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Why This Bucket List Can’t Be Touched by My Child’s Terminal Illness

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‘’Mummy are you going to die when I am still alive?”

These random words hit me like a bullet tonight. Luke said them to me as I was tucking him in. Afterwards I told him, “Luke, Mummy loves you so much. I will love you forever.” Of course I didn’t answer truthfully. I told him everybody dies at some time, but not until we are much older. His response was “all of us get old,” and I just said, “yes darling”and began to sing to him as I fought back the emotional wreck brewing beneath the surface.

Claire's sons hugging outside
Claire’s children.

The truth is, unless I’m struck down by a sudden illness or accident, Duchenne Muscular Dystrophy (DMD) will have it’s way and take Luke long before he is anywhere near “old” and before it is my time to go.

Luke’s little face was so full of concern, a concern I understood. He was afraid one day he would lose the person he loved most in the world, the only person who can give him the comfort he needs, the person he thinks about when he feels down, the one he wants to tell all his exciting news. The brief conversation not only saddened me but made me slightly angry. For Luke, this was a fleeting thought, but I think about the day I will lose Luke every single day. It causes worry, stress and sadness. How dare Duchenne creep in to every little crevice of our lives, tainting every memory and smile with a hidden heartache? Sometimes I wish it were a tangible thing so I could punch, kick and scream at it and tear it to pieces, just like it has done to me and my family.

I can’t do that, so instead I’ll make a personal bucket list — not the kind that sees me scaling Mount Everest or spending a week on a deserted island. Instead it’s the type of bucket list that will help my family develop special bonds and memories, things untouchable by Duchenne. Undoubtedly this list will be added to as the years go by, but I imagine it will include things like:

Rolling in the mud with my boys until not one piece of clothing or flesh can be seen through the mud.

Enriching my boys’ lives with so much fun that at least once a week we all laugh so hard we can’t breathe.

Telling my boys every single day I love them, that they are magnificent and capable of anything and I’m proud of them. I hope doing this will help them have faith and confidence in themselves as they grow, and believe they can achieve anything they set out to do.

Find a miracle in everyday life so my boys grow up seeing beauty and love in the world.

Finding a way to push Duchenne to the back of my head during the day so I can really be in the moment with the boys, never missing a second of the love and joy they bring into my life.

Taking the plunge and giving up my job. This will help force me to find new ways of providing for my family which allow me to not only spend more quality time with them, but also include them. 

Duchenne might fight the hard fight and will win in all likelihood, but my boys and I will put up the good fight too, and have fun while doing it.

Follow this journey on Leap for Luke

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Originally published: July 13, 2016
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