Sunday afternoons were special to me as a young boy. Time moved slowly and the only limits were the ends of my imagination fueled by the most recent western I was watching. The good guys wore white hats and men protected women and children from attacks by circling covered wagons. I miss the simplicity of a child’s world and the certainty of solutions that came by following a specific formula.
Like all kids, I wanted to grow up quickly, failing to realize what I had to give up as part of the deal. Every adult had the same warning: “Don’t grow up too fast”. At nine those words didn’t register because I believed driving a car and seeing the world magically happened once I became a “grown up”. No child realizes they have it made lying on the floor watching black and white movies and as an adult we still look for something better and know circling the wagons only works on TV.
As a parent I’ve cautioned my children to enjoy their youth and admonished them about growing up too fast (It’s true, we do become our parents!). I can understand those people who live vicariously through their children trying to relive happier times as an athlete or free spirit. Time marches on, ready or not. Reigning in time takes on greater urgency when your child is diagnosed with a chronic life limiting condition. The clock is scrutinized more closely and our days can either be filled with nonstop activities or we are paralyzed by fear of upsetting the current balance of our family life. Either way, the clock may develop a more sinister face.
Chronic conditions also play more cruel tricks on people beyond the predicted outcomes. Some individuals fare better than the recognized natural history for a particular condition while others may not do as well. It’s hard enough that both my sons are affected by Duchenne muscular dystrophy, but understanding the disparity in progression has challenged me from the moment of their diagnosis. Matthew was noticeably weaker as a young boy. At the time of Matthew’s diagnosis, Patrick was much stronger leading the neurologist to completely rule out the chance he had the disorder (That’s another story.).
Observing Patrick’s physical ability is both encouraging and chilling. In comparison to Matthew, he is stronger and more independent. I appreciate Patrick being able to move himself in bed, flip through the pages of a book, grab and retrieve items in his range and play piano. These activities provide a form of independence that evades many young men with DMD including Matthew. Patrick is still able to shower with little assistance, so I don’t complain about wasting water when he’s in for a long time. He still helps Matthew and I am grateful for the bond they’ve maintained as young men. Interestingly, their relationship has a level hierarchy developed in part by their abilities and needs. The day will come when Patrick is no longer able to perform these tasks, which is always in the back of my mind. There lies the contradiction. As much as I marvel over the things Patrick is still able to do, it can be agonizing contrasting this to Matthew’s very limited ability as well as worrying when he will further lose function.
Patrick wants to drive. Maybe not with the same passion I had at his age, but it’s part of his ‘master plan’ for life. Alice and I emphasized this goal at his transition IEP meetings and to his Vocational Rehabilitation case manager. Unfortunately, like many such things, progress has been slow and I’m concerned an opportunity may be missed. Patrick still has much upper body strength, good reaction and all those hours playing video games probably are helpful. Hand controls for cars are very similar to game controls, so I’m sure there is some benefit. We’re still pushing the process knowing Patrick hasn’t lost interest and still has the ability. Waiting for others to put those pieces together and knowing time can derail this plan is another way this disorder brings angst to our lives.
Despite every effort to make time move more slowly for my sons, it rumbles on without interruption. I appreciate what they are accomplishing. Matthew is doing well as a sophomore in college and Patrick will attend college next fall. I stay focused on those positive aspects and continue to emphasize their setting new goals while the reality of Duchenne is never far away. There are no wagons we can circle to protect our sons from the changes Duchenne brings or from the rapid advance of time. What we can do is help them to be prepared, focus on the future and work together to make their lives better.
One trait I inherited from my father is an enjoyment of clocks. Dad collected a few and I’ve taken over this hobby which is fitting based on how cognizant I am of the passage of time. Life does seem to advance rapidly and more so for families faced with chronic illness like Duchenne. It would be nice to turn back the hands of time. Maybe not back as far as my childhood, but a few years for my sons and for all those who deal with this disorder every day giving them more of the time they need.