Every year 20,000 parents find out their child has Duchenne muscular dystrophy. It was a known possibility for some families, and others – like my family – are caught completely unaware.
Unfortunately, muscular dystrophy families do not have a monopoly on the grief of a child with a disability. In the disability community, far more than 20,000 families a year receive a diagnosis and live with questions and heartaches that will last a lifetime.
For families and individuals with a disability, such as DMD, questions about the future are ever-present. Two big ones are: Will I die early? What will my quality of life be like?
Will I die early?
When you or your loved one is diagnosed with a condition that will someday end your life, the future can seem hard to plan. It would be easy to say my life will be short, so why prepare for a future that will never come?
My answer is that not a single person on this earth knows how long we have, whether we have a life expectancy of 15 years or 105. No one really knows how long they’ll be here not the parents, not the person with the disability, and definitely not the doctors.
By a certain age, you can look back and see those who have passed away before you because of accidents, cancer, and other unforeseen events. They prepared for a future that seemed so sure, but it never came to fruition. You realize that none of us can predict the future.
A big key to a happy life is not the guarantee of a long life, but what we do with the time we have, so we are prepared for whatever the future may hold.
Meeting the Future
Even if you can’t predict the future, you must believe in and live for your future, whatever it may be.
For example, when I was 18 years old, I had no plan for what I wanted to do or become after it became clear Navy Seal and Secret Agent wouldn’t work out. But I believed I would have a future, and I prepared for it every day. I never dreamed I would someday claim the title Dr. Ryan Russell and be a published author, but here we are.
We don’t choose to have a disability, but we can choose to work towards positive things to build our future. You can choose to fight and work now for your best possible future.
The worst possible thing that could ever happen to someone is not being diagnosed with a life-shortening disease but never really living at all.
By Dr. Ryan J. Russell
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