Parenting on the Fly
When our children are born and we hold them for the first time, visions of grandeur fill our heads. The first time I held my son, I imagined him quarterbacking the Ravens to victory in the Super Bowl. And when I first held my daughters, I envisioned them as the first female presidents of the United States.
New parents always want the best for their children. They never imagine futures that veer dramatically off course. But that’s exactly what happened to my son on Sept. 9, 2004. That day at Sinai Hospital doctors told us our then-15-month-old, William, had a brain tumor. They called it “big” and said it was located “in a bad spot.”
Some of the best brain surgeons in the world gave William just two months to live. They recommended we put him in hospice and “take lots of pictures.” Luckily we didn’t listen. After a dozen surgeries and a year of brutal hemotherapy, William was cancer-free. Recently, he celebrated seven years in remission.
This isn’t a story about overcoming cancer; this is a story about every day after that.
When you have a child with a life-threatening disease, every decision you make has an immediate consequence. Thankfully, my wife Lori, a nurse, took on that challenge and made the right choices every step of the way. Today, William is a vibrant 9-year-old who enjoys swimming, riding on his grandfather’s Harley and playing with his 6-year-old twin sisters, Marissa and Megan.
While William appears to have won the war against cancer, he still has many more battles ahead.
Medical technology has made great strides in helping cancer patients survive. However, with survival comes a host of challenges — both physical and mental — that can be very daunting.
For William, it means dealing with seizures, learning disabilities, severe loss of hearing, partial blindness and problems with balance that make it difficult to perform typical childhood activities. As parents, we are so proud that our child overcame so much, but it hurts when we watch how he struggles through tasks that his peers — and even his younger siblings — find easy.
It’s heart wrenching, wondering what the future holds for a child with special needs. We’ve come to realize that William likely will live with us the rest of our lives and that his siblings probably will have to help him after we are gone.
At the same time, we are doing all we can to ensure William lives as normal and as independent a life as possible. Part of that means seeking out ways to help him compensate. In fact, as you are reading this we are in Ohio training a service dog that will help William deal with everything from hearing to anxiety to seeking help should he have a seizure.
William’s story is one I share with pride and one I hope will let other parents know that, should their child’s journey go off course, there is still a path to a happy ending.