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Why I'm Afraid I'll 'Blink' Through My Son's Life With Duchenne

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“Sometimes you will never know the value of a moment until it becomes a memory” — Dr. Seuss

Luke smiling holding a teddy bear

Tonight I lay in bed singing my little boys to sleep  dear love them, I haven’t got a note in my head but they love it. This is nothing new. I do it nearly every night. But tonight as I lay there croaking my heart out, I was reminded of how Mark, my brother, and I would have laid in our mum’s bed some nights as she sang “Big Empty Bed,” a song Mark always wanted her to sing. With the exception of the song lyrics I remember much about those nights: the warmth of mummy’s bed, the feeling of comfort, the “not a care in the world” feeling that only a child can experience. Those nights seem like just a blink ago and somehow here we are 30 years later. It got me thinking about how precious time is, and of course the thought of time always brings me to the dreaded reality of how limited my time is with Luke.

In just a blink those “laying in mummy’s bed nights” were over. I became a teenager, I lost my brother, I turned into an adult and became a mum. And that makes me ponder all the “blinks” I will take as Luke grows up.

My Luke just loves being active. I need eyes on the back of my head. But what if I blink and he can no longer run outside with his little brother? This thought makes me want to wake him right now, take him outside and run around with him until he falls asleep on the grass.

Luke, his brother, and Claire
Claire, Luke and his brother, Coen.

What if I blink and he can no longer lift those little arms to catch a ball, or wave at his granny or lift an ice cream cone to his mouth or hug me?

What if I blink and the only thing he can do with his upper body is push a light touch button that sits right next to him?

What if I blink and his lungs can no longer work on their own and even a regular cough becomes a deadly enemy?

These things I can handle. I would carry Luke barefoot to the ends of the Earth and back if he said that’s how it ought to be. Yeah he is spoiled — so what? No physical disability will ever stop me from making my little boy feel happy and valued and capable of achieving anything he wanted. My love for Luke and his love for life will help us to conquer anything this reckless, unforgiving disease can throw at him. We will throw it back even harder.

But I know Duchenne muscular dystrophy (DMD) too well. It has haunted us for years. We have looked it in the eye so many times and have never even come close to defeating it. We haven’t even managed to wound it. Without a miracle, Duchenne will take my son. It will leave Coen without a brother and will leave a void that can’t be filled in so many lives.

My most fearful thought every day is what if I blink and that little heart that I have nourished so full of love, can no longer sustain life in his little body? What if I blink and I’m standing at his graveside? How do I move on from that blink?

… I couldn’t!

I know that I should live in the present and not let worries of the future interrupt my life. But these fears, to me, are acceptance, or at least my version of it. I accept Luke has Duchenne. It took me a while, but I got there. I accept he will become severely disabled. I accept his body will give up piece by piece. I accept I will have difficult questions to answer from both Luke and his brother. I accept Duchenne is not going away. I even accept a cure will not be found in Luke’s life time (we’re aiming for a treatment not a cure  something to transform DMD to a chronic condition instead of a fatal one). But I cannot accept that Duchenne has a wretched right to my son’s life.

It is his life, and I will do whatever it takes to make sure he is in control of that life, not Duchenne. The fight will be long and hard, but I am in no mood for giving up.

Follow this journey on Leap for Luke

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? Check out our Submit a Story page for more about our submission guidelines.


Originally published: June 8, 2016
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