My adult son Walker has a genetic disease called Sanfilippo Syndrome, which causes progressive brain damage. When he was little, Walker’s issues were minimal, and the disease is rare, so he wasn’t diagnosed until he was nine years old. When he was a preschooler, Walker’s biggest problem was a speech delay. At the age of three, we discovered he had a hearing loss and he was fitted with his first set of hearing aids.
Shortly after that, I met a friend for coffee at Borders Books. I told her I was glad to discover the hearing loss, because it offered an explanation for his speech delay and I didn’t think I could handle raising a child with an intellectual disability. “Yes,” she acknowledged, “but you would.”
Walker’s intelligence peaked in elementary school and then began to decline. Our ignorance of his condition probably helped us push him to be the best he could be, rather than to throw in the towel. His loving father enabled him to be a Cub Scout. I taught him to read. He played in a special needs soccer league. These days Walker’s needs are severe. He has lost his language and we are working to ensure he remains ambulatory for as long as possible. People often tell me they couldn’t do what I do. My answer to them is, “yes, but you would.”
If I’ve grown wings from being Walker’s mother, they are tattered wings. The experience has brought its gifts, however. It’s required me to strip away what is superfluous, because there simply isn’t time to do otherwise. I have both received and offered profound acts of compassion.
I look back to that day in Borders. The woman I was then could not have raised a child with special needs, but the woman I am today did.