There some days when I think that my life is just not normal. When I start thinking this way I really need to remind myself that normal is a relative term. How a person deals with life is really defined by personal circumstances of their past and present life experiences intertwined.
My son was diagnosed on December 31, 1997 with Duchenne Muscular Dystrophy. Since that day I have come across people that have asked me how I deal with my son, work a full time job, advocate for Duchenne Muscular Dystrophy to our Congressional Representatives in Washington DC and serve on the Board of Directors for Parent Project Muscular Dystrophy.
My answer is usually something like; “I just do it and don’t really think about it” or “I need to make a difference for my son and all families affected with Duchenne Muscular Dystrophy”.
I have always wondered why people ask me this question, why people appear to be awed by the things I do. I have never believed that I was all that smart or extraordinary. I grew up in a very affluent town in NH, but my family was not affluent at all. My friends growing up were the brightest kids in the class. I got OK grades; nothing stellar and science was not one of my strong points. Having a son with Duchenne really scared me. There weren’t any guidelines for a standard of care, like there are today. I needed to become versed in medical and scientific terms and concepts that I have trouble pronouncing, let alone understand. My husband I have always been on the cutting edge regarding our son’s care. We have never accepted the status quo of care provided to us locally. We have endeavored to seek out the experts in the Duchenne field to obtain the best care possible for our son.
I recently reconnected with some of my high school friends. One of them said: “I can’t believe all that you do”, I wouldn’t know where to start.” Another one said: “I always knew that you could do anything you set your mind on.” This discussion caused me to analyze why my normal is so different from most.
There were major things that happened in my life that stand out. My mother had breast cancer, when I was 12. She had one breast removed; she overcame breast cancer, to later become the admired and respected historian of the Manchester NH Historic Association until her death in 1999. My father developed terminal lung cancer while I was in high school. The summer prior to my senior year in high school I helped my mother care for my dying father, so she could still go to work. My brother’s mother- in-law had health issues, yet despite it all, she always tried to look her best, enjoyed life and never gave up fighting her health issues. In college I was able to obtain an internship in my NH Congressman’s Washington, DC office. This gave me an inside view of how congress is run. Washington DC is really run by the smart and energetic 25 year olds that comprise the staff of both the Congressional and Senate offices. My lobbying efforts for Duchenne have resulted in meeting and building relationships with these smart and energetic people, which I wouldn’t have met otherwise.
All these experiences have helped me deal with the ups and downs of having a son with Duchenne and allowed me to face the adversity head on. Do I wish Duchenne didn’t come into my life, of course I do. All the families dealing with Duchenne wishes they didn’t. On the other hand, my son wouldn’t be the same person he is today, and my husband and I wouldn’t have gotten to spend as much time with our son as we have. We have made it a point to have our son do things and see things that a lot of kids his age wouldn’t experience. His experiences include seeing an active volcano and sticking his walking stick into the slow moving lava in Hawaii; seeing a heard of wild buffalo crossing the road in Wyoming. Our next vacation will be to Florida, we hope to take an airboat ride through the Everglades and witness the Mexican Bat Colony and the University in Gainesville. All and all I wouldn’t trade my normal for someone else’s normal.