I HATE DUCHENNE.....

I HATE DUCHENNE…..These are words that are seen on social networks and heard from the mouths of parents around the globe on a daily basis. every day I come across these words on Facebook, and yes I hate Duchenne too (the disease that is). I worry that by filling Facebook with such depressing and upsetting posts can make those with Duchenne feel they are an inconvenience, a burden and somehow different in the human aspect of life, unequal to others.

I understand these words absolutely, and think these words to myself very often, especially when our boy Kye is struggling to do what other kids do easily. But then again I love my boy with every fibre of my being, and realistically that includes Duchenne, Duchenne is what he has, it is part of his life and part of who he is… a beautiful, caring and courageous young boy.

Destiny chose to give us these amazing children. Of course we all wish Duchenne didn’t exist, but it does. These beautiful children are here because they were meant to touch our lives, and become an integral part of our lives. Duchenne is part of their lives and we would never wish them back. We have them to love and cherish and one day remember. Our children never really belong to us, they come through us but don’t belong to us, they are on loan, it’s up to us how we use our time with them.

Grief is a normal part of the Duchenne Journey, we grieve for what our children miss out on, the things that society see as normal that Duchenne makes difficult. However just because society says these things are impossible it doesn’t make that true. I will never tell Kye he can’t do something because of Duchenne, I will let him dream and strive to make those dreams a reality. So many people get bogged down with and depressed by Duchenne (and yes we all have our moments, and life with Duchenne is not easy), I feel we need to live in the moment, move forward and enjoy every single second we have with our children, every single second we have breathing, because old age is not guaranteed to any single human on this planet. Life is a gift, Duchenne and all it’s a privilege to breathe, to live, to love and to remember. One day memories are all we will have; all our children will have of us. I don’t want my kids to remember me being down and depressed all the time, I want them to remember me being there for them, loving and encouraging them, and loving life.

Of course I’m not suggesting that losing a child to Duchenne or anything is easy or something that we can just move on from, I’m saying we need to make sure we all have wonderful memories, having happy memories of a cherished loved one is a gift and can bring us peace in the darkest of moments. Memories can be painful for us to remember, but aren’t we glad we have these memories, it proves our loved ones existed, proves that no matter how much time passes nothing can take those memories from us, they are ours forever, they signify life and love.

I think we should all think about how our comments and behaviour can affect a child with Duchenne. We don’t want to make them feel like a burden or that they have somehow let us down by being “different”. I would never want my son to feel he has somehow disappointed us because of Duchenne, or that our life is so much harder because he has Duchenne. Life is what it is, we can’t change reality; what we can do is make the most of the life and time that has been handed to us, to make those moments count. We all have down moments, life is very hard at times for us all with or without Duchenne. Life more than often does not go according to plan, or how we expected - things we have no control over. What we do have control over is how we are going to let these things affect our lives. We can choose to either curl up in a ball and feel sorry for ourselves and our children - or we can choose to stand up, fight, love and live. Duchenne may not be the life chosen, but it is the life we have been given – life is not a dress rehearsal, now is all we have.

Duchenne is horrible no denying that! My brother Paul may still be with us today if he didn’t have Duchenne, but then I can’t say that with any certainty - as life is uncertain. I thank Duchenne for teaching my family about what is really important in life. Without Duchenne coming into our lives we would not be the people we are today. It has taught us all to appreciate what is right in front of us, to love and never hold a grudge, to always be there for one another even if we don’t agree. My family become much closer throughout my brother’s Duchenne Journey. We came to realise that those things we all take for granted need to be appreciated. Duchenne taught us to be more empathic to others. It taught us to accept people for who they are, taught us that social norms are just stupid rules made up to restrict people to control people, living outside the box opens helps us to be more fulfilled in life. Most importantly Duchenne has taught us to live!

My family and I will do everything we can to fight Duchenne, never allowing Duchenne define our lives – however the Duchenne has and will continue to teach us about ourselves, and about life – throwing things at us that we never imagined we had the strength of determination to overcome, we will meet these challenges head on, Duchenne will help make us stronger!

Just remember when we say we hate Duchenne how that can be interpreted, especially by young minds. Let’s not fill Facebook full of what our kids can’t do, but rather what our kids can do, who they are and how they make us proud every single day of our lives. It’s also important to take the focus off the bad things Duchenne has bought in into our lives, and focus on the good of life, and remember it’s not about us, it’s about our children who are fighting for life.

My Grandad always Quotes this, which I think sums it all up well!

Yesterday is history, tomorrow is a mystery, today is a gift that’s why it’s called the present!