On September 8, 1998, my twelve-year-old son, Anthony, suffered a severe brain injury due to a lack of oxygen during resuscitation from cardiac arrest. Wolf Parkinson White Syndrome, a rare and undetected condition, had caused Anthony’s heart to stop. A lack of oxygen to his brain during resuscitation left him in a coma for many long and anxious months.
Never would I have foreseen such a tragedy. At forty-two years old, my life was on track. My wife, Linda, and I had our own thriving small business. Both Anthony and his younger sister, Alex, were happy, healthy and doing well in school. We had a beautiful home in a nice neighborhood. I had everything a man could want.
On that life-changing day in September, Anthony was air-cared to Children’s Hospital where he stayed for the next three months. When he came home, he was still in a coma, required nursing and was on a feeding pump twenty-four hours a day.
Every aspect of our lives changed overnight. Linda and I immediately understood we’d have to assume responsibilities that we hadn’t had previously and were overwhelmed by the sheer magnitude of all we had to do and adjust to. We were laser focused on all aspects of Anthony’s care, on keeping our business and on ensuring that our daughter had a semblance of normalcy.
We became immersed in Anthony’s schedule of therapies, medications, and medical care appointments. We learned how to navigate the insurance process, how to deal with a constant stream of strange people in our home, and how to properly care for a chronically ill child twenty-four hours a day.
Somehow we managed, but the quality of life we had known was gone. Life balance in the throes of tragedy does not exist. Our family was dealing with so much loss — of Anthony, our time, our energy, our sleep! And work, in one form or another, was all we did in our waking hours.
One day in February, I had had enough of the limits that Anthony’s bed-ridden status had imposed upon all of us. I decided it was time to have some fun, like we would have in our prior lives.
The last six months had been anything but fun, and formerly Anthony had been like any twelve-year-old boy. He had lived to have fun. I decided that we would take him outside in the snow. No small task, but with a little teamwork we bundled him up and pushed his wheelchair out onto the front porch. Linda, Jeni and I then picked him up, carried him down the two steps and placed him in a large inflated inner-tube. Well seated, his rear in the hole of the tube, he couldn’t fall out.
The front yard sloped just a little — just enough for the tube to glide easily into the adjoining yard. Using the towrope, I pulled Anthony down the small hill. The ride lasted all of three seconds but at the end, as I turned to look at him, I was elated to see him smiling. Linda took pictures of his snow-covered woolen hat and pink cheeks and the first smile we had seen from our son in months.
Anthony’s reaction motivated me. I hadn’t seen him smile since the day we transferred from Cardiac Care to Rehab and his response gave me hope. Even though his face had again taken on its usual vacant look, he seemed to be doing fine and I was sure he needed to have some fun.
This time, we would change the ride up a little. After loading Anthony in front of me onto a long yellow plastic sled, Linda, Jeni and the girls gave us a shove. Two seconds later we were at the bottom of the hill. When I looked to see how Anthony was doing, he was grinning ear to ear. We did it again. And again. Each time, it was obvious that Anthony was having a ball. Each time, we all watched his face change from its expressionless mask into one of delight.
That day we learned that, even if we couldn’t “fix” Anthony, we could adapt. That day we figured out how to create joy again. The once simple activity of sled riding had brought laughter and smiles to faces that had known nothing but pain and sadness for the past six months.
Linda and I are both convinced that this event helped us recognize that we could still have fun together as a family and these times were important and impacted each of us. In the end, it is this event that helped us realize we would survive and grow as a family, but we had to make room — for fun.
Anthony is now twenty-four years old, a grown man but still dependant on us for everything and confined to a wheelchair — so we don’t do much sledding anymore. But the lessons learned that snowy day changed forever not only our definition of “fun,” but also gave us a real understanding of its important purpose. I have come to see that it isn’t the activity or the place that matters to Anthony. It is the one-on-one time spent with me that he values. The adoring expression on his face tells me that he doesn’t care where we are or what we are doing. He just loves hanging out together, just the two of us, sitting side-by-side on a Sunday afternoon, watching the Bengals football game and eating hotdogs.
Tony Cole and his wife, Linda, wrote the book RESURRECTING ANTHONY: A True Story of Courage & Destination — from which this article was adapted. He is also the president and CEO of the Anthony Cole Training Group. His lifelong focus has been on helping people and organizations achieve their personal best. Read Tony’s blog or learn more about the book.