Paraphrasing Shakespeare's Friar Lawrence from Romeo and Juliet, he says there is nothing so vile that exists on earth that doesn't has some special good, nor is there anything so good that abusing it will not result in bad. We see examples all the time and as basic as water and fire. Water is needed to sustain life, yet abused one can drown. Even something harmful may in fact have benefits such as fire which can destroy and harm, also keeps us warm and is used for cooking. For the DMD community steroid use may also fall in the latter category.
When I try to rationalize my family's circumstances with DMD I turn to this quote to try to find some good. OK, so it may be a stretch you might say, but all of our lives we try to find the positives that help us keep moving despite the challenges. Hope, trust, peace of mind and decency. Tough to find these in the world of chronic illness, but some positives can be found if we look hard enough.
Aside from the many wonderful families I have met since my sons' diagnosis there is one aspect that I see as Friar Lawrence's "special good" in all that is so vile with DMD. I look at the "gift" I have been given knowing the frailty of my sons' lives and the opportunity I have to make the most of it with them and encourage them to live to their maximum potential. This doesn't change the fact that I mourn the future and things my sons will never do. Despite these feelings I have to accept that every minute we have together needs to count and I'll be damned if I don't give my all to them and for them.
Most people don't know much about my extended family. This isn't unusual. In the DMD community we chat about our immediate family, our children and spouses and we only talk about the rest of our family when they are less than supportive. Let me tell you a bit about mine. I come from a large family. I have four sisters and had two brothers, that's right, had two. A little over twenty years ago my next younger brother who was only twenty-five decided he couldn't deal with all the difficulties in his life and committed suicide. That single act ended so much potential and destroyed so much more. My parents could not handle the grief and eventually divorced. There was much anger, sadness, resentment and guilt among my siblings and me who didn't have an opportunity to say "I'm sorry" or make right some silly infraction with my brother. He wrote no letters, said no goodbye and was gone without warning. My daughter was six months old and it was nine days before Christmas. That left quite an impression on us all. Not a day passes without my thinking of my brother. Based on this incident I realize the things I need to do for my family, especially my sons for whom time is so limited.
What difference is there in losing a child prematurely when there is no warning compared to when there is? Probably not much. When my brother died it took a long time to for me to recover and repair the hole left in my heart. With every loss there is still the same emptiness, anger, sadness and grief that we hope time will diminish. The difference is what is done prior to that point. We cannot take a day for granted any more than other families, yet we are more aware of the stakes. For these reasons I work hard on behalf of my sons and all those living with DMD and try to balance that with being the father they need and expect.
I regularly advocate for more muscular dystrophy research and attend conferences to learn as much about improving care for my sons and all those affected by DMD. My sons spends a lot of time at three different clinics and they see other local specialists each spring and fall because my wife and I believe this is important. I emphasize to my sons the value in participating in as many school activities as they can. My wife and I take them to dances when we are tired and drive them early to school for meetings and my older son, Matthew, to his afternoon volunteer work twice weekly. And now we are exploring ways for our boys to attend college.
When DMD entered my life I paused, if only briefly, but based on other personal circumstances I did not let this stop us from moving forward. Each stage has had its challenges, yet Alice and I sought out families with older sons who shared their wisdom helping us to prepare and maybe avoid some mistakes. We hated the idea of Matthew and Patrick loosing the ability to walk, yet we were ready and saw how instead of it slowing them down they accelerated with regained freedom and exuberance . Not understanding why my sons have progressed so differently is another frustration. Matthew stopped walking at eight and Patrick was thirteen. I keep asking why and what can be done and for my sons it is just the way life is for them.
We have talked lately about older men with DMD for many reasons. When our boys were young, Alice and I were always honest with their questions. We avoided talking about the long term prognosis for obvious reasons hoping research would make the subject obsolete. My curiosity and DMD activities led my sons to explore these topics on their own and while at first troubling I am relieved my sons have a healthy interest in this topic as well. A friend lost a son who was twenty-six three years ago. The boys responded that it was a long life for someone who had DMD. More recently Patrick told us that during a current events class at school the literature they read implied those who had DMD rarely lived beyond their late teens. He has always had a firm focus on standards, so he forced his hand up to rebut that the information was completely wrong.
Matthew will be seventeen in April and Patrick fifteen in July. Each birthday brings a mix of elation and angst. Our sons have less illness than many of their peers, still we know time isn't much of a friend. In the mean time Alice and I insist we have dinner as a family, we don't accept bad behavior from our sons and raise our expectations for them often. Every night after saying our prayers as a family we never fail to tell our sons we love them. I can't say we will never have regrets, but no one will accuse us of not trying. Each day is a gift for us all, knowing that is truly priceless.