As a young boy I traveled each summer with my family from our home in Maine to Ohio to stay with my grandparents on their farm for a few weeks of vacation. The drive was long and boring for my siblings and me. This was long before handheld computer games and portable music and video players. Radio stations were infrequent and my parents’ car only received an AM signal. My siblings and I played cards and tried to identify license plates on cars from as many states as possible keeping score on pieces of lined notebook paper. Occasionally we would fight and to this day I am amazed with my father’s ability to reach back to swat the offending child, never allowing the car to veer from his lane. The only breaks we had from my father’s non-stop driving was when we encountered road construction or the occasional highway accident.
I inherited a disdain for construction from my father while the curiosity associated with viewing a series of damaged cars along the roadside seems to be more ingrained. No matter where I am driving, if there is an accident people slow their cars to gawk at the carnage making me wonder what in our nature drives this desire to witness such horrific scenes. Unfortunately this trait is not limited to vehicular damage and the ancillary destruction. Throughout our lives people dwell on the negatives, whether in their own lives or focusing on others. With life offering so many more pleasant aspects it is a shame that any of us hang on to this peculiarity.
Without question learning my sons have Duchenne Muscular Dystrophy was difficult for my family and me. Upon reflection I describe the experiences as a slow motion train wreck derailing our plans, scattering dreams and later uncoupling my sons’ ability to walk and care for themselves. While family and friends may have been compelled to watch from afar, once we got beyond the initial shock of diagnosis, my wife and I consciously began working to make each day as normal as possible for our family and avoided dwelling on the “late stages” of DMD. At the time of diagnosis it was hard to not read about the prognosis and dire predictions, but we soon decided it best to channel our energies on locating knowledgeable care providers and working to support promising research. Looking at how well my sons are doing in school, their long lists of friends and ability to cope with their condition tells me the choices made so many years ago were correct. Neither of us has been able to completely stop the derailment of the DMD Express, yet our concentration on what can be has proven to be more satisfying than looking on what might have been.
When I am asked for advice by families whose sons have been recently diagnosed with DMD I encourage them to seek proactive doctors and work towards finding ways to make their sons lives successful. To the families in the DMD community it may sound glib, but when people learn my sons have muscular dystrophy and ask how
my family deals with it I reply that those were the cards dealt to us and we must play that hand. It comes down to focusing on the actual child and the possibilities in his life while avoiding thoughts about who he may have been and the losses we grieve. In the most basic of terms each of us is an accident of nature, the result of an assembly of DNA, its products and the various mutations that make us unique. A child who has DMD is no different. Regardless, they can do many things if we let them.
There are some people who think this is an oversimplification. The general public’s attitude is that lives for families caring for someone who has a chronic degenerative disorder are overwhelming and filled with angst and
despair. My rebuttal is that people have more control than they may want to believe. That isn’t to say it is always easy or that there aren’t down days. Yet, starting with small steps and looking more broadly at our son’s life can help us see more of the positives. These boys and young men are capable of accomplishing many things and our job is to encourage them. Often the trick begins with remembering the focus should be upon them and what they can and want to do.
A young man with DMD may never learn to tie a shoe, ride a bike, run or play sports, but does that make him any less a contributing member to his family or community? Of course not. These guys display remarkable ability compensating for the physical aspects of their disability and come up with clever ways to perform many tasks. How is it that they learn the Gower’s maneuver to stand? It wasn’t from watching their parents or unaffected siblings. In the DMD community there are writers, musicians, artists, web developers and IT specialists. Parents and families have an obligation to support each child and help them work towards their dreams and aspirations. We can also learn a lot from one another which helps us in appreciating each other. Some of the characteristics I observe and admire in the young who have DMD who I know are patience, persistence, acceptance and courage. Many are very happy and satisfied with their lives.
In no way am I suggesting that families set aside the desire to improve the outcomes for their sons. We cannot be content with the status quo of clinical care or with the pace of research. There is a difference between working to improve care options or promoting research and, whether intentionally or not, sending a message to our sons that not being fully whole leads us to care less for them. Accepting our sons for who they are while working to impact changes is not a mixed message, yet how it is communicated may give that impression. A parent’s job is never easy.
Alice and I have established traditions with our children as did our parents. Each year we travel to Washington, DC to advocate for federal help in DMD research now taking Matthew and Patrick to speak for themselves. In the
summer we head to central Maine to stay at camp and spend one day visiting the Jackson Laboratories to meet with the scientists to encourage them in their work. It isn’t the farm vacation I took with my parents, but it works for us.
One recent evening after watching Matthew and Patrick playing a video game, arguing one minute and helping each other the next, Alice commented to me that we really have a “normal family”. Like beauty, the interpretation is in the eye of the beholder, but from our perspective we are blessed to have these children and we are proud of their accomplishments. Sure, that train wreck is still in progress, but instead of focusing on the negative we are striving to make each day count. That makes the difference.