Ryan F. Johnson

True Parent 9

Do We Have to Share Everything?

Big Mother Is Watching

True Book Reviews

Build a Better Parent

How to (Teach Someone to) Ride a Bike

Ask the Parent

Good Advice/Stupid Advice

Getting the Lead Out

Parent to Parent

Late in my second trimester I was hit with the thought, “What if this baby grows up to be someone I don’t like?”

At the time, my worst fear was that my child would turn out to be a drug addict, a religious zealot, or a Republican. My partner and I didn’t want to know if we were having a boy or a girl. We didn’t pick a name or a color for the nursery in advance. It would all be a surprise. So my first big challenge was to trust that I’d be able to conjure up the kind of unconditional love that parenthood demands. I focused on letting go of my fears and expectations, and told myself that my most important job was to support this person in becoming the best “whomever” they were born to be. It never occurred to me that the course of that life—of all our lives—would be profoundly altered in the moments leading up to birth.

The baby—we hastily named him Henry when it was unclear whether he would survive his first hours of life—was born with the umbilical cord tightly wrapped around his neck. He had gone into distress shortly before delivery, wasn’t breathing when he was born, and barely had a pulse. He would spend the next 28 days in the neo-natal intensive care unit (NICU). He had suffered a brain injury due to oxygen deprivation. He was in a coma, required a ventilator, and was having seizures. It would be days before he opened his eyes or we could hold him. We took up residence in the NICU, spending the night if there was an available family room, or making the short trip home over the Fremont Bridge only to return first thing the next morning.

After a month of around-the-clock care at the hospital, we brought him home, set him on the couch still bundled in his car seat, and shared a flash of panic when we realized we were now on our own.

•••

Well, we weren’t exactly on our own. We were in routine contact with a community health nurse, a county case worker, two pediatricians (general and developmental), and a variety of specialists. Brain injuries are unpredictable, so Henry’s doctors were reluctant to give a prognosis—but at six months, he was diagnosed with cerebral palsy. He started Early Intervention, a program for infants and toddlers with disabilities that provides services such as physical therapy (PT), occupational therapy (OT), and speech therapy.

Up until this point I didn’t fully comprehend the term “developmentally delayed.” I thought delayed meant he could catch up, but with the diagnosis, I began to come to terms with the fact that we were looking at a lifelong disability.

I won’t lie—it wasn’t pretty. I was devastated. I felt like I had broken my baby, like I had failed at the first major hurdle of motherhood. I became determined to do everything in my power to make up for it.

Once a week, we drove to the Early Intervention baby group. We also began seeing private therapists for PT, OT, and speech therapy, which required three weekly trips up the hill to the children’s hospital. I bought a white board that hung on our kitchen door and made a daily schedule for care, feeding, and home therapy. I became a disability super mom, compliant with all experts, devoted to the home schedule, doggedly pursuing new research and treatments, and ever vigilant for signs of seizures, fever, aspiration, or any other trouble. As the months went by, undeterred by the fact that Henry’s development was veering further off track from a host of developmental milestones, I persevered. Believing that I was doing everything right, everything I could, every day, was the only thing holding me together.

That’s why I was reluctant to acknowledge that, despite my best efforts, his motor skills were not improving, and he was often unhappy during his various therapy sessions. We were spending more and more time in medical settings and disability world, leaving little time for friends and family, or just enjoying life with our sweet, funny, adorable kid. I might have felt isolated and depressed if I’d had time to feel anything.

•••

When Henry was about two years old I had a rare night off, so I wandered down to Powell’s. I hit the developmental disability section and scanned the shelves for anything that would give me hope. I had made my way through a pile of books detailing a variety of alternative therapies for the “brain-injured child”—hyperbaric oxygen therapy, dynamic proprioceptive correction, Brain Gym, Feldenkrais—to no avail. But this time the book that jumped out at me was Disability Is Natural: Revolutionary Common Sense for Raising Successful Children with Disabilities by Kathie Snow. It was 300-plus pages and clearly self-published. After a cursory glance, I remember thinking either the author was a real Chatty Cathy in dire need of an editor, or this book was going to change my life.

It opened with this quote from the US Developmental Disabilities Assistance and Bill of Rights Act: “Disability is a natural part of the human experience that does not diminish the right of individuals with developmental disabilities to enjoy the opportunity to live independently, enjoy self-determination, make choices, contribute to society, and experience full integration and inclusion in the economic, political, social, cultural, and educational mainstream of American society.”

Tears poured down my face as I read those lines over and over again. For more than two years the focus had been entirely on Henry’s deficits, not his potential, not his rights. As I made my way through the book and Kathie’s story, which in many ways was similar to my own, it began to dawn on me that instead of trying to undo or make up for a twist of fate, that my most important job was still to help my child become the best person he was born to be. I needed to relinquish my superhero cape to become a disability world dropout.

It was remarkably easy to take back control of our lives. I called a meeting with Henry’s physical and occupational therapists. I announced that we were done with weekly therapy, but I needed their help integrating his routine into our daily lives so that it wasn’t a chore and a torment, and that I would call on them as consultants as needed. They were surprisingly supportive. We went back once a year for a neurodevelopmental clinic with the whole team. We stuck with speech therapy because Henry enjoyed it and was making progress with augmentive communication devices.

We spent our newfound free time hanging out with friends and doing regular kid stuff. I found a preschool that welcomed him with open arms, and was able to go back to work almost full time. Instead of going to a weekly Early Intervention group, the therapists came to his preschool and his classmates loved joining in, as well as figuring out inventive ways for him to be a part of everything they did. I went on to follow in Kathie Snow’s footsteps in other ways, enrolling in Partners in Policymaking—an intensive leadership training program for disability advocates—and becoming active in my community when it came to accessibility and inclusion, working with a variety of organizations and agencies, and co-founding a districtwide Special Education PTA.

•••

Earlier I mentioned my worst-case scenario—that my kid would grow up to be someone diametrically opposed to me, something I find almost laughable now. We should all be so lucky that our children survive the treacheries of childhood to make any choices at all, regardless if they’re the ones we would have them make. But let’s be honest, I know that my child with a severe disability represents many of your worst fears. So I want you to know that while I was taken on an unexpected path, one that comes with some difficult challenges, I wouldn’t trade it for the world. On this path, I’ve developed a newfound appreciation for the wonders of human development, ability, and spirit. My beliefs about what constitutes a meaningful life have been challenged and transformed. And I tapped into a reciprocal well of unconditional love that I had never experienced before. Most importantly, I have a kid who wakes up and goes to bed with a smile on his face most days, and knows he is loved for exactly whoever he chooses to be.

Chloe Eudaly is a bookseller, publisher, writer, and rabble-rouser who lives in Portland, Oregon. She’s the owner of Reading Frenzy, the co-founder of the Independent Publishing Resource Center, and is currently running for Portland City Council, Position 4.