Tuesday, December 19, 2017

We would not change our children for the world: This.

"I would not change you for the world, but I will change the world for you." Mom/entrepreneur Amy Wright said that onstage the other night as she accepted CNN's Hero of the Year Award, speaking to her two youngest children who were watching from TV at home. They have Down syndrome. Last year, Amy opened up Bitty & Beau's Coffee in Wilmington, NC, named after them.

I nearly stood up from the couch and cheered. YES, this, a million times.

Amy was driven to start the coffee shop by the fact that some 70 percent of people with disabilities are unemployed; she thought it would bring people together and help others see the ability in disability. She currently employs 40 people with disabilities.

It's so true: I would not change Max for the world. I know this would have been hard for me to understand before I had a child with cerebral palsy, and when I say it I wonder if parents who do not have children with disabilities think that I am not being totally truthful.

Ah, but I am. My child with disabilities is as perfect in my eyes as my other children and his peers. He is every bit as wanted, admired, adored and lovable. This is because I am his mother and he is my child. Parents love their children—it's what parents do, whatever variety of child you get. Contrary to what some might think, parents of children with disabilities do not parent out of pity. We are not modern-day saints. We parent out of l-o-v-e.

I love Max, too, for his unique self, which includes the cerebral palsy. I could not imagine him without it, same as I couldn't imagine auburn-haired Sabrina as a blonde or monkey-boy Ben as a tot who likes to sit quietly and flip through board books. These traits are an integral part of who they are. Max wouldn't be the same guy without his quirks and mannerisms, including the ones that come from the CP—his lumbering gait, the way he calls me "Ohmmmy," the cute way he waves at people, his hand jerkily moving up and down. Years ago, when I started dating Dave , we went out to a diner one night. I don't remember what we were talking about but Dave said "A little bit of this, a little bit of that" as he simultaneously wagged his pointer fingers left and right and I fell for him right then and there.

My son's disabilities don't make me ache for some "perfect" boy. You love someone for who they are, not what they aren't.

Max doesn't sit around wishing for some alternate version of himself, either. He goes about his business, doing his best at school, getting therapy afterward, enjoying weekend activities and programs, visiting fire stations and dreaming of becoming a firefighter, searching for his next great travel adventure, snookering us into buying him electronic goods and taking him out for sushi. See: He is who he is. Nobody in our family gives his cerebral palsy a second thought.

Yes, I have grieved, especially early on in Max's life—but that's been about me, not Max. Society does not set you up to embrace or even understand disability, and I had so much anxiety, doubt and fear. But these feelings have ebbed away as I've raised Max and gotten to know the disability community. Now the occasional pangs of sadness and frustration usually come from other people's perceptions of him—when people treat him like a tragedy or a second-class citizen, when he is excluded from a program, when people cannot see the ability. Oh, and when I deal with the insurance company, since that has sucked away approximately 1.5 years of my life; them, I most definitely would change.

Of course, at times I wish things were easier for him. I wish Max's muscles were a little more relaxed so they didn't stiffen up and wear him out. I hope his speech keeps getting clearer, as he would very much like to verbalize words. When Ben raises his arms to have Max pick him up and Max can't, I have wished that were possible. But then, at times I wish certain things came easier to my other children, too. As their mom, I want them to have a life with few restrictions.

I try to enable all my children as best I can, find work-arounds, push for the support and assets they need to succeed—and in Max's case, be included, period. With him, I have to overcome the obstacles of people's misconceptions, ignorance and closed-mindedness, whether it's persuading a camp director to let Max attend a session even though they usually do not host people with physical disabilities or speaking out against the use of the r-word—the "I will change the world for you" part of Amy Wright's sentiment. As she said toward the end of her speech, "My employees are not broken. Two hundred million people across the world living with an intellectual or developmental disability are not broken. What's broken is the lens through which we view people with disability."   

I do not love my child in spite of his disability, as that would mean a disability is unfortunate. I love him for all of who he is. I would not change him for the world....but I will change the world for him.


  1. If I could take away some of my son's extreme struggles (mainly sensory integration issues) I would. But that would be for him. (But then again, maybe he wouldn't want it - he doesn't know any different).

    But I love his evil eye look; the grin he has when he is pushing his sister's buttons; how he is a fabulous visual learner; he can see 3D special on a flat piece of paper; his eagerness to learn; his excitement when he does; his joy in helping me each morning by making sure my purse, phone and keys are together by the front door.

    Luke is my son, just as surely as Olivia and Ruth are my daughters. All were born in my heart, not under it.

    Thanks for sharing.


Thanks for sharing!

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