‘At times, hope can lighten the load, other times it strengthens the bridges’ (Gerard N. Lund)
For months now, I’ve been excited about going to watch some inspiring women giving the ‘talk of their lives’ at the TEDx Stormont Women event. The theme this year is building bridges and it’s got me thinking about my journey as a Duchenne mum and the bridge that I am building, the one that is taking me from the moment of my son’s diagnosis with Duchenne to the other side…The side I don’t want to go to, the side that will see me having to say a heart wrenching goodbye to my first born son much too soon, and where I will be forced to walk away from the bridge to a world that I don’t want to live in, a world without my baby boy.
I must admit, my first reaction was to burn the bridge. To pretend that, somehow, I wouldn’t have to cross the bridge if it didn’t exist. And so that’s what I did. But time moves on and I came to realise that I am moving from A to B whether I want to or not, I can’t stop it from happening, I can’t find another way to get from A to B, the only way is to cross a bridge and so I had to choose which kind of bridge I would build.
I could wallow in self-pity. I could live in denial. I could cut myself off from the world. And I could allow myself to stay permanently in the grief of diagnosis, allowing fear of the future to build a wall around me and everyone close to me. But what kind of life would that mean for my children? How would I be able to give them the life that they deserve if I was so focused on my own pain that I chose the most dilapidated bridge to cross? And when I reached the end of that bridge, how could the hardships endured crossing it ever prepare me for life at the other side of the bridge?
And so, instead I chose to build a bridge of hope… and with the exception of deciding to have children, it was the best decision I ever made.
The bridge that I am building is a work in progress and to date it is beautiful. This bridge reflects just the right amount of light to let me see hope on the horizon. Hope that one day perhaps the bridge might take a turn and the destination could be different. But for now, it is headed to where every bridge before it has headed and its direction reminds me to be realistic, and being realistic allows me to plan better for the future with Luke – a child with a severely progressive muscle wasting condition.
My bridge doesn’t look like what you would expect a bridge to look like. Those who knew me before my Duchenne Mum life, will remember a girl too shy to say boo to a ghost. But now that shy girl has shared her story in talks to hundreds if not thousands of people. I would never have expected that I would be able to say that about myself. And so, I am proud that my bridge looks different than what some might have expected.
My bridge is long and wide. Long and wide enough to hold the many people who help me on this journey. My family and our friends. Friends old and new have walked beside me on this bridge and I have laughed and cried with them. I’ve laughed sharing stories of the joy my children bring to me like when they embarrass me by asking very loudly why my TV repair man is wearing a t-shirt that ‘is too tight for his belly’. And I’ve cried telling them that I don’t want to lose my baby to this condition that took my brother when he was only 16 years old.
There are other people who live on my bridge. They walk this journey too. These people bring me comfort and have become my friends. If I had not had to build this bridge I never would have known such amazing people. I’ve watched as some of these friends have reached the other side of the bridge and I am humbled by their strength as they stay there holding the bridge up for the rest of us. They give me hope that I too may one day have the strength to face what lies at the other side of the bridge – the inevitable fate that Duchenne lays on everyone.
This bridge of hope I’m building has the most intriguing watch towers. These towers let me see the progress being made in the search for medicine that will make my bridge travel much further than expected. These towers give me so much hope that they inspire me to join the fight for treatments, a fight for which me and my supporters have raised £100,000.
But the best thing about my bridge is the joy it gives my children. My crazy 6 and 4-year olds who drive me up the wall. The fact that I must build this bridge means that I have learned the value of each and every moment. I treasure every smile, I memorise every climb and every run and every pedal and every jump. These things for Luke will not last long but my goodness the memories we are making will. He’s already seen the real Santa in Lap Land and the real Mickey Mouse in Disneyland. He’s drank the milk right from a coconut and rolled in mud and felt the freezing cold sea on his feet. He and his brother are the happiest little rascals I know and as I travel on this journey it is my mission to make sure they remain that way – yes, the happy part and the rascal part!
And so, my bridge still has far to go. It is and will continue to be covered in pot holes and lumps and bumps, remnants of the joys and fears and ups and downs that every life will have. I know that tough and really tough milestones lie ahead but this bridge that I am building has everything I need to keep on going until fate decides it’s time to stop. But until then we’ll live in hope.
Thank you for helping me build my bridge of hope xx