I called my mother the other day to clarify plans she had been making for a family get together. Unfortunately when my family makes plans they usually forget much of our circumstances and leave common sense out. So, to avoid the pitfalls I typically will intervene to ensure considerations have been made for accessibility or that we can fit the activity into our schedule.
I often wonder how much my family actually absorbs about life for Matthew and Patrick. Speaking with my mother that day the topic turned to the boys and how family activities must always be held at our home as no one else has an accessible house. I told her that was just the way it was and not to make a big deal about it. Her next comment was that I had no idea how she agonizes daily about my sons for what my sons are unable to do. My response was not what she expected. I told her while Matthew and Patrick may need empathy, they do not need sympathy. Even you may disagree, but that is how I am raising them and how I look at life. A young man with DMD is truly capable of living a remarkable life despite his physical limitations.
Every day we have is a gift. I've commented before that I am grateful we didn't know early about the boys having DMD. This gave Alice and me an opportunity to push the boys more than we probably might have done otherwise. This is so much more important today than ever. Matthew and Patrick cannot walk and need assistance with most activities of daily living, still they are more involved than a majority of their peers from school. They may not see adulthood, but that won't prevent them from living a full life. I can't foretell the future and always hope for a few more years while we live those we are given.
Of course I would rather have the typical family struggles of balancing sports, academics and social activities. We don't have that luxury, so instead we make other choices. And Matthew and Patrick also have choices. The friends they choose, clubs they join and classes they take provide them an expansion of a more likely isolated universe. One of my favorite expression is there are two kinds of people, those who find solutions to problems and those who find problems in solutions. I want to be the the former and I know my sons also think this way. I read where some boys who have DMD play hockey, others are DJs and some write books. Even for our sons there are opportunities. We can spend our days worrying about what they can and cannot do or we can do something about it.
The week before Christmas Matthew's school held its winter concert for the school Chamber Chorus and Concert Choir. This was held in the school auditorium. The performances were very exceptional, yet fewer than half of the students' parents attended. I was disappointed for those student who had no family to watch them perform. These young men and women poured their hearts into singing and had no family recognition of their work. The next evening Alice and I hosted eighteen high school Chamber Chorus students and their teacher for their Christmas party. I wish you could have been here. Having this diverse group sing, joke, exchange gifts and just be together was wonderful. Being at our home and close enough to hear individual voices as the kids sang was amazing. I heard Matthew harmonize and sing his parts instead of him being lost in the larger group. He is usually very quiet, but when singing he gives his all. I also watched him interact with his peers while Matthew seemed to forget we were around. These candid moments tell me a boy who has DMD can be part of the "crowd".
This summer Alice and I talked about Matthew working. I had my first "real job" at fifteen having delivered newspapers and mowed lawns for many years before. Yard work and many part time student jobs are out of the question, but I figured there has to be something he can do. I thought of many places before calling the director for Senator Collins' local business office. He graciously offered to interview Matthew and talk with us about what he might do in the office. At the meeting we agreed to try it out and be honest with each other if things didn't work. In July Matthew started taking on tasks such as going through newspapers and watching the previous evenings news to highlight stories the office sends to the Washington, DC office. He spends two days each week in the office helping as much as he is able. He receives no salary, which we understood from the beginning, with the experience and being around the college age staff being enough compensation for his efforts (Alice and I believe Matthew is building social skills interacting with the interns and a great opportunity.).
When Matthew and Patrick were diagnosed with DMD we never considered they would attend college. That has changed and I suggest families of boys who have DMD begin to plan for this for their sons. Matthew is a sophomore in high school and he is beginning to look at where he might go next. Realistically we have to consider his endurance and other practical concerns, but if he is capable he will attend. Patrick is much stronger compared to Matthew, so he might be more independent at that age. Time will tell. When my sons were first diagnosed and I was trying to cope with the grief I had thoughts of protecting them and keeping them home forever. I think we are all happier taking the route we did.
My favorite American poet Robert Frost wrote "The Road Not Taken" and I included the final verse:
I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I—
I took the one less traveled by,
And that has made all the difference.
To me this says the choices we make in life are what makes the differences between ordinary and remarkable. For all those affected by DMD I hope the choices will always be remarkable.