Feeling alone
Jonathan came with me when he could, but as the family breadwinner, most of the time he had to work. As supportive as our family and friends were, most of them had jobs and other responsibilities, too. So, more often than not, I spent long hours alone with Dylan at Sick Kids. I came to dread those visits -- the sterile corridors, the agonizing, four-hour stretches in the waiting room and the clenched, fear-filled faces of the other families.
The constant pressure was dragging me down. By spring I had hit a new low, sunk deep in misery. Some days I didn't want to get out of bed. I couldn't stop crying. I was drowning in tears, choking on helplessness. I got up every day and went through the motions of life -- shuttling the kids around, making lunches, caring for Dylan -- but I felt so helpless and so hopeless.
A glimmer of hope
One morning, in an effort to allay the boredom of the waiting room, I wandered into the Sick Kids library. I wanted something -- anything -- to take my mind off things. I literally pulled the first book that I touched off the shelf. Ironically, it was called What to Do About Your Brain Injured Child by Glenn Doman. The book was based on a therapy program at the Institutes for the Achievement of Human Potential in Philadelphia, a nonprofit educational organization. I started reading it and for the first time I didn't want the nurse to call Dylan's name.
Based on the premise that you can train other parts of the brain to compensate for an injury -- essentially rewire it -- the book was full of practical ideas for an intensive therapy program of auditory, tactile, visual and physical stimulation. I knew nothing about the book or the institute, but it just felt right to me. In my darkest moments of despair, when I didn't think I could be brave and strong for another moment, there was a beacon of hope. In a heartbeat, I felt like I went from powerless to powerful: we had finally found something that we could do to help Dylan.
A new regimen for Dylan
A few months later, Jonathan and I went to the Institutes for the Achievement of Human Potential for evaluation, training and lectures based on the book. The doctors there designed a therapy program just for Dylan based on his unique abilities and injuries. Since then, we've been back three times to update the program. We have converted one bedroom in our house into a therapy room (Dylan gets therapy six hours a day, seven days a week). It's filled with ramps and gym equipment, projectors, flash cards, a massage table and audio stimulators. There's even a custom-designed apparatus that suspends Dylan from the ceiling like an acrobat to help improve his balance, equilibrium and leg strength.
Dylan needs other monitoring, too. He eats a healthy balanced diet with no sugars or refined foods, and we record such things as the number of steps he takes. (This information will help shape the next stages of his therapy.)
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