A Little Bit Perfect

by Michelle Massie

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.

What?

Then came the dizzying cavalcade of "expert" opinions and their dire predictions. If he were lucky, 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.

Struggling under the crushing weight of these frightening prognoses, I found my thoughts going toward more human things: would he be able to ride a bike? Drive? Go to the senior prom? Run naked through the sprinklers? Say, "I love you, mommy?"

I was hurtling through a black void of hurt and confusion so deep that I feared it might permanently consume me. And trying to sort through the crazy miasma of treatments and therapies and doctors and endless options was like feeling my way down a dark hallway.

I once believed that we all get here perfect. All of us. Regardless of what challenges we deal with. At one with Source, always. How could I now rectify this belief system 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 lead 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 nosebleed highs.

Let me tell you about Cole now. At 9 years old, he loves Itzahk Perlman and Gilbert & Sullivan. He loves pirates and firemen. He just got 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 in fourth grade and likes social studies. He's bright and engaging and people love talking with him.

He also uses a wheelchair and a walker and has a service dog.

At first, it 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" and they're flying our family to New York. He's going to be on the Pasadena Ronald McDonald House float in the Tournament of Roses Parade this New Year's Day. He's going to be on the cover of "Kids On Wheels" magazine in an article about disabled kids in the arts. When the magazine photographer shot Cole, he loved the photo so much he put it on his website and is considering submitting it to a gallery in Rome.

That's all the flashy stuff. Cooler still is the every day stuff, like driving him to school one morning and hearing the Emperor's Entrance from The Mikado on the radio and singing along with it together at the top of our lungs. Or the time Cole, at age 5, told Los Angeles Philharmonic Conductor Esa-Pekka Salonen that the Dvorak rehearsal his orchestra had just played was really beautiful, but would have sounded classier if he had been wearing a tie.

And then there are the most brilliant models of unconditional giving. Ilia, Cole's skilled companion dog, was raised by volunteers who loved him, paid for all food and vet care, trained him with 25 commands and then gave him up. Then the trainers at Canine Companions for Independence spent another 6 months teaching the dog to pick up dropped objects, open doors and behave perfectly in public. 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.

During the two years that have since past, we have seen more micro-miracles as Cole and Ilia build their bond.

Often when Cole gets upset, it's very difficult for him to let go of whatever it is that's troubling him. It can sometimes take hours to soothe him. But now, he rolls over and presses his face into Ilia's fur and calms enough for us to talk about whatever's bothering him.

That in itself would be worth the price of admission…but there's more:

When Cole had to be put into casts up to his knees, Ilia was there. When he had to get poked with a needle for blood test, Ilia put his head in his lap. When he was terrified of the loud cast saw, Ilia put his paws up on the table and calmed Cole so fast that the tech asked if Ilia could stay for all of his patients!

In March of 2005, Cole had to have a three-day long EEG to test for seizure activity. 50 itchy electrodes were cemented to his head and he could go no further than the bathroom. We were told not to let him scratch or they would have to start the test over!! Nightmare! When Cole began to cry and itch, we had him scratch Illy instead. And, through the entire three days, morning and night, Ilia stayed on Cole's bed; making the unendurable possible.

The test results were negative.

Just recently, Cole had to start another new physical therapy program with lots of uncomfortable stretching. The therapist arrived at our home, put Cole down on a mat and began to work on him. Ilia, unbidden, trotted over and laid down on the mat beside him. Then he hooked his paw around Cole's arm. When Cole was repositioned, he moved to accommodate him, then re-hooked his paw. The therapist could hardly hold her emotions in check. Ilia never left his side. Cole's spasticity evaporated and he remained calm and loose through the entire session, making it highly successful. Talk about a gift of love.

I've learned from all of this that the micro-miracles can take your breath away and instill awe in your heart just as effectively as the big, parting-the-red-sea ones can.

So do I still hold the intention that Cole will someday be free of his disability? Absolutely. What I have let go of is the outcome. I'm able to do that because in spite of everything, he's the coolest human I've ever been privileged to spend time with.

What, then, is perfection?

I now believe that 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.


Cole at the Rose Parade

Biography Biography: Michelle Massie A graduate of Cal State Northridge, Michelle Massie has spent the last 20 years as a producer in television visual effects. Before that, she worked in broadcast news in the Los Angeles area. She is now a free-lance writer, full time caregiver and advocate for Cole.