When I Question the Kind of World My Disabled Son Will Grow Up In

The doctor’s parting words were a gentle but bittersweet reminder to us: “Kids surprise us all the time.” We sat and cried in that room long after the doctor left, and it was not lost on me that the staff never once rushed us. By the time we walked out, the office was closed and the only person who remained was the secretary. We had just learned one of our biggest fears, which we thought we had ruled out three months prior, was most likely part of my son’s condition.

We only gave our parents the full update. We had decided to give ourselves time to digest it all before updating everyone else. And as time went on, I didn’t yet notice that I was avoiding sharing certain videos or pictures that seemed to highlight some of his deficits.

We had hope in that there has been so much awareness about special needs, about how inflammatory the R-word is, plus we’ve seen displays of understanding and compassion toward children like our son, their parents and the adults those children are growing up to be.

So I’ve done a lot of reading up on special needs, intellectual disability and the like. And then I read an article about a school that sent home on a school bus a 7-year-old boy with special needs in a diaper… without pants, after soiling himself. The poor boy had to spend the entire ride being made fun of for being in a diaper. Let’s click pause and actually absorb what was likely happening to him that afternoon: He was not given any loaner pants, or pants from an extra set of clothing (both of which schools should have; all of the schools we’ve dealt with have had both). This was in Washington state in February.

I’m left thinking, “This could not have occurred recently.” Except that it was recent. It was February 16.

Cue hours of me in a perpetual state of “Is this the world our son is facing?” I ache for that boy who so easily could be our son in five, six, seven years. It is so incredibly hard to reconcile that I cannot give him a better world to live in, one filled with the same compassion, acceptance, patience and understanding that he has taught us so much about.

In general, I try to educate myself and read up on this whole world I’ve been introduced to. And after seeing what happened in Washington, I decided to look into the perspectives of other people with disabilities. I Googled “disabled” to see what would pop up. Among those search results was one leading to the thesaurus. According to the English language, my son is and will be: “confined,” “decrepit,” “helpless,” “incapable,” “powerless,” “run-down,” “side-lined,” “wounded,” “weakened” and “wrecked.”

If you’ve read the other article I wrote for The Mighty, you might have noticed my biggest fear for my son is “side-lined.”

But let’s talk about the antonyms, shall we? The only entries include “able,” “healthy,” “strong” and “firm.”

Here’s the thing. Despite the English language, this is what I know about my disabled infant son. He’s taught us patience and compassion, understanding and gratitude. My son has risen above so much more than most people do in their entire lifetimes. Matthew is not even 5 months old, but I can tell you that reading these things gave me the motivation to prove how capable and strong he really is. Because you know what? For all intents and purposes, he should not have survived but for a few days. Every morning, we wake up to a day he was not predicted to have. He’s certainly stronger than I am, and quite the opposite of “decrepit,” “weak” and “incapable.” I am ashamed to see that this is how “disabled” is defined.

In my moment of reflection, a simple statement from a good friend a couple days ago clicked: “I don’t think you should hide how ‘bad’ you think the situation is. I think you should share more.” And then I realized that by not sharing more… we’ve become part of the problem. And it hurts my heart to think I would hide any part of who my children are.

So, let me help you get to know Matthew a little bit better:

We worry about whether his developmental delays will persist through adulthood.

But you know what else?

Because he is unable to hold his head, we get to hold him close to ours all the time.

Because he doesn’t smile, we are able to spot from across the room when he tries with all his might.

Because he doesn’t engage his environment or interact with us, we cherished when he played with my husband for the first time.

Because his feet were deformed, his siblings watched each casting, wrapping, bracing and surgery and learned that despite how badly we don’t want to sometimes, we do things that are uncomfortable and disliked when it is what’s best for us.

Because he so frequently displays such a vacant stare, we celebrate and cherish every time the little boy inside peeks out.

And most importantly, because he has his feeding tube, we received a second chance to watch him live, grow and love.

That’s our sweet baby Matthew. He is who he is, and we are doing everything we can to help him be the best Matthew he can be. As I look at that list describing him, it is clear how far we have yet to go for people with disabilities, a population that now includes our sweet baby boy. The thesaurus describes a person who isn’t him — if that person even exists — so now we are going to prove it wrong.

The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.