Sunday, 4 June 2017

Lessons I Learned About Happiness as a Disability Parent








My husband and I were alone with the doctor in the hospital playroom when she gave us the news about our six month-old baby son. "Never be normal" are the words I recall. I also remember “generalized cerebral atrophy." I felt a strange, out of body sensation as time and space narrowed to a pinpoint. "Esophageal reflux," she continued, listing his challenges as her eyes welled up. "Nothing to keep food down where it belongs. Common in cerebral palsy. Pain similar to heart attack." I stared unblinkingly at the blue stripes on her blouse. I looked down and something red caught my eye. Blood was oozing from the edge of my thumbnail where I had bitten it.  

Suddenly, the news felt like relief. "Now I will be able to feed my child," I thought. Nick had never managed to suck or swallow efficiently, and his efforts to feed were punctuated with gasps and coughs. He spat up most of what he did manage to ingest. In that instant, I became convinced that if I could learn to correct my feeding technique, all would be well.  "I will become an expert," I thought. "I will apply myself to becoming a great mother, and my baby will grow into someone who will be the best at overcoming cerebral palsy."

Passing the ward desk, I noticed the nurses half turned, whispering, their pitying eyes fixed on us. I scooped up Nicholas, deposited him into a stroller and paraded up and down the hospital halls, back straight, eyes fixed ahead.But I was not all right. I wrote in our baby book: "February 22-25, 1989: Nick admitted to hospital. Cat scan, PH probe and digestive barium x-rays. All abnormal…trying to absorb this terrible news."

Over the twenty-eight years of our son Nicholas’s life, I have learned lessons about what it takes to thrive against all odds. These are five building blocks of happiness that I learned over the course of raising our children:

Accept Your Child for Who He or She Is. 

From the moment of Nicholas's diagnosis to the instant we realized that it was time for a wheelchair, we have been forced to accept difficult realities. But accepting that Nick could benefit from assistive devices was part of accepting him as he is. And that was hard, because in some ways, it meant giving up on the dream of him being more able and independent than he was. When it became apparent that Nicholas would never express himself verbally, a conversation with another Mom helped me reframe my thinking. "We don’t do our own dry cleaning or make our own soap," she said, "so what's the matter with a computer helping Nick to speak?" After that, assistive devices became our friends, not our enemies. Nick has taught me to trade my definition of success for his.

Embrace interdependence. 

Striving to be independent and self-reliant is a strong message in our society. And it's a toxic one: An inability to achieve independence is seen as a moral failure of personhood and if we believe that, we don't see our own frailty or that of everyone we love, especially our children. We are meant to be inter-dependent. Nick's network of support includes our family, his paid helpers, his friends and his doctors.  Together, we all help Nick to live a good life on his terms. We rely on each other as any winning team does.

Design your life intentionally. 

A wise friend told me recently that our most vital challenge in contemporary family life is to be intentional. Intentional about asking our children what a good day looks like for them, intentional about asking for what we need, even intentional about being happy instead of miserable. At Nick's neighborhood school, the other children were friendly, but brief in their conversations. One day, when I was volunteering in the classroom, I noticed an impulsive boy with a fiery temper was transformed into a caring, model student when paired with Nick. This young lad became a daily after-school visitor and frequent dinner guest. I learned how to engineer social opportunities for Nicholas by watching for signs that others needed something Nick and our family had to offer.

Know that a good life is possible. 

Everyone has a different idea of what they need to be happy. In our family, we began by asking ourselves, "Given our realities, what is a life that we value and how can we create it?" For me, this meant learning to be mindful and grateful at home, but to begin planning for a retirement from giving full-time care to our son. Living in the moment gave me joy, but planning my own future gave me hope.

Stop time with special time. 

When Nicholas was young, he did a kind of non-directive communication therapy called "Special Time." During the hour, the therapist did not speak herself, except to reflect back to Nick what she saw him do and what it might mean. It was an hour of intense intimacy and heightened listening. Special Time had many communication benefits for Nicholas, but it had benefits for me, too. I learned the value of stopping time in order to listen intently and exclusively to those I love. Even ten minutes a day of special time with a son, daughter or spouse enriches family life.


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