Because My Friend had Cerebral Palsy

The other night we were having dinner with my parents, my sister, brother-in-law and their children. My 9-year-old volunteered to pray and she ended it with a heartfelt plea on behalf of her little cousin. She said, “And please let Alan be able to walk. Amen.” As soon as she uttered it, my four-year-old daughter yelled, “He’s not going to walk!” It was an awkward moment on all sides. My tenderhearted oldest daughter desperately wants to see the sad things of the world come untrue. She may have asked for something that is tremendously unlikely in the hope that God will do a miracle. My realist younger daughter was working to understand accept the differences she saw between her cousin and other little children. She responded out of her desire to love and accept him for who he is.

I loved both of their hearts, and thankfully my sister did too. I can understand their conflicting desires and I remember praying my own prayers like that when I was little– prayers for healing and prayers that the world would understand and accept someone I loved who was different.

My sister and I grew up with a neighbor named Rob that had cerebral palsy. He was in a wheelchair and couldn’t communicate verbally. This didn’t stop us from developing a friendship with him. In the morning he would drive his wheelchair over to a neighbor’s front yard and sit in the shade of a big tree where he could survey everything (this was in California where the weather was often nice enough for this to be pleasant). I would run out to find my other neighbor friends and would often stop first to ask him if he had seen anybody out of their houses yet. This was a complicated process of asking him and watching his eyes for a response. Excited, tensed up body, a little nod, up-and-down eye movements meant “yes.” Sometimes he would say a loud, “YEAH!” which was his clearest way to voice agreement. Side-to-side eye movements meant “no.” He also had a large communication binder we could pull out from the back of his wheelchair if things got more complicated, but it’s amazing how much a kid can figure out from yes or no questions when she has endless time on her hands.

Communicating with Rob was complicated, but it was always worth it. There were times I’d just sit in the yard next to him and we’d talk. . . which was mostly me telling stories and him listening and nodding sometimes. He really loved it when I would tell jokes and he was generous with his laughter in spite of my poor delivery.

My favorite interactions with Rob were when all of the neighbor kids (about 10 of us) would play hide-and-seek in the neighborhood. He was in his early twenties at the time, but he always wanted to join in the game. We’d ask if he wanted to play, he’d communicate that he did, and we’d help him navigate his way over to my house across the street. Base would be a post that supported our carport and we’d all hide in the front and back yards of our houses up and down the street. We’d be sure and help Rob hide behind a big shrub that separated our house from the sidewalk so he’d have a clear path on the sidewalk to our driveway where he could tag the base. We would mostly chase each other around, but if everybody made it to base before Rob, you always knew he was fair game. Then he’d be “it” and we’d play a round with some modified rules and he’d be laughing so loudly the whole time he was chasing us. That laugh is still part of the happy soundtrack I can hear in my childhood memories.

Rob was different than other people, but he was “normal” to me. I wasn’t afraid of him. I knew he liked my jokes and was happy when I would come talk to him. My family’s total acceptance of Rob and the way my parents talked about him as a person with a soul, preferences, emotions, and thoughts helped me understand that a person is not defined by the body they inhabit.

Through a lengthy communication process, Rob eventually asked if my parents would take him to church. We didn’t have a vehicle that could transport him, but we lived a few blocks away from our church, so every Sunday morning my mom would get the five of us kids ready and take us to church, while my dad would walk Rob there (all of this happened with Rob’s parents’ blessing). He sat next to our pew every week and would voice his agreement with the sermons he heard. It was my dad’s great honor to be part of a team of men who helped Rob be baptized (yes, dunked) when he requested it.

My childhood memories are full of this man and it’s impossible for me to imagine the trajectory of my life without his influence. I’m a different person because of Rob, because my friend had cerebral palsy.

In elementary school I volunteered to spend my recesses interacting with the kids with the most severe special needs. In college I taught a Sunday School class for a girl with Down Syndrome. Between college semesters I nannied for a girl with a chromosome disorder and learned how to give tube feedings. In my senior year of college I was a teacher’s aid in a resource classroom and decided I wanted to devote my life to the kids who had struggles of all kinds— physical, emotional, mental, behavioral, whatever it might be.

As I watched my kids interact with their little cousin who will have his own challenges in this life, I battle my conflicting emotions. I feel such deep sorrow that his life will be full of difficult struggles. And I’m thankful that I know his life will change the lives of the people who come to know and love him. His life is already having an impact. My kids will be different people because of him— more empathetic, more understanding, and more curious. They will know that a body does not define a person’s worth or capability. They will learn the value of a soul and will not be scared by things that are different.

I prayed for a long time that God would heal Rob’s cerebral palsy. I know now that in response to my prayers, God was changing me instead– making me into a person that wouldn’t judge the quality of someone’s life by their ability to appear normal. And God gave Rob the promise of eternal life and ultimate healing where I know he’ll be running and jumping and hopefully not telling everyone the secrets I entrusted to him as a ten-year-old. I’m excited to see what God will do through this nephew of mine and the life he’s been given. I know my daughter’s prayers will not go unanswered, even if the answer is different than she anticipated.

(To read my sister’s blog about parenting Alan go to: Alan’s Mom.)