Challenges related to disability… Well, I don’t feel overly qualified to talk about this because I myself don’t have a particular disability. Though I think we all have some level of disability in some way, no matter how big or how small, somewhere in our lives… But I don’t have a recognized disability that impacts how I live my life or how I am treated by most other people, so for all intents and purposes, I don’t have a disability.
I can speak about the challenges Sam’s disability presents, but I wonder how different it would be if Sam were talking about this. What would he say? Probably that physical therapy is a challenge he doesn’t particularly enjoy. It’s not very much fun to do tiring activities that he doesn’t see the purpose of. And he might also say that feeding therapy is a challenge. He’s really not a fan of working on eating foods other than his staples of plain yogurt, goldfish crackers (cheddar only!), and potato chips (Lays Original or kettle chips, please!). He might also say that communicating is a challenge, because he can’t speak in a way that most people can understand, and the numbskulls he lives with aren’t bright enough to always recognize the signs he’s trying to do!
But really, I can’t speak for Sam. I can only speak for me. What challenges does disability bring to me? Honestly, it brings more annoyances than challenges. Dealing with paperwork and red tape for IFSPs, IEPs, third-party therapy services, extra doctor appointments, and so on isn’t particularly challenging (unless you consider the time management involved a challenged, which I suppose it is), but it’s annoying. I don’t begrudge Sam—none of it is his fault, and it just has to be done. But it is annoying, and it’s a pain in the rear that I could honestly do without.
Dealing with ignorant people, too, is more annoyance than challenge. Today I was in line at a theme park, and an ignorant woman in front of me started joking with her son about how to get ahead in line: “I know how to get to the front of the line—tell them my kid is a retard! Hey, start drooling so we can cut ahead in line, okay?!” Hurtful? Yeah, kinda. Annoying? Absolutely. Ignorance is irritating. But challenging? Not really. Again, like paperwork, it just is what it is, and we handle it and move along.
But there is one challenge—one huge, overwhelming challenge—that disability has brought to my life. That is confronting the fragility of life and not letting fear swallow me whole.
Entering the special-needs community has showed me too many times the fragility of life, and every time it does, it scares the hell out of me. My Sam was born healthy, thank god. We nearly lost him during labor, but he persevered and ended up being delivered perfectly healthy. We dodged the bullet that is heart problems, though there was a tense 24 hours right after he was born when we weren’t sure we had. Although he seems to catch every cold and virus that goes around, he has yet to be hospitalized for any of it, and he has overall maintained good health.
But he is one of the lucky ones.
All too often, I hear about kids with Down syndrome passing away from something that wouldn’t normally fell a typical child. Not long ago, three precious toddlers with Down syndrome died in a matter of 72 hours. And I have friends in the Down syndrome community who have fought tremendous medical battles with their kids—they’ve faced things that would bring me to my knees. And yet they go on, because there is no other way.
So that fragility of life—that realization that no matter how hard you fight and what you do, your child can be gone in an instant—is the biggest challenge of disability in my mind. Honestly, this could be true of any child, but it just seems to happen more often in the disability community, and so it has become much more present in my consciousness.
I hold Sam close to me every night before bed, breathe in deeply while I press my cheek against the top of his silky little head, and silently give thanks for another day with him. I never did that before. I appreciated the gift of every day with my older son—yes, even the challenging ones where I couldn’t wait for him to go to bed!—but I didn’t have that sense of, “Thank you, thank you for letting me have this precious being for one more day.” I do now. Every single night. Without fail. And it’s a good thing to have that appreciation for a life, I think, but it’s also a challenge because it forces me, every night, to think about the fragility of life. And that is a very scary thing.
But sometimes the most worthwhile things are the scariest, aren’t they?