Cerebral palsy. Cole has cerebral palsy. I blinked at the doctor in a daze. This beautiful, gurgling, cooing, cherub-cheeked baby in my arms was flawed. Damaged. No longer perfect.
Then came the dizzying cavalcade of “expert” opinions and their dire predictions. My son would spend the rest of his life with braces and crutches. He would not speak. He would be of “diminished mental capacity”. He might have vision problems. He might have learning problems.
I once believed that we all get here perfect, regardless of what challenges we deal with. How could I now rectify this belief when faced with such utter contradiction? My son was not perfect, far from it. What the hell was going on?
What has happened is that through 9 years of therapies, doctors and specialists, my son has led me on an accidental spiritual journey. I’ve gone from trying to fix to learning to surrender. From trying to change the earth’s rotation to finding bliss in the micro-miracles. To accept that while you’ll have crushing lows, you’ll also have nose-bleed highs.
Let me tell you about Cole now. At 10 years old, he loves Itzahk Perlman and Gilbert & Sullivan. He loves pirates and firemen. He has his yellow belt in karate and performs weekly in his theater class. He won a blue ribbon in the Special Olympics horse show. He’s a bright fifth grade who likes social studies.
He also uses a wheelchair and a walker and has a service dog.
At first, that doesn’t sound perfect.
But, ironically, it’s because of his disability that we have experienced so many brilliant things we never would have if he were a typically developing child.
He is now the voice for the universally accessible playground, Shane’s Inspiration. He was chosen by the BBC to participate in a show called “My Life As A Child”. He was on the Pasadena Ronald McDonald House float in the Tournament of Roses Parade this New Year’s Day. He was on the cover of “Kids On Wheels” magazine in an article about disabled kids in the arts.
And then there are the most profound experiences of unconditional giving. Ilia, Cole’s skilled companion dog, was raised by volunteers. Then, the trainers at Canine Companions for Independence spent another 6 months teaching him advanced skills. And then, (and I still can’t believe this) after two years of training and love, they give you this dog. They bring you to the campus for two weeks, let you stay for nothing and then… give you this dog. Free. Really. Graduation day, Ilia’s puppy raisers flew in from Texas and presented us with the leash. It was like standing under a love tsunami, holding your breath and staring up incredulously until it simply sweeps you away.
So what, then, is perfection?
This, I believe: In order to see perfection, we need to change our perception of it.
And you can easily see that the moment you look at Cole, my perfect son.
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