Co-Blog- This month, I wanted to share with you a blog Ivy wrote that really affected me and I think will move you. For me, this is story is about taking off our glasses, the way we view others, the way we view the world. Hard as it is, heartbreaking as it may be, we have to squint, to see the world differently, and to see the world as our sons see the world. And with some luck, we might just appreciate ‘the blue one.’ Thank you Ivy for sharing a moment we all can relate to and we all can learn from.
A Blue One
My son, Rain, is four years old and is outgrowing his old baby stroller. Even though he is walking well for short distances, he will need some other conveyance for longer distances. After some consideration, we decided to approach the conveyance question the same way we might approach a pair of new shoes. After all, he needs a contraption to help him get from place to place. He'll be using it a lot, probably every day. We figured he should be part of the decision of what to get. We laid out a couple of alternatives that we thought about equal in value, and asked for Rain's opinion.
"Rain, you're getting bigger and you're about to outgrow your stroller. When you do, would you like to have a stroller that's the next size up or would you like to have a wheelchair?"
Big, enormous smile. "I want a wheelchair! A blue one."
"You know that it won't be a power wheelchair like our friend Mark has. It'll be a push wheelchair where you just sit there and a grownup will drive you. We won't use it in the house. We'll use it just the same way that we use the old baby stroller now."
"I want a wheelchair. And when I get tired, I can just sit down in my wheelchair!"
We asked our PT team for their thoughts. He needs a kid mover; in the end it doesn't really matter what it looks like. Function and portability are important but looks not so much. We've always said that we aren't afraid of gear. Gear is good; boys love tools and stuff with wheels. We believe in better living through the judicious use of technology. We've asked Rain repeatedly, trying not to overly influence our wording to one side or the other, just to make sure that this is his true wish. He has never waivered. He is so excited to have a wheelchair. (A blue one. He's very specific.)
It's hard to convey on the page the enthusiasm of a four year old, so you'll just have to use your imagination. Imagine a typical kid being offered a new bike. Imagine yourself being offered a new car. For Rain, it's the equivalent of being offered the choice of a minivan or a custom sports car. Perhaps it would be sensible at his time of life to go for the expected and get the stroller. But if you were given the choice, really, which would you choose? Ok, not you, actually, all you sensible parenting types. But if it were your son (or brother or husband) which would he choose?
We can see some good reasons to go for it. After all, why not? A kid size manual chair can cost about the same as the adaptive strollers we've seen. The upright position is more engaged than a reclined stroller. With the wheelchair he might actually be able to get in and out by himself, like he can do with some regular furniture chairs. A wheelchair will fit in the van and may even be lighter than the old stroller, making my daily lifting just a little bit easier. A wheelchair is not infantilizing like a stroller can be; grownups use wheelchairs all over town but we only see babies in strollers. I can see it from Rain's point of view: a wheelchair is cool.
For me the key benefit looks like it will be the same as the primarydrawback. A wheelchair is self explanatory. On the one hand, I won't be left standing outside the aviary at the zoo pondering my kid moving options. I won't end up trying to carry 40 pounds of uncomfortable, neck-craning boy. We'll just roll right in and no one will tell us that our device isn't allowed. We won't get any more dirty looks when we use "Rain's special parking spot." People will take one look and they will know that my kid is handicapped. Hmm. On the other hand, people will take one look at us and they will know that Rain is handicapped. They may give us dirty looks when he hops out of his wheelchair to play. They may ignore us or pretend they don't see us. They may ask all kinds of rude, impertinent, personal questions. I may need to hand out a lot of PPMD bracelets.
At age four, we're deep in the "Really? I never would have known!" phase. Rain is doing that thing I like to call "asymptotically approaching typical," where he's near the peak of his abilities before the scales have tipped too far toward the muscular deterioration side. After his years of developmental delays, his efforts and struggles to gain skills, he is just now able to appear "not handicapped" for the first (and maybe the only) time in his life. Do we really want to break our cover now with the big WC? And does it even matter? That so-called cover isn't going to last. The perceptive and the experienced aren't fooled. We can't afford to live in denial even if other people don't know what we're going through. We can't hide from the truth about our son. Rain is handicapped. He has Duchenne muscular dystrophy and nothing short of a cure is going to ever change that.
So I guess we're going for the wheelchair. The blue one. I just hope it fits in the Tesla. Which, of course, will fit in the van.
Ivy Scherbarth is a Colorado/Wyoming FACES Coordinator for PPMD. Follow Ivy at her blog, My Son, My Rain: A personal, biased account of one family living with Duchenne Muscular Dystrophy.