Dear Parents of Disabled Kids – Let’s Start Forgiving More

Last year my son Finley and I had a frustrating interaction with a woman at our local pool. He was in his wheelchair and her daughter was pointing and kid-whispering (you know – talking freaking loud in a breathy voice) to her about why he was in it and what was wrong with him. The mother said something like, “I don’t know, he must be hurt.” In my righteous wisdom I took the opportunity to educate, letting them know about Osteogenesis Imperfecta (OI) and why he was in the chair. They were dumbfounded as is often the case, and the mother came back with a simple, “bummer.” My son’s entire existence wrapped up in one little word that says ‘your life sounds like crap’—and of course he heard it.

I was beyond angry. I immediately came home and vented on Facebook about this interaction and condemned the woman for her ignorant stupidity. 

But I was wrong.

Here’s the thing. Some things are complicated and difficult to wrap your brain around. For instance, I really struggle with what to say to someone who has lost a loved one. I truly don’t have the right words, if any words. I have not experienced that. I find myself running different scenarios through my head and trying to feel what that person might feel if I say what I think I should say. I get all tangled up in my thoughts and end up totally insecure about my response and hoping I did not upset them. And often just not saying anything.

{Finley getting a port flush at Salem Hospital}

Sometimes I step back from our life with brittle bones and think of how hard it must be to take this crazy information in about fractures and infusions and surgeries. I literally drop a crazy life bomb on people every time I tell someone new about our experience. I saw it today on the face of a nurse who was assisting my pre-procedure rituals before an endometrial ablasion (damn, girl, that’s another story for another time). We were talking kids and families and of course it came up. It’s part of my life just like laundry and swim team. I throw that bad boy out there like this girl and I have something in common here… but we don’t. I think she was tearing up, bless her heart. She was probably picturing her own little boy in pain and wondering how in the sam hell I get through a day. She’s not alone.

So what is she supposed to say? How is she supposed to react? What can one possibly do that makes any sense in that moment? She doesn’t even know me, doesn’t know my heart and how I might react. She was probably scared to death. And she got very quiet. It broke my heart.

I say all of this because last year I saw a lot of social media scuttlebut about HOW disability parents expect the able bodied ones to behave. So much judgment and tossing out of instructions. “Don’t come up to my kid in his wheelchair!” “Pay attention to my non-disabled kid too!” “Don’t treat us different, we’re just like you!” Some of these lessons need to be taught, I know. But are we taking it too far?

To my beloved comrades in the world of disabled parenting—you are tough. You’ve proven your bad assery time and again and I love you for it. I love how fiercely you defend your babies and let the world know how best to be when your child is around. There are times when we MUST show our pain and frustration with how the world talks to us and behaves around us. But know that for the most part, the world does not want to cause you harm. Other parents do not know your pain or your struggle and they never will until they walk in your shoes. And the more demands we make, the more others will recoil when they see us. How many filters can we ask people to put in their brains before we build a wall too high that no one can climb to reach us?  

So I’d like to encourage you to forgive this year. Educate when appropriate. Lead by example. But calm down too. And know that your life is confusing and difficult to grasp. You’ve got it on lock because you have no other choice and you are a total beast of a parent.

I hope this year to focus on loving my fellow able-bodied parents more. To show them that I want us to connect. That I embrace their beautiful children. That I don’t resent them for the luck of the draw that landed me with OI because frankly, I’m too tough for that and my kid is a boss.

I hope you’ll join me.

#toughgirls

toughgirl

Hi, I'm Shannon. I like to write about tough girls and tough things because I find strength to be an interesting and inspirational topic. My husband, Vic is my favorite person and my children, Emerson and Finley are right up there too. I am a disability mother and advocate. A woman-loving, lean-in type. And a fitness coach and cheerleader.

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