“Make a Muscle, Make a Difference.”
Lauren, aged 5 and with a huge grin: Mom, am I going to have SMA forever?
Lauren: aw, snap. [pause] Can we get a bouncy house for my birthday even though I can’t go in it? I want to watch everyone else jump. It’s so funny when their hair flies up in the air. I wish I could go in the bouncy house.
Lauren: Will I ever be old enough to walk?
Me: It’s not your age, sugar. It’s your muscles. Your leg muscles aren’t strong enough for you to walk on them.
Lauren: But I can never run if I can’t walk. How do I run?
She has a point, but how can I look at this little girl and tell her that she’ll never walk? I never lie to them, just gloss over certain details until the twins are a little older. But what do I say to a kid who just wants to jump in a bouncy house, but she thinks she can’t only because she’s “still a baby”? She’s too young for Punnett squares, though that concept really is the beginning of the fundamental answers to her question.
Their dad and I are carriers for the SMA gene. We didn’t know. We already had one beautiful and brilliant daughter and were hoping for another. Lickety split, we found ourselves in an operating room while our doctor delivered not one but two babies, and the next thing we know we’re on a first name basis with pediatric neurologists.
Here’s where I distract you with photos of happy, charming children:
My kids are the real stars here. They are the heroes. They are the most patient, caring, tolerating, understanding beings on this planet. They are so trusting and happy and brave. They brighten every room they enter–that’s not just a mommy perspective on my part, but an observable phenomenon which happens wherever they go. They are a joy, and I get to be the one to share them with all of you.
I’m just a regular person. I have all these kids, but I don’t really know what I’m doing here. The ‘having them’ part was relatively easy. It’s the ‘parenting them through physical disabilities’ part that sometimes presents challenges. I know I’m not the first or last person to be challenged with such a task, but if I can help other parents avoid conversations like the one I just had above then those are the umpteen reasons I have to champion this cause. Can we cure muscular dystrophy already?
The 2013 Muscle Walk in Tempe: Walk with us. Donate to our team. Show your support. Research details and progress here. Donation and participation details here. C’mon, it only takes 19 muscles to click a link (I completely made that up, it could be 200 muscles for all I know). But I will take your money however it comes.
Cassandra can be found on Twitter @aclevergirl. Learn more about her family’s unique challenges and why they have hope for a cure for muscular dystrophy at byrdsforacure.org.