What do you do when someone says the wrong thing about your disabled child?
I don’t know what you do, but I’ll tell you what I did on the 4th of July when we had a staycation at a resort in Phoenix. There were a hundred kids running around and playing in the grass while parents sipped on drinks and watched. A fellow mommy stood by me and we chatted about all the events the resort had to offer.
As I was talking to baby Caleb, the mom said, “What happened to him? I don’t want to be rude but just… what’s wrong with him? I assume you adopted him like that?”
That’s a perfectly fair question and if people don’t come up with the perfect and poetic way of phrasing it, it’s OK by me!
So I said, “He has spina bifida. It’s a birth defect that makes his legs weak so he uses a walker. He actually is my biological child, and I have another one over there in a wheelchair. Both mine. They are amazing boys. I feel very lucky.”
Then she said this:
“Ohhhhh, I’m so sorry. I feel so bad for you. I had a friend that learned something would be wrong with her baby and she made the right choice and took care of it. I mean, who wants to go through a pregnancy like that knowing what’s ahead? I assume you didn’t know this was going to happen while you were pregnant. It’s so sad.”
OK ya’ll. Before you flip a lid I want to point out I consider these moments to be lessons where we can learn and understand each other better. This is what I came up with on the spot.
“I definitely understand why your friend felt so scared. That’s human nature and we want to stay away from things that look difficult. I was very scared when I learned about my boys’ disabilities too. But do I look like a sad woman to you? I have a beautiful life. And look at my son. They are so worth it.”
We both gazed at him while he danced and giggled and a million tweens gathered around him to watch his entertainment.
“All I know is your friend would have really loved that kid.”
Her eyes welled with tears and she looked down. For a moment I wondered if that “friend” may have actually been her.
Of course we can all agree there are softer ways to talk about people’s children, but I don’t mind when people say the raw, candid things because they are revealing a fear. My life looks “scary” to them and they can’t contain their reaction. I could be mad or I could let her see a little of my heart too. We all make snap judgements about each other.
I hope these conversations will make a shift. I hope one day, if a person who has less mobility than another, their life will not be seen as “sad” or less than. I hope their disability will open the doors for more acceptance and love.
I walked over to my boys, hugged them hard, and burst with pride as they played with all the kids around them, because kids have a beautiful way of seeing past this nonsense and enjoying things simply. Not one of them mentioned his disability. We have so much to learn from them.