After our first fitting with Simeon’s new leg braces, I posted this photo on Facebook:
That afternoon my mom called. She said, “Everyone is so excited to see him standing up!” And I felt a wave of panic– anxiety wrapped up in thoughts I’d been fighting all day. I was excited to see Simeon stand. I was proud. But behind all the joy, something nagged at me.
Here’s my problem, I don’t want standing to be important. Even though I know, in some ways, it is.
When I was pregnant, after Simeon was diagnosed, I received so much encouragement. Kindness came at me from every side and I needed it, badly. But there was one form of comfort that always made me anxious– words spoken in kindness that made my stomach turn. Words that went something like this:
It might not be so bad because…
“I know someone with spina bifida– and he can walk.”
“I know someone with spina bifida– and he plays soccer.”
“I know someone with spina bifida– and you wouldn’t even know he has it.”
It hurt. Words meant to alleviate our worry only intensified my fear that Simeon, if unable to walk, would not be accepted. I heard “maybe your son’s legs will be normal” when what I wanted was “maybe they won’t be, but that’s okay– his life can still be joyful.” Why did standing have to be so important?
I didn’t want walking to matter.
This kind of “maybe it won’t be so bad” encouragement did exactly the opposite of what it was intended to do– it made me afraid. I was afraid that the world would see Simeon as a failure if he wasn’t the exception to the rule of his diagnosis. It seemed that everyone believed my son would have to stand up and walk– to “beat” his disability somehow– in order for our situation to not be “so bad.”
But what if he couldn’t? What if he didn’t?
There’s a poem by Shel Silverstein called “Standing is Stupid” and although I’m pretty sure it’s just about some lazy kid, in light of our new adventures in leg braces, I can’t get that first line out of my head. Maybe standing (or walking, or running, or jumping) isn’t the most important thing. Maybe standing is stupid.
I’m proud of my son for standing. I’m excited to see where these braces take him. But I refuse to believe that standing is a requirement for participating in the world.
And if I meet another mother like me– someone who’s scared, and worried, and questioning her child’s chance at happiness–
I won’t tell her that my son can stand.
What I’ll say is this:
I know someone with spina bifida, and he’s got a great sense of humor.
I know someone with spina bifida and he has a strong faith and a positive perspective.
I’ll tell her that I know someone with spina bifida and he’s got a lot of people who love him.
Because that’s what I wanted to hear. Hope for happiness. Hope for joy. Hope for fulfillment regardless of bodily limitations. Hope for something deeper than simply the ability to walk.
Because really, when you think about it, standing is stupid. At least, in the grand scheme of things, I think it is.
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