What messages do we send to our sons, to our friends, to our family? When Duchenne muscular dystrophy (Duchenne) enters our homes, all of us change. What we think changes. How we communicate changes. And maybe, just maybe, our communication changes in light of the hope we have on any given day.
Sometimes I hear themes that frankly worry me a bit and since this is my blog, I thought I would bring them up simply to think about. Nothing more.
I do know we are all waiting… waiting for clinical trials… waiting for news about treatments.. waiting for treatments… waiting for cures. Are you waiting, thinking that life will begin once a treatment exists? And do you worry that your son will interpret this as ….life is terrible and will remain so until you have a treatment? Will life pass you by and will you spend too much time waiting and not living?
Boys with Duchenne are walking longer, living longer, growing up, and becoming adults. AND we all need to plan to see them grow up and become successful individuals who contribute to society. We all believe Duchenne should be removed from the list of ‘lethal’ diagnosis and switched over to the list of ‘chronic disease’ that has a growing list of treatments (and cures). Individuals will be diagnosed, enter a system that delivers optimal care (and the number of these clinical centers of excellence is growing thankfully), and receive treatment/cures. Progress to date is amazing - progress in research and medical care, a philosophical shift from the ‘no hope and no help’ of years back, to potentially amazing and endless possibilities.
As parents, we also need an attitude change ourselves. I love the phrase from Shawshank Redemption: “Get busy living or get busy dying”. We have to stop saying ‘our kids are dying’, in fact they are LIVING and are expected to live a long life.
We need to encourage independence. We need to stop building protective bubbles around our sons. They need to be able to listen, speak, and act for themselves, without filters.
We need to realize that education is paramount. Frankly, this is an area in which they can compete and their future will depend on the educational foundation they build today.
We need to promote their success. Education, employment, independence, life choices. After all, what happens if you are not around?