“Why are we doing this MRI?” the anesthesiologist asks.
“To figure out why he has hypotonia,” I say.
“Does anyone think he could have a mitochondrial disorder? Because anesthesia carries significant risks if he does.”
“No, everyone thinks he has cerebral palsy.”
“Oh,” the anesthesiologist says, then turns to me and pauses. “Are you in the medical field?”
No, I’m not in the medical field. I’m a lawyer-turned-magazine editor, and this is the second time in May 2005 I’ve had to answer questions about whether it’s safe to sedate my 11-month-old for a brain MRI. I feel unprepared for this, the confirmation that my second child has permanent brain damage that will affect his ability to walk, speak and use his hands.
Two hours later, my son is sleeping off the anesthetic, and I’m wishing I’d never heard the term “pediatric intensive care unit.” I go into the bathroom and notice an original drawing on the wall, donated by a pair of major Stanford benefactors. Their names grace buildings and programs, but they have a reputation for making smaller gifts, too: undergraduate Shakespeare outings, wildflower seeds to plant in traffic medians — and, apparently, art in unlikely places where people most need to see it. I’m touched by how fine-grained their generosity is. As I view the drawing, I take a couple of deep breaths.
I had been looking for an instruction manual. My kid has the most common childhood physical disability — the prevalence is 3 in 1,000 — but there was no comprehensive summary of the services we should pursue and the additional risks we should assess. I had appointments with three different public agencies, but I couldn’t tell you how, or if, they worked together. I had a tote bag of paperwork — reports, referrals and insurance denials — and a billing specialist on speed dial. And I came to think that would be it. I’d have to fight for every morsel of help my son needed, feeling indignant on behalf of families less well-equipped to navigate this patchwork system.
I did not anticipate the love.
First, an occupational therapist gathered my baby into her arms. In one hour, she assessed his needs and our family habits, and wrote out a three-page list of exercises for us to do. Then she asked us if we could come back two days hence, even though he was entitled only to weekly appointments. She wanted to sew him a tiny pair of hand splints. She just needed to know what color.
I felt the same embrace from nearly everyone who worked with him. The speech therapist who had to hand him over to the school district at age 3, and couldn’t call me to debrief her final session because she was crying so hard. The first-grade teacher who tried to transfer to second grade, just so she could watch over him for another year. The pediatrician who sat shoulder to shoulder with me while we phrased justifications for durable medical equipment that would pass insurance muster. The fifth-grade teacher who wrote to my son, at the end of the year, “Thank you for teaching me.” The classroom aide who stayed by his side for nine years, from preschool through sixth grade, tweaking everything — his desk, his pencil case, his lunchbox — so he could access them more independently. (She’s not accompanying him to the hormonal milieu of junior high, though. We all have our limits.)
The physical therapist who named her son after mine.
My son has in his corner 12 physical therapists, nine speech-language pathologists, eight occupational therapists, seven doctors, six classroom aides, four assistive-technology consultants, three resource teachers, two adaptive swim instructors, two yogis, one myofascial release therapist, one farmer and all of the children’s librarians at the Mountain View Public Library.
But for his disability, we would never have gotten to know most of these remarkable people. I tend to focus on big change — advocating for and communicating with as many people as possible. They focus on individual potential. The county therapists and I have developed a symbiotic relationship: They refine my son’s gait and help him figure out how to tie his shoes; I lead legislative letter-writing campaigns to protect their program from budget cuts.
If I could rub a magic lamp, I’d enable my son to sing in musicals and run around the bases and shade his drawings with colored pencils — and so would he. As that first occupational therapist said to me, “We’ll try to make him perfect, and if we can’t, we’ll work with what we’ve got.” When I watch them work with what they’ve got — which is pretty close to perfect, in its own way — I am grateful to have this window into humanity, to witness how devoted and caring people can be.
My son’s therapists used to encourage his imagination. When he selected a ball and bat to play with, they’d ask him if he wanted to play baseball when he grew up. When he displayed his appetite for all things food-related, they’d suggest he could be a chef. I winced — I’m not big on obscuring the truth — but I also saw beauty in their approach. He’d realize soon enough how his limited speed and dexterity would circumscribe his occupational choice. For the moment, we’d let him dream.
These are the people who see possibility. They see improvement. (If you ever want to observe gradations of movement that look infinitesimal to the untrained eye, hang out with a pediatric occupational therapist sometime.) They see hope.
Two years ago, I was talking with one of my son’s team members, an augmentative communication consultant who worked exclusively with children who had cerebral palsy and significantly impaired speech. She had just watched one of her former clients graduate from UC-Berkeley. “I don’t get to go to many college graduations,” she said. Her eyes filled with tears as she glanced over toward my son’s fourth-grade classroom. “I was thinking, his will be next.”