Nick is looking to get a job, she continues, and recently created and delivered a resume to his local community ice-hockey arena; he's hoping to be hired for a part-time volunteer job. "This particular dream is still a work in progress, but he's determined to succeed," says Donna. She is married to James Wright, a retired career diplomat, and is also mom to Natalie.
I was alone with the doctor in the hospital playroom when she gave me the news about our six month-old baby son. "Never be normal" are the words I recall. I also remember “generalized cerebral atrophy." Pea brain, I wondered? "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.
"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. Suddenly, I was 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 perfectly perfect."
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-six 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 I’ve learned along our rocky path: