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Sunday, March 27, 2011

Floppy Ain't So Bad At All

Miles is floppy. Well okay, the word is hypotonia. He has low muscle tone. That's the reality for people Down syndrome. That's why he has to do occupational and physical therapies, to help strengthen all the muscles in his body, including his tongue. That's why babies with Ds take longer to hold their head up, sit up, roll over, crawl, walk. It involves every single muscle, so it's also why Miles has poor control of his fingers and hands, his mouth, etc. Most of his therapeutic work right now is focused on strengthening his core. The stronger his core, the more solid and confident he will be to perform any task.

It's sad and inconvenient that Miles has to work so hard to strengthen his body when other kids just have that strength naturally. But I think there's a big upside to hypotonia: it makes Miles really cuddly. At 19 months I can still hold him and he feels like a warm, yummy, cuddly little baby. You know how parents are always like, "I wish my kid didn't grow up so fast?".....Well, I feel like that doesn't quite pertain to us. Miles is growing at a slower rate, so I actually have to slow my mind down to be at his speed. And it's good. When he's ready to make a big developmental jump forward, I'm ready for it too. And since he's my only baby, I don't know any better. I'm used to how soft and floppy his body is and I forget that's not the way it's supposed to feel. When I hold someone elses baby I am amazed at how strong they can be at such an early age. Then I get it, and the difference is plain and simple.
I mean yes, all my friends' kids are walking and Miles isn't. I'm okay with that, I know he'll do it sooner or later. What amazes me is when I see other kids move their bodies in ways that Miles isn't even aware that he can do. It's the little things that catch me off guard.

Miles and I were hanging out with some friends today and I saw one of them roll around on the floor, just for fun! She would roll over about 4 or 5 times in one direction then turn around and do it the other way. I've never seen Miles even attempt to do that. I don't think he knows that his body can do that. Recently, I also babysat my friend's ten month old baby and he started pinching me when I held him. Pinching me with such strength that it actually hurt. Miles' fingers do not have such strength. He's never pinched me. Once day he'll do it, but at 19 months, he still can't.

Any time I hold a typical baby I am reminded of how Miles is "supposed" to feel, how strong he "should" be. He should sit up straight and hold himself tightly, using his core strength. Yet as healthy and strong as all those babies feel, I love the way Miles is soft and cuddly. His floppiness might be a pain when it comes to putting him in and out of his car seat or getting him dressed, but he feels so good that I just want to hug and squeeze him all the time. And I can feel him getting stronger when I hold him. I can actually feel the change happen, which is amazing. That's why the fact that he is finally hugging me is so sweet. He has to engage muscles in his back, neck, arms, core and even mind just to give me a hug. And he is doing it now, even unconsciously when he's sleeping. I melt. Every single time. I melt.

So although it would be great for Miles to be stronger and engage his muscles to move the way typical kids do, I am okay with him taking his time. Because I get to really experience and savor the little moments. And those little moments become huge, exciting moments that make my day. Every day.

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