The Sydney Craven Family
Sydney was diagnosed with Type I SMA at the age of 6 months and we were assured she would not live to age two. But here I am, trying desperately to think of what to get her for ninth birthday that’s coming up in a few weeks. It’s just not that easy coming up with gift ideas for a child that can’t move or sit up or hold anything in her hands or lift anything. Sure, there’s the usual items that always work – some new movies; a couple fresh outfits that I’ll buy in the same size as I did last year; a song and a birthday cake she can’t eat. I wish I could think of something better.
Sydney wants things all the time, but they’re things I can’t just wrap up in a box. She wants to wash herself in the shower and hang her own clothes up in the closet. She wants to rub the corners of her own eyes when they need it. She wants to turn her own head to the window to find out if it’s raining or if it’s just cloudy. She wants to take a deep breath without an ambu bag. She wants to be alone in a room without being afraid that she’s alone. And me? I want her smile to come back because I really miss it. I want to stop being afraid that she’ll die, or worse, that just maybe, I’ll die before she does and she’ll be left here alone. And just once, I’d really like to buy her something fun, like a pair of roller skates.
Even with all the challenges that SMA brings, sometimes it’s things like thinking of a good birthday present that seems the hardest. But Sydney’s entire family has already given her a wonderful gift this year – one that she doesn’t even know about and probably never will – a donation to this research project in her honor. I’m deeply grateful to Sydney’s loving grandparents, great grandparents, her aunts and uncles, my own aunt and uncle and extended family, all of whom pitched in to make this donation possible.
The truth is, after nine years, I have very little hope left that anyone or anything is going to ever make spinal muscular atrophy less brutal than it is. But with the last shred of hope that remains in me, that last piece that I’m trying not to let go of, I’m so thankful for the generous support of my family and for the love and attention they give, and have always given, to Sydney. I think all of us know that I’ll never get to buy her roller skates, but maybe for Sydney’s tenth birthday, if God grants it to her, I can tell her that something really amazing is just around the corner. And if I can’t ever say those words to her – if no hero ever comes to excise SMA from our lives – then I’ll still know she lived not without heroes. Sydney and I have a whole family full of them!