Parent View – Duchenne Muscular Dystrophy
By: Luke Dalien
My son is four years old and has Duchenne Muscular Dystrophy.
For those that are unaware, Duchenne Muscular Dystrophy (DMD) is an incurable, degenerative muscle disease. Basically, over time people with DMD watch their muscles waste away and eventually give out.
Not pretty, not pretty at all.
My wife and I received our son’s diagnosis about a year ago. The first year after the diagnosis was tough… okay, it was hell on earth.
But we are past that year-long emotionally charged chaos now… well, mostly.
Life After A Duchenne Muscular Dystrophy Diagnosis
We still think about the future as it looks today, even though we know not to. Technology is changing daily, and advancements are continually being made, so it is literally impossible to know what will happen a year from now, let alone ten years or 20 years.
Today, we live in the moment and cherish each and every minute of each and every day.
We’ve opened our eyes to life and stepped out from beneath the clouds of monotony.
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For its sunshine that my son and our family deserve. The sunshine of happiness, love, and acceptance.
None of us know when we will leave this earth. None of us have any say in the date we were born. The only control we have is what we do, and how we live during the moments in between.
Being the parent of a child whose current life expectancy is 30 years max, changes things.
It changes everything.
It changes the way you view the world and the importance our culture puts on certain things.
Material items are pushed down on the list almost to the point where they fall off completely.
Experiences are what matter most. From seeing, exploring, and immersing yourselves into new cultures, new foods, and new parks.
You choose to simply take “the long way” to your destination. Whether going on a cross country trip or just to the store. You see more that way.
Food tastes better… no really, it does. You appreciate it more, savor the flavor. Odd, I know.
The Beauty Of Time
Time. Ah, time.
Time becomes both your most precious ally and your worst enemy.
Worst enemy because time never stops, and it never slows down. Each moment that goes by means the progression of the disease within my son continues, unabated, like an army of deadly bugs without an exterminator in sight.
Precious because you totally and completely value time’s presence more than ever.
Your eyes finally open and you see time for what it truly is… a finite commodity.
The moment your eyes open, the truth hits like a ton bricks right smack dab in the middle of your forehead.
Time is finite for all of us.
Think about that for a moment. For us, it literally took the monstrous diagnosis of a deadly disease within my son to see this…
Before the diagnosis, I never saw time in the state I see it now under a microscope, vulnerable, raw and real.
I was blind to the truth, and I wasn’t alone.
Today, most everyone goes through the day-to-day life waiting, praying for the weekend, dreading Mondays, feeling stuck and mostly miserable.
Retirement is what they’re after… the “golden years.”
Filled with the term “someday,” and the “maybe when’s.”
The realities of time hides from them.
But time quietly marches on; unstoppable, systematic and continuous. Minute by minute, hour by hour, day by day, week by week and most people don’t notice.
Most people just throw away time like two-month-old raw fish and continue to waste it like water on a lush green summer desert lawn.
Some people act as if they can’t possibly get rid of time fast enough.
Yet time is the most valuable asset we own.
You can’t get more of it, ever.
You don’t have a tracking mechanism available to know how much time is left and it’s impossible to trade.
All of us are only given a certain amount of time, why waste a single moment of it?
Bottom line… Being the parent of a child with Duchenne Muscular Dystrophy for one year has taught me more about what’s truly important in life than all of my prior 37 years combined.
Keep Your Eyes On The Path And Your Heart On The Journey.
This entry was posted on Tuesday, February 5th, 2019 at and is filed under Special Education - Parents View and tagged as Advocacy, Luke Dalien. You can follow any responses to this entry through the RSS 2.0 feed.