I was raised alongside an older a sister with cerebral palsy. While unwittingly being trained to have a child with a disability, there is really no way to be prepared for it.
That said, my parents taught me that a disability shouldn’t prevent you from doing everything you can to live a ‘normal’ life, and we did. Jamie, my sister, went swimming with us. She had chores. She went through formal therapy in addition to my parents seeking out alternative therapies of every sort. She had countless surgeries, once being in a hospital bed in our living room for six months. But, with significant disabilities, she lived on her own for 30 years. She needed aids for sure, but she was resilient and even stubborn. She lobbied the Minnesota legislature on behalf of the disabled. She earned a two-year degree. She did wheelchair square dancing and even went cross country skiing. Most importantly I think, she could laugh at herself.
Now, I have a son who was severely disabled after a trucker fell asleep at the wheel killing my wife and injuring both of our boys. The lessons I learned as a child caring for my sister Jamie are now the knowledge I use to be a father for Matthew. After six months in the Kennedy Krieger Institute in Baltimore he could only manage to move his left index finger. He was tube fed, had a trach and was in diapers. We had to push to get him into intense outpatient therapy as he had ‘plateaued.’
I knew that therapy was not guaranteed to make a significant difference in his recovery, but I also knew that no therapy would kill both of us.
After nearly a year of five-day a week, 6-hour a day physical, occupational and speech therapy, Matthew was walking with maximum assistance, swallowing, beginning to talk and using his non dominant left hand.
Now, nine years later, while wheelchair dependent with aphasia and neurogenic bladder, Matthew goes to the gym three days a week, does yoga two days a week, equine therapy once a week, art classes for three hours once a week; he volunteers at the Maryland Zoo several hours a week, goes to movies, and plays the Xbox with the new Microsoft adaptive controller.
We actually like going to the grocery store. We go out to eat, visit the book store, he plays with his nephew and we ride our 11-foot long tandem, recumbent, e-assist bike. And now I know, all of it, even the mundane, all of it, is therapy for him.
Matthew’s disabilities break my heart every minute of every day. I don’t know how much of it is wrapped up in the grief of losing my wife Susan in that crash. I don’t know if it’s because he was a ‘normally’ developing child for 12 years. I don’t know if my experience is much different than my parent’s when their daughter’s disability revealed itself over 18 months of missed developmental milestones.
I grew up around families with disabled children and am now meeting countless new friends in the same boat I find myself. These families are tough, resilient, relentless in caring for their children. They overcome obstacles that most families can’t even imagine, and usually, without the resources they really need.
I am lucky in that we have the resources we need for Matthew, but it still isn’t easy. We love our children, disabled or not, and just want what’s best for them…but part of that, especially those who can’t live a ‘normal’ life, is the therapy of everyday life.
So, to all of the warrior parents out there providing everything they can for their kids, I encourage you to keep your head high and continue to live your life full of activities and experiences, from the mundane to the extraordinary.
Ed Slattery lives with his son Matthew outside of Baltimore, Maryland. The family’s story is the subject of a new book by award-winning investigative journalist Brian Kuebler titled, The Long Blink: The True Story of Trauma, Forgiveness and One Man’s Fight for Safer Roads, which is available wherever books are sold.