A few summer updates...

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.

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.

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.

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.

(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!!)

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.

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.

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.

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.

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.

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.

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.

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.

Tonight Jen and I have our fourth Special Loves Network 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!

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!

Unicorns and Rainbows

Hey 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.

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.

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.

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:

Notice Elmo in the cowboy hat on the floor in the background. I really don't like that toy.

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...

Remember when I said Bells was all sweetness and smiles but refused to look at the camera?

PROOF:

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?

PROOF:

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.

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.



Who me? No, I'm a total angel.



He looks all innocence here, but that leaf was crumbled and thrown like confetti two seconds later.



Totally Busted

Serious Goof Ball

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.



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.

I'll be back soon. I promise not to neglect my Blog Child like this again.

Look at me.

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.

But then, a new worry. Another milestone missed. And so the story goes.

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.

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.

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.


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.

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.

This past week has been especially cruel in pointing out her lack of progress in this area.

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.

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.

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.

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.

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.

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.

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."

That child is a heart breaker.

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 I 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"?

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.

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.

The Misunderstood Child

I am the child that looks healthy and fine.

I was born with ten fingers and toes.

But something is different, somewhere in my mind,

And what it is, nobody knows.

I am the child that struggles in school,

Though they say that I'm perfectly smart.

They tell me I'm lazy -- can learn if I try --

But I don't seem to know where to start.

I am the child that won't wear the clothes

Which hurt me or bother my feet.

I dread sudden noises, can't handle most smells,

And tastes -- there are few foods I'll eat.

I am the child that can't catch the ball

And runs with an awkward gait.

I am the one chosen last on the team

And I cringe as I stand there and wait.

I am the child with whom no one will play --

The one that gets bullied and teased.

I try to fit in and I want to be liked,

But nothing I do seems to please.

I am the child that tantrums and freaks

Over things that seem petty and trite.

You'll never know how I panic inside,

When I'm lost in my anger and fright.

I am the child that fidgets and squirms

Though I'm told to sit still and be good.

Do you think that I choose to be out of control?

Don't you know that I would if I could?

I am the child with the broken heart

Though I act like I don't really care.

Perhaps there's a reason God made me this way --

Some message he sent me to share.

For I am the child that needs to be loved

And accepted and valued too.

I am the child that is misunderstood.

I am different - but look just like you

Kathy Winters

Beauty in the Midst of Struggles

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.

My biggest fear in life is Mitochondrial Disease.

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.

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.

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.

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.

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 now, 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, such as 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.

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.

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.

I am working on letting go in order to find a place of peace. But it is so hard.

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 Jen and I have started up a network for parents and families of special needs children. We have called it Special Loves Network, 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 (http://www.speciallovesnetwork.blogspot.com/) 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!

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.

It's amazing how beauty can be found and connections can be made in the midst of unexpected struggles.

So speaking of beauty, how bout this week in pictures?

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.

"Mommy! Come see what I did!!!"

She was NOT happy when I informed her that we are not supposed to color on the walls.

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!"

So proud!



Not sure how she managed to snag the Student of the WEEK award on a Monday, but we'll take it!!


PS....In case you haven't heard, it's Autism Awareness Month. Learn more, support more, and love more!

Mosie

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.

But I also have a son.

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.

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.

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.

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.

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.

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.

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.

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.

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.

And so does his sister.