‘There are moments which mark your life. Moments when you realise nothing will ever be the same and time is divided into 2 parts, before this and after this’ (unknown)
I’ve had 3 moments like this in my life.
- 10pm on Tuesday 19th April 2011 – The best one. The moment that made me a mother
- 07am on Thursday 29th February 1996– My first heart break – The moment Duchenne took my only brother
- 12.58pm on Friday 25th May 2012 – The worst one – The moment I found out that my first born son has Duchenne
It is no 3 I want to share today. It was this moment that changed who I was, changed how I see the world and the people in it. The moment when my heart shattered into a million pieces and the moment I realised that a broken heart wasn’t the end of the world, it was just the beginning of a new one.
It was the morning of the 25th May, we were in the middle of a heat wave, and it was Friday. I should have been happy and excited at the thought of spending the next few days of glorious sun shine with my little boy. Instead I was terrified, so scared that I could hardly catch my breath. I’d known since I was a child that I was a carrier of Duchenne Muscular Dystrophy – At 14 years old, I sat at my brother’s bed side as Duchenne took his last breath, I’d heard many a happy story of my 3 uncles who had all died with Duchenne, I knew of my baby cousin Stephen who had been diagnosed with Duchenne but had died from other complications in infancy – and today I would find out if my gorgeous boy, the love of my life, had Duchenne.
I lifted my 13 month old Luke from bed that morning and I cuddled him tight for as long as he would let me. I never wanted to let him go. It was my job to protect him and keep him safe and later that day, I would find out that he was very far from safe.
I went to work that Friday morning, and to this day I don’t know how I sat there until lunch time. I remember the feeling of dread so very clearly. I wanted to cry, I wanted to scream… anything to get rid of the tension in my head but I held it together and smiled politely when people spoke to me that day. Only a handful of people knew that I was waiting for news.
The doctor had agreed to meet with me over lunch time – a sure sign that I was getting bad news. When I arrived at the surgery I was so filled with fear, that I felt like I was about to burst and I honestly don’t know how my feet carried me to her office. Still wanting to be the optimist, I smiled as she sat down and she almost instantly said ‘It’s not good news Claire’. And that was it, my cue to finally stop fighting the tears they were coming hard and fast whether I wanted them to or not. I felt like I might die right there and then. I listened as she told me she didn’t know what to say because she didn’t know very much about the condition but she did know that things had moved on since my brother was alive and there was every chance that I would have Luke for longer. I was instantly hit by a wave of worry and fear, a wave that I will ride for the rest of my life. I instantly pictured Luke’s funeral, I remembered Mark’s and I grieved the loss of the future my son could have had while also grieving the loss of my brother all over again. I imagined all the questions Luke will ask: ‘mummy am I going to die?’, ‘mummy why me?’, mummy, what happened uncle Mark and will that happen to me?’. Then I began to worry about the rest of my family. I had to call Luke’s dad, I had to tell my parents, Duchenne had already taken so much from them, my sister was thousands of miles away in Australia – how would she deal with the news on her own? I had to tell my husband’s family. I felt like it was all my fault, I carried the faulty gene and gave it to Luke – how would I explain that to him when he was older? It felt like 10 new questions were popping into my head every second.
I left the doctors surgery that day through the side door and went straight to my mum’s house where Luke was. I wanted to hold him; I wanted to say I was sorry; I wanted to do something to make it better I just didn’t know what. Luke was eating a bowl of potatoes when I arrived. He was happy and smiling. He was outside and loving the nice weather. The sight of his wee face made me break a little more but it also gave me comfort. He was so full of life; he knew nothing of the agony in my heart or of what awaits him in the future. I knew there and then that I had 2 choices. I could wallow in my heartache or I could put the finger up to Duchenne and give my son the life that he deserved despite Duchenne. Wallowing wasn’t going to help anyone so a finger up to Duchenne it was.
For some reason the serenity prayer was in my head and I kept repeating it over and over in my head. ‘God grant me the serenity to accept the things I cannot change, Courage to change the things I can and the wisdom to know the difference’. There is absolutely not one thing I can do to change the fact that Luke has Duchenne but I can change how it impacts on our lives, how I think about it and I can sure as hell try to change what having Duchenne means.
We did have a glorious time with Luke that weekend. We went on Saturday morning and bought a paddling pool and balls and had a right laugh when Luke’s nappy swelled up to a giant ball because I had set him in the pool with a regular nappy instead of a ‘Little Swimmer’ .Then on Sunday we went to Newcastle, Co. Down and had a lovely day out. I didn’t even bother to put on makeup; every second of my time was Luke’s that weekend.
Quality time with Luke became my main priority. I made major changes in both my personal and working life to make sure that I have time to dedicate to giving Luke the best memories a boy could have an so that I can spend every day educating myself on genetics, research projects, Duchenne standards of care, education for children with Duchenne and getting to know other families affected by Duchenne. And so that I can work on fundraising for research, campaigning for better care for children in Northern Ireland, and on creating awareness of Duchenne.
So in one way Duchenne has left me just a broken hearted shadow of the person I once was but on the other it has given me strength and courage. It has given me a unique opportunity to see what is important in life, it has given me a personal strength and confidence that I would never have had without it, it has given me the tools I need to fight it, it has allowed me to meet some amazing people who inspire me every day and it has given me a great purpose in life. I will not stop fighting Duchenne until every child with Duchenne can lead a full and happy life, and I do believe that that day is coming, I just pray every day that Luke can live to see it.