Sabrina, my daughter, was born with a very unique disability — a genetic birth defect, where her brain failed to divide properly in utero. The name of this defect is called “Holoprosencephaly.” This means that her ability to learn new things is very limited, communication is next to impossible, and maintaining her health has various barriers and costs that have to be managed with a great deal of care and patience.
What my wife and I have learned over the years is that having Sabrina in our family is by far the most wonderful thing to have ever happened to us. She has opened our hearts and our minds in seeing how beautiful children with disabilities are. More than that, she has shown us how to appreciate the little things in life. To not become upset over petty personal issues. That time, patience, and family are infinitely more valuable than cash money and material goods.
We try and integrate Sabrina into much of our daily routine. This can be anything from dinner out at a restaurant to picking up groceries at the store. Doing these things requires that we take her kid cart (a specialized wheelchair) with us, and that the location that we are going to has room to accomodate it. Most of the time, Sabrina is pretty content to go and see many of the things around in her world. She is a curious girl, and communicates her reactions through smiles or vocalized sounds. Visually, she is an interesting sight to behold as we push her around.
The Public Eye
I’ve noticed something that children do better than most of the adults I’ve ever met: They allow curiosity to influence honesty when it comes to asking tough questions.
Mommy, what’s wrong with her?
Now there’s a good honest question. Straight to the point, served up in a way that only a kid could deliver. A question that I would gladly answer if it weren’t for the asshole parent suddenly shhh-ing downward as they drag the child away by the elbow.
Which, is apparently how it happens many times. “Pay no attention to the little disabled girl in the odd-looking wheelchair.”
God forbid you might catch something.
The shush-ers are a cousin to the people who just stare. I swear, once I saw a woman staring so hard that she darn near ran her cart into the aisle at the store. It was brilliant, and I nearly laughed out loud. Serves her right, I thought to myself.
All of these people and their rudeness irritate me, because I really don’t mind talking about Sabrina. I dislike the feeling of cynicism that it brings out in me when people act a particular way toward my daughter in public. I am, apparently, a very protective dad.
I’m sure that some of the people who awkwardly avoid my daughter believe that they are just being polite, but the truth is that it just makes them appear foolish and uneducated. Perhaps next time, try a smile and a little wave. Maybe even quietly say, “Hi there.”
Some People Understand
Julie and I have met some very amazing people locally, through people who aren’t afraid to come up and talk to us about our daughter. Many times it’s because they’ve had experience with someone in their own life that has some type of disability. Sometimes, it’s people that are involved in the industry of medical care or therapy.
The rarest person of all is the parent who I’ve witnessed talking to their child about what they are seeing. And although I can count these people on a single hand, it never fails to restore my faith that humanity will carry on empathy where it needs to: That there will always be the shining role model of a parent who, instead of staring, or shush-ing, or walking away quickly, will bend down to the curious child and make a decent attempt at answering the difficult questions with a kind air about them.
She’s got a very special chair because she can’t walk. See, it’s pink, just like your shoes. Can you say hi?
So if you happen to see a family out and about, wiping drool from the corner of a disabled child’s mouth, look deeper than what you see on the surface. Give them a smile that shows how much you respect the hard work they go through as parents. Don’t stare. Don’t pretend you didn’t just see them. Don’t haul your kid away like they nearly touched a zombie. The family just might appreciate you for it.
Because I would appreciate you for it.