I 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."
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.
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.
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.
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"...
....so i bought her three ;)
Sunday, November 21, 2010
Thursday, October 14, 2010
Weight of the World
I 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 this is IT. This is what my life is for. They are my world and they give my world meaning and purpose and weight. And it was heavenly.
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.
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.
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!)
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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!)
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.
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.
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.
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.
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.
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.
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.
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.
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.
Monday, July 19, 2010
Jumping bean
It 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.
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.
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.
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.
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 :)
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 :)
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!
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.
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.
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.
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 :)
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 :)
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!
Friday, June 18, 2010
"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...
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.
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!"
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?
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.
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.
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!"
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?
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.
Wednesday, June 16, 2010
Busy busy busy
Seems 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:
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.
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.
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!
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.
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!
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.
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!)
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. =)
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!
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.
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.
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!
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.
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!
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.
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!)
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. =)
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!
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