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When I Was Asked What's 'Wrong' With My Son With a Disability

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My 5-year-old son is one of less than 20 known individuals with his particular genetic condition. A few weeks ago, a friend messaged me and told me that another person had messaged her asking some questions that, while seemingly well-intentioned (in that their answers were intended to educate a child that Simon sees every day), were poorly worded and wildly insensitive.

When I first saw those messages, I laughed. I didn’t know what else there was to do. A chuckle, an eye roll, and the shake of a head are fairly functional protective shells. You try to brush it off. You really want to brush it off. But then it seeps back in when you’re trying to fall asleep at night, or when you’re in the shower, or when you take a moment to breathe during the workday, and despite everything that you know to be true, the idea that there is something “wrong” with your child drowns everything else out.

And then you get angry. Angry at the world for not understanding that all you want is for your child to be loved for who he is. Angry that you have to live in a constant state of abject terror, not only for your child’s health, but also for others’ preconceived notions of disability and the harm that they can cause.

And after the laughter and the anger comes sadness: the grief that Simon is a square peg that people are trying to fit into a round hole, when really they should change the shape of the hole so that everyone can fit in.

But after that comes the hope that if you want to know about my son, you’ll be willing to listen to the story as my family wants to tell it. The hope that the way we’ve chosen to advocate and educate can help you to learn what to say and how to ask the questions that you want answers to.

So instead of laughing at you, being angry, or just vanishing into the spiral of sadness that so easily takes over every facet of my life, I’ve decided to move forward with grace, for both you and myself. And then maybe we can learn together.

You asked what was wrong with Simon. The word “wrong” either means “incorrect or untrue,” or “unjust, dishonest, or immoral.” My son is none of these things. He has an organ system that doesn’t function as it should, and he’s delayed because of a brain condition, but not one bit of him is “wrong.” Language is important, particularly in the way we speak to and about people with differences. Saying that something is “wrong” implies that there is a “right.” It suggests that just because of the million to one odds that my child was born with his condition means that he’s less than. That he is not as valuable or important as all of the other children who are “right.”

There is nothing “wrong” with my son. He’s perfect just as he is. And one of the hardest things about these messages was the implication that a parent cannot value their child because of (and not in spite of) their differences. My kid is strong, kind, sensitive, and hilarious, and those are the things that define him for me. Questioning whether it’s really true that parents consider their kids with disabilities to be a “blessing” is like a slap to the face. For so many reasons.

First is that I hate the word blessing for much the same reason as I dislike the use of the word “wrong” in this situation. A blessing is some sort of gift or protection sent by a higher being. Simon’s disease is not a blessing. Simon is not a blessing. He is a child. A child that my husband and I chose to have, knowing that he was sick, and only after a barrage of tests and appointments that helped us make the decision not to terminate my pregnancy. Simon is not a miracle either, and much of the disability community resents being seen that way. The line between advocacy and inspiration porn is one that I think about a lot as the non-disabled mother of a disabled child, and I am writing this because it is my responsibility to use my privilege to dispel and break apart this narrative.

But, if you ask if I would change anything about Simon, I find myself at a mental and emotional impasse. I want Simon to be healthy. I want him to have a long and happy life. But being his mom has taught me so much, and having a community of rare disease families has been one of the best things that we’ve happened upon. At the core of the reason why I think that the parents of disabled children call their children a “blessing” (or anything else along those lines) is because when you’ve been through what we have, you begin to understand the depth of human experience and capability in an entirely new light.

Would you want to change your child? Would you take away all of the bad if it meant that the little human that you love would be a different person than they are now? I am Simon’s mom, and not anyone else’s, and being so has made me a better person, and I’m not sure I would want to exchange who I am or who he is for an easier path. I love Simon as he is in the same way that I hope all parents love their children. He is not “wrong” in the same way that he’s not a “blessing.” He’s just a kid. Who happens to be a bit different.

Don’t get me wrong, this shit sucks. Simon sees his doctors more than he sees his family. I have seen things that I would wish on no one. I have watched my child be taken away to have his head cut open and a camera and scalpel put into his brain. I have watched him be intubated after seizing for over an hour. I have watched doctors and nurses hold him down while he’s been screaming and fighting them. I have had to hold him down while he was in the process of being put under anesthesia. I felt his body go limp under my hands. I’ve sat with him for hours at a time getting infusions, doing whatever I could to keep a kid with a line in his arm entertained for half a day. I’ve stayed up all night wondering if this is the sniffle or the stomach bug that will trigger his kidney disease to progress.

When you have a sick child, it’s not just that you experience feelings on all sides of the spectrum. The moment any parent hears a diagnosis, our spectrums, the range of emotion that it is possible for a human to experience, expands to something so vast and hostile that there are days where you think that your body is going to shatter into nothingness, where the gravity sink of a black hole is tugging you in, where you’re so close to the precipice of a waterfall that it’s too late to turn back. So yes, it is “incredibly stressful,” but only on a totally “normal” day in our lives. “Incredibly stressed” is our default. Those are the good days. The bad days are unimaginable. The parents of medically complex or otherwise disabled people are capable of experiencing pain in a way that you can only imagine, and even what you could imagine is nothing close to the reality of it.

I think about the fact that I might lose my child every day. Without fail, the thought permeates through my body, and for just a moment, I am already grieving. And it is because of this that I am able to see the beauty of my son’s life in a way that makes me value every part of him (even those damned kidneys). If our time is cut short, I want to know that what I grieve for is the joy, excitement, playfulness, and love that we now have in our lives every single day.

Our lows are low. But our highs are celestial. Every single time my boy writes his name, it’s all I can do to not cry. When he took his first shaky steps at 26 months old, my husband and I went to bed feeling like nothing in the world was impossible. Every milestone or new skill is cause for celebration. We get a cake for the anniversary of Simon’s last brain surgery. Every single year. It’s an extra birthday party for us, and we spend that day filled with gratitude and joy that we have our little boy sitting next to us and do nothing but lick the frosting off of the cake. I really should just get the kid a can of whipped cream next time.

So yes, this life is stressful, awful, and filled with fear, anger, and grief. But it is also indescribably beautiful.

So how do you explain disability to a child who doesn’t understand it? First off, you don’t need to know anything about a person’s disability. You don’t need to know what illnesses they have or what things they struggle with. (Although if you’ve followed me for any length of time, you would know that I write about it all the time.) You wouldn’t want me to ask you personal health questions with no prompting, and I wouldn’t want to put someone in that position. It goes both ways, and just because Simon is different doesn’t give anyone the right to cross the social boundaries that exist for everyone else.

The explanation is simple: Simon is a little bit different, and maybe he doesn’t do everything the same way that everyone else does, but that’s OK because we all have strengths and weaknesses. Instead of asking what is wrong with him, ask him what he’s good at. Ask him what he is passionate about. (The answer to both is drawing cars. All day. Every day. Like seriously, it’s all he does sometimes.) Don’t make him any more or any less than who he is. Tell your child that Simon is just as special as they are, and that it takes different people who are good at different things to move the world forward. And when we give what we each have to others that don’t, we all thrive. Teach your children to love mine not for what makes him different, but for what makes us all the same.

Getty image by Pollyana Ventura.

Originally published: February 4, 2022
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