Monday, October 5, 2015

Muscle Tone

Dear Jules,
One of the many things I did not know about DS (before I had you) is that it is characterized by low muscle tone.  That means that every single muscle in your entire body has to work harder than, say, the corresponding muscles in my body.  So what does that mean?
It means that, when you try to wear flip flops, the little muscles in your toes can't quite hold them on your feet.  In fact, we went shoe shopping today, and supportive shoes are a must for you.
It means that, when you are running and playing with your friends, you are using up way more energy and getting more tired.  When people judge me for picking you up sometimes, they might want to consider that you might be more tired than their kids.
It means that your tongue is not as strong as mine.  Did you all know that we use our muscles to keep our tongues in our mouths?  If they are not as strong, they will hang out, so, contrary to popular belief, people with Down Syndrome don't have "bigger tongues" that those without.
It means that the muscles in your eyes have trouble focusing.  That's why you wear bi-focals (I get this question all of the time, so I thought I'd answer it).
It means that you have a tough time rotating your wrist and, therefore, using a spoon or fork.
It means that it's hard for you to jump because, again, jumping uses lots of different foot muscles.  In fact, you wore an orthotic device when you were little and learning to walk:
(there it is under your shoe).  And, actually, it means that you are an extremely flexible kid, since, as I know from running, too much muscle tone decreases flexibility.
It also means that your friends in Special Olympics kick some ass.  For instance, your friend Elizabeth Carpenter  has won multiple medals in swimming, which is just freakin' impressive.  And then look at these athletes, running triathlons, something I only aspire to do someday.

I have so much more respect for Special Olympics than I ever did before, and seeing how hard you work to run and play and never, ever give up gives me the stamina I'm gonna need to run my final FULL MARATHON for LuMind Research Down Syndrome Runners.    In fact, you heard it here first, folks:  I will be running one in the spring, most likely the Rock and Roll Washington DC Marathon!  Not to sound cheesy, but every time you learn something, like how to rotate your wrist or how to jump or how to skip, I think about how hard you have worked to get to that milestone, and how hard I am willing to work to give you the absolute best quality of life you can have.  It's important to me that RDS is not trying to "cure" Down Syndrome (who would want that??!) but to come up with more comprehensive therapies and ideas so that people with DS can maximize their potential.  And, if 98% of life is "showing up" and if hard work means so much more than raw talent, I think that potential is huge.

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