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“I couldn’t do what you do.”
Their words hang in the air. They don’t know what else to say.
I used to utter the same phrase.
I would put a special needs mom on a pedestal of my own making.
Separating her from my trajectory of life, I was creating barriers. Her abilities seemed extraordinary and unattainable.
But now I’m on the other side. I’m looking through the eyes of a mom slightly weathered by the challenges of special needs.
“I couldn’t do what you do,” their words echo.
“Yes you could,” I reply.
“If you had to, you could.”
One and a half years ago, instead of crawling into bed with my newborn baby, I stood over his wounded body, discussing earth shattering defects and bleak outcomes. I spent endless sleepless nights next to a NICU bassinet. I prayed my baby through peaks and valleys.
I had to. I had no choice. And you would have, too.
Last year, I held him for months as he suffered from brain pressure that was so severe, all he could do was cry. Doctors had decided he was not fixable. I was crying with him, begging God to help us find a surgeon that could help.
You would have, too.
I learned medical procedures and have spent hours each day doing cares and therapy. Ever learning, bending, growing, and doing what it takes to give the best quality of life possible.
And you would, too.
I have a constant awareness that anaphylaxis could strike at any given moment. Environmental triggers loom out of my control, and I must remain poised to act swiftly. Armed with Benadryl and Epinephrine everywhere we go, and ready to use it.
You would be, too.
I have been guilty of uttering the words, “I couldn’t do what you do.”
What I really meant was, “I don’t want to do what you do.”
I wanted healthy children with functioning bodies. I had been primed by the cultural mantra of “all that matters is a healthy baby,” and all of a sudden, I didn’t have that healthy baby. So then what?
There was no room in my plans for a crushing diagnosis. My little world was completely dumped upside down, and I was forced into doing what I never would have chosen.
So I put one foot in front of the other. I learned that having a healthy baby is not all that matters. I’ve lived Matthew 19:26 over and over and over. “…with God, all things are possible.”
I may be choosing the next set of wheels while you’re interviewing dance studios. Encouraging mobility.
You may be cherishing sweet conversations and the pitter-patter of little feet while I’m elated by a giggle and a wiggle. Enjoying the little things.
You may be on nature walks through the forest while I’m sitting in the yard, watching determined fingers bat at blades of grass. Taking in the world through the eyes of a child.
We do what we do because we love our kids. You and I aren’t really that much different.
I may have extra gear, extra responsibilities, and extra challenges.
But I know you and I want our kids to thrive, grow, enjoy life, to love and be loved deeply.
We’re people just like you.
If you tell me, “You’re amazing. I wouldn’t be able to handle that,” I know better. I used to say the same.