebrate, the miracle that it is.<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhf1tfiEedKdLySkFfSAenceEoP8v8pHiZwIX5KEmE6bJ8fEt-Cb1touu-wfUtBcbbsKMFtx_ZMJVeDKGm-Ie-lSfdlYPxEJ7F8x2kwvw3xLQHkwgnsj2__Ei_VwOC69zcfdQMr3KNGkTY/s1600/2011-11-04_08.13.50.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320px" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhf1tfiEedKdLySkFfSAenceEoP8v8pHiZwIX5KEmE6bJ8fEt-Cb1touu-wfUtBcbbsKMFtx_ZMJVeDKGm-Ie-lSfdlYPxEJ7F8x2kwvw3xLQHkwgnsj2__Ei_VwOC69zcfdQMr3KNGkTY/s320/2011-11-04_08.13.50.jpg" width="240px" /></a></div><br />
Every year on her birthdays past I have blown out her candles for her, making two wishes as I close my eyes. One wish: to be blessed with another day to worry about her, and the other: that someday soon she herself would blow out her candle with a wish of her own.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi58Im1e6MHN3vOiyqkreudOFnTpy4DBJAQTIXcdkEMYWenT22NzpM0mwVgBWD3XJbXHz1VLBpeA9DzgwOIhs2CZykWFjNOIxeIHAfcZJ6JKmz5Ks6c52cQpmWrDt3rBrlC7A6wE771M1w/s1600/2011-11-04_07.31.34.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320px" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi58Im1e6MHN3vOiyqkreudOFnTpy4DBJAQTIXcdkEMYWenT22NzpM0mwVgBWD3XJbXHz1VLBpeA9DzgwOIhs2CZykWFjNOIxeIHAfcZJ6JKmz5Ks6c52cQpmWrDt3rBrlC7A6wE771M1w/s320/2011-11-04_07.31.34.jpg" width="240px" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><em><span style="font-size: xx-small;">Make a wish, sweet girl</span></em></td></tr>
</tbody></table>On her fifth birthday we celebrated her beautiful birth, her beautiful life, and her beautiful future. We sang, with her round face lit up by the single flame of her number 5 candle. When we were done, we told her to make a wish. She looked down, lowered her eyelids, and smiled slightly. After one practice puff, she inhaled again, determined. And then, as if she had been doing it on her own forever, she extinguished the flame of her fifth year on earth and looked up with eyes wide with pride and a shy smile. She looked <i>right at me</i> for the briefest of moments, and I knew that this girl of mine is ready to be five, even if I am not. <br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhV7FOdlQCQrl3-RKTXs7fPEeF_AGLzKzTR8-UxKjqFzb8-YPZY-tAlyT59lJlNrYti55hyphenhyphenYGK4ZM_t0X-uK8uT_osRRL6QKP0UuCZyuIG7C9xyzM9NFQLrxec8rUu_6-9q3h8jpstGae4/s1600/2011-11-04_20.41.00.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320px" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhV7FOdlQCQrl3-RKTXs7fPEeF_AGLzKzTR8-UxKjqFzb8-YPZY-tAlyT59lJlNrYti55hyphenhyphenYGK4ZM_t0X-uK8uT_osRRL6QKP0UuCZyuIG7C9xyzM9NFQLrxec8rUu_6-9q3h8jpstGae4/s320/2011-11-04_20.41.00.jpg" width="240px" /></a></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhb6XG1knBiwEZWNrnzgVyRYaGzpMqt75sfeAMYzAkY8Vu0zqziIs2XvYKH1F1GJiecdvwUuj2Y-dVQ1UrQuxd3VtNcpBELgoe3BvsPlELM9gGd-dDELlbeFlNWt1mpibfQ_IwZuB6ObbA/s1600/2011-11-04_20.41.07.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320px" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhb6XG1knBiwEZWNrnzgVyRYaGzpMqt75sfeAMYzAkY8Vu0zqziIs2XvYKH1F1GJiecdvwUuj2Y-dVQ1UrQuxd3VtNcpBELgoe3BvsPlELM9gGd-dDELlbeFlNWt1mpibfQ_IwZuB6ObbA/s320/2011-11-04_20.41.07.jpg" width="240px" /></a></div><br />
I will forever hold on to her fifth birthday candle, the first that she blew out on her own. The one that will always remind me of the day she made a wish for herself, and granted a wish for me.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifBZiNYJw9uPvxSa1TDaXo16cY3NyIVPjBmZ7AQ-bZtToBc5bqy_GtaDpYBNXVk3pebeoi5p8jEdIstJGg5kHqzpUnfq72y2QY7XcIDI7i3T36PnJ_Ckkou027TwMbRK4eSY7JzSzqr-A/s1600/2011-11-04_08.13.44.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320px" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifBZiNYJw9uPvxSa1TDaXo16cY3NyIVPjBmZ7AQ-bZtToBc5bqy_GtaDpYBNXVk3pebeoi5p8jEdIstJGg5kHqzpUnfq72y2QY7XcIDI7i3T36PnJ_Ckkou027TwMbRK4eSY7JzSzqr-A/s320/2011-11-04_08.13.44.jpg" width="240px" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Happy Birthday, sweet Bells. Always remember to wish hard....</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLnMhlcPoSDMulLPKpwCddzC4oW2G8YldZfK4uo10bdepNZsJu4X8gVT0ha1-giyMrxTxElzBVOka9YacehvSPokLfeVSqRW6aVdkjiejVZLEOVu_WfNqVz8cIVitW9OBWEro-IsdphDQ/s1600/2011-11-04_08.14.20.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320px" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLnMhlcPoSDMulLPKpwCddzC4oW2G8YldZfK4uo10bdepNZsJu4X8gVT0ha1-giyMrxTxElzBVOka9YacehvSPokLfeVSqRW6aVdkjiejVZLEOVu_WfNqVz8cIVitW9OBWEro-IsdphDQ/s320/2011-11-04_08.14.20.jpg" width="240px" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">....and to celebrate harder.</td></tr>
</tbody></table>Mikaelahttp://www.blogger.com/profile/04299699527313278772noreply@blogger.com1tag:blogger.com,1999:blog-6664505081414281499.post-22027746872010355302011-11-07T12:20:00.004-05:002011-11-07T15:47:41.241-05:00The Gifting TreeWe have a tree on our tree lawn right in front of our house that I love. It is the perfect size, and the branches are full with beautiful leaves that give the tree the perfect shape. It helps to block the hot rays of the morning sun in the summer, and in the winter the frozen branches perfectly support the freshly fallen snow to make the most beautiful scene out of the frame of our window. <br />
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Every October all of the trees on our street are well into their fall transformation. The leaves on our neighbor's trees burn brightly with the autumnal colors of the season before their edges start to curl and darken and they flutter to the ground. By Halloween, most of the trees are half bare and have lost the charm of a freshly changing season.<br />
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But our tree is different. While our street is lined with oranges and reds, our sweet tree still holds it's green leaves, even weeks after the other's have changed. Standing straight among all of the colorful trees, our tree looks young and odd but strong and independent.<br />
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The tree starts to change eventually. It always starts with a few yellow leaves sprinkled in amongst the green, and then the yellow turns to a light orange. Before long, the tree looks like it is at it's peak of color change, and the leaves almost start to look dull and brown at the edges. Every year I look at that tree and for a split second I think about how I am slightly disappointed that the fall colors it displays aren't as intense as the trees around it were weeks ago, and that it only looks yellow for a few days before it looks like it will drop all of it's leaves at once and be done with it's yearly chance to shine. <br />
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And then, as quickly as that thought came, it is gone. Because this tree of ours isn't done yet.<br />
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Isabella wakes up on her birthday every year to a bright pink, unbelievably gorgeous tree. It is the most intense color I've ever seen in nature, and the color change seems to happen over night. It never fails to gift her of this every year, and every year it takes my breath away. <br />
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It reminds me that all things have their own timeline in life, and though some things don't follow the typical path, they too are beautiful and worthy of our patience and our unbridled appreciation. I love that tree even more because it is different and unique; it makes us wait longer for it's gift, but I treasure that gift all the more because of it. <br />
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And anyway, when is a better time to give this gift than a sweet girl's birthday?<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjc0eRAoHhhTaaQBm4iEAlaPYg681oKIzQbCwoegrL73G_QV4mhgQIBlSKjTOvRYaSimH07cidKzu25UCaT0xulluuSt01gFkAp34t5MBfap3iSfs5g0nD_s_0SBZ2BPCqIwdv-tdQpI-o/s1600/tree+3.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320px" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjc0eRAoHhhTaaQBm4iEAlaPYg681oKIzQbCwoegrL73G_QV4mhgQIBlSKjTOvRYaSimH07cidKzu25UCaT0xulluuSt01gFkAp34t5MBfap3iSfs5g0nD_s_0SBZ2BPCqIwdv-tdQpI-o/s320/tree+3.jpg" width="240px" /></a></div><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipUgdMPPCBIVbH98WnAYu4ohUY15y1QbPYJU0DUfCxG4lZT9d7VsXzZigr3Sb40VmVE0AijxU0b4GShRxHAI8Nsn0mAI_DiCxn9YqobaODy9luWgyYWX5C7X6_2FzVxiUOz8oZfWDrRA0/s1600/tree.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320px" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipUgdMPPCBIVbH98WnAYu4ohUY15y1QbPYJU0DUfCxG4lZT9d7VsXzZigr3Sb40VmVE0AijxU0b4GShRxHAI8Nsn0mAI_DiCxn9YqobaODy9luWgyYWX5C7X6_2FzVxiUOz8oZfWDrRA0/s320/tree.jpg" width="240px" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">(These were taken 4 days after her birthday, so it is less full and pink than it typically is.)</td></tr>
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A post on the newly turned 5 year old is coming soon. Promise :)Mikaelahttp://www.blogger.com/profile/04299699527313278772noreply@blogger.com0tag:blogger.com,1999:blog-6664505081414281499.post-35611858085321923382011-09-30T07:25:00.000-04:002011-09-30T07:25:30.344-04:00Special Needs SpotlightDo you guys know my blog friend, <a href="http://wearetheraddest.blogspot.com/2011/09/special-needs-spotlight_30.html">Miggy</a>? If not, let me introduce you.<br />
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Miggy is a creative and funny mom of two who writes one of my favorite blogs out there, <a href="http://www.wearetheraddest.blogspot.com/">This Little Miggy Stayed Home.</a> She has two gorgeous girls who have the two most gorgeous dimples in their chins I have ever seen. She is lucky I don't live closer to her, because I would for sure come over all the time just to randomly kiss those sweet little dimples. And as we have never actually met in real life, that might get a little awkward.<br />
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Anywho, Miggy's youngest daughter was born with a condition called microgastria and limb reduction complex. But as Miggy so truthfully put, "coincidentally, she was also born with extra awesomeness".<br />
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Migs decided to dedicate Fridays on her blog to spotlight other families who have a story to tell about having a child living with special needs, and this week <a href="http://wearetheraddest.blogspot.com/2011/09/special-needs-spotlight_30.html">I am guest blogging over at Miggy's</a>. <br />
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Please stop by and read my spotlight. But don't stop there, you are sure to fall in love with Miggy's family just as I did.<br />
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Click <a href="http://wearetheraddest.blogspot.com/2011/09/special-needs-spotlight_30.html">here</a> to read my spotlight!<br />
Click <a href="http://www.wearetheraddest.blogspot.com/">here</a> to read more about Miggy and her family!<br />
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Thanks to Miggy for inviting me to be a part of this!Mikaelahttp://www.blogger.com/profile/04299699527313278772noreply@blogger.com0tag:blogger.com,1999:blog-6664505081414281499.post-68444076459728738292011-08-17T18:37:00.000-04:002011-08-17T18:37:40.302-04:00FearI had a doctor's appointment today, and so for one of the first times since I got Isabella's confirmation of Kabuki Syndrome, I was alone for a few hours with my thoughts. <br />
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I have a lot to update on, and I have been planning on writing a blog post all week about what is going on with Isabella lately, and how wonderfully she is doing with all of her therapies and how excited she is to start school. I also have a whole post worth of updates on how her follow up with the geneticist went last week, and how emotionally wrecked I have been lately. <br />
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But today has been rough. And so, those posts will have to wait for another day (week?!) because today I already have two separate issues that are killing me inside. <br />
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While I was driving to my appointment today I thought I would be emotional, and I even allowed myself to have extra time before my appointment in case my thoughts from the past few weeks made weepy. But as I was driving, all I could think about was how beautiful it was out, and how lucky I felt to have my kids, and how much I couldn't wait to get home to them so we could have a fun afternoon while daddy was home for the day.<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsPy9_-Z8b2zZL9qVzVOQqwanK7OjUIr9fsuP1i4DfBLlHbKTtk87w_m-VDz-_HfokKwByDdno7YgNXX5VULWeqWSsXaNPSYRsc61mTtPH_Mn7f9jh4s6pKFtFbpcuqX959C2ywQX0Y74/s1600/2011-08-13_20.32.33.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320px" naa="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsPy9_-Z8b2zZL9qVzVOQqwanK7OjUIr9fsuP1i4DfBLlHbKTtk87w_m-VDz-_HfokKwByDdno7YgNXX5VULWeqWSsXaNPSYRsc61mTtPH_Mn7f9jh4s6pKFtFbpcuqX959C2ywQX0Y74/s320/2011-08-13_20.32.33.jpg" width="240px" /></a></div><div class="separator" style="clear: both; text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYORDJezW6FEIRgtjtNDNxgkr2I1fFWONBC0Vu51n607aNzpsct-_xx__zIMaGPvAzGAxoqmZI738qOwfa7lgP7umwUio7Aatg_ae9dt2wd21N8mHaUPRE-x0qwjqYDUbZ5KGHn2Juijc/s1600/2011-08-14_14.40.00.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320px" naa="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYORDJezW6FEIRgtjtNDNxgkr2I1fFWONBC0Vu51n607aNzpsct-_xx__zIMaGPvAzGAxoqmZI738qOwfa7lgP7umwUio7Aatg_ae9dt2wd21N8mHaUPRE-x0qwjqYDUbZ5KGHn2Juijc/s320/2011-08-14_14.40.00.jpg" width="240px" /></a></div><div class="separator" style="clear: both; text-align: center;"><br />
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I got to the doctor's office and told the woman at the desk my name to check in. She looked at me funny for a minute and said "you are my neighbor." She didn't look familiar to me, so she explained which house she lived in (a street over from us) and how she was the one who ran and got a band aid for us one time when we were taking a walk and Isabella fell and skinned her knee. I remembered her then, and I remembered how after she got her the band aid and a wet cloth to clean up her scrape I walked away thinking about how wonderful it was that we live in a community where neighbors truly help one another.<br />
<br />
The woman and I started chatting for a minute once I realized who she was. She asked about Isabella, and how old she is. When I told her she was nearly 5, she asked if we were going to be putting her in preschool this year. I told her yes, that actually this will be her third year of preschool already. She said she also has a daughter who will be five the month after Isabella.<br />
<br />
When I asked her if she too would be starting preschool soon, she huffed and gave me a pouty face.<br />
<br />
"Yeah, I guess," she told me.<br />
<br />
"You aren't excited about her starting? I bet she will love it!" I responded.<br />
<br />
"No, I want her to start" she said, "but she will be in the Tri-County preschool program. You know. The one where all the kids have those IPA's or whatever."<br />
<br />
I knew what she meant. But I acted like I didn't. "IPAs?" I asked<br />
<br />
"Yeah, you know. The special ed kids?"<br />
<br />
"IEPs?" I offered. <br />
<br />
"Yeah, that's what it is. IEP. I'm just not really excited that she will be in that preschool."<br />
<br />
IEP: Individualized Education Program. An individualized plan to provide for the educational needs of children with disabilities. <br />
<br />
She doesn't want her kid to be in the same classroom as "those kids".<br />
<br />
I can't believe I remained as calm as I did looking back. I could feel the blood rushing around in my ears and I just wanted to go sit down in the waiting area, but I knew I would regret not saying something to her about it later. <br />
<br />
"What are you worried about with her being in a classroom with children who have an IEP?"<br />
<br />
"Oh, I don't know. I don't want to seem like she's above them or something. I just don't want her to be bored," she replied.<br />
<br />
I told her that I highly doubted that her daughter would be bored in any preschool classroom, as it is <em>preschool</em> after all. I told her that my daughter is also in a classroom that is integrated with kids who both have and do not have an IEP, and as a parent who goes to every field trip and every school event, that I couldn't believe the progress that I observed <em>every</em> kid in the classroom had made since Isabella started school, weeks before her third birthday.<br />
<br />
I told her that the IEPs are INDIVIDUALIZED for the student who needs them, so that the entire classroom would not be affected by the special needs of one child. I told her how lucky her daughter is to be able to be in this particular classroom setting, as she will learn empathy and compassion for others, and will likely not even think the differences between herself and her classmates amount to much of a difference at all. I told her how wonderful it will be for her to get to know and feel comfortable around kids who have special needs now when she is so young so that she can learn not to fear or avoid them later. <br />
<br />
The woman smiled and said "oh, thanks for the information." But I don't think I reached her at all. <br />
<br />
So I sat down in the waiting room and have since spent the entire rest of the day dwelling on the fact that I was blindsided by this. I was sure that I had thought of every possible scenario where Isabella might be discriminated against in her future, and somehow I didn't even <em>think</em> that it would be the PARENTS of the children her age that wouldn't want the likes of her to be included in the classroom. I know that kids might make fun of her and teachers might get frustrated with her and that she might feel different just because she needs an aid or therapists throughout her schooling, but I failed to realize that we might have an entirely separate fight on our hands when it comes to having her mainstreamed into a regular classroom at all. I know that other parents cannot prevent her from being in a particular classroom, but if they have a strong enough opinion about it, they will certainly influence their children's view on accepting, including, embracing and helping my child, and many other children who might be different from them. And this makes me incredibly sad. I keep trying to remind myself that we are in the times of forward progress, and to thank heavens that we aren't living 50 years ago because doctors would want to institutionalize many kids who have special needs, but when things like this happen it makes me think that maybe we aren't really moving forward so much after all. I mean, people would <em>say </em>that they are for equality and justice for all, but when it comes down to it, that thought gets negated by the fact that their kid might have to share a classroom with a child who is physically, or worse: mentally handicapped.<br />
<br />
To make matters worse, when I got home I had a voicemail from this woman telling me that the results of my not so routine mammogram were slightly abnormal, and could I please call her back. So I had to rely on her to give me information about what is and isn't normal about my scans, and had to rely on her to tell me "not to worry too much" while I wait 6 months to get another Xray and ultrasound, and to "try to enjoy the rest of my day."<br />
<br />
Coming from her, it wasn't much consolation. <br />
<br />
I am afraid for Isabella. And I am afraid for me.<br />
<br />
UGH!! I dread the day when our girls start kindergarten together and she realizes that my kid is one of "those" kids that might make school boring for her kid. It seems like we are already opening the doors of kindergarten with our arms swinging in battle, and we haven't even started preschool this year yet. I hate realizing that most of the suffering that Isabella and our family will endure will have less to do with Kabuki Syndrome itself and more to do with society's standards for what is acceptable, normal, lovable and desired. When it comes to having a definite label for her, I am worried that it will now be a double edged sword. While it might open the door for opportunities in services for her (which I am seriously questioning will actually happen), it might actually place her yet another step away from "normalcy" just because there is a name behind all of her differences.<br />
<br />
There is a quote by Kathie Snow in her book <em>Disability is</em> <em>Natural </em>(which I have not yet read) that is really powerful:<br />
<br />
"Your belief in your child and his potential has a greater influence over his success than his disability."<br />
<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhgHOgLtpNMfe7zXMRUVQool2Ev11k8ufU68ycOaBASZQZIYJShf5UMaAzJ4AlLCTAMx-GK0mDyz-AH9dDfNnhTL-v-RXwtcY-QryNxbHwsefva70LxGlp7OrKa44u05w2PrcVOBTyg81A/s1600/2011-08-11_19.04.07.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320px" naa="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhgHOgLtpNMfe7zXMRUVQool2Ev11k8ufU68ycOaBASZQZIYJShf5UMaAzJ4AlLCTAMx-GK0mDyz-AH9dDfNnhTL-v-RXwtcY-QryNxbHwsefva70LxGlp7OrKa44u05w2PrcVOBTyg81A/s320/2011-08-11_19.04.07.jpg" width="240px" /></a></div><br />
Can you imagine how influential to success it would be to have <em>society</em> believe in my child and her potential?<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWmruISJuFKspzS_k18kJj9XDyQxvQxsaAG_YrMxJTF3eaOQ_jJft_Ky_oO7JZ1yminJYpoDnKqueXxgfJtNUbQ3dpBQKgFsqn-R-azAh2sfbxEhMEBZSTn2_v5U0SMnW-6hCdGA7rkBk/s1600/2011-08-14_14.45.15.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240px" naa="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWmruISJuFKspzS_k18kJj9XDyQxvQxsaAG_YrMxJTF3eaOQ_jJft_Ky_oO7JZ1yminJYpoDnKqueXxgfJtNUbQ3dpBQKgFsqn-R-azAh2sfbxEhMEBZSTn2_v5U0SMnW-6hCdGA7rkBk/s320/2011-08-14_14.45.15.jpg" width="320px" /></a></div>Mikaelahttp://www.blogger.com/profile/04299699527313278772noreply@blogger.com5tag:blogger.com,1999:blog-6664505081414281499.post-52599286211265186392011-08-10T17:45:00.001-04:002011-08-10T17:51:35.237-04:00Let's Be HonestFor the past 4 and a half years, one of the things I've wanted most in life was a diagnosis for my daughter. Even when I was in denial and I knew I wasn't ready for one, I searched. I watched my baby as she worked so hard to reach her milestones, all while being so sick and weak, and I knew that I would never be at peace until I knew why she was struggling so much.<br />
<br />
Three neurologists, 2 ENTs, a rheumatologist, a cardiologist, an opthamologist, a geneticist, 3 speech and language pathologists, 3 physical therapists, 2 occupational therapists, and numerous other doctors and specialists later, we were more sure than ever that something was wrong.<br />
<br />
4 Chromosomal anaylis' and FISH tests, a spinal tap, X-rays, cat scans, heart echos, an EKG, a sedated hearing test, ear tube surgery, urine and stool analysis, a swallow study, a sleep apnea study, a VCUG, renal ultrasounds, metabolic workups, and an unbelievable amount of blood work later, and we still didn't have any definite answers.<br />
<br />
Virus after virus, ear infection after ear infection, she suffered. Rotovirus, bouts of croup, dehydration, UTI, kidney infection, bronchitis, pneumonia, HFM, viral meningitis, seizures, 5 hospitalizations and upwards of 10 ER visits later and I was desperate for a reason why.<br />
<br />
At different points along the way, I was SURE we were close to a diagnosis. Velo-cardio-facial, Raynaud's Syndrome, mosaic Down Syndrome, and severe dyspraxia were just a few of many avenues explored. I mourned the possibility of each of these diagnosis' deeply until, once again, tests would reveal nothing. I hit rock bottom when a neurologist told me she thought she had a mitochondrial disorder, only to have another neurologist say a few months later that he thought she might have something else.<br />
<br />
Finally, in March, when all other doctors had thrown up their hands, and all possible referrals to specialists had been exhausted, her geneticist mentioned Kabuki Syndrome. <br />
<br />
And for a minute, for the first time since the day she was born, I felt like I could breathe again. I finally had a glimmer of hope that, if her blood work confirmed this diagnosis, she wouldn't be a medical mystery any longer. I could stop researching and finally know that she had a definite answer for each of her symptoms, and it wasn't something that would kill her. I reached out and connected with other Kabuki families around the world, and I didn't feel so alone anymore.<br />
<br />
I saw the hope that a diagnosis would bring us, and I prayed endlessly for a positive result to the genetic test. A diagnosis would mean I had a concrete explanation to give her someday when she wonders about why she is different. A diagnosis would mean she wasn't suffering from something worse, something progressive. It would mean we would know that we had been doing everything we could to help her all along, and we could stop worrying that there was something more this whole time that we should have been doing to make her better. It would mean she would have others out there that are like her, and we could go to them and their families with our questions and our need for support. It would mean we would know a little more about what to expect for her future, and we could watch and plan for future medical issues. It would mean I could raise awareness for something, and maybe help another family who was searching for answers find the path to a diagnosis. It would mean I could have more children, and not worry that they could potentially suffer like my Bells has.<br />
<br />
A diagnosis for Isabella would mean everything.<br />
<br />
When the geneticist called Tuesday morning with the news I had waited so long for, the relief that I had expected to feel was there. But what I didn't realize was that in my planning for receiving this diagnosis, I didn't leave room for any other emotion. I thought the relief would wash the emotions of the past 4 and a half years away, and we would be only happy.<br />
<br />
Being told of and accepting the <i>possibility </i>of a syndrome and actually having a proven diagnosis for your child are two very different things. I was not at all prepared for the flood of feelings that arrived after the initial shock of her diagnosis wore off.<br />
<br />
I am sad. I am mad. I am scared. I am uncertain, and I am worried. Although I am not in denial, I cannot believe it.<br />
<br />
My daughter has a syndrome. My baby has a genetic mutation. My Isabella has Kabuki Syndrome.<br />
<br />
In all of these years of wanting a diagnosis for her, I am realizing that it is only because I knew there was a syndrome there to be found. Instead of allowing myself to feel the sadness for what I knew was obviously there, I chose to dive head first into fighting for answers, even if it left me feeling anxious and sick inside instead. I knew I could not have functioned if I was crying all day.<br />
<br />
Now we have our answer. And I am still anxious and sick inside. But I am so, so sad too.<br />
<br />
I know I asked for this diagnosis. But I never wanted this for my child. I don't want her to have to continue to struggle with things that most people take for granted. I want her to have the easiest life possible, and just having a label for her now makes that even more questionable.<br />
<br />
Looking back, it seems crazy that my reality of a dream come true is a diagnosis of a genetic syndrome for my daughter. <br />
<br />
Let's be honest. That sucks.<br />
<br />
So to lay it all out, finally having this diagnosis has been harder than I expected. Nik is doing well, but it is hitting him too. I can't even really explain why, as we knew she had something, and this is SO much better than some other syndromes and diseases she could have had, but it is just so hard to believe. I know that we will be okay, and that given a few weeks time the pain that reality sometimes brings will fade into the background of every day life. We are still raising the same beautiful and perfect child that we were before we knew which exact gene of hers was different. I am still SO grateful and relieved that we finally know. I just need a little while to come to terms with the life we have lived for the past almost five years, and to grieve the life I had planned for my child before she was born. I believe her future will be far brighter and more beautiful than anything I could have dreamed for her, and I have to have faith in that now more than ever.<br />
<br />
We have an appointment with her geneticist tomorrow, so hopefully that will bring answers to some of our fear-filled questions, and a sense of finality and closure to our lengthy search.<br />
<br />
And we will begin celebrating the joys that a tiny alteration on a tiny exon on one gene out of 25,000 has brought to our lives. <br />
<br />
We are so thankful for this girl.<br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjM2UdVP7YVYWMEooZg9A6-fNInCwYPo8DPQqHj_cF2J1OtvYnuj_ssqyKv2sy86bGORVdAkvmoOtc-UKSk05mblSadI6egmxOOHrxsh4eGlmgt_aYgtATL23b8obt91UkrTNwPkpNs02U/s1600/2011-08-09_18.22.29.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320px" naa="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjM2UdVP7YVYWMEooZg9A6-fNInCwYPo8DPQqHj_cF2J1OtvYnuj_ssqyKv2sy86bGORVdAkvmoOtc-UKSk05mblSadI6egmxOOHrxsh4eGlmgt_aYgtATL23b8obt91UkrTNwPkpNs02U/s320/2011-08-09_18.22.29.jpg" width="240px" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5Lc9IBqQIQBsoiH9apDEbpySFOwBsGQzmzY1bWYrov2gHdCumMjerlgkOAIEk0kqUVfe1-PpzsVjj3EMd6cbcwMLDTLech0I3pYMGfp-spCiv09HLivzI59x5Mlg-ta9iLIS-Ri-51ns/s1600/2011-08-09_18.26.22.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320px" naa="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5Lc9IBqQIQBsoiH9apDEbpySFOwBsGQzmzY1bWYrov2gHdCumMjerlgkOAIEk0kqUVfe1-PpzsVjj3EMd6cbcwMLDTLech0I3pYMGfp-spCiv09HLivzI59x5Mlg-ta9iLIS-Ri-51ns/s320/2011-08-09_18.26.22.jpg" width="240px" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_Gjh2OFsf9JUUZR9Ffipb9nWrA8Cg0Uhyphenhyphenmpx7Zubf0nj2h6ja3CH9yasa9atTN0_EUuYCdNvBACntEwUbdRM3U6PhF_6inO-gsGjaMINjFTIh4dFo3b2R-uzwjL42VOrqZUCm1u0Cryk/s1600/2011-08-10_10.32.52.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320px" naa="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_Gjh2OFsf9JUUZR9Ffipb9nWrA8Cg0Uhyphenhyphenmpx7Zubf0nj2h6ja3CH9yasa9atTN0_EUuYCdNvBACntEwUbdRM3U6PhF_6inO-gsGjaMINjFTIh4dFo3b2R-uzwjL42VOrqZUCm1u0Cryk/s320/2011-08-10_10.32.52.jpg" width="240px" /></a></div>Mikaelahttp://www.blogger.com/profile/04299699527313278772noreply@blogger.com1tag:blogger.com,1999:blog-6664505081414281499.post-68711025134827648722011-08-02T11:19:00.001-04:002011-08-02T22:22:15.541-04:00...And the results are in....My sweet baby girl is positive for a mutation in the MLL2 gene (specifically exon 48). <br />
<br />
Isabella has Kabuki Syndrome.Mikaelahttp://www.blogger.com/profile/04299699527313278772noreply@blogger.com0tag:blogger.com,1999:blog-6664505081414281499.post-53103753123425630052011-07-19T18:05:00.000-04:002011-07-19T18:05:17.774-04:00Backwards<strong>back*wards</strong> (adj.)<br />
<br />
<span style="font-size: x-small;">1. Directed or facing toward the back or rear</span><br />
<span style="font-size: x-small;">2. Done or arranged in a manner or order that is opposite to previous occurrence or normal use</span><br />
<span style="font-size: x-small;">3. Behind others in progress or development </span><br />
<span style="font-size: x-small;">(adv.)</span><br />
<span style="font-size: x-small;">4. Toward a worse or less advanced condition or state</span><br />
<span style="font-size: x-small;">(The American Heritage Dictionary of the English Language, 4th Edition)</span><br />
<br />
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<div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9tDOkaXHRkJnx80l3EJag1L1rlJ2D7n-yeuBZipSB7_YOf55IhF1sc8qNXotLjSkmBDOOxpEB7jZyJzEeEWNxjUNeR3FlRXpjE9xzDOctzBWA7fDoJF699-_2JhAByfZNlCo7SnBJB8w/s1600/2011-07-19_12.11.24.jpg" imageanchor="1" style="clear: left; cssfloat: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="200px" m$="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9tDOkaXHRkJnx80l3EJag1L1rlJ2D7n-yeuBZipSB7_YOf55IhF1sc8qNXotLjSkmBDOOxpEB7jZyJzEeEWNxjUNeR3FlRXpjE9xzDOctzBWA7fDoJF699-_2JhAByfZNlCo7SnBJB8w/s200/2011-07-19_12.11.24.jpg" width="150px" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzT2jf_Ic5M-_7Ls144Ey_joCNH5IUUPv8K05ePU1mp1DWZjvtd0FWXzhLPS1lHdJ7_FRbIKOIiEtb8ki2KP3S5-BnpO3Np38TeC33qg5yTYSExIppD2A-xkGnCBGeoMR0TwQnPcMgo8w/s1600/2011-07-19_12.18.30.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="200px" m$="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzT2jf_Ic5M-_7Ls144Ey_joCNH5IUUPv8K05ePU1mp1DWZjvtd0FWXzhLPS1lHdJ7_FRbIKOIiEtb8ki2KP3S5-BnpO3Np38TeC33qg5yTYSExIppD2A-xkGnCBGeoMR0TwQnPcMgo8w/s200/2011-07-19_12.18.30.jpg" width="150px" /></a></div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><br />
</div><div class="" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: left;">We were at the checkout line at the grocery store on Sunday when a man I recognized as the store's greeter walked by our aisle. While I was paying, Isabella was sitting in the front of the cart, softly singing to herself. The man stopped at the end of our line and tried to say hello to Noah, who ignored him. I offered the man an apologetic smile, and started to turn away. </div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: left;"><br />
</div><div class="" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: left;">The man bent lower to Isabella and said to her "Hello young lady." She stopped singing, raised her head and looked at the man with curious eyes. The man looked back at her closely, and then spoke to her again.</div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: left;"><br />
</div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: left;">"Ohhh. You're backwards, aren't you?"</div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: left;"><br />
</div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: left;">My heart stopped for a beat. I looked at the man who was looking at me now. "What did you say to her?" I asked him.</div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: left;"><br />
</div><div class="" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: left;">"Is your daughter a bit backwards?"</div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: left;"><br />
</div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: left;">I couldn't speak. I couldn't wrap my head around what he had just said, and for a moment, while I tried to digest that he meant what I though he had meant, I felt the lump in my throat that was restricting my speech threatening to never let me breath again.</div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: left;"><br />
</div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: left;">I looked at Isabella, who was looking down at her hands and had resumed softly singing to herself. I looked back to the man again, and then turned away from him, and left the store with my family.</div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: left;"><br />
</div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: left;">I should have educated him on the proper way to "greet" people. I should have enlightened him a bit on the world of special needs, and what is and isn't okay to say to people. But I was too stunned to react, and for that I am, in a way, grateful. Because I don't think I would have been very nice.</div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: left;"><br />
</div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: left;">We live in a world designed for right handed people with only the smallest of concessions made for those who lead with the "wrong" hand. And when the left handed are seen struggling to find ease in the day to day rituals created to make life easier for the right handed, they are mocked, misunderstood, and not respected enough to allow for time to adjust to a world that is awkward for them, a world that defines <em>different</em> as <em>wrong</em>.</div> <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqDHw22n-N9rBPWdRum8D07FkTV0ixR2upt2eqO1HlFzK38W48y6NicE15CPNTR_e97CJAVBCaLy1Tr_0dInOSBQ3yySd5RRCteu02B2eR4uHcPlxsq2hXlZw2If_XnSPNlBzZy9SUOUI/s1600/2011-05-21_15.14.29.jpg" imageanchor="1" style="clear: left; cssfloat: left; cssfloat: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="150px" m$="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjqDHw22n-N9rBPWdRum8D07FkTV0ixR2upt2eqO1HlFzK38W48y6NicE15CPNTR_e97CJAVBCaLy1Tr_0dInOSBQ3yySd5RRCteu02B2eR4uHcPlxsq2hXlZw2If_XnSPNlBzZy9SUOUI/s200/2011-05-21_15.14.29.jpg" width="200px" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: xx-small;">Although right handed, my baby lives </span><br />
<span style="font-size: xx-small;">in a world that wasn't designed for her</span></td></tr>
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjtZepVRzVok2IbXWshHx4kYbL37u7G4TYKVQNE6UvL-LnhsDmPHJvGnZJL7glacUZjSwcAYeup6G1Mxc_J-arFRhB5iU2bCIN6WaBAKWtGh_PUIynoWNokaIIcEmNN3tLN-4ijtXSDppo/s1600/2011-05-21_15.14.20.jpg" imageanchor="1" style="clear: left; cssfloat: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="150px" m$="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjtZepVRzVok2IbXWshHx4kYbL37u7G4TYKVQNE6UvL-LnhsDmPHJvGnZJL7glacUZjSwcAYeup6G1Mxc_J-arFRhB5iU2bCIN6WaBAKWtGh_PUIynoWNokaIIcEmNN3tLN-4ijtXSDppo/s200/2011-05-21_15.14.20.jpg" width="200px" /></a></div><br />
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Instead of forward progress toward finding universal respect and dignity for others who are different from us, this man's comments took us <em>all</em> backwards in time, and for a moment, I was standing alone in a packed grocery store, wondering how, despite hundreds of years of people sacrificing all they had for an ounce of respect, acceptance and love, one look into the eyes of an innocent and perfect soul could make a man, whose <em>job</em> it was to make people feel WELCOME, could instead isolate my daughter to an island named Different. A place where many forward facing people pray they never have to visit.<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_leCg8XF_Zx82V3W3S5klgxDhdH9pfsfPBDkd1qxr8u1XVF5CwmKWmnLIQvZrz73qzaK5oNk-Vyq7Cq1cwR6qPIG6ev-dPHDhb8TNuzpZC5HsmrCQ-DZ5QAhdXThl_wwM0Is28jA4R4c/s1600/collage+1.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="256px" m$="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_leCg8XF_Zx82V3W3S5klgxDhdH9pfsfPBDkd1qxr8u1XVF5CwmKWmnLIQvZrz73qzaK5oNk-Vyq7Cq1cwR6qPIG6ev-dPHDhb8TNuzpZC5HsmrCQ-DZ5QAhdXThl_wwM0Is28jA4R4c/s320/collage+1.png" width="320px" /></a></div><br />
I don't think this man meant to hurt us. I don't think he was trying to make a four year old girl wonder if she was doing something wrong just for being who she is. His words alone made clear that he was out of touch with the current politically correct terminology. But to address Isabella like this, to let it be known that his first judgement of her was based on how she looked, and that someday someone else might say something like this to her and she will be old enough to internalize it all makes me sick inside. I know not all people are this way, and that speaks for itself in the 4 and a half years we have gone without uneducated comments like these. But one man's careless observation opened the curtains for me to see the scary and cruel future that Isabella could face, and once again, my world has changed.<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgD0CuW5pvd10bm-28S0Z3lmMtRoDVx-25gjtxlCfRI_Qh_vAqN0RZDFhXfvbxVNf3gmH4jL_NsfSrdxD6AnyTByts9N5c1ZskV3EdNhoALaF4zfiQhKoYYGIRDrDM4wbKQs908mdCkuuc/s1600/collage+%25282%2529.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="256px" m$="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgD0CuW5pvd10bm-28S0Z3lmMtRoDVx-25gjtxlCfRI_Qh_vAqN0RZDFhXfvbxVNf3gmH4jL_NsfSrdxD6AnyTByts9N5c1ZskV3EdNhoALaF4zfiQhKoYYGIRDrDM4wbKQs908mdCkuuc/s320/collage+%25282%2529.png" width="320px" /></a></div><br />
Although I had thought that my acceptance of Isabella's syndrome allowed me to be rewarded with a body armor that would deflect life's cruel blows, and protect me from some of the pain that denial creates, this man taught me that instead of a solid shield, my bones of acceptance are more like ribs, designed to guard my vulnerability, but leaving empty spaces in between to allow for threatening stabs in the most tender parts of my being. No matter how educated, advocating, and <em>forward </em>we are, we are never exempt from the pain of rejection, disapproval, and not being understood. I guess I still have room in me where denial lives because part of the pain I had from this encounter was in realizing that she doesn't have an invisible disability, that the outside world <em>can</em> recognize it, and that no amount of therapy and intervention will ever completely cover up the disordered beauty that lives in her brain. And despite her rapid progress, as she ages it becomes more obvious: what was once looked at as sweet, cute, and quirky is now becoming peculiar, abnormal, and backwards.<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-JpazxxgRS2-5K8Co3WQfvS1dIWQRHhl_ZbsMhuX-Gynm2VT_Z2zzUWMLr5xsrUzLMhkIDsInZtjX-U3BwqPIZM_BWOhJLd3OcT8yvuwY9kvfUhw1C0YNC_xQiV_fzvQsm0rGXvRedJE/s1600/2011-05-25_15.15.11.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240px" m$="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-JpazxxgRS2-5K8Co3WQfvS1dIWQRHhl_ZbsMhuX-Gynm2VT_Z2zzUWMLr5xsrUzLMhkIDsInZtjX-U3BwqPIZM_BWOhJLd3OcT8yvuwY9kvfUhw1C0YNC_xQiV_fzvQsm0rGXvRedJE/s320/2011-05-25_15.15.11.jpg" width="320px" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhTAIol9SIfj5BsXueWOI0IWuehLcvvKYnpabcJHJ6T1TfQGtA58MiBPKgl1SK3Q_OW1YeZ8FVXNNesaJhPoDaH3z_328CgaxisxNAZoc4vxoDvK4L_IbHDlhjrDHAk3f0hqAsYriD5a9M/s1600/2011-07-19_12.10.46.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320px" m$="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhTAIol9SIfj5BsXueWOI0IWuehLcvvKYnpabcJHJ6T1TfQGtA58MiBPKgl1SK3Q_OW1YeZ8FVXNNesaJhPoDaH3z_328CgaxisxNAZoc4vxoDvK4L_IbHDlhjrDHAk3f0hqAsYriD5a9M/s320/2011-07-19_12.10.46.jpg" width="240px" /></a></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbrtJbNRjysDJbLgv5bPaGZw7a7VpgId71shTUn6bLwoL1w65gIcla8a3z6n-fgtWFqM0HAv37oy0Xoiiqs14Fwq73cZ9HWx7I2gO0TgsI4clyWuqiPso7VDYOdiAbsgFoMtJPtBAr7dY/s1600/2011-06-14_10.55.13.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240px" m$="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbrtJbNRjysDJbLgv5bPaGZw7a7VpgId71shTUn6bLwoL1w65gIcla8a3z6n-fgtWFqM0HAv37oy0Xoiiqs14Fwq73cZ9HWx7I2gO0TgsI4clyWuqiPso7VDYOdiAbsgFoMtJPtBAr7dY/s320/2011-06-14_10.55.13.jpg" width="320px" /></a></div><br />
At first, I was horribly offended by the terminology he used, but I decided to see how I could make sense of this once benign and now so ugly word. In some ways, Isabella <em>is</em> backwards, like a walking mirror, trying through observation to imitate things often times in an opposite manner of what comes naturally, just to keep others from noticing that she is on the other side of the glass.<br />
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<div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGV259W9t7SztXwuLQ544QFWEkZYILL_xytePS0y0OZVpiLH2EYGDYb0BZbrDAlT-V3uYutB7akyNUlJ1TQkDjb9iUY6xGUpJPiko0e-5v_cCpcXU7fi2aTTkgWOs8GRyQ443NYbMKtoc/s1600/Looking+Glass+1+%25282%2529.png" imageanchor="1" style="clear: left; cssfloat: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="512px" m$="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGV259W9t7SztXwuLQ544QFWEkZYILL_xytePS0y0OZVpiLH2EYGDYb0BZbrDAlT-V3uYutB7akyNUlJ1TQkDjb9iUY6xGUpJPiko0e-5v_cCpcXU7fi2aTTkgWOs8GRyQ443NYbMKtoc/s640/Looking+Glass+1+%25282%2529.png" width="640px" /></a></div><br />
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When we are lost, sometimes going backwards is the quickest and most logical choice to find our way back home. By being "backwards", Isabella is always one step closer to the pure innocence she had when she was created.<br />
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In this maze of life, maybe we should all try going backwards to get to our destinations. Maybe it will slow us down enough to experience all that we are missing. And if it makes us half as happy as it makes Isabella, I'd say finding the meaning of life will happen somewhere along that backwards path.<br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4Icbau4m9qWbLHbOQ1aam4pEOCxB01bmDbNci6tvW09XSckEX_zT2mTp8tpWqxFqPha7iip5c2BSak2DczI1aJ1A4Qeu9Ea0kRov371aG4Oq0vAfVaUJY6MhhFtmmsUyTYu8TGlEHGiQ/s1600/2011-07-19_12.13.55.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400px" m$="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4Icbau4m9qWbLHbOQ1aam4pEOCxB01bmDbNci6tvW09XSckEX_zT2mTp8tpWqxFqPha7iip5c2BSak2DczI1aJ1A4Qeu9Ea0kRov371aG4Oq0vAfVaUJY6MhhFtmmsUyTYu8TGlEHGiQ/s400/2011-07-19_12.13.55.jpg" width="300px" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: xx-small;">And if backwards is wrong, I'd much rather be Isabella than be "right"</span></td></tr>
</tbody></table>Mikaelahttp://www.blogger.com/profile/04299699527313278772noreply@blogger.com3tag:blogger.com,1999:blog-6664505081414281499.post-28426253650945055332011-07-13T14:15:00.000-04:002011-07-13T14:15:06.272-04:00A few summer updates...<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgS_cFz-Yk4nypfbAJCTzmuEuOOKEQzFzMy9tgZJZEasz068HkDB55qDryHyYsEJtP0BozHdqDu2LSKG-hK6SPPh77tIRbsj_64zLLETbPoAEKq2wbDwBJUm85X8TFyLaqzJnOxaOZgoRk/s1600/2011-07-06_12.32.57.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240px" m$="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgS_cFz-Yk4nypfbAJCTzmuEuOOKEQzFzMy9tgZJZEasz068HkDB55qDryHyYsEJtP0BozHdqDu2LSKG-hK6SPPh77tIRbsj_64zLLETbPoAEKq2wbDwBJUm85X8TFyLaqzJnOxaOZgoRk/s320/2011-07-06_12.32.57.jpg" width="320px" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfgQhn2stxvPcbxoMe13ojdVfVdI9qxfZIqvCiiSujiXAaDLv1ZM6xvJylaGAxfl6IeoXnMXjD6xHs3vBvjP-WjbYOfb9BRahsb8EkqCU1mPbCH3lPImPm_0JiK_nDCe9Z1ip8ieJVBek/s1600/2011-07-06_12.33.31.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240px" m$="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfgQhn2stxvPcbxoMe13ojdVfVdI9qxfZIqvCiiSujiXAaDLv1ZM6xvJylaGAxfl6IeoXnMXjD6xHs3vBvjP-WjbYOfb9BRahsb8EkqCU1mPbCH3lPImPm_0JiK_nDCe9Z1ip8ieJVBek/s320/2011-07-06_12.33.31.jpg" width="320px" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiA3O80eowQs9BUl9q4jJ28di9CeV5DCJSU73-tgODQQ9pKqF9id6kiS7OqYho31jhdH-FRGFn-Eaohnt-5rH_p0c7RMW6ZKTgD-SEuHpnESwmO0-actGM3beMMB-Ln4LxNhUX3gjArne8/s1600/2011-07-06_12.33.33.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240px" m$="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiA3O80eowQs9BUl9q4jJ28di9CeV5DCJSU73-tgODQQ9pKqF9id6kiS7OqYho31jhdH-FRGFn-Eaohnt-5rH_p0c7RMW6ZKTgD-SEuHpnESwmO0-actGM3beMMB-Ln4LxNhUX3gjArne8/s320/2011-07-06_12.33.33.jpg" width="320px" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhiTUw2SC6284peiAMmvZXMXSP5zCIFSZ08lBb31423-aIy2Md_IktvgPBeixNVuall0DXK_ItsOdA3Bd7Mnjl2_seLHh2Al6dqnthSNeQANoxbtvH9Rk0MvkjueAn3xRIiZpo6b_Siq3A/s1600/2011-07-06_12.33.38.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240px" m$="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhiTUw2SC6284peiAMmvZXMXSP5zCIFSZ08lBb31423-aIy2Md_IktvgPBeixNVuall0DXK_ItsOdA3Bd7Mnjl2_seLHh2Al6dqnthSNeQANoxbtvH9Rk0MvkjueAn3xRIiZpo6b_Siq3A/s320/2011-07-06_12.33.38.jpg" width="320px" /></a></div><div class="separator" style="clear: both; text-align: center;"><br />
</div>A summer cold has invaded our house, so we are all feeling a little crummy this week, but I actually have a few hours of alone time today, so I thought I'd post an update on what we've been up to while it's quiet. <br />
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Isabella has one week left of her summer program at school, which she loves. I think she is going to go a bit stir crazy when she realizes that she has six weeks of staying home with me before she goes back again in August. She is so clever these days though, and I am amazed by how much she understands and remembers. I was worried about having to prepare her for this change in her schedule (not attending school), but she totally gets it. She talks frequently about it now, and says multiple times a day "next year I'll have a new classroom, a new teacher, and new friends, right mama?" I often have to remind myself that she actually loves new adventures, but that I shouldn't prepare her too far in advance for them or else I hear about it endlessly until it actually happens. <br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpRjX3OeJ8YSW_-_WAD-Yo6EUg2jwQr5cg79xgmO1Iatk96u5rWeyEiA9JruWcK-sso0oBg2xj7NJeiXKxoTxNDoiWwujQhNXeUatgqDmDkN8i2i4igeOktJwgUOdo1s6gPwc8hQU58nw/s1600/2011-07-10_19.35.42.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="150px" m$="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpRjX3OeJ8YSW_-_WAD-Yo6EUg2jwQr5cg79xgmO1Iatk96u5rWeyEiA9JruWcK-sso0oBg2xj7NJeiXKxoTxNDoiWwujQhNXeUatgqDmDkN8i2i4igeOktJwgUOdo1s6gPwc8hQU58nw/s200/2011-07-10_19.35.42.jpg" width="200px" /></a></div><br />
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I realized recently that these next few weeks off with her are going to be the last time until next summer that I have weekdays with her all to myself. This past year she was in preschool three full days a week, but next year she transitions into 5 day a week preschool. This kind of hit me hard. I cherish the days where we cuddle on the couch and read books in our jammies until noon, and that these days will soon be few and far between is gut wrenching. It is one of the many signs that my baby is no longer a baby. <br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiupXKEfpqGJqFmohLJIMCx-LFO4mPpJ5crdn-rWeScdJTYM_pMUP_GmFC07h_DbX82BiqdfTTyZ4YXaKtdatYum5WHrFysM45UWferv5wagM49JAuUYFOpaeKOhboGLhZ8-JprOOOp1k8/s1600/2011-07-12_18.01.33.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="150px" m$="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiupXKEfpqGJqFmohLJIMCx-LFO4mPpJ5crdn-rWeScdJTYM_pMUP_GmFC07h_DbX82BiqdfTTyZ4YXaKtdatYum5WHrFysM45UWferv5wagM49JAuUYFOpaeKOhboGLhZ8-JprOOOp1k8/s200/2011-07-12_18.01.33.jpg" width="200px" /></a></div><div class="separator" style="clear: both; text-align: center;"><br />
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Lately I have been looking at her baby pictures and my arms actually ache from wanting to hold her infant self again. To look in those big eyes and know what I know about her now. To say I was clueless back then isn't entirely true, but I had no idea of the journey that her life would lead us on. I look back at myself holding her while I cried for her future, worried about her health, and fretted over what was causing all of her issues, and I want to go back to those days and tell myself that it will all be okay. That it already was okay. I still cry for her future. I still worry about her health. I still fret about what is causing her issues. But I know that today she is fine. And her story, while full of adventures and mountains to climb, will be beautiful. It might not be the story I would have written before I knew her, but I know that "happily ever after" will definitely be in there somewhere.<br />
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<span style="font-size: xx-small;">(Sorry for the picture overload. I am getting carried away with wanting to look at old pictures! And if anyone wants to show me a more condensed way of posting pictures on blogger so that they aren't just one long list of them, I could use all the help I can get!!)</span><br />
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She is really doing better than ever lately, which makes "happily ever after" that much more real. Her speech is improving rapidly: it is becoming more clear and she makes so much sense when she talks! She started a new therapy that combines speech and OT in a group setting with other kids, and she loves it. She has been attempting to gallop (the funniest gallop you have ever seen... she calls it "stipping" (skipping) and it is the most awkward and beautiful gross motor skill she has acquired yet). She also started a new physical therapy for the summer where she gets to swim and (hopefully) ride horses. She is working on mastering drawing circles, and she can identify most of her letters. She can even write an I, E, L, T, and H with very little help! Seeing how far she has come is a wonderful reminder that there is no limit to how far she will go.<br />
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In June she had an appointment with her neurologist, and it was by far the most positive appointment we have had with any specialist to date. He is impressed with her progress, and because he has not seen any loss of skills he doesn't think she has a progressive disease at this point. Because she is doing so well he decided that he wants to wait to do any tests that require any more sedation until either she no longer requires sedation to do the test (such as in the sedated MRI) or until her health shows us that she requires further testing. <br />
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We also saw a new ENT to determine whether she has any clefts in her palate that we weren't aware of. When her geneticist saw her last she seemed surprised that her ENT hadn't already done a scope to check for any cleft anomalies. This frustrated me to no end! The poor girl practically lived at the ENT for the first two years of her life, and after countless ear infections, ear tube surgery, and SEVERAL mentions by me that her palate seemed incredibly high and that she often refluxed out of her nose, her old ENT never investigated the possibility that something else could be wrong that was causing some of these problems. At our recent appointment with her new ENT, he told us that the muscles at the back of her palate that are supposed to close with speech and swallowing and such are very weak and probably don't close the way they are supposed to. She had a respiratory virus at the time of her appointment so he was unable to do a scope of her nose and throat, but he thought that she might in fact have a sub mucosa cleft in her palate, but that because her speech is developing, her reflux is under control, and her ear infections have diminished, surgery wouldn't be done to correct any possible openings at this time. <br />
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The other valuable thing we learned at the appointment was that this particular ENT has several patients with Kabuki Syndrome, and after looking at Isabella he told me that he wouldn't at all be surprised if Kabuki was the diagnosis that she ends up with.<br />
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At the end of the appointment the doctor listened to Isabella speak for a while and said that even though she has had a sedated hearing test (which she passed) he would like to have her hearing checked again. We were lucky enough to get an appointment that day while we were already up in Cleveland, so we went right over to the hearing test center. After a good hour and a half of testing we were told that they think she might have some mild hearing loss, but that they would want to repeat the test on a different day before they decided for sure, so we go back for another appointment with both the ENT, the Hearing Center, and a Speech Pathologist in August.<br />
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After much thought, I also decided to get Isabella's blood drawn for the Kabuki Syndrome genetic test. This was not an easy decision for me to make. First of all, we kind of had to jump through hoops to get it covered by BCMH insurance, and even after we did get it covered, I wasn't sure I wanted to have it done. As I have mentioned before, it isn't as clear as most genetic tests... a negative result doesn't mean she doesn't have Kabuki syndrome. The MLL2 gene that they are testing aids in the development of other genes, so if the MLL2 gene isn't abnormal, it could be that it had a part in mutating one of these other genes, which could result in the same set of characteristics that make up Kabuki Syndrome. The problem is that they haven't yet developed tests for these other genes (or haven't discovered exactly what genes they are?), so if the tests come back negative, we are pretty much at a stand still, and exactly where we are today: so close to fitting a diagnosis, but not yet there yet. I honestly think that she has Kabuki, and if not Kabuki, then something ridiculously similar to it. And knowing that no matter what the results are of the test, there isn't anything different we would do in her treatment plan makes me wonder if the test is worth it. But, because I am hopeful for a positive test result so that our search for answers can finally be over, we had it done. I can't believe that I am actually hoping for a positive result on a genetic test, that I am actually hoping she that she, with certainty, gets diagnosed with a syndrome. Two years ago this thought alone would make me sick inside. But I know now that there is definitely something different in her chromosomes that makes her who she is, and for so many reasons, I want to know what it is. And if being diagnosed with Kabuki Syndrome means that she won't be diagnosed with something worse, I will pray endlessly for a positive test result. <br />
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My biggest worry with getting her tested is how I will react if it comes back negative. I know I will be disappointed that we still don't have definite answers, even though in my heart I feel like I already know. Her symptoms on the spectrum of Kabuki are definitely on the mild side, and because of this, I don't have high hopes that the test will come back positive. So, in my typical fashion, I am preparing myself for the worst and stressing over it now so that it won't be as hard to deal with when the test results finally do come in.<br />
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Other than that, this summer has kept us busy! Noah continues to progress in his speech therapy, and he amazes me daily with his energy and his curiosity. I have often noticed him watching with intensity things that people do, only to find him imitating it later. Just last night, for example, he was glued to watching the All Star baseball game on TV, and today all he wants to do is throw balls and use his plastic golf club as a baseball bat. He is ALL boy, for sure. <br />
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Tonight <a href="http://www.proanofamilyadventures.blogspot.com/">Jen</a> and I have our fourth <a href="http://www.speciallovesnetwork.blogspot.com/">Special Loves Network</a> meeting, which I am really looking forward to. We have had really strong and positive feedback from many of the mom's who have attended these meetings, and I have met and become closer to so many wonderful people there. Although I admit that the Special Loves Network blog has been lacking my attention lately and needs some serious pruning, the group itself seems to need only time and a place to gather to flourish and be beneficial to all who have attended, and for that I am so grateful!<br />
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Okay, long enough post for one day, eh? That's what happens when you only update every few weeks! These love bugs are just keeping me so busy!<br />
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<div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"></div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"></div>Mikaelahttp://www.blogger.com/profile/04299699527313278772noreply@blogger.com2tag:blogger.com,1999:blog-6664505081414281499.post-18252024567356318312011-06-11T09:34:00.000-04:002011-06-11T09:34:33.671-04:00Unicorns and RainbowsHey there. Remember me? Probably not, it's been so long since I've updated. But I guess of all of my children to neglect, my Blog Baby is the most acceptable. <br />
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Wish I had a good reason for not updating. Like we took a 2 month long cruise to Alaska. Or that my hubby bought me an IPad that I have been trying to learn how to blog on. But sadly, no. Neither of those happened. I just haven't felt like it. Lame, I know. <br />
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<div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">And actually, I was laying in bed a while ago thinking, this is the best time to blog. My mind wasn't bogged down by all of the days activities yet, and the kids were still sleeping peacefully. I got up and wandered into the office where I promptly stepped on this horrible Elmo toy that we have. You know, the kind that has a button to turn on the loudest music and sounds ever heard but no off switch anywhere (how is that even approved for children's play use, I don't know, because if our children go deaf by the time they are twenty, I know who I will be suing). Anyway, I stepped on Elmo and he got mad and starting playing the guitar so loudly that I smothered him with a pillow and waited.... yup: not two seconds later I hear "MOMMY? I have to go pottttttyyyyy!" I swear she wakes up already going ninety miles an hour every day. Noah, not so much. He will wake up and then demand to lay on the couch for the next two hours while he acclimates to having his eyes open. But Bells will open her eyes and immediately start asking me what day it is, what's for breakfast, what dress can she wear, and what is "our plan" for the day. </div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">So anyway, Elmo kinda blew my opportunity to have a long, well written, therapeutic blog post for today. But now that I think about it, this is already long and I haven't even updated on anything yet, so I can't really blame Elmo. I guess I'm still just not really in the mood to whine about my anxiety and flip out on blogger that we still don't have a diagnosis. Don't start cheering about this yet, I'm sure that will all come back. But today's post will be all about Unicorns and Rainbows. Fitting, since I'm wearing the Rainbow Bright shirt that Serena got me for my Birthday this year. See:</div><br />
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<div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">Notice Elmo in the cowboy hat on the floor in the background. I really don't like that toy.</div><br />
Okay, so remember my last post? The one that was front and center on your blog list for the past two months because I've been an MIA Blogger? Well we got back our spring pictures...<br />
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Remember when I said Bells was all sweetness and smiles but refused to look at the camera? <br />
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PROOF:<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXTMy3mDtwn8TZRIth2namJAgSKqASL3bChWpWiDDmA-K2tpC1oV1XWvsBX98j_cVlKdt0m5FGgOZmv-chKmgvBpGebfdd2lAWZ0rqz1LDF7WTNn1NEDKjzUffIpG1KXznI8vkUyQZoLU/s1600/isabelcolor02.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213px" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXTMy3mDtwn8TZRIth2namJAgSKqASL3bChWpWiDDmA-K2tpC1oV1XWvsBX98j_cVlKdt0m5FGgOZmv-chKmgvBpGebfdd2lAWZ0rqz1LDF7WTNn1NEDKjzUffIpG1KXznI8vkUyQZoLU/s320/isabelcolor02.jpg" t8="true" width="320px" /></a></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
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</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">Okay, so now remember how I said that when she finally, against her will, looked at the camera the look she gave was not a "YAY, Spring Pictures!" face? </div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">PROOF:</div><br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgyD7w7NUadeWuJdiIdgPAVSiOUbYKtnhavfx1BySLuxVSzv6IW00AIKCRIh0_F_Fn19q_FLekU3LPHg921CmoFD6WscXW_suErToyGgVcxdyTA8WQZGj8Bnwb1vISGWaTROHb8E1P8v5A/s1600/isabel03.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213px" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgyD7w7NUadeWuJdiIdgPAVSiOUbYKtnhavfx1BySLuxVSzv6IW00AIKCRIh0_F_Fn19q_FLekU3LPHg921CmoFD6WscXW_suErToyGgVcxdyTA8WQZGj8Bnwb1vISGWaTROHb8E1P8v5A/s320/isabel03.jpg" t8="true" width="320px" /></a></div><br />
Also notice the red cheeks and the dark circles under her eyes. That would be the cold she started that day. The only thing missing is her snot bubbles and the drool on her chin, and our whole day would have been summarized in this one picture. But still, against all I would have thought, I love the few pictures we got. Even (especially) this one.<br />
<br />
<div class="separator" style="clear: both; text-align: center;"></div>Noah's pictures came back really pretty good too. He was such a two year old boy that day, acting crazy, running around trees and tearing up flowers. <br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHGM4FCMUSzP91Sr5xfhMCdL65WLh6VTUtIJwAlNlCmAyFPtyW-FYg1dOeZmMjWmGgFlbl70B7fN0_3QM_uCoDmaAErFbXm15ttUupbn9RBgqMwWItfIbDsBX3dIL1YenFCsG84T4uIuw/s1600/mikaelasboy02.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213px" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHGM4FCMUSzP91Sr5xfhMCdL65WLh6VTUtIJwAlNlCmAyFPtyW-FYg1dOeZmMjWmGgFlbl70B7fN0_3QM_uCoDmaAErFbXm15ttUupbn9RBgqMwWItfIbDsBX3dIL1YenFCsG84T4uIuw/s320/mikaelasboy02.jpg" t8="true" width="320px" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Who me? No, I'm a total angel.</td></tr>
</tbody></table> <table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1X6ppS4-EY-ATBJrCSsBaFUyFgDH72GZqjya5tWEmXLb69wVFf0GQgeu1N0EMS1OdFJqE7PUQ-xZqujgkRMXtN4RPxwvjtV_gvSp69HXX0WO6wwqQbcww2MeI4z6ot-hbfzM2-wA2Xps/s1600/mikaelasboy04.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213px" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1X6ppS4-EY-ATBJrCSsBaFUyFgDH72GZqjya5tWEmXLb69wVFf0GQgeu1N0EMS1OdFJqE7PUQ-xZqujgkRMXtN4RPxwvjtV_gvSp69HXX0WO6wwqQbcww2MeI4z6ot-hbfzM2-wA2Xps/s320/mikaelasboy04.jpg" t8="true" width="320px" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">He looks all innocence here, but that leaf was crumbled and thrown like confetti two seconds later.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7YWzIHK5mqTq2LF9MEKehRV10hZwivB58Lggd9-jkBR4MnDxIS3eSxJ9qnBr6NioU3-K4Z1Fj53kcPBzm8Gf7jd5o4cDJKlhCS-OXJKpzilfiR9lQnj_EQ775tIa9ujRGbFY6T6tHWKE/s1600/mikaelasboy03.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213px" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7YWzIHK5mqTq2LF9MEKehRV10hZwivB58Lggd9-jkBR4MnDxIS3eSxJ9qnBr6NioU3-K4Z1Fj53kcPBzm8Gf7jd5o4cDJKlhCS-OXJKpzilfiR9lQnj_EQ775tIa9ujRGbFY6T6tHWKE/s320/mikaelasboy03.jpg" t8="true" width="320px" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Totally Busted</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOTQisA4-PmiSFQ_WvYu7n1Yq_j71KIvZvTFaksQkqrh-X3ToAGGyvdZGwgLhXJaEIxrVYGNHZP_u8-l-pOvvyegVoNVsc2pZE7msD1UDTb-XEDHEBNMQ6zUPFQVOAqeUZsbqhIlTEkZo/s1600/mikaelasboy05.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213px" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOTQisA4-PmiSFQ_WvYu7n1Yq_j71KIvZvTFaksQkqrh-X3ToAGGyvdZGwgLhXJaEIxrVYGNHZP_u8-l-pOvvyegVoNVsc2pZE7msD1UDTb-XEDHEBNMQ6zUPFQVOAqeUZsbqhIlTEkZo/s320/mikaelasboy05.jpg" t8="true" width="320px" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Serious Goof Ball</td></tr>
</tbody></table><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhX8oXsDa73nJqAhlmv5Ye32f_RFBiniqlwpPOM5MrZJ1z8hpM5rp5VIsWELU6cq5So1Zixpx0C9ofDOTZ1Hjt9IfzcKx8ui4PhpKHGD-ceWzqpnur-hJgcqtH7-ZxqozPRjw-dM2S74fI/s1600/mikaelasboybk.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213px" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhX8oXsDa73nJqAhlmv5Ye32f_RFBiniqlwpPOM5MrZJ1z8hpM5rp5VIsWELU6cq5So1Zixpx0C9ofDOTZ1Hjt9IfzcKx8ui4PhpKHGD-ceWzqpnur-hJgcqtH7-ZxqozPRjw-dM2S74fI/s320/mikaelasboybk.jpg" t8="true" width="320px" /></a></div><div class="separator" style="clear: both; text-align: center;"><br />
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<div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhtMmKTyJr44-vQbLZEPII7bMt81Kfs1EDzIXUldjdnI-vD-sM0HmTQqi95nzygXQgYD6exJqLMptuNyNs-2MtiyQo3DLvZjIgkBel9tysnXzqQl81Rz62FG3WxevC2WwWiXtrHKAsuNM8/s1600/mikaelasboy01.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320px" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhtMmKTyJr44-vQbLZEPII7bMt81Kfs1EDzIXUldjdnI-vD-sM0HmTQqi95nzygXQgYD6exJqLMptuNyNs-2MtiyQo3DLvZjIgkBel9tysnXzqQl81Rz62FG3WxevC2WwWiXtrHKAsuNM8/s320/mikaelasboy01.jpg" t8="true" width="269px" /></a></div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><br />
</div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: left;">It's hard to remember the stress of that day now, because when I look at these pictures I just want to laugh. This is who we are. I am unorganized but over-prepared. He is goofy and inappropriate. She is sweet and stubborn. And hubby is patient and mild. I love that these pictures captured some of that. And I'm not sorry that this is who we are, even if it causes me stress on picture day.</div><div class="separator" style="clear: both; text-align: center;"></div><div class="" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: left;"></div><div class="" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: left;"><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjr7bUhjCO4eZtG-lPfFUBv1m8h_6WwlsoiWTfBbM8s-_onLBdetQHnmArdwkmUEj0U2v0Kl2Mh_SLI0R56VfTI170961qsLGE_AMxm1AMdWkbE0qvNnyWMN5m01gpDHAlBSgfjJ-t_JJY/s1600/mikaelaskids.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="271px" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjr7bUhjCO4eZtG-lPfFUBv1m8h_6WwlsoiWTfBbM8s-_onLBdetQHnmArdwkmUEj0U2v0Kl2Mh_SLI0R56VfTI170961qsLGE_AMxm1AMdWkbE0qvNnyWMN5m01gpDHAlBSgfjJ-t_JJY/s320/mikaelaskids.jpg" t8="true" width="320px" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiS6-k3zE_uHhBPb6QVAvDUnYzhkd_1StA10-Z15CWpTBPF6dZTpLaRgKWS_Slr1qh7dYTqziMhZu1ssjeW2GTB93_1qdHhbICOJvUV_l0zhcx_9Tk9VaAZqQjVoHdqXU6IptSJoUu7GMs/s1600/mikaelaskids02.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="269px" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiS6-k3zE_uHhBPb6QVAvDUnYzhkd_1StA10-Z15CWpTBPF6dZTpLaRgKWS_Slr1qh7dYTqziMhZu1ssjeW2GTB93_1qdHhbICOJvUV_l0zhcx_9Tk9VaAZqQjVoHdqXU6IptSJoUu7GMs/s320/mikaelaskids02.jpg" t8="true" width="320px" /></a></div><div class="separator" style="clear: both; text-align: center;"><br />
</div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: left;">I have all kinds of things to update on other than spring pictures, including a trip to the Neurologist, a trip to the ENT, another hearing test, and two new therapies, but I'm thinking this is enough Unicorns and Rainbows for one post.</div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: left;"><br />
</div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: left;">I'll be back soon. I promise not to neglect my Blog Child like this again. </div>Mikaelahttp://www.blogger.com/profile/04299699527313278772noreply@blogger.com2tag:blogger.com,1999:blog-6664505081414281499.post-76220053173560851432011-04-14T17:01:00.002-04:002011-04-15T14:20:43.838-04:00Look at me.<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjoBFGNObIYwkz718KqNsOw1FsP37VY8NvHSUGE_ROnVNX_bOy4K2HmBptetWass8sOXP4CaGIxeRPms2Yjb8mnP3wNe7YkrZIXizMMgGGTwdodYw1Dmmqo8FgKSEy9o4J6kwN6F6-cQRw/s1600/mikaela18.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" r6="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjoBFGNObIYwkz718KqNsOw1FsP37VY8NvHSUGE_ROnVNX_bOy4K2HmBptetWass8sOXP4CaGIxeRPms2Yjb8mnP3wNe7YkrZIXizMMgGGTwdodYw1Dmmqo8FgKSEy9o4J6kwN6F6-cQRw/s320/mikaela18.JPG" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: center;"><br />
</div>Common theme around here: Isabella misses a milestone. I wait patiently, then impatiently for it to come on its own time. When it doesn't, I start to worry. I talk to doctors and therapists about it, and we make it a new IEP goal for her to work on. I get obsessed with practicing the skills she needs to master the milestone while she's home with me, so much so that it isn't fun for her nor I after about a day or two. I start to really worry that she will never be able to do whatever it is she isn't doing, and eventually I accept that I'm okay (or will work really hard on becoming okay) with her not ever getting to a point where she is able to master the milestone in question. Then, out of nowhere, she does it. And continues to do it. Milestone mastered, she never looks back.<br />
<br />
But then, a new worry. Another milestone missed. And so the story goes.<br />
<br />
For a long time, my biggest milestone-missed worry was her speech. We struggled for so long with getting her to make sounds, and then making those sounds mean something. I researched and googled and accepted that she might never speak. So we took her to sign language classes, and enrolled her in 2 separate speech therapy sessions. In time, I was able to understand most of what she was saying, but not many other people could. But now she talks. Not WELL, per say, but enough to hold a conversation with most people she meets. And dang, does that girl have a lot to say.<br />
<br />
So my worries moved on. I worried that she would never jump. I worried that she would never be able to walk up stairs without me. I worried that she would never be potty trained. I still worry that she will never dress herself. <br />
<br />
But lately my frustrations feed off the fact that my child won't look at me. Not much anyway, and definitely not for a long period of time (unless you count 3 seconds long). She rarely looks in someone eyes without prompting, and she never holds eye contact while she is speaking to you. When she does look at me, it's usually that spot right above my nose, in between my eyes. And even then, she looks uncomfortable.<br />
<br />
<br />
She's been this way forever. At first I thought she was just shy. She has always been affectionate, but when asked for a kiss, she hides her face, ducks her head, and moves into you passively, so that she becomes the recipient of the kisses. I realize now that she just isn't capable of looking at my face long enough to know where her kiss needs to land. <br />
<br />
I have been stressing about this for a while now. Back in November I made it a big point with her school district to add it to all areas of her IEP, so that there isn't a teacher or therapist around her that shouldn't be making eye contact a main priority when they are working with her. I can't say I haven't seen an improvement, because she knows now that it is something that she should be doing, and she will (when asked to) look at you for maybe a millisecond longer than she used to. But she has a LONG way to go.<br />
<br />
This past week has been especially cruel in pointing out her lack of progress in this area. <br />
<br />
Exhibit A: Spring Pictures. What a fiasco. I spent forever picking out just the right outfits for the kids to wear, and even had back up outfits ready for if it was cold outside. I packed snacks and capri suns to bribe them into sitting still long enough to get some decent shots. I waited until the last possible second to give them baths and dress them so that their hair would be perfect and their clothes would not wrinkle. <br />
<br />
The disaster started on the way there. Noah fell asleep literally a block before where we were scheduled to meet. Isabella was breathing snot bubbles out of her nose due to a cold that decided to develop ON PICTURE DAY. I realized after I parked that I hadn't eaten anything all day, so I was instantly crabby. These three things alone spelled a recipe for disaster, but it didn't end there. When we got there both kids took off running through the field. The very muddy field. In their yellow and white picture outfits. When the photographer got there, Noah decided he was terrified of the camera and started screaming whenever she came near him. The first few shots of Bella, while serious, could have been great until I realized that she had a clump of hair stuck to the drool on her chin. Noah finally warmed up to the camera enough that he stopped screaming at it, but wouldn't sit still long enough to capture enough workable shots, and instead insisted on climbing up and down the stone steps of a building, or worse, picking all of the flowers and tearing them to shreds while running around a tree. <br />
<br />
But my biggest frustration was getting Isabella to even look at the camera. She would smile pretty and say cheese just fine, but she was always looking down or to the side. When I would use my stern voice and remind her to "LOOK AT THE CAMERA, ISABELLA GRACE" she would look at it with the most serious and reluctant face that she could muster. Definitely not a "yay-spring-picture!" face. More like "I-hate-my-mother-and-I-refuse-to-smile-and-look-at-the-camera-simultaneously-so-there" face. <br />
<br />
I left the photo shoot near tears. Luckily, Jen called me on my way home and talked me out of my funk, and even offered to take pictures of the kids herself in her backyard if it would cheer me up. I do love that girl.<br />
<br />
The no-eye-contact saga continued into yesterday, though. Because of the spring photo shit (i mean shoot!), I have been much more aware of and much more frustrated by her lack of eye contact. I have been trying to patiently find ways to both increase her spontaneous eye contact, and her ability to maintain eye contact until I look away first. She knows I'm frustrated with it though, so she has been too. Yesterday both kids were feeling kinda yucky but we were all sick of sitting around the house so we decided to walk around the mall for a while. We made it to the indoor play area, and I busted out my phone to get some pictures of the kids playing. Isabella was sitting on one of those 50 cent mechanical rocking car/boat/plane/whatever things, and I was trying to get her to look at me so I could get the perfect shot. No such luck. She repeated "cheeeese, cheeeeese, cheeeese!!" over and over, all the while looking up, down, and every other which way except at me. I tried reminding her nicely, then pleaded with her to just look at me for long enough to take a picture. Nope. Another mom nearby was watching all of this take place, and I could just imagine her thinking "why the hell won't that child look at the camera? And why the hell is that mother making that big of a deal over it?" Finally I lost my patience and my temper and told Nik to "Get Noah NOW. We're leaving!" Both kids looked up at me like "WTF?!" and both kids had major meltdowns all the way out of the mall to the car. Nik was smart enough to not say a word to me, and didn't even ask me what set me off enough to take two kids, who weren't even misbehaving, out of a playground just so we could listen to screams of protest, when we really didn't even have to leave. <br />
<br />
I got in the car and felt so ashamed. I was embarrassed to have lost my temper over something that Isabella obviously struggles with so much. I know that it isn't as easy for her to do some things that seem so natural to most people. I know this, but I don't understand it, and I don't know what I can do to change it. I totally misbehaved at the playground, and my children missed out because of it. <br />
<br />
It didn't help that as we are driving out of the parking lot, I hear a quiet voice in the back seat say to me "I'm sorry I didn't look at you, mommy." <br />
<br />
That child is a heart breaker.<br />
<br />
So this is our struggle today. I know that in time, and with work, her eye contact will improve. I know that she will work on this so hard, even though it makes her uncomfortable, and even though it does not come naturally to her, all because it is important to me. She doesn't know yet that looking at people is a huge necessity in the long run at achieving social competence, just as she didn't know when she was working so hard to make words that being able to talk to someone was, too. But <em>I</em> know this, and without her having these skills, I am so afraid for her future. Will she not have friends because kids won't understand what she is saying? Will her teachers get annoyed when she repeats phrases over and over again, and will they think she is being disrespectful when she doesn't make eye contact with them? Will her employers think she is incompetent socially if she doesn't interact with the outside world "normally"?<br />
<br />
I want her to connect with the world in the same beautiful, loving, and eager way that she connects with me. I want the world to see her as she is: a sweet, hardworking, and determined soul who loves to love and be loved. I just hope the world doesn't pass her by without a second glance, thinking she is incapable of so many things I know she can do, all because she isn't looking.<br />
<br />
I found a poem on a blog that another mom with a child with special needs posted. It was written by Kathy Winters, and while the words of the poem are simple, the meaning is huge. <br />
<br />
<div style="text-align: center;"><strong>The Misunderstood Child</strong></div><div style="text-align: center;"><br />
</div><div style="text-align: center;"><br />
</div><div style="text-align: center;">I am the child that looks healthy and fine.</div><div style="text-align: center;"></div><div style="text-align: center;"><br />
</div><div style="text-align: center;">I was born with ten fingers and toes.</div><div style="text-align: center;"><br />
</div><div style="text-align: center;">But something is different, somewhere in my mind,</div><div style="text-align: center;"><br />
</div><div style="text-align: center;">And what it is, nobody knows.</div><div style="text-align: center;"><br />
</div><div style="text-align: center;"><br />
</div><div style="text-align: center;">I am the child that struggles in school,</div><div style="text-align: center;"><br />
</div><div style="text-align: center;">Though they say that I'm perfectly smart.</div><div style="text-align: center;"><br />
</div><div style="text-align: center;">They tell me I'm lazy -- can learn if I try --</div><div style="text-align: center;"><br />
</div><div style="text-align: center;">But I don't seem to know where to start.</div><div style="text-align: center;"><br />
</div><div style="text-align: center;"><br />
</div><div style="text-align: center;">I am the child that won't wear the clothes</div><div style="text-align: center;"><br />
</div><div style="text-align: center;">Which hurt me or bother my feet.</div><div style="text-align: center;"><br />
</div><div style="text-align: center;">I dread sudden noises, can't handle most smells,</div><div style="text-align: center;"><br />
</div><div style="text-align: center;">And tastes -- there are few foods I'll eat.</div><div style="text-align: center;"><br />
</div><div style="text-align: center;"><br />
</div><div style="text-align: center;">I am the child that can't catch the ball</div><div style="text-align: center;"><br />
</div><div style="text-align: center;">And runs with an awkward gait.</div><div style="text-align: center;"><br />
</div><div style="text-align: center;">I am the one chosen last on the team</div><div style="text-align: center;"><br />
</div><div style="text-align: center;">And I cringe as I stand there and wait.</div><div style="text-align: center;"><br />
</div><div style="text-align: center;"><br />
</div><div style="text-align: center;">I am the child with whom no one will play --</div><div style="text-align: center;"><br />
</div><div style="text-align: center;">The one that gets bullied and teased.</div><div style="text-align: center;"><br />
</div><div style="text-align: center;">I try to fit in and I want to be liked,</div><div style="text-align: center;"><br />
</div><div style="text-align: center;">But nothing I do seems to please.</div><div style="text-align: center;"><br />
</div><div style="text-align: center;"><br />
</div><div style="text-align: center;">I am the child that tantrums and freaks</div><div style="text-align: center;"><br />
</div><div style="text-align: center;">Over things that seem petty and trite.</div><div style="text-align: center;"><br />
</div><div style="text-align: center;">You'll never know how I panic inside,</div><div style="text-align: center;"><br />
</div><div style="text-align: center;">When I'm lost in my anger and fright.</div><div style="text-align: center;"><br />
</div><div style="text-align: center;"><br />
</div><div style="text-align: center;">I am the child that fidgets and squirms</div><div style="text-align: center;"><br />
</div><div style="text-align: center;">Though I'm told to sit still and be good.</div><div style="text-align: center;"><br />
</div><div style="text-align: center;">Do you think that I choose to be out of control?</div><div style="text-align: center;"><br />
</div><div style="text-align: center;">Don't you know that I would if I could?</div><div style="text-align: center;"><br />
</div><div style="text-align: center;"><br />
</div><div style="text-align: center;">I am the child with the broken heart</div><div style="text-align: center;"><br />
</div><div style="text-align: center;">Though I act like I don't really care.</div><div style="text-align: center;"><br />
</div><div style="text-align: center;">Perhaps there's a reason God made me this way --</div><div style="text-align: center;"><br />
</div><div style="text-align: center;">Some message he sent me to share.</div><div style="text-align: center;"><br />
</div><div style="text-align: center;"><br />
</div><div style="text-align: center;">For I am the child that needs to be loved</div><div style="text-align: center;"><br />
</div><div style="text-align: center;">And accepted and valued too.</div><div style="text-align: center;"><br />
</div><div style="text-align: center;">I am the child that is misunderstood.</div><div style="text-align: center;"><br />
</div><div style="text-align: center;">I am different - but look just like you</div><div style="text-align: center;"><br />
</div><div style="text-align: center;">Kathy Winters</div><br />
<br />
<br />
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<div class="separator" style="clear: both; text-align: center;"></div>Mikaelahttp://www.blogger.com/profile/04299699527313278772noreply@blogger.com3tag:blogger.com,1999:blog-6664505081414281499.post-33304310799524890452011-04-07T18:08:00.001-04:002011-04-07T18:10:02.494-04:00Beauty in the Midst of Struggles<div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgxxT54E9PgqhblmdqQ88PAc503aB09IWATp-a6aUQ-v6CtC-Iz_5jWD1rcjj6u11__eUskK26w1y-DerHzNXFwriLc3XIFrJnGYej56TpKTevmHEN99q-NmaVho6YDhRdnD6bD6w68hqk/s1600/0401111810.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" r6="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgxxT54E9PgqhblmdqQ88PAc503aB09IWATp-a6aUQ-v6CtC-Iz_5jWD1rcjj6u11__eUskK26w1y-DerHzNXFwriLc3XIFrJnGYej56TpKTevmHEN99q-NmaVho6YDhRdnD6bD6w68hqk/s320/0401111810.jpg" width="240" /></a></div><br />
Riding the waves of anxiety again. I hate not knowing what the future holds. I've been trying so hard to make connections with other parents out there who are living through similar journeys, and I'm finding that the more I read about what they are going through, the more I fear that not knowing what is "wrong" with Isabella might lead to something really really terrible down the road. <br />
<br />
My biggest fear in life is Mitochondrial Disease.<br />
<br />
And, as Isabella is on the autism spectrum (PDD), I have been doing a lot of research on how Autism and Mitochondrial Diseases might go hand in hand. I was hoping there would be no connection. I was way wrong. <br />
<br />
Turns out, up to 10% (maybe MORE!) of people living with Autism (anywhere on the spectrum, from very mild, PDD, to full blown Autism) are also suffering from a mitochondrial disease. Autism can act much like a fever...it is a sign that something else is amiss in your DNA or body functioning, not always a solo diagnosis, but more like a symptom of something bigger. I know of so many different disorders in DNA that are accompanied by autism-like behaviors. Kabuki is one. I hate that mitochondrial disorders are one of them too.<br />
<br />
So I am scared again. I worry that Isabella is eating too frequently, and not gaining weight as fast as she used to. I worry about that elevated lactic acid in her blood. I worry about the random rashes that pop out of nowhere on her face. I worry that her muscle strength and tone are SO low. I worry that she might have something horribly progressive after all. <br />
<br />
She is scheduled to go back to her Neurologist at the Cleveland Clinic in the beginning of June. He's the one who specializes in Metabolic and Mitochondrial Diseases. I have SO many questions for him, but I know that diagnosing these diseases aren't easy. They usually require more blood work, sedated MRIs, and muscle biopsies. All scary things. All things that require waiting for answers. I don't know how I will handle it. <br />
<br />
I know I drive myself crazy with this anxiety. I don't know how to stop, though. I often feel SO alone in this struggle, because I am afraid to talk about it to many people. Talking about it makes it more real. And when I try to talk about it to Nik, he just doesn't understand. Don't get me wrong. That man is one of THE most WONDERFUL things to ever happen to this Earth. If he wasn't my husband, I'd be jealous of whoever snagged him. But he tries not to worry about things until someone (usually of authority) tells him to "start worrying" and he's used to me worrying about things way before it's time. I really think that half the time I talk to him about my worries about this, he is trying to tune me out because he doesn't usually say much on the subject. Honestly though, I am glad. I definitely couldn't handle someone like me. I know he worries, but he tries to focus on the <em>now, </em>which I honestly wish I could do more of. I also think he transfers his worries about Isabella's health to more day to day struggles of her future,<span style="background-color: #ead1dc;"> such as</span> where she will go to school, and how she will fit in with her peers, where as I am more concerned with her future health. I'm one to get as close as I can to the fire so I will be prepared to burn if I have to. Nik is one to walk away from it until he absolutely has no other choice but to face the flames. <br />
<br />
I often ebb and flow between strength and survival. There are some days when I feel so powerful and strong, and I know that I will be able to stand up again after life's blows. But there are days when I don't even fight the blows and I just try to survive. I am not strong right now. But I am surviving.<br />
<br />
There lies the problem. I don't want to spend my life just surviving. I want to see the joy in every minute, instead of worrying about how I will find good times in the wake of crisis. I don't want to be obsessed with sickness and disease. I don't want to research medicines to delay the progression of energy loss. I don't want to know all of the medical terms that haunt me in my dreams. I just want to enjoy my kids. <br />
<br />
I am working on letting go in order to find a place of peace. But it is so hard. <br />
<br />
HOWEVER, the past few weeks have brought a lot of good. I have known for a long time that I need to direct my energies on something more positive, so my amazing, wonderful, brilliant friend <a href="http://www.proanofamilyadventures.blogspot.com/">Jen</a> and I have started up a network for parents and families of special needs children. We have called it <a href="http://www.speciallovesnetwork.blogspot.com/">Special Loves Network</a>, and our first parent's night is April 27th. I am so excited about this, because it has been my hope for a long time that someone would invite me into something like this, and when it never happened I decided it was high time something like this got started in our area. Jen and I attended a session last spring called "Seasons Of The Heart". It was one of the most wonderful experiences for us because we were able to see that we were not alone, that we weren't crazy, that we have love and support from other families who we don't even know, and that there are resources out there to help us. We didn't want the class to end. So we decided to continue it in our own way by starting this group. We started a blog for it if anyone is interested (<a href="http://www.speciallovesnetwork.blogspot.com/">http://www.speciallovesnetwork.blogspot.com/</a>) but be warned that we are in the VERY early stages of development. That being said, however, I am SO encouraged by the interest it has already generated in our community, and by the amount of people who would like to be involved and have offered to help. We plan on having parent support nights, play dates, and sibling support, as well as a host of resources such as upcoming events for the special needs community, helpful online web pages, and even (someday) fundraising for genetic research and causes. I hope it flies, and that people get as much out of it as I hope to!<br />
<br />
Jen and I also attended a conference this past weekend for parents and educators of special needs children in Massilon. It was WONDERFUL! The classes on sensory integration disorders and social competence were entirely applicable to what we are experiencing with Isabella, and I learned so much. It really fueled my desire to get the ball rolling on the Special Loves Network. <br />
<br />
It's amazing how beauty can be found and connections can be made in the midst of unexpected struggles.<br />
<br />
So speaking of beauty, how bout this week in pictures?<br />
<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRtSATKf7E1VvkRsP65Xxxmu_RY4p-xNP8BvPACr48lltLsvogChhI5Cg4bxv0O33358ejSWpKsKDWDdhPUA75TzdqHrWnbOQUVzxZSD9zChtkAYEoXEVNggKWcwLhQL9JLpDZK3HL4SQ/s1600/0402111847.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" r6="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRtSATKf7E1VvkRsP65Xxxmu_RY4p-xNP8BvPACr48lltLsvogChhI5Cg4bxv0O33358ejSWpKsKDWDdhPUA75TzdqHrWnbOQUVzxZSD9zChtkAYEoXEVNggKWcwLhQL9JLpDZK3HL4SQ/s320/0402111847.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Noah has discovered his softer side. He is totally in love with this baby, he even gives it a bottle and changes its diapers. So sweet.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiS60L6BhW7Tvbbb13ESj9vAZDYr7sXJgrhYaiBCxPzpvzyc-my8LChP4qfz8vAEgdpiFKJf6KF_QvyrgGW7DdJ11nAGsimOV6XPmOOuNi8jN1DhYaGzjOXYb6Sj9lE98gl999sIMj1NEQ/s1600/0405111620.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" r6="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiS60L6BhW7Tvbbb13ESj9vAZDYr7sXJgrhYaiBCxPzpvzyc-my8LChP4qfz8vAEgdpiFKJf6KF_QvyrgGW7DdJ11nAGsimOV6XPmOOuNi8jN1DhYaGzjOXYb6Sj9lE98gl999sIMj1NEQ/s320/0405111620.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">"Mommy! Come see what I did!!!"</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjAwD-mWlNLSAzhrhOkONVNfTs_jXm-6w7Nm0NmzIFkGn6xa6kkj1iM3lha5fVAn99yt4Wl7c8ptRG8uPfBa6Z1zT0Q_IFw4jegmJ0VRuv1N3K3Py6Bbi55EI-SrwrUrRfutBk9W-Tk604/s1600/0405111621.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" r6="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjAwD-mWlNLSAzhrhOkONVNfTs_jXm-6w7Nm0NmzIFkGn6xa6kkj1iM3lha5fVAn99yt4Wl7c8ptRG8uPfBa6Z1zT0Q_IFw4jegmJ0VRuv1N3K3Py6Bbi55EI-SrwrUrRfutBk9W-Tk604/s320/0405111621.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">She was NOT happy when I informed her that we are not supposed to color on the walls.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgtAkJoIB_K2-Foa2gKfltgxYDvSOsiAsjXh-gLIu_ssdzF5gTViu0XqXXD0SQKO8LHmB6gpCbmrUsPVEDZIz5R3HhexGQIN0Dp46C0-RfpvkjQdXDtbEd4i6eb0PysMTwITqrc2P_3Vo8/s1600/0405111626.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" r6="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgtAkJoIB_K2-Foa2gKfltgxYDvSOsiAsjXh-gLIu_ssdzF5gTViu0XqXXD0SQKO8LHmB6gpCbmrUsPVEDZIz5R3HhexGQIN0Dp46C0-RfpvkjQdXDtbEd4i6eb0PysMTwITqrc2P_3Vo8/s320/0405111626.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Such a little love. She ran and got her eraser, and then proudly announced "I'll help you clean it mom. I'm the BEST helper!"</td></tr>
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<div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgZh04nhj4niXo2KGWAEZzdsE88I0r0r2_xhTEGInBUZsufMHWIe-N7_ZZsOf9HMwEU8XxOsPzABhk9lRRuEQ4uh_JPLzG2ZLqfVq3x7X9dLF6ffjnvRFQelSvstQB6OvtqCqRSPtvlNm8/s1600/0405111627.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" r6="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgZh04nhj4niXo2KGWAEZzdsE88I0r0r2_xhTEGInBUZsufMHWIe-N7_ZZsOf9HMwEU8XxOsPzABhk9lRRuEQ4uh_JPLzG2ZLqfVq3x7X9dLF6ffjnvRFQelSvstQB6OvtqCqRSPtvlNm8/s320/0405111627.jpg" width="320" /></a></div><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiq_O2imduvRbetlsasj1ramKgzi1BV5ASvLyPFW487kuHE8lPnAhemFFuahd21j0huiRWmFwfb2mLVkm-i7lfJucJ1fa-MIoW-KoY02byfEt0_DKipcKTOtIGM6qdVQ7U0RK31_Vu7fEU/s1600/0404111838.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" r6="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiq_O2imduvRbetlsasj1ramKgzi1BV5ASvLyPFW487kuHE8lPnAhemFFuahd21j0huiRWmFwfb2mLVkm-i7lfJucJ1fa-MIoW-KoY02byfEt0_DKipcKTOtIGM6qdVQ7U0RK31_Vu7fEU/s320/0404111838.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">So proud!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRU7i6pH5a4-l47JrUVI1CmZOCqjRrtrqI3cHi9s_gMqf9dzw5IXpYDm2wJ3vXF-b40KnkYKEO4onOKepcw9WjHJuhsRl-5tu_7C4wgpHH-9FKCKF5en8Tyx9lG7CCmN-D3ECM6W04EDM/s1600/0404111443.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" r6="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRU7i6pH5a4-l47JrUVI1CmZOCqjRrtrqI3cHi9s_gMqf9dzw5IXpYDm2wJ3vXF-b40KnkYKEO4onOKepcw9WjHJuhsRl-5tu_7C4wgpHH-9FKCKF5en8Tyx9lG7CCmN-D3ECM6W04EDM/s320/0404111443.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Not sure how she managed to snag the Student of the WEEK award on a Monday, but we'll take it!!</td></tr>
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PS....In case you haven't heard, it's Autism Awareness Month. <a href="http://www.autismspeaks.org/">Learn more</a>, support more, and love more!Mikaelahttp://www.blogger.com/profile/04299699527313278772noreply@blogger.com1tag:blogger.com,1999:blog-6664505081414281499.post-60560037127622579182011-03-30T11:20:00.000-04:002011-03-30T11:20:54.440-04:00Mosie<div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">I all too often share the joys and struggles of raising a mystery child with special needs. I can (and do) go on for days about how much she means to me, how much I wish I could do more for her, and how much her life has affected me. I throw my water balloon of emotions and anxieties surrounding Isabella to whoever is nearest to catch them, and I never really know when that balloon will burst on someone, or when they will catch it softly, and tenderly throw it back to me. Both for the good, and sometimes for the not so good, I am consumed by my role in parenting her.</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">But I also have a son. </div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
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From day one, Noah has seemed to know that she needed us more than an average older sibling would. He was the perfect infant, sleeping and eating well from the start, and almost never sick. He was born right in the middle of our coming to terms with the fact that her delays weren't the temporary, illness induced setbacks that we once thought. He used to look up at me with his wide, sweet eyes as I cried while I nursed him, trying to accept the fact that he would one day have to fill the roll as a "big brother" to a special needs older sister. He seemed to know the nights when I would finally relax enough to sleep soundly, and he chose them to practice his own sleeping through the night. As we fussed around checking her temperature hourly, checking her in her sleep nightly, and taking her to therapies and specialists weekly, he quietly mastered his milestones, with his accomplishments going by almost unnoticed by us.<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhk__rrvc-e9yk-NfkpB3Y_SDmhwgLiwVQI-aW1CvO3rCYsECUA8BRR7sSdfxdeWPirueHME0qCcUl27GBa5ZEVRavO_m2En39qU95rE9zje9XPPxfX46JKctgNLVolC1XLZxdoolmbogk/s1600/DSCN0520.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" r6="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhk__rrvc-e9yk-NfkpB3Y_SDmhwgLiwVQI-aW1CvO3rCYsECUA8BRR7sSdfxdeWPirueHME0qCcUl27GBa5ZEVRavO_m2En39qU95rE9zje9XPPxfX46JKctgNLVolC1XLZxdoolmbogk/s320/DSCN0520.JPG" width="320" /></a></div><br />
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</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">He was there when the neurologist told me she definitely had "some kind of syndrome". He watched quietly while I fought to get her to hold her own spoon to feed herself. He imitated the sounds I would painstakingly pronounce, over and over again, trying to get her to repeat them back to me. He sat in his stroller while screamed as she had blood drawn for more genetic testing. He nursed while we sat at therapy after therapy, trying to get her to pedal a bike. To walk up a step. To hold a crayon. To suck from a straw. To learn sign language. To say her first words. </div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">He was there, not yet 7 months old, when she had her 45 minute seizures. He didn't cry while I panicked, trying to figure out how to dial 911 on my phone. He didn't get scared when the ambulances arrived in the Toys R Us parking lot, sirens screaming, men in action, barking directions at each other and at me. He didn't get upset when I left him, in the care of my mom and Harley, while I rode with her to the hospital, and he didn't invade my thoughts while she lay there unconscious and twitching, didn't make me realize that I had never left him for long, that he never took a bottle, that it was nearing time for him to eat. He knew she needed me, and he never made me worry about him.</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgqzchAerQ8i12_H8LiLRik5zseq6HQIyB54qYD8zqadG7MmeTHtAb6YaXWGmsoOdZsMk4S0nHm6PMD335ws0fYrqnBqh6NXH4H409zgvYmkrdjZ-2zYobfOD2RoRYOgqWqxLaIsK82l2s/s1600/noah+and+bella+on+tummy.bmp" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" r6="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgqzchAerQ8i12_H8LiLRik5zseq6HQIyB54qYD8zqadG7MmeTHtAb6YaXWGmsoOdZsMk4S0nHm6PMD335ws0fYrqnBqh6NXH4H409zgvYmkrdjZ-2zYobfOD2RoRYOgqWqxLaIsK82l2s/s320/noah+and+bella+on+tummy.bmp" width="320" /></a></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">He barely made a sound for the entire week he spent in the hospital with us while she lay there so sick. He didn't protest to sleeping in his car seat, to not having proper floor time to crawl and play. He slept when we would leave him with people, while she would got wheeled for CAT scans, spinal taps and tests for her kidneys. He was there when I needed to hold her, and he played in her hospital crib while I tried desperately to get her to drink something. And when I returned to get him out of her crib, he was there, smiling at me proudly, holding onto the slats of her hospital bed, standing for the first time.</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiE6KJaCrmrFkm_8CRH5KVbnoUW3d2bdeK18nXY1GcWwziiiDmqHNyiQYNkMBIZ008C-k97O3eOMx8uBi_46JoScSQ_CDQxIZaW67FhnbIfCPXFcpmL6S9oxoEPQQ5CBf_fxX9caEm4-Dk/s1600/OSU+noah.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" r6="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiE6KJaCrmrFkm_8CRH5KVbnoUW3d2bdeK18nXY1GcWwziiiDmqHNyiQYNkMBIZ008C-k97O3eOMx8uBi_46JoScSQ_CDQxIZaW67FhnbIfCPXFcpmL6S9oxoEPQQ5CBf_fxX9caEm4-Dk/s320/OSU+noah.jpg" width="240" /></a></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">He was there when I got the call that she might have a mitochondrial disorder. He was there while I researched endlessly, and he was there, watching me with those round blue eyes when I folded myself into a pile of despair. He was there, always so quiet, but always so willing to make me smile when I realized I hadn't done so for days.</div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEityx1_tXrX-i3yzaFbSCB2oiz-QL4M4gqfLUkAjoYGNJiHvZIGemz6gobXWltC9Vp91KeDG27ViWEhbBAr86P3GDkxodfXX1tC8_v_GuAMPtgAgYFDVdM7zMDPkuxzH2U9jFeAJhEvPYQ/s1600/OSU+noah+and+me2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" r6="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEityx1_tXrX-i3yzaFbSCB2oiz-QL4M4gqfLUkAjoYGNJiHvZIGemz6gobXWltC9Vp91KeDG27ViWEhbBAr86P3GDkxodfXX1tC8_v_GuAMPtgAgYFDVdM7zMDPkuxzH2U9jFeAJhEvPYQ/s320/OSU+noah+and+me2.jpg" width="240" /></a></div>He was there for so many of our most difficult times. And looking back, I am realizing that he NEVER fought for our attention when she needed us. He never made me choose which child I needed to focus on most, he always let her have us.<br />
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I am finally at the point where I am able to unpack the memories of those scary days, and as I am doing so I am realizing how much Noah was there, supporting and caring for Isabella just as much as we were. <br />
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<div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">So my point is, that although I write in this blog to muddle through my fears, joys, thoughts, and emotions which usually pertain to Isabella's journey with us, our little Mosie is here too. And he's my hero for choosing to come to this family knowing that he had work to do from the get go. </div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixnUKWpn8hFVYI-mCi29JZ8MpGT6KZZJBGk5CeYth5RaFR9jQh8l64ZaJIbKP47swTxfcVIbcBsoYO0_Obuk5K57umSBwd_MpNe2MGQOvcG8GeKH0tuMb04Sb9kvA2BgKwzX2kQ8PYXB8/s1600/Noah+and+Bells+holding+hands.bmp" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" r6="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixnUKWpn8hFVYI-mCi29JZ8MpGT6KZZJBGk5CeYth5RaFR9jQh8l64ZaJIbKP47swTxfcVIbcBsoYO0_Obuk5K57umSBwd_MpNe2MGQOvcG8GeKH0tuMb04Sb9kvA2BgKwzX2kQ8PYXB8/s320/Noah+and+Bells+holding+hands.bmp" width="320" /></a></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">He's two now, so his days of being silent and golden while we are assisting to other household and sibling needs are slowly (quickly) fading away. He's still the sweet boy he was when he was a baby, but he is showing me that he needs us now, too. His temper tantrums rival the best of the worst, and he even decided to get in on that speech therapy action by requiring a little help in that area himself. But the fact that he waited to REALLY need us until his sister was out of the most dangerous part of the woods doesn't go unnoticed by us. He was sent here to go through this journey with us, and he's so good at helping us through it. And for all this and more, I love him to the moon and back.</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">And so does his sister.</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
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</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjcKx81L9vn2eBUQRt_9ulJHF63dT5bnuXARMeC_RPsXk8q_K1pyT1iI8MNyUyn-wul0N0vopaBm8kMqih82Z5sfv0qfp64_zLQLNsdDBCPekyftI7oqUwyWezUyfmGsuVepdYn7z9fJwI/s1600/0328111736.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" r6="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjcKx81L9vn2eBUQRt_9ulJHF63dT5bnuXARMeC_RPsXk8q_K1pyT1iI8MNyUyn-wul0N0vopaBm8kMqih82Z5sfv0qfp64_zLQLNsdDBCPekyftI7oqUwyWezUyfmGsuVepdYn7z9fJwI/s320/0328111736.jpg" width="320" /></a></div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"></div>Mikaelahttp://www.blogger.com/profile/04299699527313278772noreply@blogger.com2tag:blogger.com,1999:blog-6664505081414281499.post-72318881172524746842011-03-26T06:27:00.001-04:002011-03-26T06:30:02.972-04:00Picture Frames and Barbie DollsIt's 5:30 in the morning on a Saturday, when Nik is home and the kids are both asleep. I am wide awake. Go figure. Since next week my hubby turns 30, and since he stumbled across a rare Saturday off this weekend, I decided about a month ago to plan an all expense paid (by my hidden cash stash I accumulate over the months) family weekend getaway to a hotel with a little indoor water park for kids. Our bags are packed, the travel toy chest is already in the car. Everything is ready to go for when we leave in about 3 hours. And Nik has NO idea we are even going. I can't wait till he wakes up.<br />
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So other than planning and packing for that this week, I've also decided to temporarily give up my online medical search addiction. It was getting unhealthy. I was scrutinizing to the point of embarrassment, trying to find a diagnosis or to back up Kabuki Syndrome. I was constantly comparing her symptoms and features to that of other kids, trying to see if I was trying to make something of nothing. I was even checking Noah from head to toe, which only made me more crazy. Because guess what? His ears are cupped. His eyes have slight epicanthal folds. His toes have toe pads. GOOD LORD. I started freaking out that he might have a touch of a genetic abnormality too, until I realized that EVERYONE has things about them that are different like this. My toenails point upwards just like Isabella's, and Nik totally has toe pads too. Does this mean we are genetically 'wrong'? (Probably, haha!) But really. I was driving my kids, my husband, and myself totally crazy. And I acted crazy too. Take my recent trip to Pat Catans for example. I was in the picture frame aisle searching for the perfect side by side matted 5 x 7 when I peered in closer to some of the frames, just to look at the kids on the generic black and white pictures they put in the frames. Seriously. I was totally checking to see if this child picture frame model had epicanthal folds. This old lady walks down the aisle towards me, and I didn't even realize she was there because I was so transfixed by hoping this child had skin flaps in the corner of her eyes.<br />
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The lady sees me doing this and walks right up to me and says "Do you recognize her, dear?"<br />
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uhhhh.......<br />
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"um no. (nervous laughter)". <br />
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I booked it out of the store without buying anything, I was that mortified. Not that she knew what I was doing. But I still felt ashamed.<br />
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It gets worse. The other day I was playing barbies with Bells and I literally checked Barbie's hand for Palmer creases. I wanted to see if they would be there, and if they would be "anatomically correct." Yup. They were there. And yup, there were three of them. No fears guys. Barbie does NOT have a genetic syndrome.<br />
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So I decided that I had gone beyond the normal and healthy, and crossed over into the psycho and obsessed world of self diagnosing my child. I am going back to seeing her as nothing more than my beautiful and normal 4 year old. Because even with something different in her DNA, she has more in common with a normal child than not. She's perfect to me.<br />
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I have had doctors, BCMH nurses, family, friends, and my husband tell me how unhealthy it is to be googling and searching endlessly for answers as often as I was. Funny how it took picture frames and Barbie dolls to make me realize it. <br />
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I'm off to enjoy a weekend of bliss with my perfectly imperfect little family. I'm sure there will be fab pictures and stories to come :)Mikaelahttp://www.blogger.com/profile/04299699527313278772noreply@blogger.com2tag:blogger.com,1999:blog-6664505081414281499.post-59753779489057198502011-03-16T22:46:00.000-04:002011-03-17T07:20:12.927-04:00The ChaseI feel like I'm back in college, researching for a paper. I can't seem to unglue myself from the Internet, endlessly searching for something definitive to grasp onto, something that will give me that moment of clarity, that Kabuki is, in fact, the truth of Isabella. <br />
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I am back to my old ways, obsessing over different symptoms, writing my list of possibilities on my little purple pad of paper, only to later cross them off after thorough investigation on medical websites. She fits here, she doesn't fit there. Why am I so determined to put her into a category?<br />
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I want to know. I want to find it, label it, grieve it, thank it, and stop worrying that it will take her away from me. I want to scream it out loud for anyone who looks at her funny or asks me why she does this and doesn't do that. I want to make it a word that falls out of my mouth in a way that isn't horrifying, just like saying Isabella has brown hair. Isabella has blue eyes. Isabella has a genetic syndrome.<br />
<br />
It used to haunt me like this before. At first I felt like I was running away from it, denying that it could be, hating doctors that suggested it, and believing that she would one day be what I thought my dream of my child would be.<br />
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Not anymore. What I thought I wanted in Isabella when she was born isn't who Isabella is today. She's so much better. I want exactly who she is. I want her sweet voice, her big eyes, her gentle nature, her perseverance and her determination. I want her chubby fingers, her overlapping toes, her clumsy run, and her social nature. I want her careful steps, her affectionate hugs, her love of books, and her twirling dance moves. I want her brown hair. I want her blue eyes. And I want her genetic syndrome.<br />
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I just want to know what it is.<br />
<br />
So, the chase is on. I feel like it has always been winning, evading me by making me fear it, then hiding itself behind illnesses that took first priority of our attention. It runs from me and uses insurance companies, busy doctors, and unreliable, nonspecific, and slow advancing genetic testing to remain always out of reach. It plays games with me, making me want it one minute and not care for it the next. It uses my patience, my anxiety, my time, my money, my sanity, my marriage and my child to turn me into a someone I barely recognize anymore. And despite all of this, I am so thankful for it. <br />
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I fear it sometimes, but I don't wish it away. <br />
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I have already accepted that it is here. I'm not running anymore. I forgive it for making us worry, and for making my baby struggle. I accept that it is in control of her body. I will live every day of my life teaching my daughter, family, friends, doctors, teachers and society how to adapt, adjust, embrace and accept it. I just want to put a name to it, so I can say that finally, the chase is over.<br />
<br />
Since learning of Kabuki Syndrome 6 days ago, I feel like I am getting closer. Like the hunt is intensifying as it reaches the final moments before revealing itself to me. But the harder I push to find it, the more I wonder if I will ever, for sure, know the truth. And if not, will I ever, really, be able to accept that and move on peacefully?<br />
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I do know that this child of mine has a spirit made of pure light. I have often heard that people who are blind or deaf use their other senses to overcompensate for the loss of the other. Isabella's body isn't perfect. It is weak and fragile and different. But her spirit is amazing. It is strong, it is innocent, it is powerful, and it is loving. It overcompensates for all that her body is unable to do. That little body is just the host so that her spirit can light up her corner of the world while she is here. <br />
<br />
I can't believe the amount of love and support I have been surrounded by in this past week. So many of my friends and family are calling, texting, writing and visiting, checking in on us and loving up our girl even more than normal. I appreciate all of you for helping me, and for loving Isabella so much.<br />
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I have also found SO MANY wonderful people through Kabuki forums, blogs, and facebook. I have never before felt so uplifted by so many hands, accepting me and guiding me through this process. I can't tell you how good it feels to see pictures of each of your beautiful children, whom all look so similar to my own little love, and to feel like I have finally found Isabella's community. You all, who live so far from me, some of whom I have yet to even speak with yet, already feel like a kind of family to me.<br />
<br />
My heart says Kabuki. <br />
My brain says Kabuki. <br />
The Internet says Kabuki.<br />
But I'm still not sure.<br />
<br />
So the chase goes on.<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiMm4G_IxWUUUgMh2VK-GWDnP6fU7oeGsFNMyP2wLJMQHAEE_09xYjllJYUYEmr60BpwERlFqJL5607ShxtsnTlieEiAjiWioXlQwDuFje__nh3BKvimeP79GIfgw8xNQDpXvExVRUcit8/s1600/mikaela17.JPG" imageanchor="1" style="clear: left; cssfloat: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="213" r6="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiMm4G_IxWUUUgMh2VK-GWDnP6fU7oeGsFNMyP2wLJMQHAEE_09xYjllJYUYEmr60BpwERlFqJL5607ShxtsnTlieEiAjiWioXlQwDuFje__nh3BKvimeP79GIfgw8xNQDpXvExVRUcit8/s320/mikaela17.JPG" width="320" /></a></div>Mikaelahttp://www.blogger.com/profile/04299699527313278772noreply@blogger.com2tag:blogger.com,1999:blog-6664505081414281499.post-63364748928766150242011-03-11T22:02:00.000-05:002013-10-30T14:56:45.548-04:00Kabuki<span style="background-color: #ead1dc;">:::::::::::::WARNING! ANOTHER SUPER LONG POST! someday I'll learn to be brief, but unfortunately, I'm not even going to try today:::::::::::::::::</span><br />
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<span style="background-color: #ead1dc;">Genetics appointment recap... Let me start by saying that I have never spent as much time in an appointment (and we've had MANY) with an actual doctor. Our appointment yesterday started at noon and I got back to my car at 3:45...I was with the geneticist that entire time. Talk about a thorough doctor!</span><br />
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</span><br />
<span style="background-color: #ead1dc;">I had an idea in my mind how the appointment would go and what we would and wouldn't learn. I figured we would recap Isabella's medical history, the doctor would take some measurements of her body, and we would maybe have some blood drawn to submit for some more chromosomal tests. I didn't think we would leave there with much new knowledge, but rather hope that we could still find answers and an arrow that would point to where we could possibly search for a diagnosis.</span><br />
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</span><br />
<span style="background-color: #ead1dc;">To say that the appointment wasn't what I was expecting was an understatement. </span><br />
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</span><br />
<span style="background-color: #ead1dc;">Let me back up. The day started horribly. I was running around trying to pack diaper bags, snack bags, activity bags, and sippy cups. I was trying to get us all dressed and fed and out the door on time, and I would have until I remembered that I needed gas and cash for parking. I was rushing more than normal because I hate to be late, and so when I was making Isabella's breakfast and I saw her attempting to climb up onto her booster chair by herself I didn't rush over to her like I normally do to guard her if she were to lose her balance. Big mistake. She was just about up onto the chair (bar stool height chair I might add) when she completely fell backwards, smacking her back and then her head onto to floor. She made an odd sounding cry and I ran to her and scooped her up, waiting impatiently for that first deep breath after a major sobbing cry. It never came. She couldn't catch her breath, and completely went out, while her body flailed involuntarily for air. I was screaming at her to breathe and I was blowing air into her face trying to get her to react. Finally she took a few shallow breaths and whimpered a bit. She was white as a ghost, but she was breathing. I was shaking like crazy. She cried for a while and then asked me to get her "cozy under the warm blanket" on the couch. She was super pale for about 2 hours but her pupils, breathing, and alertness seemed normal. </span><br />
<span style="background-color: #ead1dc;"><br />
</span><br />
<span style="background-color: #ead1dc;">So if I wasn't a wreck already, that started our big genetics appointment day off with a bang. It was pouring, but the drive to Cleveland went off without a hitch. Parking was a big pain, but we made it to the genetics offices on time. I first met with the genetic counselor who asked me all of the questions I was expecting, detailing my pregnancy with Bells up to how she is doing currently. The doctor came in and it was obvious immediately that she had done her homework. Without even having to look at her chart on the computer, she started asking me specific questions she had about some of the holes in Isabella's history that she needed more info on, and if I wanted to add anything to what she already knew. Then the physical part of the exam began.</span><br />
<span style="background-color: #ead1dc;"><br />
</span><br />
<span style="background-color: #ead1dc;">I think one of the hardest parts of dealing with searching for a diagnosis is having people pull her apart and point to every feature she has trying to find fault in it as compared to the general population. Things that I just love about her become an anomaly to a doctor. I had no idea when she was born that her adorable second toe on both of her feet that lies slightly on top of her big toe almost as if it was stuck in there as an afterthought, would signal something was askew with her genetic material. I didn't know that her sweet ears that are cupped so perfectly and slightly stick out (just enough to tuck hair behind perfectly) and that sweet little dimple right next to her right ear meant that she was going to have to have test after test to find answers later on. </span><br />
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</span><br />
<span style="background-color: #ead1dc;">I have known for a long time that her eyes are widely spaced, that she has a low laying nasal bridge. That she has epicanthal folds, and that her muscle tone is ridiculously low. I've noticed along the way that her neck is slightly shorter than normal, that her mouth hangs open too often, that her palate is insanely high and arched. I have finally accepted that some of these features that make her so adorable to me also make her a statistic to a genetic beast without a name. But I didn't know until yesterday just how much of her body was affected by this glitch in her makeup.</span><br />
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</span><br />
<span style="background-color: #ead1dc;">Apparently her cupped ears are just too cupped. Her eyes are not only too widely spaced with the epicanthal folds and the low nasal bridge, but they are also too long from corner to corner. Her eyelashes are too thick, her eye brows are too sparse. Her nose is too short, her lips too thin. Her cheeks are too round and droopy, her skin is too rosy and dry, her teeth are too widely spaced. Her high arched palate is waaay too high (the highest the doc had ever seen) and she probably shouldn't have that underbite. Her mouth turns down too much, her top lip is too tented, her dimple on her ear shouldn't be there. Her hairline on the back of her neck is too low. Her neck is indeed too short and too broad. Her muscle tone is far too weak, her joints too flexible. Her nipples are too widely spaced. Her dimple above her butt shouldn't be there. Her toes shouldn't overlap, her big toe is too big. Her toenails that grow upward just aren't normal. </span><br />
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</span><br />
<span style="background-color: #ead1dc;">The list went on and on. Nothing about my perfect child is normal. Part of me felt like I was getting beaten up with every body part that was named off by the doctor to be recorded into her chart by the genetic counselor. Part of me was screaming and crying and wanting them to stop and to always believe that these parts of who she is mean nothing. But the other part of me was saying "YES!! finally we are getting somewhere. Finally we aren't beating around the bush, pretending that everything means nothing. Beat me up more if it means we will find out WHY."</span><br />
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<span style="background-color: #ead1dc;">Who knew that her perfect hands might hold the answer?</span><br />
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</span><br />
<span style="background-color: #ead1dc;">The doctor held up Isabella's hand to examine. She first looked at the creases on the palms of her hands, as I have done many times searching for that one line that could mean downs syndrome. It isn't there. In fact, unlike most of the "normal" population who have three dominant folds on our hands, Isabella doesn't have ANY dominant folds. Oh, there are wrinkles all over but they aren't very deep. There aren't any that stand out, and they are very random.</span><br />
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</span><br />
<span style="background-color: #ead1dc;">The geneticist then asked me if Isabella moved much while I was pregnant with her. Good question. She was my first, I answered, so I thought so. I didn't know how much a baby was supposed to move, but I felt her in there, and she always passed my kick counts. But I didn't realize until I was pregnant with Noah how much more she <em>should</em> have moved. How much stronger her kicks should have been. I didn't know. </span><br />
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</span><br />
<span style="background-color: #ead1dc;">She said that it is evident that Isabella hasn't been moving properly since conception. Those folds on our hands are formed by clenching our muscles in them and using them from the time they are formed. The fact that she doesn't have deep or dominant folds means that she has never, since conception, been using them "normally". </span><br />
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<span style="background-color: #ead1dc;">Okay. 'Learn something new every day', I thought. Still wasn't ground breaking. The kid has hypotonia, afterall. And that, too has been there since conception. </span><br />
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</span><br />
<span style="background-color: #ead1dc;">The doc then moved her eyes upward to Isabella's fingers. I looked at her fingertip and saw the blood blister on her middle finger that she got last week when Noah pinched it in my bedroom door. "That's not a mole" I told the doctor. I explained the blood blister but she wasn't listening. She was engrossed with the pads of her fingers. She kept looking at them, and then looking at the genetic counselor, and then back at the fingertips. She started to say "persistent fetal finger pads" for the counselor to record, but she stopped after saying it and looked right at me. </span><br />
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<span style="background-color: #ead1dc;">"I have to look something up. We will be right back."</span><br />
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</span><br />
<span style="background-color: #ead1dc;">And they were gone. All three of them (there was a medical student in there too). I was so confused. Yeah, I have noticed the pads on Isabella's fingers. They aren't too exceptional to me. They just look like a little bit of extra fat of fluid or something under the fingerprint of every finger, but they aren't noticeable or odd looking. Just cute. I have gone over Isabella's features with a fine toothed comb searching for things that could be part of her "syndrome" but never in a million years did I think that her fingertips could mean anything.</span><br />
<span style="background-color: #ead1dc;"><br />
</span><br />
<span style="background-color: #ead1dc;">The doctors were gone for awhile. I don't know how long exactly, because I was a nervous wreck. I absently read to Noah, broke up fights between he and Isabella when they both wanted the same book. I had been told earlier in the appointment that Isabella had already had every chromosomal/genetic test that could be done at that point, and that if we wanted to pursue an answer now, we would have to target each and every gene individually looking for an abnormality. That means we would need a specific syndrome in mind when we went to do the testing on individual genes, because they don't typically just start testing randomly... time and money (each test runs in the thousands) were against us.</span><br />
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</span><br />
<span style="background-color: #ead1dc;">When the doctor finally came back into the room, she was alone. And she had about three thick books open in her arms. She sat down next to me and didn't say anything for a moment. The genetic counselor then came in and looked at the doctor oddly, trying to tell her something with her eyes. The doctor said "what is it?" and the counselor responded "3000"... I didn't know what that meant, but I could tell that it wasn't good. </span><br />
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<span style="background-color: #ead1dc;">The doctor looked back to me.</span><br />
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</span><br />
<span style="background-color: #ead1dc;">"I don't know what your daughter has," she told me "but I do know that she doesn't look like you. She doesn't look like your son. She may have some resemblance to family members, but she has more features than not that make her look unique. When you start to put one or two of her physical findings together, they point to a genetic anomaly. When you add in all the ones I've found, you start to narrow it down. But honestly, there are hundreds of syndromes that present with hypotonia, low nasal bridges, and epicanthal folds. She has a lot of the typical signs for many different genetic syndromes."</span><br />
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<span style="background-color: #ead1dc;">At this point I was ready to rip those books out of her arms and freaking find out for myself what she was getting at. I KNOW this, I wanted to yell. I have self diagnosed this child 20 times already. I have googled and searched and wrongdiagnosed and googled some more. So what the heck does it all mean already??</span><br />
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</span><br />
<span style="background-color: #ead1dc;">***side note, I'm quoting the doctor the best I remember it happening. I wish I had a tape recorder at these appointments because I always seem to forget something, that's why it is important for me to write down now everything I remember the doc saying to me... I'm sure it wasn't exactly these words in this order, but this is how I remember hearing it*****</span><br />
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<span style="background-color: #ead1dc;">"What I am most impressed about with your daughter is the pads on her fingers. This finding isn't as common as some of the others. We are all born with these pads, but after infancy they fade away. We have seen in some syndromes that they never go away, and then we call them persistent fetal finger pads. Your daughter has these. When you pair them with some of the other physical characteristics your daughter has, it narrows it down more to less possible syndromes. The one of these that I think fits your daughter best is something that is a relatively new syndrome. Not new in that it hasn't been around forever, but new to being labeled and identified as a syndrome. It was discovered in 1981, and until 6 months ago, there was no lab test that could be done to identify it. All diagnosis were made on a clinical basis."</span><br />
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</span><br />
<span style="background-color: #ead1dc;">OKAY SERIOUSLY LADY. Just out with it. I don't want to know the history of the syndrome before even knowing it's name. </span><br />
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</span><br />
<span style="background-color: #ead1dc;">"The test that is available now is for a particular gene that has been found to be abnormal in 2/3 of the people who have been diagnosed with this syndrome. That means that there are 1/3 of people who we know to have been clinically diagnosed that this gene is normal in. So test might not tell you for sure whether your daughter has the syndrome. But it might. Only about 3 labs in the country test for this, and it is very expensive, around $3000."</span><br />
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</span><br />
<span style="background-color: #ead1dc;">Finally she took one of the books and turned it right side up to the page she had marked. I looked down and pictures of 4 or 5 little kids stared back at me. Kids who looked pretty flipping similar to how my girl looks.</span><br />
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<span style="background-color: #ead1dc;">Kabuki syndrome. Kabuki syndrome. Kabuki syndrome. Those words have been repeating themselves in my mind from the moment the doctor said them. Like a song I can't get out of my head. I literally woke up numerous times last night and those words were already in my mind, still on repeat, still trying to decide whether they want to threaten or befriend me.</span><br />
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</span><br />
<span style="background-color: #ead1dc;">So to lay it all out, no, we don't have a definite diagnosis. No, she doesn't fit ALL of the symptoms that the syndrome has, especially some of the major medically debilitating ones like heart defects and kidney problems. Some kids with Kabuki Syndrome have high arched eyebrows that are thinner on the outer edges. Bella has kind of sparse eyebrows, but they aren't at all arched. Kabuki kids typically have large protruding cupped ears. Hers are cupped, but of normal size. </span><br />
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</span><br />
<span style="background-color: #ead1dc;">Not everything fits. But a crazy amount does. From her panic like reaction to some sensory stimuli to her overly happy demeanor. Most kids have frequent upper respiratory infections and many ear infections (yup). They have a lot of the other odd physical characteristics that Bells displays (especially the high pitched nasally voice, the cleft or high arched palate, the hypotonia, the many parts about her eyes that are different, the finger pads) but the behavioral ones just as astoundingly similar... (feel free to skip all the following traits that she shares, I'm writing them down now while they are freshest so I have something to refer back to later...)</span><br />
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<strong><span style="background-color: #ead1dc; color: magenta; font-size: large;">What Isabella shares with people diagnosed with Kabuki Syndrome:</span></strong><br />
<span style="background-color: #ead1dc;">thick eyelashes, long palpebral fissures (measurement from inner corner to outer corner of the eye), sparse eyebrows (Bella's are too sparse, but mildly) prominent or cupped ears, depressed nasal tip, short nasal septum, flat nasal bridge, broad nasal root, epicanthus, small fifth finger, persistent fetal finger pads, developmental delay, hypotonia, hyper extensible joints, feeding difficulties (in infancy with bells), recurrent infections (especially ears), small mouth, thin upper lip, high arched palate, misalignment of teeth, seizures, ptosis (drooping of upper eyelid), droopy skin under the eyes, preauricular pits (dimples in front of ears), sensory integration dysfunction, delay in speech, poor coordination, tactile defensiveness toward certain sensations and stimuli, panic-like reactions to some noises, aversion to some foods/textures, fixation on certain thoughts or activities (with bells she tends to repeat questions or statements over and over even after we have acknowledged what she has said. she also fixates on certain events, such as the time Noah opened the door and let the cat in the house on accident, and she will talk about them daily for months), excellent memory- especially for song lyrics, dates, numbers, etc., some autistic type behaviors, poor sucking/swallowing in infancy, reflux, undiagnosed periodic diarrhea, nail/skin abnormalities, rosy and dry appearance to cheeks, foot and gait issues, sensitivity to oral stimulus, poor sensory integration and proprioceptive skills, interest in music and rhythm, slow weight gain as infant, poor sleeping as infant, weak facial muscles, picky eating (like many Kabuki kids, Bells is selective in what she eats and only eats a few things obsessively for a period of time, then will occasionally change what those foods are), better receptive than expressive skills, drooling, strong gag reflex, wide set nipples, low posterior hairline, flat footed, very social, poor eye contact, happy disposition, excessive need for affection and praise, repeats certain phrases/words/questions over and over, intellectual disability, sensory/motor integration delay, gross motor delay, fine motor delay, motor planning delay, sacral dimple (in tailbone), decreased body awareness, sensitivity to loud noises, history of having petechiae.</span><br />
<span style="background-color: #ead1dc;"><br />
</span><br />
<span style="background-color: #ead1dc;"><span style="color: magenta; font-size: large;">Things Typical in Kabuki Syndrome that Isabella does NOT exhibit:</span> <span style="font-size: x-small;">(biggest missing links seem to be lack of skeletal, caradiac, and renal problems as well as the arched eyebrows and large ears)</span></span><br />
<span style="background-color: #ead1dc;">Larger than normal ears, lower palpebral eversion, arched eyebrows, divergent squint, strabismus, poor eyesight, hearing loss, cardiac abnormalities, failure to thrive, kidney abnormalities (although she has had one major UTI and Kidney infection that landed her in the hospital for a week), small stature (but it may be too early to say...Nik isn't the tallest guy to get height dna from!), delayed bone growth, scoliosis, tantrums and difficulty to calm, self injurious behaviors (we are so lucky, we really dont have any behavioral struggles beyond having to remind her of appropriate social behavior such as not hugging strangers), hyperactivity, some skeletal abnormalities, OCD traits.</span><br />
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</span><br />
<span style="background-color: #ead1dc;">OKAY! so what does all of this mean??? </span><br />
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</span><br />
<span style="background-color: #ead1dc;">Good question. Number one, we need to find out if BCMH will cover the cost of the genetic test. If so, we will do it, and if it is positive, then we have our diagnosis. If it is negative, she still may have Kabuki, since that particular gene does not seem to be the only one that needs to be abnormal in order for Kabuki syndrome to present. Number two: we need to get yet another ENT to scope her nose and throat. With such a high palate and nasal voice, it is possible that she has a cleft somewhere that we are unaware of. If so, chalk one more up to her similarities to people with Kabuki. Number three: talk to her neurologist about having the Sedated MRI (ughhhh!). I totally don't want to do this one, especially since kids with low muscle tone tend to have some difficulties with sedation. But if he says we should, we can A. check the lactic acid levels in her brain to (hopefully) rule out a metabolic disorder and B. see if any brain abnormalities (hydrocephalus) are present that are also present in Kabuki patients. If so, chalk another one up to Kabuki. </span><br />
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</span><br />
<span style="background-color: #ead1dc;">Okay, Information Overload, I know. I really just wrote all of this down so I know where I need to search, what I need to do, and how I feel about her having this syndrome. It seems so real. I feel like she has enough of the similarities to fit the bill, but the geneticist and I both agree that there isn't quite enough to give her the clinical diagnosis yet. If we find more correlations or if the genetic test comes back positive, we will re-evaluate, but for now we are kind of at a stand still. There are still some bigger features that she doesn't have, so I just don't know what to think. I guess I have more research to do.</span><br />
<span style="background-color: #ead1dc;"><br />
</span><br />
<span style="background-color: #ead1dc;">So now the major important stuff (haha, as if all of the above wasn't major or important.) If this is what Isabella has, IT IS NOT PROGRESSIVE!!! meaning, she will always have the issues that she has, but nothing should necessarily get any WORSE per say, meaning she shouldn't have any loss of already acquired skills. While she has already had an echo that showed no heart abnormalities, and test on her kidneys while she was hospitalized for the infections that showed no abnormalities, I would like to have these rechecked at some time just to make sure. </span><br />
<span style="background-color: #ead1dc;">Also, she shouldn't have a shortened life span because of this syndrome. (HUGE sigh of relief!)</span><br />
<span style="background-color: #ead1dc;"><br />
</span><br />
<span style="background-color: #ead1dc;">It is unknown how much of this is passed on and how much is a mutation in her dna. I have read that both can occur to cause Kabuki syndrome. I asked the doctor what she thought our HIGHEST chances are of passing this on if it is indeed genetically linked to Nik and I (which we could only know if we each wanted to take the $3000 test and have only a 66% chance of accuracy) and the doctors response was exactly what I thought...25%. But that doesn't mean that we KNOW we have a 25% chance of passing it on. Only that if we are both carriers, that would be the HIGHEST likelihood possible of passing it on. A lot of what I'm reading shows that this may be a sporadic mutuation in most people. I can only hope that is the case with us. </span><br />
<span style="background-color: #ead1dc;"><br />
</span><br />
<span style="background-color: #ead1dc;">So overall, I'm okay. I know that Isabella's life will be affected by whatever genetic condition she has. Because it already has been. I could write all night about how I am feeling about all of this and all of the thoughts I have been thinking, but I think this is long enough for one post. Trust me, there will be many more coming soon, because I need to clear my mind. But in a way, I almost hope that this is what it is so I can be done with our search. It isn't a horrible condition to have. It doesn't change who she already is or who she is already destined to become. It doesn't change what we are doing to help her or to what extents we are willing to go to to change her world. It only makes me love her more, understand her more, and give her my patience more. Nik and I were just talking about how we almost feel lucky and blessed that this happened to us because even though whatever syndrome she has doesn't define her, it does contribute in a major way to who she is. And I honestly wouldn't have her any other way.</span><br />
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</span><br />
<span style="background-color: #ead1dc;">Believe it or not, I am leaving so many holes in this story as to how I feel and what comes next, but it's time to snuggle my loves and go to bed. Once again, I apologize for the longest post in the history of blogs, but I had to purge some of all these medical terms so that I never have to make this list again! I feel like this could possibly be the end of this lonnng search for answers, but at the same time only the beginning. Which is good and bad and scary and exciting and happy and sad all at the same time. I had no idea I could feel so many emotions all at one time, and it's physically and mentally draining, while at the same time it makes me manic to want to learn more. I'm not sure how to describe exactly what I am feeling...</span><br />
<span style="background-color: #ead1dc;"><br />
</span><br />
<span style="background-color: #ead1dc;">But guess what? Tonight, my anxiety is on vacation. </span><br />
<span style="background-color: #ead1dc;"><br />
</span><br />
<span style="background-color: #ead1dc;">...more to come</span><br />
<span style="background-color: #ead1dc;"><br />
</span><br />
<span style="background-color: #ead1dc;">ps...isn't she perfect?</span><br />
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Mikaelahttp://www.blogger.com/profile/04299699527313278772noreply@blogger.com8tag:blogger.com,1999:blog-6664505081414281499.post-84538386219178135952011-03-08T12:36:00.000-05:002011-03-08T13:34:53.263-05:00Reader Beware...I'm in rare form this week. But sadly, rare form is seeming more and more like normal, and I'm not a fan.<br /><br />It's been so long since I've written, mostly because of a bad case of writer's block mixed with kids who really can't stay self satisfied for more than two minutes at a time. But also because I'm totally weighed down with anxiety lately, and I was afraid that writing about all of the things I'm worried about will only make me dwell on them more... but I've gotten to the point where I have to do something about all my crazy emotions, and writing has never let me down in the past, so here I go.<br /><br />Bells has an apt. with the geneticist on Thursday. I'm so nervous. I go back and forth between wanting to know and wanting to live in a land that isn't quite denial (just not possible anymore) but is more like not wanting to commit to a label that might be more debilitating later on than we even can imagine. I can't believe that back when I thought she might have mosaic downs syndrome I was completely torn apart for weeks. Now, a diagnosis that "benign" would have me thanking God for sparing us of all the other "could be's" that are so much worse. Especially metabolic disorders.<br /><br />But even if it isn't a metabolic disorder, I'm still terrified. I have always dreamed that a family with four kids is the only way to feel complete. After having Noah (which happened to be around the time I accepted that there was something different with Isabella) I even accepted that maybe, MAYBE I could live with just having three. But two? No way.... I'm totally not done toting a newborn in my sling, listening to the sighs and cat like meow cries. Totally not done struggling through either nursing successfully or weaning successfully. Totally not done feeling the pride of having people look at my brand new baby in public. Totally not done watching my husband nervously fret about supporting that bobbing fragile head while holding a newborn for the first month. Totally not done teaching my kids about how to be good big siblings. Totally. Not. Done.<br /><br />So what if? What if this doctor, while searching for a diagnosis, agrees with the SIX other doctors that believe that she has a genetic disorder? What if, whether she ever can find what is wrong or not, she tells me that the chances of Nik and I passing this on to another child are just to high to ignore? What if whatever Isabella has can show up worse in another baby? Because to be honest, if we were guaranteed six more babies JUST like Bells, I'd think I won the lottery. But what if I had a baby that needed more? That struggled more? That I worried about more? That just isn't healthy enough to survive?<br /><br />I know that I won't leave the appointment on Thursday with any definite answers. Best case scenario, this new doc can give us a direction in which to start testing with more accuracy, and can give me a very vague and general idea of where we stand in passing possible genetic faults on to future babies. Which of course will only lead me into a whole all too familiar world of anxiety from waiting for answers so I can decide what to do. When all I really want is for someone else to make all the decisions for me right now because I'm thisclose to giving up this week. <br /><br />In other news, I'm seriously starting to think I have hypochondria. All this worrying about what Isabella's symptoms and syndromes mean has me convinced I'm dying of something that I don't know about yet. Talk about anxiety. What is wrong with me?? I used to be completely fearless of death, just considered it part of life. I was more concerned about being the one left behind than to be the one leaving others on this earth. But babies change everything. Now I'm so worried about what will happen to my kids if I die. Will they think I just up and left them? Will they be fretted over as obsessively as I fret over them? Will they have clean and matching clothes to wear to school? I totally know that these are ridiculous things to worry about, but I'm seriously in an anxiety state that knows no reason. For example, I just went for a full body mole check 3 weeks ago, and I'm already convinced that I have three new moles that may be cancerous, and need to be checked out. Poor Nik. We haven't even gotten the $165 bill from my last apt (not to mention whatever pathology bills us for for the removed mole that thankfully came back normal). And then I start to have anxiety that the people at the dermatology office will think I'm a lunatic for coming in for THREE full body mole checks within 5 months. When all I want to tell them when they give me attitude for making yet another appointment is that I am SO afraid of having to explain to my kids someday that I won't be here forever that I'm willing to do whatever it takes (even driving myself insane with anxiety) to prevent it.<br /><br />I think what all my anxiety boils down to is my lack of control. How is a mother, whose job it is to keep other human beings alive and happy while teaching them how to be loving and caring and productive members of society, supposed to be okay with not being in control over keeping her kids from having genetic disorders? And how is she supposed to be okay with knowing that any day could be her last, and she's worked so hard just to leave behind kids that will feel like she left them, but who will probably not even remember her in two or three years time anyway? <br /><br />Sorry about all the drama and crazy thoughts. I warned you tho. It's no wonder Isabella's new line is "Calm down, Mom." I'm a walking ball of stress. Hopefully Thursday's genetics appointment will leave me feeling at least a little relived, if only because the anticipation of waiting for another scary appointment is over. I really need to get out of this funk because it is making me feel like a miserable person. I feel like I'm not enjoying my kids or my husband enough lately, and I'm not living up to who I want to be. I spend too much time freaking and not enough time appreciating. I just want to know with certainty that I'm REALLY doing everything I can do for my family's health. I don't want something to happen that I could have prevented.<br /><br />Now if only hubby would get home from work with the bag of Caramel Ghiradelli Chocolates he promised me. (I'm all about self medicating my stress ;) )Mikaelahttp://www.blogger.com/profile/04299699527313278772noreply@blogger.com2tag:blogger.com,1999:blog-6664505081414281499.post-85525292947262215452010-11-21T11:56:00.000-05:002010-11-21T12:36:50.044-05:00Crazy 8I had an interesting experience at the mall yesterday. Nik was walking around the mall's wide corridor with Noah, (who refused to sit in his stroller and instead demanded to walk like some big wig teenager pushing people out of his way and paying no attention to whether anyone followed him or not), while Isabella and I wandered around the Crazy 8 store in search of jeans for Noah on the clearance rack. Isabella was sitting in the stroller touching racks of clothes as she passed through them and intermittently asking for a cookie, a mall ritual that we started a while back. While I scanned the circle rack, I noticed another mom doing the same nearby with a daughter about Bella's age in tow. My attention immediately went to the little girl first, and my heart did the little skip-a-beat-to-my-stomach-and-turn-to-a-knot as it usually does when I watch another child Isabella's age do things that I so want my own girl to do. She galloped (literally galloped) around the rack, talking a mile a minute in sentences that seemed far advanced for a child that age, but who am I to say when I don't even know how a normal 4 year old really talks. Isabella noticed her too, and her eyes lit up and she started saying "hi friend, hi friend!!" repeatedly, waiting eagerly for a response out of the other girl, who looked at Bells briefly and then looked away, only to look at her again with a dirty look. My attention then went to the mom, who continued her search on the circular rack, the same sweater dress in her hand that I myself held for my daughter. I couldn't help but think how odd it was that two girls would be wearing the same dress, in most likely the same size...looking so similar but acting so different. I started to feel a little sad, so I looked away, back to the girls, who were now an arms length away from each other. I watched as Isabella reached out and grabbed the other girls hand and smiled at her. The other girl looked down at the floor but didn't let go yet, just let Isabella hold her hand for a few seconds until she broke free and ran closer to her mommy. I started to walk away when I overheard the other girl say to her mommy in a nasty tattle-tell way "MOMMY! That little girl just told me that if I didn't give her my bracelet she was going to break it!" I looked back and saw the girl pointing straight at Isabella, who was now drinking her juice and oblivious of what was going on. The mom replied with a distracted "what bracelet hunny?" and the girl said "THIS bracelet (holding up her arm to her mom) The one I got for my birthday!" The mom looked down at her and then over to us and said to the girl "well that was a mean thing for her to say to you. Don't give it to her."<br />To say I was shocked was an understatement. I was crushed. I could NOT believe that a child that young could be so manipulative and vindictive, and I had no idea that they even held the ability to lie like that. And for what? What reason would a 4 year old have to lie? She was in no danger of getting in trouble. And honestly, where did that story even come from? It scared me to think that this child's thought process could even go in that direction, that just because she was a little uncomfortable with another child's touch or show of affection that she felt threatened enough or insecure enough to tell a horrible lie. <br />For a minute I just stood there, thinking about going right over to that little girl and calling her a liar, a brat, a horrible little shit. And then I thought about going over to the mom and defending Isabella, telling the mom that she will NEVER meet a sweeter little girl, will never meet another child who only wanted to love everyone, who only cried when other kids wouldn't hug her when she wanted one, or who, if asked, would give another child whatever they wanted. I wanted to tell her that if it were MY child that were wearing the bracelet in question, and the other little girl wanted it, she would have given it to her in total excitement, THAT is the kind of child my daughter is. And then I wanted to say to her that even IF my daughter would say something like the lie that her daughter told, she could never say it in a way that she nor her daughter would understand. She has speech delays lady, I would say. Prove that she said that, go ahead. Ask her to repeat it. Chances are you wouldn't understand a word of what comes out of her mouth. I would say you might consider yourself lucky after meeting my kid that you have a daughter who can gallop and carry on a conversation with you and can speak so clearly I can hear her lie across the store, but I pity you. I'm the lucky one because my daughter just wants to make people happy, even if she can't skip or tell a lie clearly.<br />But I didn't say that. Instead I turned around and walked away, listening to my daughter singing "happy birthday" in the front of the stroller. It dawned on me that she must have heard the girl call it her birthday bracelet and here she was, singing "happy birthday" to this girl who would have gotten total pleasure out of seeing her get in trouble. Singing happy birthday in the most beautiful, high pitched yet still soft voice, the words, while still a little jumbled and not pronounced just right, were becoming more and more clear with each verse. <br />I felt so proud right then. So proud that I have such an amazing little soul in my life who knows more about love and acceptance than I can ever hope to know. As we walked out of the store she turned around to look at me and said "NOW i can have a cookie mommy?" and I said, "yup love, now it's time for you to get a cookie"...<br />....so i bought her three ;)Mikaelahttp://www.blogger.com/profile/04299699527313278772noreply@blogger.com2tag:blogger.com,1999:blog-6664505081414281499.post-71167871693352439552010-10-14T11:15:00.001-04:002010-10-14T13:39:45.965-04:00Weight of the WorldI woke up yesterday morning with the weight of the world on my shoulders. And I mean that in the most literal and positive way. Both of my little loves were in that dreamy half asleep state where they cuddle deeper under the covers and crawl closer to me so that they can rest their heads on my shoulders for just a few minutes longer before our day begins. And as I soaked up the last moments of their warmth next to me I thought <em>this is IT.</em> This is what my life is for. They are my world and they give my world meaning and purpose and <strong><em>weight</em></strong>. And it was heavenly.<br /><br />But our heavenly moment didn't last long. It would be next to unheard of for these wild monkeys to stay in bed past 7am, so we were downstairs getting ready for our day just moments later. And it was a day I had been dreading for a long time... we had an appointment with one of Isabella's neurologists at Akron Children's Hospital. With the same neurologist who told us about a year ago that due to high lactic acid levels in her blood, Isabella was most likely suffering from a mitochondrial metabolic disorder and we needed to see a specialist...stat. Well of course it would take over a month for our insurance to even cover seeing said specialist and a month longer for said specialist to even fit us into his booked-for-6-months schedule, and during those terrible, painful, incredibly long two months I did research. And it was terrifying. Everything I read was bad news, and I was a wreck. I was still in emotional trauma from Isabella's seizures and week long hospital stay a few weeks prior, and added to that this possible life shortening diagnosis, I didn't go an hour without a break down. <br /><br />But ohhh the specialist. He was wonderful. He calmed my fears and told me that although we repeated the blood draws 3 times, all resulting in elevated lactic acid, the particular test is not always reliable on children because their struggling alone during the blood draw could falsely elevate the results. And after meeting Isabella he thought it was more likely she had some kind of genetic cause for her symptoms than a metabolic. He ordered some more tests, including more blood work for other possible markers for a metabolic disease, and did another whole right up for more genetic testing. A few weeks later her results all came back close enough to normal that we were still without a diagnosis, but we could neither rule out or in a metabolic disorder. He seemed very confident that she did not have one, however he said he could not rule out her showing signs of one later in life, as some people show no symptoms of these diseases for a whole lifetime until one day it strikes out of the blue. He reminded me that every day Isabella was progressing and not to worry. He referred us to an opthamologist who specializes in children with genetic disorders in hopes that he could pin point in what area of her DNA to search for a possible defect. He also told us to see a geneticist who could measure different areas of her body and put it in a database which would show others who have similar make ups in hopes we could find a diagnosis.<br /><br />Soo off to more specialists. Unsurprisingly, our insurance shut us down immediately when it came to covering the genetics specialist. They would pick up the opthamologist, so we made the appointment. He did all kinds of tests and gave her eyes a clean bill of health...her vision was fine and he could not see anything to pinpoint any genetic malformations. (hoorayy!)<br /><br />In the meantime, I had meetings with a nurse for BCMH (bureau for children with medical handicaps) who had been working with us for months to get us approved for funding. We weren't optimistic because BCMH only approves children with a diagnosis, and that diagnosis MUST fall under a list of things they cover. Somehow our miracle specialist of neurology in Cleveland wrote her file in such a way to get her covered (he diagnosed her with "unspecified seizure disorder with neurological components") and we got approved! But by the time this news made it to me, I was back to feeling happy and confident in Isabella's progress and I didn't want another doctor to bring me bad news. I chose to live in a bubble for a few months longer, and I didn't make the appointment with the geneticist.<br /><br />Which brings us to Isabella's follow up appointment with her first neurologist in Akron. I was dreading it. I have not ONCE walked out of that office feeling good or confident or reassured. I knew I had only good and positive things to tell the doctor regarding Isabella's progress in the past few months, but I was scared of what she might say about how Isabella was still behind or weak in other areas. <br /><br />So I rushed around yesterday packing lunches and toys and in-case-of-extreme-meltdown tootsie pops and we headed to Akron. I knew from experience to not go to that office alone, so I called my step-dad to meet me there to stay with Noah in the waiting room while Bells and I saw the doctor. One good thing about that place- they have an excellent waiting area complete with a slide, blocks, toy cars and a huge fish tank. The kids were in heaven, which helped ease my stomach nerves while I waited for her turn. <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFq8moXD-ndwbS68zzbD3LPQ853syAS_VlXl1kkF6x77oPgwXQuLtEnB8niAfhwiCfzD6fvtsYkPVWg33PiCHcB2li1iQ_ePP0kknYNCziibdZjG7KnwFty5JYp4d7geJRtVug-W5MzDw/s1600/kids+fish+tank.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 213px; height: 160px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFq8moXD-ndwbS68zzbD3LPQ853syAS_VlXl1kkF6x77oPgwXQuLtEnB8niAfhwiCfzD6fvtsYkPVWg33PiCHcB2li1iQ_ePP0kknYNCziibdZjG7KnwFty5JYp4d7geJRtVug-W5MzDw/s400/kids+fish+tank.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5527948195145057506" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSFT_aj-VgYhNZqVsBSJMNnn3u7oGr4Q0IiQoedbKVJ8SrVXI3JBx7nWx2eTzoIdGL4j5TXD3ayULnmmcLDiAG8FUVkPuuYwp9pSaQ749OrvzK39sn0_GCCYnu8wrj-xjQOGfmosv1AWc/s1600/kids+fish+tank3.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 213px; height: 160px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSFT_aj-VgYhNZqVsBSJMNnn3u7oGr4Q0IiQoedbKVJ8SrVXI3JBx7nWx2eTzoIdGL4j5TXD3ayULnmmcLDiAG8FUVkPuuYwp9pSaQ749OrvzK39sn0_GCCYnu8wrj-xjQOGfmosv1AWc/s400/kids+fish+tank3.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5527948817691268514" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEil_FHWO2_jkYjzZZP-ghVHm8GwG9LPeQhFe22caMGjObzHYLnNq6ZhWsQlnuyDd3YBKc2LiG_UMUNI9oy5pG7oej2NS6zYxh-9BPVJhk-mZi_xpKE3QE39uKo_ajGlDHAwavMRF7Z8R7g/s1600/kids+fish+tank2.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 213px; height: 160px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEil_FHWO2_jkYjzZZP-ghVHm8GwG9LPeQhFe22caMGjObzHYLnNq6ZhWsQlnuyDd3YBKc2LiG_UMUNI9oy5pG7oej2NS6zYxh-9BPVJhk-mZi_xpKE3QE39uKo_ajGlDHAwavMRF7Z8R7g/s400/kids+fish+tank2.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5527948806959649954" /></a><br /><br />And then her name was called. We walked to the nurse's station so they could weigh her (35.5 pounds!!) and take her blood pressure (SHE LET THEM DO IT without a fight, and even giggled and said "that tickles!" What a change from a few short months ago- I was so proud!). When the doctor came in I informed her of all the progress she has made in the past year since her seizures including her HUGE language explosion (she went from about 40 words to an unlimited and ever increasing vocabulary including full sentences and question asking!). I told her about how she knows her ABCs and can count to 29. I told her about how she knows her colors and can count to 10 in Spanish. I told her about how she can jump and how she can memorize songs and books and knows her phone number. I bragged and bragged and told her probably too many useless-to-her facts. When I finally stopped the doctor turned to Isabella and started asking her questions about school and her colors and what she would be for Halloween. She answered every question, pointed to every object on a picture board the doc showed her, and showed her how she can jump and run (albeit awkwardly). I watched Isabella do this with a fist around my heart. The past nearly 4 years of her life flashed through my mind and I couldn't believe how far she has come and how much she has endured to get to this place. Every parent knows what pride is, but how I feel for Isabella goes so beyond that. <br /><br />When she was done with showing off her skills, I asked the doctor how she felt about Bella's progress. I asked her how far behind she really thinks she is, and if she is closing the gap now that she is talking so much and telling us how much she really knows. The doctor said that yeah, she agrees that her understanding of language is 100%, and that she has an appropriate amount of words and sentence structure for a child her age, but that her fluency and annunciation were lower than normal. She thought that much of this is due to her hypotonia, but that we should ask Isabella's ENT to check her throat with a scope to make sure there were no anomalies causing her speech problems. She also thought that we should look into going to a private speech therapist again in addition to the therapy she is getting in school. <br /><br />Then she asked about the metabolic results. I told her everything that we had learned from the specialist and she seemed doubtful that her high lactic acid was a result of faulty testing techniques. She decided that she wants to investigate this further with a special type of MRI called an MRS. This new test looks at the amount of lactate build up in the brain to determine if her lactic acid is elevated there. If this test shows that it is, it is quite indicative of a metabolic disorder. The test requires around 45 mins of sedation. She also agreed with the specialist that we need to see a geneticist.<br /><br />So we scheduled the MRS for Nov. 23rd and I made a mental note to call insurance about the geneticist again, and I walked to my car feeling like my safety bubble of contentment had popped and I was left with a mess of nerves and fear and 'what ifs' and 'whys' that I was a few months ago. I drove home with two sleepy kids and thought about how I have a choice. I could let this fear paralyze me or I could work through it and continue to enjoy my kids while I fight for my daughter's health and future. I chose the latter...because although it is a constant struggle with setbacks and unknowns, I need to know that I am doing everything for Isabella that I can, and if we find a diagnosis that has a course of treatment for her that we are not currently following, maybe it can help her to progress even further. My happiness rises and sets on my children and will do anything to make them happy and healthy and safe and thriving in return. I have been through the fear of being a mother of a special needs child for almost FOUR years now, and with it comes the most unbelievable feelings of pride, success, happiness and excitement of what is to come. I can and will do anything for these kids. I CAN DO THIS. <br /><br />After the kids were in bed Nik and I talked for a long time. We realized that even if we find a diagnosis, Isabella will still be the same amazing, happy, sweet and gentle child that she has always been. Her life might be different than the average child, or it might not be. But as her parents, we will search for and provide her with every opportunity available to enrich her life. It is amazing to me that although it is our job as parents to teach her about kindness and empathy and love, she has already taught me more about that in these past four years than I had learned in the twenty something years before she came into this world. This child has a soul that seems to understand the deeper meaning of life and why we are here and how to live and love and make an impact. And she teaches me about it every day.<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLo9NiD-Etfq-rHqZqy15DhIXluOSwPb6qt4fvr3rwcB7syFJt9VlHCeIT2uVpVguQukblgkzDylMQnlVPwR1FfWa_ZucZRN-rl12Zcz0Rv0apsHmcAG2hoBIyivEo6Gnl3r48Mb0jXME/s1600/bells+sad+eyes.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 120px; height: 160px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLo9NiD-Etfq-rHqZqy15DhIXluOSwPb6qt4fvr3rwcB7syFJt9VlHCeIT2uVpVguQukblgkzDylMQnlVPwR1FfWa_ZucZRN-rl12Zcz0Rv0apsHmcAG2hoBIyivEo6Gnl3r48Mb0jXME/s400/bells+sad+eyes.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5527949651529137266" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9iYha_X0mUFXeSa4gqtwqduXuGM8gWXAPlTrg9ZLVnVshtUXAmDyJ_eZ9WWNuL9-ktv_RXPFnQ4_M1mDyIlDdIS9lzhp8_9ShUc3lASXN4HdWpzRzzSF4eyQGlfc5PXs_CmUut-MfNuQ/s1600/bells+apple.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 120px; height: 160px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9iYha_X0mUFXeSa4gqtwqduXuGM8gWXAPlTrg9ZLVnVshtUXAmDyJ_eZ9WWNuL9-ktv_RXPFnQ4_M1mDyIlDdIS9lzhp8_9ShUc3lASXN4HdWpzRzzSF4eyQGlfc5PXs_CmUut-MfNuQ/s400/bells+apple.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5527951381606408610" /></a><br />Before we got into bed I scooped Isabella from hers and Nik grabbed a sleeping Noah from his crib and we all cuddled up together in our bed. I just needed to be close to them all. I put one arm under Bells' head and the other under Noah's and I fell asleep....with the weight of the world on my shoulders. <br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgZzoCXHwjeI5sPBcgRatX_H1s2mFsrY7TmEZ1o_Qq7qr1mCknrmaWPo8x9JdeCI_1Ks4gwMiFPBXVb9mrsnbEuQBLnkSHQ6RUFL-b20lAu51guQgLuCl3XkzRdX7fbo2YVQIhSO_0CwiE/s1600/kids+love.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 120px; height: 160px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgZzoCXHwjeI5sPBcgRatX_H1s2mFsrY7TmEZ1o_Qq7qr1mCknrmaWPo8x9JdeCI_1Ks4gwMiFPBXVb9mrsnbEuQBLnkSHQ6RUFL-b20lAu51guQgLuCl3XkzRdX7fbo2YVQIhSO_0CwiE/s400/kids+love.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5527952402955941746" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGlykiVr2DPuysIMjW1d1flmClagAHCdHwzWMnUR0oI5f1TqAGNOtbwRel5_Tbn1VJys8BT8nhpg-hqu1TuoeOBz6BdLNMIb3X6Cp2-Z76Kw581PENHbH5_Jv_cBFYKM_mCTeUK3D00m0/s1600/kids+love2.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 213px; height: 160px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGlykiVr2DPuysIMjW1d1flmClagAHCdHwzWMnUR0oI5f1TqAGNOtbwRel5_Tbn1VJys8BT8nhpg-hqu1TuoeOBz6BdLNMIb3X6Cp2-Z76Kw581PENHbH5_Jv_cBFYKM_mCTeUK3D00m0/s400/kids+love2.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5527954520299129234" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMvIVe1r87iyBuD_GCVXw_u2X9Y8lcGcfU6A8L4P6nXim8HZJPl-hdBkb315KVzWHtYrymsn-RNsH7tcym1PxNphATOHXj-ZBbf7zDl_rt5uBP_StX9JFe_ulK46ZHBu8kFMrM4UVluqc/s1600/kids+love3.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 120px; height: 160px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjMvIVe1r87iyBuD_GCVXw_u2X9Y8lcGcfU6A8L4P6nXim8HZJPl-hdBkb315KVzWHtYrymsn-RNsH7tcym1PxNphATOHXj-ZBbf7zDl_rt5uBP_StX9JFe_ulK46ZHBu8kFMrM4UVluqc/s400/kids+love3.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5527954522108802194" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJ3z2l1L1Sqi_OYLaNzRKded5ENLBvsCJNBqTiGXZRqOsT_TBxa7UfDty7N8MqsRxD6Ka3tV037AhGXwFcIDADwOaXXmfhAq0dLJdPk9HX2m6tA-iVZq1aE0gPjLaM4SCVnSx24nJtnDg/s1600/kids+love4.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 213px; height: 160px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJ3z2l1L1Sqi_OYLaNzRKded5ENLBvsCJNBqTiGXZRqOsT_TBxa7UfDty7N8MqsRxD6Ka3tV037AhGXwFcIDADwOaXXmfhAq0dLJdPk9HX2m6tA-iVZq1aE0gPjLaM4SCVnSx24nJtnDg/s400/kids+love4.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5527954518821501858" /></a>Mikaelahttp://www.blogger.com/profile/04299699527313278772noreply@blogger.com1tag:blogger.com,1999:blog-6664505081414281499.post-27704508717104675662010-07-19T13:02:00.001-04:002010-07-19T14:24:23.324-04:00Jumping beanIt seems like forever since I last updated, and because we have been uber busy with the day to day routine, I just haven't felt like there has been a minute of my time that I would rather blog than just lay on the couch for a short break. Soo now my guilt about not writing on here has finally overtaken my laziness during Noah's nap hour and here I am.<br /><br />The last couple of weeks have kind of been up and down for me emotionally. Just when I think I have gotten a handle of Isabella's lack of a diagnosis my fear bubbles over again and punches me in the gut. I always go back to the lingering possibility that maybe she has something more serious than we think that will only later present itself as a progressive disease. And when that recurring nightmare starts back up again I go into self-sabatage mode and start my ever lasting internet search for possibilites of an answer. It almost always starts at wrongdiagnosis.com where I do a search for all of her multiple symptoms (hypotonia, skin mottling, high lactic acid, developmental delay.....) and I always come up with at least one thing that could possibly be IT... and then I mourn and cry and let myself be eaten up with worry over the WHAT IF's and the WHAT IF NOTs and I can't eat or sleep or even be nice to my poor hubby. My poor hubby that takes all the brunt of my maternal fears and manages to talk me back to reality even after I blow up on him multiple times just because HE isn't in freak out mode too. But all it really takes is for him to tell me that today she is happy and healthy and perfect and if I don't take advantage of that right now, I might not have the opportunity to do it later...and eventually I get my emotions back on track. <br /><br />So that's what I've been doing. Venturing back and forth from fear-of-not-knowing land and it has not been fun. But Isabella keeps progressing dispite my fear, and that helps bring me back to sanity. Especially this week's new milestone...SHE IS JUMPING!!! Which honestly has been something that I thought that she might never do. Ever. I even told Nik just last month that I have finally accepted the fact that she might never jump because I realized that who cares, jumping won't make her any better or worse at being the sweetest person this world will ever meet. So imagine my shock when I picked her up from school last wednesday and she got all excited to see me and started jumping up and down (not very elegantly but actually getting her stubby little feet a centimeter off the ground none the less.) I actually started tearing up and clapping and jumping up and down with her. Her summer teachers must have thought I was crazy but I don't think they knew that this has been on her physical therapy goal list for over a year and a half now. And she is so proud of herself that she takes to jumping all day long now. While watching tv she jumps. While playing with her doll house she takes a minute to start jumping. While waiting for me to strap Noah in his carseat before I put her into hers she practices. It might be one of my favorite things in the world to watch because it takes her 2 or three attempts before she gets one solid off the ground jump in there, but she ALWAYS keeps trying until she gets a good one in. And then she claps for herself and beams wildly and does it again. Ohhhh the joy of success. <br /><br />I think she knows how far she has come because lately she has been much less hesitant to try new things... things that would cause her to kick and scream in fear before are now obsacles for her to overcome. And I think she enjoys having pride in what she is doing because she will do something new that I can tell she isn't enjoying just so she can smile at me proudly when she is done. And sometimes she doesn't even try to do it again, just knowing that she CAN do it when she wants to is enough for her. And her pride in herself and my pride for her go toe-to-toe at the finish line of the milestone race. And I don't even care who crosses first because the best part is sharing in these experiences with her.<br /><br />I don't even need to remind myself lately that overall I wouldn't change a thing about her or our lives since she has been born. Isabella's journey has taken me to a whole new level of strength that I never even dreamed I could posess. And traveling on this journey with her has led me to so many new friendships that I couldn't imagine living without now... this new support system that I have gained has been there rooting us on when we feel like we are flailing helplessly and cheering for us when we cross that milestone finish line with pride. I have gained a feeling of being connected to people in a way I have never felt before all because we share the experience of raising a child who has changed our entire view on life and what it really means to be happy. So to all of my new but lifelong friends: you are my backbone holding me up and making me stand tall when I feel like crumbling, and you make this life of ours more meaningful. Excuse the sap, but I really appreciate you all. Part of the best part of parenting for me has been having others share my joy in watching my children grow and because of you I get to have this AND partake in enjoying watching YOUR children grow. A total win-win deal for me :)<br /><br />I've tried to take some pictures of her jumping, but I've yet to catch the perfect mid-air shot, so I'll attach the best that I have so far. I can't wait to see what accomplishment she will jump to next :)<br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-AqucpB9KzJzhuvINaQmXZhxrq50jEnWAHcYkCL1D06idCkwNOoSIyxmR2GhbBFTUivcWRVWbp4C4YhPcHwZuc-lDD9MdOMzLDhLC3a5Q34aKuQqlcjkLRQeRxqPCwd-CDrrNDAx-ARQ/s1600/056.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-AqucpB9KzJzhuvINaQmXZhxrq50jEnWAHcYkCL1D06idCkwNOoSIyxmR2GhbBFTUivcWRVWbp4C4YhPcHwZuc-lDD9MdOMzLDhLC3a5Q34aKuQqlcjkLRQeRxqPCwd-CDrrNDAx-ARQ/s400/056.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5495682525424123218" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2HkuW0vT4HK25bixAOToMg2EeOfYLYiWpdZjewLHPTOXRVW1oYqPIRekaDJ_Dip4IuUMlRmpiRPlO7LBQe5locVWInZlkoenE4taS-a6_vqK-90rBQzMBDhyz2fKbuQWxYe2hibd_pTU/s1600/054.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2HkuW0vT4HK25bixAOToMg2EeOfYLYiWpdZjewLHPTOXRVW1oYqPIRekaDJ_Dip4IuUMlRmpiRPlO7LBQe5locVWInZlkoenE4taS-a6_vqK-90rBQzMBDhyz2fKbuQWxYe2hibd_pTU/s400/054.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5495682512022080770" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNbzLGFUhEiWN2z9eHmOKoBWTtDID3i-SO6FzCYNZdKaO6L8KXWUuTvnzBhyBfV6q7cqZshT1b9CLh2VOUunYoCCC1n5eaS6vSTo3UGcWRE9uA5R7o_E6JbyZYVtcXsdU_5MxOTUf-Sos/s1600/053.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNbzLGFUhEiWN2z9eHmOKoBWTtDID3i-SO6FzCYNZdKaO6L8KXWUuTvnzBhyBfV6q7cqZshT1b9CLh2VOUunYoCCC1n5eaS6vSTo3UGcWRE9uA5R7o_E6JbyZYVtcXsdU_5MxOTUf-Sos/s400/053.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5495682503761521010" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIWG5Yiv-i7eXHfcoWzB5Bx224-wpniY8jDuJqAJWUwauDgEtm0If6MXIquPD-gqmrJ9XnQ3Q3Co-CW0u6BdHsUcpe7f8fvDl-Aqs51VB_FirOmF1f3EV3yDGYAP1oAUM1AsohRBLZ-kE/s1600/050.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIWG5Yiv-i7eXHfcoWzB5Bx224-wpniY8jDuJqAJWUwauDgEtm0If6MXIquPD-gqmrJ9XnQ3Q3Co-CW0u6BdHsUcpe7f8fvDl-Aqs51VB_FirOmF1f3EV3yDGYAP1oAUM1AsohRBLZ-kE/s400/050.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5495682495842659106" /></a><br /><br />I'll try to post again sometime this week with more pictures and updates of what we've been up to lately...I need to get myself back on track with Blogger, I forgot how theraputic it is!Mikaelahttp://www.blogger.com/profile/04299699527313278772noreply@blogger.com4tag:blogger.com,1999:blog-6664505081414281499.post-29362838271561821022010-06-18T14:17:00.000-04:002010-06-18T14:41:35.181-04:00"quite the good talker!"okay so call me an overacheiver, but i have 3 kids under 4 all asleep at the same time. that N.E.V.E.R H.A.P.P.E.N.S.....and while there is SO much to get done (take the baby tub out of the sink, wipe the soaking wet counters and floors, clean up lunch...and breakfast...dishes, put laundry away, rinse out josephine's dirty onsie...) i am too afraid to wake one or all of them up so the quietest thing i can think of doing is adding a new blog post...<br /><br />so yesterday nik took noah to his parents to pick up our rotatiller and i had a rare hour with just isabella. we needed a few basics so we headed over to dollar general (have i mentioned the love i have for that place?) we were meandering our way around the store, taking our time to point at everything we saw and talk about what we needed and wanted to buy when an employee came up to talk to isabella. the lady told her how beautiful her hair was (bells just says "yeah" now when someone says that...she's so used to it. that is just about the only time i have to remind her to say thank you!) the lady gave her a few more compliments and asked her a few questions before she continued to stock the shelf. as we walked away isabella says to me "who's dat mama? nice lady?" and i said "yeah she was a nice lady wasn't she? she works here" "say della (bella) nice hair huh mama?" "yes bell, she said you had nice hair." "she nice geel (girl) mama." typical bells. if someone thinks she's pretty and compliments her she is thier new best friend.<br /><br />the best part of this story isn't even that cute little exchange between bella and i. we walked down the next aisle and as i'm searching the shelf for red raspberry jam i hear the employee in the next aisle over say to another employee "did you see that pretty little girl in here? the one with the long curly hair?" to which the other employee said "yeah she's a cutie". so then the first lady says "she is isn't she? and quite the good talker! she was talking a mile a minute and had so much to say!"<br /><br />i almost started crying. QUITE THE GOOD TALKER!!! i remember at one point thinking she had apraxia and reading up on it and realizing that some kids NEVER talk. and i was convinced that she would be one of them. and here she is a year later. quite the good talker. and she is. but to hear someone else say it (and they didn't even KNOW i was listening) makes it so real as to how far she has come. it still totally shocks me when someone who doesn't really know her can understand what she says. i still think that we are the only ones who can understand her, and i always start to translate for people, but now they are starting to cut me off and tell ME what she said. and i let them, because is there anything better than realizing that one of your wishes has come true?<br /><br />it is times like this that i don't mind updating her baby book. because even if she didn't meet that milestone on time, guess what? she's quite the good talker now.Mikaelahttp://www.blogger.com/profile/04299699527313278772noreply@blogger.com2tag:blogger.com,1999:blog-6664505081414281499.post-50124064716066695462010-06-16T11:11:00.000-04:002010-06-16T12:34:24.807-04:00Busy busy busySeems like there is so much to write about and so little time to do it! The kids are keeping me super busy lately, wanting to play and eat and play and eat pretty much nonstop. Works out well, cuz those are two of my favorite things to do as well! And on top of two of my own keeping me busy, we recently started watching a 5 month old angel baby named Josephine:<br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLey5HGuFJB9_meS8YV38MVsHE7dO0lYWdeNTvbyWDzp7epL4qrl_Jf6A-mDD7AyQai8aJbFxgel919p6Nb7kpKFSFe7oWjvnpIPsc9IlBZibE7SRWi7EyzWTEtJDN2gxDVk2a80rfwY4/s1600/Josephine+1.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLey5HGuFJB9_meS8YV38MVsHE7dO0lYWdeNTvbyWDzp7epL4qrl_Jf6A-mDD7AyQai8aJbFxgel919p6Nb7kpKFSFe7oWjvnpIPsc9IlBZibE7SRWi7EyzWTEtJDN2gxDVk2a80rfwY4/s400/Josephine+1.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5483394568644421938" /></a><br /><br />Isabella loves her like crazy. I love how she says "baby josaseeen is heah!!" when she gets dropped off in the morning. And when I picked Bella up from her summer program at school yesterday instead of saying "my mommy's here!!" (as she usually does) she yelled "my baby's here!!" because I had Josephine in the stroller with me. Noah on the the other hand isn't as sure about her...he's curious, but not yet gentle...so I have been busy just trying to keep him at a safe distance. <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLA5KWyrKOEhTDBUwPhPoDLZ1PO4cghtAI8lCHvptZxFOea3RxlU_Q8DMNdKynXf9xJpHFZEW7Hd6qvutSA65q0WDAOaOyifVZn0Lu3ueOLG5B6G3uHgnYtuD1Vw3yOj24cDynnrIH-vQ/s1600/Josephine+2.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLA5KWyrKOEhTDBUwPhPoDLZ1PO4cghtAI8lCHvptZxFOea3RxlU_Q8DMNdKynXf9xJpHFZEW7Hd6qvutSA65q0WDAOaOyifVZn0Lu3ueOLG5B6G3uHgnYtuD1Vw3yOj24cDynnrIH-vQ/s400/Josephine+2.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5483394576666533458" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiN8I5GagQtVgvRxK_zA65CgPeKups4MTlFhTBs8A989O6qlNYM6rE71nwmnFOxgMjG-5XKvNAtTQio7-mn_OwpTHUBI2_0-xkUhAKx7CvEhbQ5fUNORqG47UZCKZsJVJZ1sNnEiIgZuds/s1600/Josephine+3.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiN8I5GagQtVgvRxK_zA65CgPeKups4MTlFhTBs8A989O6qlNYM6rE71nwmnFOxgMjG-5XKvNAtTQio7-mn_OwpTHUBI2_0-xkUhAKx7CvEhbQ5fUNORqG47UZCKZsJVJZ1sNnEiIgZuds/s400/Josephine+3.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5483394586065422946" /></a><br />We've also been busy with our usual activities of playing on the deck with friends and family. Serena comes about once a week (I think you are overdue this week for your visit tho sista!) and last week Jen and the kids came to splash in the pool. Hands down, my favorite activity right now is drinking virgin margaritas on the back porch with friends while our little monkeys play. <br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5U2HElN8XUx8dSOSl0oWqmh3a_OtxJiH2c7eJZpTbZwgAsPRYSORRi2MloAoSl2o3yTUxhaQx_JAkoH3a_aMMrQAUpP2bHA3htALh_CyTlU7fx3Im_BSkknnlUGMKELjJ0hyphenhypheneianKTBE/s1600/014.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5U2HElN8XUx8dSOSl0oWqmh3a_OtxJiH2c7eJZpTbZwgAsPRYSORRi2MloAoSl2o3yTUxhaQx_JAkoH3a_aMMrQAUpP2bHA3htALh_CyTlU7fx3Im_BSkknnlUGMKELjJ0hyphenhypheneianKTBE/s400/014.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5483395697770409618" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJ6tNl00I1-8wSsj0B7zSenxta9r_POdhx5xivz16cZOC-UJWc6d72CrkJPeMlRDrw7xfAcRzpG91iHDEPy6PKWbeCvLvmcRwor0h22AAn4a4q-eTWHHz3kY5nqC4p9_Pxc8VQJCwNQ70/s1600/012.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJ6tNl00I1-8wSsj0B7zSenxta9r_POdhx5xivz16cZOC-UJWc6d72CrkJPeMlRDrw7xfAcRzpG91iHDEPy6PKWbeCvLvmcRwor0h22AAn4a4q-eTWHHz3kY5nqC4p9_Pxc8VQJCwNQ70/s400/012.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5483395692936336802" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhQ0Lzfi_-FC4jo_z3ZN3B8wobtX3fUSYNBUCepLMjiNT1zDWvLQa3gh7fS4LxRVUTPcSLO4e7PymzYZ1kNZCMznFdePIIlQm4h34qzQFb-YxD4Knhh3kgj-au1s-uYjiXpdKJGXkWjZM/s1600/001.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhQ0Lzfi_-FC4jo_z3ZN3B8wobtX3fUSYNBUCepLMjiNT1zDWvLQa3gh7fS4LxRVUTPcSLO4e7PymzYZ1kNZCMznFdePIIlQm4h34qzQFb-YxD4Knhh3kgj-au1s-uYjiXpdKJGXkWjZM/s400/001.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5483398678684168738" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3cRu0-MgtJiwXxAR-ozGtS6XNB3RsWjKcgkl4A9eXP11AQUBxqSsjbPHaP6QBS_bLtjRLgCtx5F5wcKoicS3HqihyphenhyphenE4AFutNPE77yy-BWojfsZMcBddM1ST0n6ZAbYQKy9bTGOQ7Op-Y/s1600/002.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3cRu0-MgtJiwXxAR-ozGtS6XNB3RsWjKcgkl4A9eXP11AQUBxqSsjbPHaP6QBS_bLtjRLgCtx5F5wcKoicS3HqihyphenhyphenE4AFutNPE77yy-BWojfsZMcBddM1ST0n6ZAbYQKy9bTGOQ7Op-Y/s400/002.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5483398668266686082" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSbqvbStdtjwdS-kECDVdKVoAadvIKplonLEZAs8NiZpTkqWkBgwLuK9XzFq3v26Y2NqZUX3QDpWsC5ir9xHVkyBywqAcWc-OCe9MC3W5WXoAg0Pm-_QJyt1o7O0Sl2pD_gzJY4ugk92s/s1600/003.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSbqvbStdtjwdS-kECDVdKVoAadvIKplonLEZAs8NiZpTkqWkBgwLuK9XzFq3v26Y2NqZUX3QDpWsC5ir9xHVkyBywqAcWc-OCe9MC3W5WXoAg0Pm-_QJyt1o7O0Sl2pD_gzJY4ugk92s/s400/003.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5483398659983402706" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6G23RQMm5c506mfJaBz5n7sLEyzAkA1MQGJHna0RWwVEcCzSg2Vb7zbIW_j9-_BiAP9px2seHwo8MI4KrFdEapSL2A8bp7dR_2M5PhnigWfq6qffTU6txJ55Mt_U8E7wYDUe8Ic6qj30/s1600/004.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6G23RQMm5c506mfJaBz5n7sLEyzAkA1MQGJHna0RWwVEcCzSg2Vb7zbIW_j9-_BiAP9px2seHwo8MI4KrFdEapSL2A8bp7dR_2M5PhnigWfq6qffTU6txJ55Mt_U8E7wYDUe8Ic6qj30/s400/004.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5483398654637541122" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5onbSODm_89yjsioS8z7GBoxqbTAXxlNfLKCDR4tlg8ZMSxlXJB8sUSra8JsegIxvjmTJBn3WJ1UylfVqqXj33O_0ny5w7OsLhqgTSeh0jXml4ONXr9HcIA3ClwA8BieKpHDgHRJkzu4/s1600/005.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5onbSODm_89yjsioS8z7GBoxqbTAXxlNfLKCDR4tlg8ZMSxlXJB8sUSra8JsegIxvjmTJBn3WJ1UylfVqqXj33O_0ny5w7OsLhqgTSeh0jXml4ONXr9HcIA3ClwA8BieKpHDgHRJkzu4/s400/005.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5483398647198181426" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLlo0MVT26VcuXSB_3ckGwF4yd1tCruw_dpNo3NAstXof6GSMo8wcIVtff8iurCySoYeMtbglRhK3-8c4HOVgf29w71noMHIrETUZwpEFrQofToz91xnTPzTzHwS0ajd2paW0-2Ylfngg/s1600/006.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLlo0MVT26VcuXSB_3ckGwF4yd1tCruw_dpNo3NAstXof6GSMo8wcIVtff8iurCySoYeMtbglRhK3-8c4HOVgf29w71noMHIrETUZwpEFrQofToz91xnTPzTzHwS0ajd2paW0-2Ylfngg/s400/006.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5483398127058835618" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvCVj7TRJjhPT0THYWvgxM-qL01rlHwdMSnTwDCC9u0RHMq7Nd4aXHPt1XnbanzQuEouDc5CAUQfffEjth9N5yRtiCYyUInoX5q9G7Y91-ACwMjeduXOaGm8yg3eKxt9CfEaG41HYwQDI/s1600/007.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvCVj7TRJjhPT0THYWvgxM-qL01rlHwdMSnTwDCC9u0RHMq7Nd4aXHPt1XnbanzQuEouDc5CAUQfffEjth9N5yRtiCYyUInoX5q9G7Y91-ACwMjeduXOaGm8yg3eKxt9CfEaG41HYwQDI/s400/007.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5483398122365542674" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDG1fvem9eYUCcfkY2h1w0s4R5gNCldQ8vwgfRhCRwZoQA4gTt97SOF-EmubJaCPXf5ugSfp24zEjj34TtFhd0Lhy4QB3cFciTt206UQgkA688M9kz-LOTa-1AfL8IxdRKF8QFZEJFmWQ/s1600/008.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDG1fvem9eYUCcfkY2h1w0s4R5gNCldQ8vwgfRhCRwZoQA4gTt97SOF-EmubJaCPXf5ugSfp24zEjj34TtFhd0Lhy4QB3cFciTt206UQgkA688M9kz-LOTa-1AfL8IxdRKF8QFZEJFmWQ/s400/008.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5483398115613333170" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiV35mxtN_RNzHoygY5APP54OBZv8IqCUtaJ-MYGXRYkD6n-whr7IjO8c_Q_Mf5EIAk0Zkh3QvhXCaCRQfaLqgFlxTgllBCjENj3zDbammEKS1Zp7cvfzkXuu3866JKZd2f433TgEpk-rY/s1600/009.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiV35mxtN_RNzHoygY5APP54OBZv8IqCUtaJ-MYGXRYkD6n-whr7IjO8c_Q_Mf5EIAk0Zkh3QvhXCaCRQfaLqgFlxTgllBCjENj3zDbammEKS1Zp7cvfzkXuu3866JKZd2f433TgEpk-rY/s400/009.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5483398107572696562" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9XVUUEHxFMHl0u-5AxuegQpFf6ovsn2mlW76PA5cz2Lha3_eRBwq9Ou_eEUoFgOKwObx6gLQ24oBs_dLNxjyfA8E9Ot5q5DMLm2KvHiwDyqzamcmNkBDkgnXSrAr0XFNBWhNIX9OrSIA/s1600/010.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9XVUUEHxFMHl0u-5AxuegQpFf6ovsn2mlW76PA5cz2Lha3_eRBwq9Ou_eEUoFgOKwObx6gLQ24oBs_dLNxjyfA8E9Ot5q5DMLm2KvHiwDyqzamcmNkBDkgnXSrAr0XFNBWhNIX9OrSIA/s400/010.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5483398102132628850" /></a><br /><br />We had a FABULOUS time on our family get-away to amish country this weekend. We literally could have just stayed in the hotel room for 5 days straight and our kids would have kept themselves entertained. Noah was his usual self running into walls and smacking his head on tables every few minutes, but aside from the few tears shed because of this, he was so happy. Especially when he discovered the tissue dispenser in the bathroom!<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5bSYHYlut3lVqyhrbG4otkr0dl2noZk917qk0pR8iJGD9I1BOB1Ak5msXcimwBNzFaP-OWFR1yGVazhi1iL_YIYz3KrNCxJhk_zRUVvzasW1oXixJHZ5HLL4OrVupWr7PvUevrVjcp9s/s1600/027.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5bSYHYlut3lVqyhrbG4otkr0dl2noZk917qk0pR8iJGD9I1BOB1Ak5msXcimwBNzFaP-OWFR1yGVazhi1iL_YIYz3KrNCxJhk_zRUVvzasW1oXixJHZ5HLL4OrVupWr7PvUevrVjcp9s/s400/027.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5483396230039344690" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQr-lGMCoOjNG0DZuCkOMIIfXjy_e6YjRMwg3CTYyA8EHMqMnYjCs6zJsvQlhj7oYO8pp_1pqhL1a9fqBNGTOMwMXX3dI1jfyenN1yYgLpq65Fvy2UR7D1DKBRei8jGLH-QK1HTvcV8cU/s1600/028.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQr-lGMCoOjNG0DZuCkOMIIfXjy_e6YjRMwg3CTYyA8EHMqMnYjCs6zJsvQlhj7oYO8pp_1pqhL1a9fqBNGTOMwMXX3dI1jfyenN1yYgLpq65Fvy2UR7D1DKBRei8jGLH-QK1HTvcV8cU/s400/028.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5483397014096784434" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgeQ6OJQ1_RUR8b9E8wmDKmEWniUOZbYj8AeKHJAE-nc22mPEf8jAtTOhuHYlMNWDzEgia-Ys-trU9XM_FY0RRpLc8mm7tpmw_O6k9YBcubj6yGCp2-wn_nLx-RnQVMoFRq0g3lZCK8rz0/s1600/026.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgeQ6OJQ1_RUR8b9E8wmDKmEWniUOZbYj8AeKHJAE-nc22mPEf8jAtTOhuHYlMNWDzEgia-Ys-trU9XM_FY0RRpLc8mm7tpmw_O6k9YBcubj6yGCp2-wn_nLx-RnQVMoFRq0g3lZCK8rz0/s400/026.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5483397012214839218" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjPUv-He1qJGU2VZoTicXxZZEDd3nDWTM-Tzaa-nhK5jt82dPrsDH13NhlDRd4jWbFORErBHj3PYVCQMyKT0gaP3dHEYQtJ_nrFbd5pqatLM48Ihhvl1xH5P0kR4k1yUVImfKEvzcAmC_I/s1600/025.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjPUv-He1qJGU2VZoTicXxZZEDd3nDWTM-Tzaa-nhK5jt82dPrsDH13NhlDRd4jWbFORErBHj3PYVCQMyKT0gaP3dHEYQtJ_nrFbd5pqatLM48Ihhvl1xH5P0kR4k1yUVImfKEvzcAmC_I/s400/025.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5483397003203099426" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXHHkfmroMQN_46S02qBHOJt3HuDM8v7d2LhAZt1uCHkas4OEAYHGDdgwYoxPyJbTlmViapPPdOkG3kC2cO0WrmnMjhP6byT7tNlQISCHm7MaUHYz9bnrg7oMdW1_GF_-lVGljxeeD8FA/s1600/024.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXHHkfmroMQN_46S02qBHOJt3HuDM8v7d2LhAZt1uCHkas4OEAYHGDdgwYoxPyJbTlmViapPPdOkG3kC2cO0WrmnMjhP6byT7tNlQISCHm7MaUHYz9bnrg7oMdW1_GF_-lVGljxeeD8FA/s400/024.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5483396993269891826" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6PKdGsY27R6mAjk6bi7Vk-apzE61tVQI9d_mNUbz1TCsl872jzCJn5BOONy2wjlXZcZAqzuecU4cK9xmbPjDJHlTUTR6IETnFIXezUvKERqz34FVglr2jYOFO6Z-ikorhfClJ9iAf6cQ/s1600/020.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6PKdGsY27R6mAjk6bi7Vk-apzE61tVQI9d_mNUbz1TCsl872jzCJn5BOONy2wjlXZcZAqzuecU4cK9xmbPjDJHlTUTR6IETnFIXezUvKERqz34FVglr2jYOFO6Z-ikorhfClJ9iAf6cQ/s400/020.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5483396983416069442" /></a><br />My favorite part of the weekend, tho, was getting to sleep all night with Isabella. Until Noah was born, Bells and I slept (literally) intertwined every night, and although I got next to NO sleep for those two years, I have really really missed having her next to me. So Nik got Noah to sleep and I fell asleep with Bells while watching Toy Story 2, and it was heaven on earth feeling her warm breath on my back all night. And everytime she would roll over and briefly wake up, she would reach for me (just as she did every night for those first two years) and she would wrap an arm around my neck or tuck her legs between my knees and quickly fall back to dreamland. I loved it. So much that on Sunday night when I climbed into bed at home, I actually got back up, scooped my little love from her bed and plopped her in bed with me. <br /><br />And then on monday we had a family night at Bella's school with activities and crafts and an ice cream social! Doesn't get much more fun than that!<br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBEwdSPz8v6gAVsVFUiXKWxuQOiUZnnvMzzdLjWrEj22rcr8M-1TOKqe6z6qnGeXJFbwk0KvZYXB-uOkCQLbBJPkl-QXQzSji7r0Zxeo_AcD0y5DR0vIieCFcAJrGrvQaO9eKMnq7-pKw/s1600/034.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBEwdSPz8v6gAVsVFUiXKWxuQOiUZnnvMzzdLjWrEj22rcr8M-1TOKqe6z6qnGeXJFbwk0KvZYXB-uOkCQLbBJPkl-QXQzSji7r0Zxeo_AcD0y5DR0vIieCFcAJrGrvQaO9eKMnq7-pKw/s400/034.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5483393126754253250" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjedcPvY4L-FsR0dEAvO0crS0DL0ZT8VAtsTdH6nkbSJZeeL5Cua5Z8pJKoNFdnLZ8B-6JenMKAJ74I-ln_NurFGFzTRSPegrj5cliImExhyWHFDPsj59d2ARzrMWhAp-1sa2kdo85wUvw/s1600/033.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjedcPvY4L-FsR0dEAvO0crS0DL0ZT8VAtsTdH6nkbSJZeeL5Cua5Z8pJKoNFdnLZ8B-6JenMKAJ74I-ln_NurFGFzTRSPegrj5cliImExhyWHFDPsj59d2ARzrMWhAp-1sa2kdo85wUvw/s400/033.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5483393124675049698" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjK43AalM01c031twPgTTAWMHWnzRPjjQB7_rpvZC45PVFOc9Gpj204M7euZtiWY40ChM9zjPsAJsSSWtlfW4E6XjYIE1dx2_67gLodoUk2ZozHVxRR1t6sRuCStGbQq7Sdj9-aCUjM5oY/s1600/032.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjK43AalM01c031twPgTTAWMHWnzRPjjQB7_rpvZC45PVFOc9Gpj204M7euZtiWY40ChM9zjPsAJsSSWtlfW4E6XjYIE1dx2_67gLodoUk2ZozHVxRR1t6sRuCStGbQq7Sdj9-aCUjM5oY/s400/032.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5483393102754525778" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNxb6T3piKQGbC-FITFfhpnrMpNAWqWvz7x7pAcXWQvSoXLmuoEysPhnlLAFIYcC4orDR72nJTYD7uPMtPfP88BC1dWHk4k75uTcCOmVNyelVI1kSKY1FMAW0AjAay1byWatmZoFfS7U4/s1600/031.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNxb6T3piKQGbC-FITFfhpnrMpNAWqWvz7x7pAcXWQvSoXLmuoEysPhnlLAFIYcC4orDR72nJTYD7uPMtPfP88BC1dWHk4k75uTcCOmVNyelVI1kSKY1FMAW0AjAay1byWatmZoFfS7U4/s400/031.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5483393097893353682" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiu_UykdUmAPknrcgcQL9QW7wkMN0ireLHMkikqoE7r1HklgGWKNrlG-2Mywyux5BJeptFksNSM20qV_fJOU1rnDLQV7yFNpIM9uuei16-qKRlisxse2VrTs6j26FSJnxQRpTL8Qmu0oCE/s1600/030.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiu_UykdUmAPknrcgcQL9QW7wkMN0ireLHMkikqoE7r1HklgGWKNrlG-2Mywyux5BJeptFksNSM20qV_fJOU1rnDLQV7yFNpIM9uuei16-qKRlisxse2VrTs6j26FSJnxQRpTL8Qmu0oCE/s400/030.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5483393088411305538" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEibKFC1tcIMHoJCQqz3QUu1IjrGGATgOfX7yWvbKntJXduEMJuuWYyRgbfSayhsoPB9agqKXafESthqYH4H2SkF9sPj0L8E4CDiABEqKR_ssLQ7LAU7nLKOQwCMMUr14xk-m7dmie0wL8Q/s1600/036.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEibKFC1tcIMHoJCQqz3QUu1IjrGGATgOfX7yWvbKntJXduEMJuuWYyRgbfSayhsoPB9agqKXafESthqYH4H2SkF9sPj0L8E4CDiABEqKR_ssLQ7LAU7nLKOQwCMMUr14xk-m7dmie0wL8Q/s400/036.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5483393782156293618" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEibmnK9XeXZ4wIxMG0Cw1nLSXtdelnqrizAxqGLAMhmLuOQY7FDWKXPxCGrhxMfTPX4dT7uN-B709TAmETxvzpT0HP0bAG7rBfmrLCNIKedMKstmKnpYE2tEwYh13DOqQCnJtfTvUBHEEA/s1600/035.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEibmnK9XeXZ4wIxMG0Cw1nLSXtdelnqrizAxqGLAMhmLuOQY7FDWKXPxCGrhxMfTPX4dT7uN-B709TAmETxvzpT0HP0bAG7rBfmrLCNIKedMKstmKnpYE2tEwYh13DOqQCnJtfTvUBHEEA/s400/035.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5483393773318829186" /></a><br />As for other noteworthy updates, I had a rare opportunity to go to Cleveland to see my dad with both my brother AND my sister at the same time. It was the first time we were all together there in almost two years. It was a nice time, but also very sad as we were really there to visit my uncle Bob who is battling stage 4 cancer. <br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXZsA1wb7julm6Yqr4P6v95E6K5_0bLQ06VHo3iNzJ2PgoXD176IsdF8CP38K0fsVeqyb1X5XSmUUozkYaj3lmpu16d5PZezE7a26c0DOIU_y9MGNuhfnShCt3S6Mj-vUQRPYEYqjuEfQ/s1600/026.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXZsA1wb7julm6Yqr4P6v95E6K5_0bLQ06VHo3iNzJ2PgoXD176IsdF8CP38K0fsVeqyb1X5XSmUUozkYaj3lmpu16d5PZezE7a26c0DOIU_y9MGNuhfnShCt3S6Mj-vUQRPYEYqjuEfQ/s400/026.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5483399969110061602" /></a><br />So we are busy! And getting busier by the day! Tomorrow we get to watch Madalyn and Kaitlin (our "girls" as Isabella calls them) and we always look forward to having them. Hard to believe that when I started watching them Kaitlin was just a little older than Isabella is now. Now she is going into first grade! Last week when they were over they were so excited to meet the new kittens that our neighbors next door just got... one of which almost went home with Jen later that week when she was leaving our playdate! (literally almost went home... she didn't realize it was in her van until she was a block away!)<br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDvprMGk1jQbuhA9Tpvb0qeR_rlDqWWLip2cKT9_6ZpFg6pqfzBqwO2PWz5ThntVikOi0iynV9oE2ZG-7OoEwEqxa0hyphenhyphenmxk6lpXQd9hUrFvyaov-os-XIcGoc0TJ_wKjNHtjMRaR9Ukk0/s1600/Maddy+and+kitty.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDvprMGk1jQbuhA9Tpvb0qeR_rlDqWWLip2cKT9_6ZpFg6pqfzBqwO2PWz5ThntVikOi0iynV9oE2ZG-7OoEwEqxa0hyphenhyphenmxk6lpXQd9hUrFvyaov-os-XIcGoc0TJ_wKjNHtjMRaR9Ukk0/s400/Maddy+and+kitty.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5483407603589884066" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizBnwsz83oXGsfX08OoQ3BhD1Jg-WOSfiEGKYt7vLZPe2BYWJn_2SfwtxUwUjmbGFxmxrPLn-4MG3YLH3VCnFDRBXvEYlP5AGfG1gH5FiW99T9WDL0hJaGo3U647uSs8D5i8LApT0BTu0/s1600/madkatebellandkitty.jpg"><img style="display:block; 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margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjsEJJJuMJNVuC8mQXpCF0tLzQSL5ET6FsVfMQELoxI7LUTmBvTJnYebAU24YyvRBcfO8bqRWWas0fK45ZjWDLD0mLj5r0vMfgrQELmlTAk7eihKHBTwG7KgY4UvnlOEhGYuRJAVzWpJU/s400/043.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5483401986006893058" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUcot6qGUuCbsrY5YyigHvjoL8UcCvzdSsbL5qDg_c_5SkoNotT8gb-H25DyXezHS-zqrWFgiiW8pozg8ojHqo2Waw_e4bB3ASM_khEAhVDE0ewW_aNGoTvyPG_UT3QKkFo9ygZ_nmNRA/s1600/044.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUcot6qGUuCbsrY5YyigHvjoL8UcCvzdSsbL5qDg_c_5SkoNotT8gb-H25DyXezHS-zqrWFgiiW8pozg8ojHqo2Waw_e4bB3ASM_khEAhVDE0ewW_aNGoTvyPG_UT3QKkFo9ygZ_nmNRA/s400/044.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5483401976697322882" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhOeJZnYKro5pKSOhNaFgGws98ehj4Nt9kEffsjrS6lZHA18Kb6cKdjmHfNjfW6fMVEfdSSFiUvg4Ec8qYGN6tiNdLtMyHtTULz-jNNCPjetG3PCS9hYbFJfKiUDLrzZsURGeFXv2Edio4/s1600/045.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhOeJZnYKro5pKSOhNaFgGws98ehj4Nt9kEffsjrS6lZHA18Kb6cKdjmHfNjfW6fMVEfdSSFiUvg4Ec8qYGN6tiNdLtMyHtTULz-jNNCPjetG3PCS9hYbFJfKiUDLrzZsURGeFXv2Edio4/s400/045.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5483401971707010274" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFkpPOvOdoavxHvIIHS6fbTvR6bbeRbDf3mIXhUftnvt3wKWE5h2FLKoxXdIKTyTsaxKqqG90_ImQrlnJCgmZbEn9Nw020tWOQM9Jh-VaSlsFk3kC6C88oPmy3PrSRNBkp02k8yZmapyM/s1600/046.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFkpPOvOdoavxHvIIHS6fbTvR6bbeRbDf3mIXhUftnvt3wKWE5h2FLKoxXdIKTyTsaxKqqG90_ImQrlnJCgmZbEn9Nw020tWOQM9Jh-VaSlsFk3kC6C88oPmy3PrSRNBkp02k8yZmapyM/s400/046.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5483401962220956594" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhOo4AoKjvDihskJw6NvJ03Uru3kRK0q2le1A-QBrwioDBdHhEjuJrB64XFM61dqG0umRUQqgJzrUts1rGFzX9-uqle8lo9RU7RTJOw62BZTHAFGJ0wdKkQ9KXU744ds0jCfIT8Ypkae-s/s1600/047.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhOo4AoKjvDihskJw6NvJ03Uru3kRK0q2le1A-QBrwioDBdHhEjuJrB64XFM61dqG0umRUQqgJzrUts1rGFzX9-uqle8lo9RU7RTJOw62BZTHAFGJ0wdKkQ9KXU744ds0jCfIT8Ypkae-s/s400/047.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5483401959863544290" /></a><br /><br />In between all the playing and socializing, Bella still has school, which is now 3 days a week instead of 2. Sooo, needless to say, all of this activity is totally exhausting, and by the end of the day the kids are totally zonked. Which is just fine with me. =)<br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlYLOoSQFkGFjGU5a4Sv3OAp_F067qA5JZZhEdYHObNiyrKlgRBZOuFVKFtP6aRDkYgzisniUKe6Zp2BI55N7VmMVEPbCNzm_AfdFYOqndvdslW7-hiDy7lV231Q0Ke9MHkJj63oerFHQ/s1600/sleepy.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlYLOoSQFkGFjGU5a4Sv3OAp_F067qA5JZZhEdYHObNiyrKlgRBZOuFVKFtP6aRDkYgzisniUKe6Zp2BI55N7VmMVEPbCNzm_AfdFYOqndvdslW7-hiDy7lV231Q0Ke9MHkJj63oerFHQ/s400/sleepy.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5483407114732523506" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEib4PvWnbiOEB3aVs1Kk2sr3qpltO9wEUNUz3rsKSmbj2_dCMkN5bdIqxyKWXEP-2C5a3lr8U3Y3T5I8Kkq-jqwP6TwV2FmzDQB0zpAQS_5h_x02aWMpK_dQhQAJpdoM70pNk1R_un26CU/s1600/001.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEib4PvWnbiOEB3aVs1Kk2sr3qpltO9wEUNUz3rsKSmbj2_dCMkN5bdIqxyKWXEP-2C5a3lr8U3Y3T5I8Kkq-jqwP6TwV2FmzDQB0zpAQS_5h_x02aWMpK_dQhQAJpdoM70pNk1R_un26CU/s400/001.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5483407108925221330" /></a><br />So we rest until we wake up and the busy-ness starts all over again! So while we are busy busy busy, we are also happy, happy, happy!Mikaelahttp://www.blogger.com/profile/04299699527313278772noreply@blogger.com0tag:blogger.com,1999:blog-6664505081414281499.post-30254383241181261592010-06-09T10:21:00.000-04:002010-06-09T12:04:04.477-04:00Feeling BlueFeeling a little melancholy this week... It's just about that time again where I start becoming hyper aware of all of the things Bella <em>should</em> be doing at this age. And my awareness of it this time around has nothing to do with what Isabella is or isn't doing. It's what everyone else is...<br /><br />Got a card in the mail yesterday for my friend Sherry's daughter's 4th birthday party. Sherry and I met in kindergarten and have been lifelong friends since. How excited were we that we were pregnant with our first kids at the same time, and ended up both having girls?? We just assumed that they would grow up and be as good as friends as we are... Her daughter Kaitlyn was born 4 and 1/2 months before Isabella. And the two of them couldn't be more different. Where Bella is at least a year behind developmentally, Kaitlyn is at least 2 ahead. So to say the least, it has been pretty painful getting together with Sherry for play dates with Kaitlyn because she is one child that can make it painfully obvious at how late Isabella has been on reaching some of those damn milestones.<br /><br />So back to the birthday invitation. I felt like I was punched in the gut even before I opened it. Because written on the back in that typical and adorable childlike scrawl was my daughter's name "Bella" with hearts all around it. Should have been cute. Instead I wanted to cry. Because here is Kaitlyn, writing and drawing and SPELLING, and then there is Bella who struggles to hold the crayon and who has trouble getting her weak muscles to press down on the paper hard enough to make much of a mark. We are just working on getting her to get beyond scribbling to draw lines down and across (and hopefully some day CIRCLES!!) and BAM, here comes another child who has once again blown her out of the water on her drawing and writing abilities. <br /><br />And it wasn't just someone else's child this week who made me feel this way. It was one of my own. Noah has decided this week that it is time to start talking. In a major way. Last week he was saying "mama, dada,tantu (thank you) baba,cheese,all done, nite nite, and hi"...this week he has exploded and added "fan, shoe, nose, eyes, titer (sister), tuhta (tucker-our cat), kitty, byebye, more, tinty (stinky),no no no....." the list could go on and on. Because every time I say a word or make a sound, he imitates it. And what should be a proud mama moment where I call everyone I know and write it in his baby book is actually a <em>sad</em> mama moment where I mourn the fact that he is thisclose to by-passing what Isabella could say when she turned 3. <br /><br />And it isn't just his language that is catching up. His gross and fine motor abilities have actually passed her by already. He is jumping and actually getting his feet to leave the ground some of the time. He is walking on his tip-toes. He is balancing on bricks while walking. He is opening doors by turning the handle and turning the cap of diaper rash cream to get it off. He is putting pegs in holes that are barely visible and getting them in there every time. He is feeding himself completely, and actually gets mad when I try to help him. He is blowing out candles. He is walking across the couch without holding on to anything and doesn't stumble or lose his balance once. And again, this list could go on and on...<br /><br />This is all a double stab in the heart. Because I feel SO guilty that I can't have my fist reaction to seeing all of this be pride and happiness. I feel sad that Isabella is still not doing some of these things. How will this affect their relationship later on when Noah is more like the "big sibling" who has to help Isabella on the playground or at school? And here I was thinking Isabella was sooo close to catching up to where she "needs" to be when along comes a 17 month old who proves me totally wrong. I feel bad for Noah that we celebrate every TINY accomplishment that Isabella makes but act like Noah's development is just something to take for granted (just this week we were clapping and screaming excitedly when she took her own pull up off...but I actually said "nonono Noah" when he took his diaper off last month). It hurts to see how much Isabella has to work to accomplish something that comes so naturally to Noah that we don't even know when he actually started to do it. <br /><br />Paradoxically, I am so grateful to have a child like Noah to help Isabella. There are so many things that she wasn't even attempting to do until she saw Noah do them. Like opening the sliding back door. Or climbing on the cedar chests to reach the light switches. Or bending her knees to attempt to jump. And it has been this way since Noah came along. Just a month after he was born she was trying harder to talk so she could sing to him. And the first time she ever attempted to open the butt cream tube was when Noah was a newborn and she was helping me change his diaper(without success yet but she still she tries). <br /><br />I know I have so much to be thankful for. And as sad as it makes me some days, I am honestly actually thankful that Isabella is who she is because it really slows us all down and makes us appreciate the little but insanely beautiful things about life that would have normally passed us by unnoticed. To appreciate that learning how to run and speak and blow out a candle are all things that are amazing feats, not just something to check off in the baby book as "accomplished". I think I start to feel this way sometimes because even tho I <em>know</em> that Isabella has something different about her that makes her have to work harder at life, as the day to day routine comes and goes, I often find myself thinking that maybe she doesn't have anything wrong at all. Maybe one day we will look at her and say "wow, she is totally caught up! Maybe all her delays were just because she was so sick for the first two years of her life after all!" But then weeks like these come along and remind me of the truth. That Isabella has "special needs". <br /><br />It helps to know that those same "special needs" that weaken her muscles so that she still drools when she is tired, and that make her run so awkwardly that she looks like Kramer from Seinfeld when he enters the room, or that make her work extra hard to do all those things in therapy that she happily chugs away at every time are the same "special needs" that make her the "sweetest child" her preschool aid has ever met. They are the reason she sees something funny in everything we do. They are the reason she learned to sing before she could even utter a recognizable word. They are the reason she doesn't quit trying because she is embarrassed that she still can't do things. They are the reason she wakes up every morning and climbs into my bed and squeezes my neck and says "hi mommy!" And when I sigh that unbelievably happy and content sigh she responds with "ohh mommy. I love you too"...because she knows how I feel by just hearing me sigh. This child of mine doesn't just <em>need</em> in a special way. She <em>gives</em> in a special way too. <br /><br />So, while I'm feeling a little blue, I'm also feeling a little yellow and pink and purple (her favorite colors today, she says)...because today she said (without any prompting) "can you read me this book please, mommy?"....her first 8 word sentence that was spoken so clearly that ANYONE could have understood it. And it is moments like these that remind me that I'm the lucky one. I get her for my daughter, and all of those mommy's who have children that are "perfect" are missing out.Mikaelahttp://www.blogger.com/profile/04299699527313278772noreply@blogger.com1tag:blogger.com,1999:blog-6664505081414281499.post-33786066727007931892010-05-30T08:40:00.000-04:002010-05-30T09:25:55.183-04:00Weekend of GreatnessJust a quick note while the kids are still in bed (I can't believe it myself. I should be enjoying this and sleeping in myself, but it never works out that way, does it?)<br /><br />So far it's been a pretty fantastic weekend. And like my good old college days, my weekend started on Thursday this week for a Girl's Night Out. I have Jen to thank for inviting me, and Dollar General to thank for giving me the courage to go out with 10 or so other women whom I had never met and really really enjoy myself. Dollar General? Yes. My favorite store. I fould the CUTEST bracelet there just before going out for just 70 cents. <br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0qudTieXfsmxxVy1nPKidqNxeoh-Ci36sjvWJvOei2hBkK01wzlcEtVYVo2BN-NAOLiiQyKewNtbNUKCd2k-Hhzy_wF4zAh60FYSrKo-QE9Gjq7lHObpLLZ2KLUv7M2P4mq57tA_ybXY/s1600/013.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0qudTieXfsmxxVy1nPKidqNxeoh-Ci36sjvWJvOei2hBkK01wzlcEtVYVo2BN-NAOLiiQyKewNtbNUKCd2k-Hhzy_wF4zAh60FYSrKo-QE9Gjq7lHObpLLZ2KLUv7M2P4mq57tA_ybXY/s400/013.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5477051038046780850" /></a><br /><br />So the great weekend started at Wooster Inn and continued into friday where the kids and I did nothing more than play in the baby pool. All day. Which makes me doubly happy because not only are they popsicle filled happy and exhausted at the end of a day spent in the sun, but I get a killer tan to show for it. <br /><br />That, my friends, includes a tan line. Faint, I know, but I haven't had one of those in years. Since Bells has been around really. We are usually pretty climate controlled and enjoy the ac to the max, but Noah doesn't agree. So this summer we will be practically living outside, and I LOVE it. <br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiq-ltd2abCV_gd59HGnaNlQ439c6PGfscx-QfEg-sVCqQ_WxK-y-_3HWQ8sarrq04vQh015UYCgvhx5vQ9dZYg1pyJgwDeFgm4drq8zWH6rwQ6DPBMsAuQJxXDAB_uB9_Y3PmDQ64f92c/s1600/003.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 300px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiq-ltd2abCV_gd59HGnaNlQ439c6PGfscx-QfEg-sVCqQ_WxK-y-_3HWQ8sarrq04vQh015UYCgvhx5vQ9dZYg1pyJgwDeFgm4drq8zWH6rwQ6DPBMsAuQJxXDAB_uB9_Y3PmDQ64f92c/s400/003.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5477051670302439842" /></a><br /><br />And Saturday? Spectacular. Sun soaked and happy, I got to go shopping for new shorts while hubby played with the kids. And then I came home to have my mama over for dinner, which we ate picnic style on the front porch on the new rug she found at a garage sale for $5. We do love good deals!<br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhMeyfaEHHqUAZs-X53fySt1HWyK5t7Q0z_xITOVA8_Y7zC83WORT-_VXH23cpsHDCqdpyhFzaPEUwU-X0dwDVEtfrxNGrP4THmb7mUsZS0kbs-0paNSKVBuyM9WZ4O4zK7A3ZuUbylFhU/s1600/018.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhMeyfaEHHqUAZs-X53fySt1HWyK5t7Q0z_xITOVA8_Y7zC83WORT-_VXH23cpsHDCqdpyhFzaPEUwU-X0dwDVEtfrxNGrP4THmb7mUsZS0kbs-0paNSKVBuyM9WZ4O4zK7A3ZuUbylFhU/s400/018.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5477051951597511570" /></a><br /><br />So today I get to make cupcakes with my girl and then go to a pool party (for MORE sun) at Nik's aunt's house. Oh excitment!<br /><br />And while there have been a few bumps along this road of near perfection (like when I had JUST put sunscreen on the kids and they decide to rub up all over the sliding glass door to the deck while they were waiting for me to take them outside...all after I had just windexed the damn things the day before....and when they both melted down out of total exhaustion at 7pm last night while Nik was mowing the lawn and I had to bathe the two most crabbiest kids in the world and then keep them as happy as possible until Nik was done mowing since there was going to be NO WAY one was going to be patient enough to let me put the other one to bed with the way they were acting) these are the most MINIMAL and welcome bumps I could ever ask for.<br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-76f2UU9uE1VBhKpVAkzbb8eu1uiVsUclc00D55GryMcysLYY2D3IfYm-lPXcLqSe2jOwEUGjFVeWKQ1HJZ9GLe8b7OarMuL465QhEvLEBLIWjSIhMdLNpE3LIjZrDWOg12HaNLAhEwA/s1600/021.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj-76f2UU9uE1VBhKpVAkzbb8eu1uiVsUclc00D55GryMcysLYY2D3IfYm-lPXcLqSe2jOwEUGjFVeWKQ1HJZ9GLe8b7OarMuL465QhEvLEBLIWjSIhMdLNpE3LIjZrDWOg12HaNLAhEwA/s400/021.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5477052501000612386" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4auhR8qXTNARNTaUcMczEWO8Pe7Uo5YrAtX9uWwyXn5e6JayoyuQ2YR5Bq6OH-IhhqlbetWnyBoLfxWDETGI9XFPRPl3QYJX4TW3n644cJUIxCvm6QqqWX0kEilIPc5uf0xI2gt5PrNs/s1600/019.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4auhR8qXTNARNTaUcMczEWO8Pe7Uo5YrAtX9uWwyXn5e6JayoyuQ2YR5Bq6OH-IhhqlbetWnyBoLfxWDETGI9XFPRPl3QYJX4TW3n644cJUIxCvm6QqqWX0kEilIPc5uf0xI2gt5PrNs/s400/019.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5477052499039247554" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbw969RBsKsqYsKsCqIilaYT-5CGowlWT00vn9OPM_ZPTAuBo-829SC3iyJMPWwPCbi4aNCCGXW1D0koI_YZRUvZ9Uh7fqn5JNOA19n_DcOmeKRQXXyeJAJsMT74rYMyFm77mnjaLmTCA/s1600/019.JPG"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbw969RBsKsqYsKsCqIilaYT-5CGowlWT00vn9OPM_ZPTAuBo-829SC3iyJMPWwPCbi4aNCCGXW1D0koI_YZRUvZ9Uh7fqn5JNOA19n_DcOmeKRQXXyeJAJsMT74rYMyFm77mnjaLmTCA/s400/019.JPG" border="0" alt=""id="BLOGGER_PHOTO_ID_5477052489809144898" /></a><br /><em>(that would be the disgustingness of the sunscreen on the door. Nasty, I know. But even more gross to me is how redneck our deck looks with all the plastic out there. And not to mention the need to restain it! But the kids are lovin in, and thus, so am I) </em><br /><br />So now I'm off to continue this weekend of greatness. I just heard my cue...Bells is up and talking to Noah thru his crib slats about "puptates" (cupcakes)...i swear you tell this kid something before she goes to sleep and she dreams it and remembers it the second she wakes up!<br /><br />Hope you have a weekend of greatness!<br /><br />(and on a side note, hoping jen and her hubby have a fantastic week away this week...you will be missed my friend!)Mikaelahttp://www.blogger.com/profile/04299699527313278772noreply@blogger.com1