When my wife and I learned my sons had Duchenne Muscular Dystrophy it was like someone threw a wrench into our world. The questions came faster than the answers. For example, how are we supposed to go to work, breath or resist the urge to pull our sons out of school and just hold them? Well, as many of you know there are no answers others can provide. All truths must come from within based on who we are.

So, how do families learn to cope with a diagnosis like DMD and avoid going over the deep end? I think we all have a key, yet what works for me is different for others. At night I have the same dream. When I go into Matthew and Patrick's room to turn Matthew over I hope beyond all reason there will be no lift, no power chairs, no cough assist or Bi-Pap. Reality sets in and turn my son over so he is able to sleep again. In the morning I remember these thoughts and think how stupid I've been and need to get back into the real world. For me this world is being involved. I raise money for research, participate on a National Institutes of Health Steering Committee, help other parents find their way though this murky sea and understand how to work with their school and I scan research reports for the hope that one day this disorder will cease to dominate people's lives. I speak at my sons' schools and e-mail families and post information I hope will help a mom or dad dealing with a specific situation related to DMD.

Is my way right for every mom or dad? Of course not. What makes me "tick" is not the same for others. I speak with parents who hope their spouse would be as involved or lay off the computer for a while. I can't imagine what my wife thinks with the hours I devote to this subject, yet we learned early that coping for me is much different than what works for her. An example to illustrate our differences can be seen when we attend PPMD's Annual Conference. Alice rarely sits through an entire session while I pick the several that interest me and take copious notes for later reflection. She will talk to many parents about our sons and what is going well for them and how things might be better. This is her way of helping, both others and herself. I need to know what is new, what might be on the horizon and have the opportunity to learn more. My way is no better than what works for Alice.

I think we all need to find what works for us, yet be certain denial is not an option. There are days we don't want to hear the word Duchenne and there are times we want to scream it to make others listen. In order to get through this we need that balance that helps us understand how to help our family while satisfying the need to do something relevant for our sons and for ourselves. Being a good mom or dad, learning as much as possible about DMD and research, doing additional PT at night or just listening to our sons are all pieces. The key is putting it together so it works for us individually.


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Comment by Sharon Good on June 19, 2008 at 9:48am
What a fantastic blog. It takes us all time, energy and a lot of tears before we realize that everyone needs to find their own way through the maze, and that to do that requires us to be patient!
Our house is the same, I look, research and stress. Simon does, changes and invents. Our other child bosses, organizes and even ignores on occasion, but that is her way of dealing with all the changes in her world.
We have found that understanding, respect and above all love, helps us stay sane and together.
Comment by Jill Castle on May 21, 2008 at 12:59pm
I love this blog and I love you and Alice! Yes, it's taken many years for us to find a groove as well. I think that's why so many folks get divorced or seperated (86% right?). Simply because everyone deals with pain in different ways. It is so hard to get on the same page. In the beginning, Chris and I almost seperated until we realized we don't have to do things the same. We can each focus on our strengths to contribute. I am up all night researching and learning the way you are and my husband is out trying to figure out how to build a three wheel trike that will look superkool. He reminds me to hold on to our kids and to keep my manic self in the moment as much as possible. I encourage him to learn and grow in other areas. Boy, it really took some years but we are relatively balanced. Well....today anyway :) I think we are finally back to leanring how to have joy and fun. It's been quite a jouney.

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