The reflected sadness (talking to people about Duchenne)
When I meet new people I often tell our story, about Samson’s diagnosis with Duchenne and the life we have. I do this, not for pity, or to get any reaction, but to raise the profile of the condition. With something so generally ‘unknown’ as Duchenne, the more coverage we can get the better. As I always think, you never know who is going to be the next big supporter of the cause.
The more people we can get on board, the better.
But with this ‘telling the tale’ comes the reaction in the person I am telling. The conversation may have come after a general passing the time of day, out and about, where both I and my OH come across as happy go lucky, confident friendly people. When we pass on our story, it’s the look in people’s eyes. Don’t get me wrong, I always speak about our life in such a positive, hope-filled way, but I can always see the shock and horror reflected in their faces that we are actually living this life. They see Samson and look at him with sadness in their eyes.
This is a sadness that Samson himself does not feel. He lives his life in his zany, cute little way and gets the utmost support and positivity from us as a family. We are open about his condition (more about that in another post) with him and embrace his differences and immense strengths.
When I see other people’s reflected sadness a little part of me re-lives the diagnosis. It reminds me of the battles we face, but also the way we are empowered to make life as amazing as possible for the children.
It is my hope that, when people hear our story, they go home to their family and hold their loved ones extra close. Or that they appreciate the little things more. Breathe in the lovely air, relish the world around them and don’t take life or others for granted.
I will never stop telling our story for fear of seeing the reflected sadness in people’s eyes. I want as many people as possible to be touched by our story and help us make the future better for youngsters like Samson and everyone else living with Duchenne.
(Follow our fundraising story for Action Duchenne https://www.justgiving.com/fundraising/StrongforSamson)