‘Something will grow from all you are going through and it will be you’ (Unknown)
I’ve seen this quotation so many times recently and every time it brings me back to our journey with Duchenne and the impact it has had on me personally.
When Luke was diagnosed with Duchenne Muscular Dystrophy on 25th May 2012, my whole world fell apart. The words simply don’t exist to explain that heart shattering moment when I was told that my first born, the baby I had waited so long for, would likely die before me. That the beautiful, active toddler, sitting in front of me on that gloriously sunny day, would slowly, but still much too quickly, lose power in every muscle in his little body, so that he would no longer be able to do the things he loves, even hugging me.
And even though every day is an emotional rollercoaster and I hate Duchenne with every fibre of my being, part of my fight to prevent Duchenne from consuming me, is to actively look for and acknowledge the positive effects that Luke’s diagnosis has had. And perhaps by doing so, I can teach Luke as he grows, to also look for the positives, even though there are days when they are hard to find.
So many people I know today would not have known the old me, and those who did will likely tell you there are times they barely recognise me now. I was, and still am quiet, shy and reserved. I tended to keep myself to myself. I always let others take the lead in everything I was involved in. With the exception of delivering training as part of my job, I shied away from situations that would involve public speaking or anything that would put any kind of attention on me. My world was pretty close knit.
The way I see it, Luke’s diagnosis has added 3 things to my life that were missing before New people, Confidence and Appreciation.
Since making Luke’s diagnosis and my resolve to save him public, I have been blessed to have met some truly amazing people who have supported me along this journey. They have included friends and strangers. People from our community and further afield who have shown me the real generosity and kindness of the human spirit. And that’s not even to mention the people who have become my Duchenne family – the hundreds of Duchenne parents worldwide, most of whom I’ve never met in person but who share in this journey. In them I have made many life long friends. If it weren’t for Duchenne these people wouldn’t be in my life. And I know my Duchenne friends will understand this – I wish these people weren’t in my life but I’m glad they are.
I cannot save my son without creating awareness of his condition and actively asking other people to help me. I cannot save him without campaigning for care that will prolong his life or without advocating for access to therapies that will slow down his condition. In my quest to save him, I have openly shared my story, I’ve poured my heart out in public even though it felt totally against the nature of my personality. I’ve spoken on live radio and on independent TV channels, I’ve taken centre stage at events that provided me with awareness building opportunities and I’ve travelled alone to conferences and advocacy events throughout the world, where I had to force myself to network, no matter how hard that shy little girl inside me felt it was. Without Luke’s diagnosis I would never have had the confidence to do those thing. His diagnosis has created a fire that burns so strongly in me that Duchenne has given me the strength I need to fight it…ironic huh!!
Every night before I sleep, I watch my boys sleeping for a little while and revel in the beauty of the 2 little miracles I created. I’d like to think that I would have done that even if Luke didn’t have Duchenne but I know that his condition makes me appreciate the little things in life, in a way that I might not have done without it. Every single day is precious when you have a life limited child. In just a few years Luke will be off his feet and so between now and then, I take in and memorise each little pedal of his trike, each run down the lane, every nature walk. A while after that he may not be able to hug me, so I hold tight with every hug in the hope that it will last a second longer. And after that his heart and lungs will weaken so as I watch them sleeping I listen to his breath and watch his little chest and silently ask them to promise to fight to stay strong. I must have 10,000 photos, memories made, and 2 children who know that they are loved beyond compare.
Sometimes Duchenne has little victories, moments when my guard is down and it plays havoc with my emotions but mostly Duchenne has given me strength, resolve and purpose. It has brought people into my life who give me strength, it has given me the confidence I need to beat it and it has made me ever wary of just how precious each and every day really is. So thank you Duchenne for that, but I’m still going to kick your ass!!! 🙂