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For Those Who 'Can't Imagine' What It's Like to Parent a Child With a Fatal Condition

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A colleague once said this to me: “I can’t even imagine what it’s like.” I’ve heard this same comment from friends and family too.

They’re talking about how we deal with our young son’s illness. It’s called Duchenne muscular dystrophy (DMD) and it’s a fatal, muscle-wasting disease that currently has no cure. When we we learned that our son Matthew had DMD at the age of 3, my wife Tammy and I were devastated by the diagnosis. Those were some of the darkest days we’ve experienced. We couldn’t imagine it back then either, but we’ve learned many lessons in the six years since his diagnosis of DMD.

We’ve learned that we’re blessed to be the parents of a loving, gregarious, caring, vibrant, funny, smart, little boy. He’s engaging, inquisitive, thoughtful and at the tender age of 9 he’s the greatest teacher we’ve ever known.

He’s taught us the importance of living in the present.

He’s taught us to cherish each day.

He’s taught us it’s OK to cry.

He’s taught us the healing power of laughter.

He’s taught us that we won’t not live forever.

He’s taught us the value of trying to make a difference on a daily basis.

He’s taught us to fully appreciate my other children and the preciousness of life within my immediate and extended family.

He’s taught us that my wife (all 5 feet and 1 inch of her) is the strongest, most resilient woman I’ve ever known.

He’s taught us about the power and inspiration of faith, as well as hope.

He’s taught us to cherish the immense joy in our lives.

He’s taught us to never give up.

We don’t talk much about our son’s disease because our goal is to make sure he has as normal of a life as he can. So there you have it, for those of you who can’t imagine.

Originally published: April 4, 2018
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