‘’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 and after 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 that was brewing beneath the surface. The truth is, that unless I’m struck down by a sudden illness or accident, Duchenne will have it’s way and take Luke long before he is anywhere near old and before it is my time to go.

But Luke’s little face was so full of concern, a concern I understood. He was afraid that 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 to. The brief conversation not only saddened me but made me kind of angry. For Luke, this was a fleeting thought, but I think of the day I will lose Luke every single day. It causes worry and stress and sadness. How dare Duchenne creep in to every little crevice of our lives, tainting every memory and every smile with a hidden heartache? Sometimes I wish it were a tangible thing so that I could punch it, and kick it and scream at it and tear it to pieces just like it has done to me and my family.

But 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 see my family develop special bonds and memories, things untouchable by Duchenne. No doubt 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 that we can’t breathe
• Telling my boys every single day that I love them, that they are magnificent and capable of anything and that I am proud of them so that as they grow they will have faith and confidence in themselves so that they 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 here 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 to force me to find new ways of providing for my family that allow me to not only spend more quality time with them but that also include them

These are just the first few things that popped into my head but I look forward to completing this list and maybe tomorrow I’ll ask the boys to help me add some more items.

Duchenne might fight the hard fight and will win in all likelihood but my boys and me will put up the good fight too and will have fun doing it. It’s not that we’re stubborn or anything lol.