Lessons from Max
"He's Not Normal"
When my son, Max, was born and his doctors discovered brain damage, they told me he could have cerebral palsy and mental retardation, and that he might never walk or talk. So when he came home from the pediatric intensive-care unit two weeks later, I began watching him for the tiniest sign that something was wrong. Nothing escaped my eagle eye: Was he staring blankly into space or was he just mesmerized by the ceiling light? I couldn't call his doctor with every single "He's not normal" worry, so instead, I began comparing Max with other babies.
Uh-oh: Other Baby at the restaurant is able to hold a rattle and shake it. Max can't. Uh-oh: Other Baby at the mall is making cute cooing sounds. Max isn't. Uh-oh: Other Baby at the park is pointing at things he wants. Not Max. The comparisons ran like ticker tape through my head, mercilessly unstoppable.
I've always been a detail-obsessed person. It's why I'm the one who pays the bills in my marriage. It's why, as I gazed at our freshly painted porch the other day, I instantly found the spot the painter smudged. Being detail-oriented is something you like to have on your resume, but it is a nightmare when you have a challenged child. You not only notice everything, you can't stop yourself from looking. At night, I'd thumb through books on a baby's first year, reading the same chapters repeatedly in disbelief that Max was failing to do the things he should have been doing by this age. During the day, I'd check out child-development Web sites and read them hungrily, grateful if Max was behaving in any way close to the way he was "supposed" to. Often, the information would leave me heaving with sobs -- big, fat tears dripping onto my keyboard.
It didn't help that trading baby accomplishments is the currency of motherhood. "Is Max walking yet?" a colleague asked me one day, completely unaware of how devastating her question was; she'd had her baby around the same time Max was born. To keep my composure, I learned to respond brightly and briefly to these inquiries: "Nope! Not yet!" became my standard reply.
Birthday parties were especially painful -- they offered up a whole roomful of kids with whom I could compare Max. That stretch of first birthdays was particularly awful. At 12 months, Max was barely able to sit up, couldn't feed himself or hold a bottle, and made no sounds. I usually sat out these celebrations in a living-room corner, holding my son tightly, as I observed what the other kids were up to: toddling or crawling at a rapid clip, babbling, shoving cookies into their little mouths. I'd leave every party frustrated, upset, and angry at the world. Comparing Max with normally developing children was one kind of torture I invented for myself; comparing him with other challenged kids was another. Would Max someday be in a wheelchair, like the teenage boy I saw at the physical-therapy center? Would he drool constantly, like that little girl who had the doctor's appointment after us? Would Max not be able to respond to his name? The comparisons grew more and more irrational. One Saturday, at a sandwich shop with my husband, I watched intently as a mentally retarded man put together the turkey sandwich I'd ordered. Is this, I wondered, what Max is destined for? Would Max be able to hold down a job or live on his own? The thing is, even doctors didn't know what the future held for Max; it was too early to tell. And that's what made life so damn hard.
I usually kept my compare-a-thons to myself. My husband, dealing with grief in his own way -- namely, denial -- didn't want to hear how Max might be different from other kids. Sometimes, I did talk to friends about what their kids were up to, but not too often; I didn't want them to think I was jealous, even though I secretly was.
As Max grew older, it became more and more obvious to me that he wasn't like other kids. When he was 2, I took him to a toddler music class. As the other kids jangled bells and pranced around, I tried not to lose heart over the fact that Max was just crawling and still couldn't hold a drumstick. Keeping my chin up wasn't easy; not one of the other mothers in the class said hello to me that day. Mostly, they averted their eyes. Was it because Max was different from their kids? Defective? I felt so alone.
His Own Way
Then I had another baby: a completely healthy child who hit all of her milestones on time. One Sunday morning as our family lay in bed -- my daughter Sabrina was 8 months old, and Max almost 3 -- I watched as she waved a rattle, then I winced as Max struggled to grasp a small ball. My husband noticed my expression and said, softly, "Honey, stop."
I knew I had to. The truth was that Max would do things at his pace and in his own way. Comparing him with other children only made me severely anxious about his future, and did Max zero good. Plus, I was spending so much time observing other kids that I wasn't fully enjoying Max: his beautiful grin; his perseverance to keep at a task, no matter how hard it was for him; the way he'd stare so intensely when I read his favorite book, The Wheels on the Bus; his adorable fascination with peekaboo. Focusing on what he wasn't able to do only diminished all that there was to love about Max.
Max is 3 as I write this. He's just as smiley as ever. He makes sounds and knows several hand signs. He listens and understands when we ask him if he'd like to go outside to play or sit down to read a book. He loves to kiss his little sister. And although he has cerebral palsy, he's walking.
Sometimes I still compare him with other kids, especially at birthday parties. Yet when I'm at his special-needs school, I compare him in a different way: Max can walk without braces; Other Child can't. Max can do high fives; Other Child can't. This isn't a mean-spirited comparison at all: I am just in awe of how far he's come. Ultimately, celebrating Max's accomplishments is the best therapy for me. There's nothing like it when he gives me a big hug. The reality of his warm, happy little body yanks my mind back to the child in front of my eyes, not the child I hope he'll be.
From The Elephant in the Playroom: Ordinary Parents Write Intimately and Honestly About the Extraordinary Highs and Heartbreaking Lows of Raising Kids with Special Needs, edited by Denise Brodey and published by Hudson Street Press, 2007.
Copyright © 2007. Reprinted with permission from the July 2007 issue of Parents magazine.