Lauren (left) and Jillian.
I’ve written about how social media has connected me with some amazing parents who have children with special needs. These parents provide support, resources, tips, insight, a virtual shoulder to cry on, and an audience with whom I celebrate Syona’s achievements and so much more.
They also sometimes provide me with a heads-up on some of the not-so-great stuff that could become a part of our future. Disclaimer: I promise I have full permission to use the details below; I’m not just a big-mouth friend!
On Friday night I was perusing my Facebook newsfeed (yes, this is what I do on Friday nights. My life is oh-so glamourous) when I read my friend Cheryl’s status update (some of you may know Cheryl from her fabulous blog: The Beautiful Side of Hectic). Cheryl has a two awesome daughters, Lauren and Jillian. Jillian, who is a few years older than Syona, has cerebral palsy. Here’s what Cheryl wrote:
Trying to keep a smile on my face. Jillian said "I wish I could walk... without a walker...." All I said was "I know." She's playing happily now, with her friends.
I wanted to tell her that it was OK. And that Jillian is amazing, exactly as she is. But I just couldn’t. Because in that moment I was pretty sure that all Cheryl was thinking was that cerebral palsy sucks. (OK, I know this is what she was thinking because she sent me a note saying exactly that.) And the truth is that I was feeling the exact same way.
It’s one thing to deal with extra stress, a hectic schedule, long waits for doctor’s appointments, or yet another OT/PT/Speech/Play therapy goal. But when your kid wishes for something that you can’t provide — and that something is as basic as wanting to walk without the use of walker, something that most of us take for granted — all you can think about is how much your heart wishes it could either a) provide some sort of way to make that wish come true, or b) remove that desire from your child so they don’t have to feel that longing.
And here’s the other thing. We all have tough days, there’s no hiding that. And though I am dedicated to living an optimistic life so that I can instill that in Syona, it is absolutely critical that I also teach her that it is 100 percent OK for her to have these kinds of feelings — even when they make her (and me) sad. As parents of children with special needs, we need to teach our kids a way to cope with the not-so-great stuff that is as much a part of their reality as it is ours.
Whether or not Jillian walks without a walker really isn’t in any of our hands. But the fact that a few minutes later she was playing happily with friends, well, that’s exactly why I love that kid.
What scares you about your child’s future?
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