Monday, October 7, 2019

What my child with cerebral palsy taught me: parents share

"Car flat."

Max texted me those words from his Apple Watch yesterday in the early evening, and I immediately picked up the phone and called Dave. "Does the car have a flat tire?" I asked. "How'd you know?!" he responded. He hadn't wanted to tell me so I wouldn't worry about him and the boys. "Max tattled," I said. "Max, you're a tattletale!" Dave said, laughing.

It was just Max being Max and Dave being Dave. Nothing extraordinary—which is exactly what I celebrated yesterday on World Cerebral Palsy Day. Having cerebral palsy and intellectual disability are the norm in our household. We don't treat Max like some poor, afflicted individual. We tease him, try our best not to let him get away with stuff, call him on his ridiculous demands (NO, WE ARE NOT GOING TO CALIFORNIA FOR THE WEEKEND!), get frustrated with him, laugh lots with him and love him to bits. In other words, we treat him like any of our children.

Until I had a child with cerebral palsy, I couldn't have imagined this. But now I know: Cerebral palsy is one part of who Max is, not all of him. It is not to be mourned. At times it poses challenges, to be sure, but it is what it is. Max is who he is.

I asked other parents on Facebook what their child with CP has taught them, and this is what they shared.

"My son is first and foremost a 4-year-old boy. He loves picking out his own clothes, playing on the playground, riding a merry-go-round, reading stories, and hanging out with his friends. He likes to dance, he thinks farts are funny, and he's a complete jokester. Because of his CP, he can't walk independently (yet) or verbally communicate (yet), but his diagnosis is not a definition [of who he is]—it just means we do things a little differently."—Camie

"My son, 8 years old, taught me to be patient and do not compare to others. It's OK to do things when you are ready."—Tomomi

"Disability isn't something to be pitied or feared. It is part of the human condition and just IS. My son is 12 and having CP is just part of life."—Cary

"Just because my daughter can't talk doesn't mean she isn't smart!"—Jenn

"I had dreams for my daughter Sarah before she was born and none of them came true. Instead, Sarah showed me how real life and real love are better than dreams. I took care of her every need, but she raised me to be the mother she needed."—Teresa

"There's always more than one way to do something. My daughter's CP has made us so creative in finding adaptations."—Amy

"My son has taught me that having CP doesn't mean suffering from it. Chris is such a happy, loving soul who brightens every room."—Brian

"Presume intelligence, be kind always and believe, especially on the dark days. Keep moving forward. Appreciate the micro progress."—Ivana

"My son has taught me about joy. It is not found in what we have or can do or in others' opinion of us. Joy is found in simple things: a smile a laugh, a hug, even a word."—Stephanie

"Faith may not be able to do everything but she can do waaaaay more than all the doctors predicted. Walking at 15, driving a power chair, horseback riding, painting and earning money for her artwork, swimming...don't accept predictions from anyone!!!"

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