When I Decided to Forgive the Mom Who Said My Son's Rare Disease Was a 'Bummer'


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 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 confounded, 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 seems to say, “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 ignorance.

But I was wrong.

boy wearing gray shirt in wheelchair
Shannon’s son Finley.

Here’s the thing. Some things are complicated. 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 I just don’t say anything.

Sometimes I step back from our life with brittle bones and think how hard it must be to take this information in about fractures and infusions and surgeries. It’s like I literally drop a 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 me before a procedure. We were talking about kids and families and it came up. It’s part of my life, so I threw it out there. I think she was tearing up, bless her heart. She was probably picturing her own little boy in pain and wondering how 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 know me, doesn’t know my heart and how I might react. She was probably scared. And she got very quiet. It broke my heart.

I say all this because last year I saw a lot on social media about how some parents of kids with disabilities expect other parents to behave. There was a lot of judgment and tossing out of instructions. “Don’t come up to my kid in his wheelchair!” “Don’t treat us differently, 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 parenting children with disabilities — you are tough. I love how fiercely you defend your babies and let the world know how you believe they can best be when your child is around. There are times when we must show our pain and frustration with how people talk to us and behave around us. But know that for the most part, the world does not intend to cause you harm. Other parents may not know your pain or your challenges, and they likely can’t until they walk in your shoes. How many filters can we ask people to put in their brains before we build a wall so high 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 stay calm, too. And know that your experiences can be difficult to grasp.

I hope this year to focus on loving my fellow parents more. To show them I want us to connect. That I embrace their beautiful children. That I don’t resent them.

I hope you’ll join me.

A version of this post first appeared on Tough Girls Guide to Everything.

The Mighty is asking the following: What’s one commonly held opinion within the community surrounding your disability and/or disease (or a loved one’s) that doesn’t resonate with you? If you’d like to participate, please send a blog post to [email protected] 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.


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