Is it wrong to feel relieved now that I am bereaved? I wish my son was still here and to be able to enjoy his company. Sadly not. It’s coming up to 8 years now, but still feels like yesterday. I remember his smile, that conspiratory look when sharing a private moment.
I am not alone in being a bereaved Duchenne parent. Most weeks I read on Facebook that another family has lost a loved one to Duchenne, some are still in their teens, so I feel lucky that my son was pushing 28. Lucky! Not at all when I think back to how hard it was to always put on a brave face to the world and be strong for him and the family.
I remember my son asking how I felt about having a child with Duchenne. I told him that if I had a choice I would not knowingly bring a child with Duchenne into the world. Such a personal choice for so many families! Nonetheless, he knew he was loved for who he was and Duchenne didn’t define him. He loved family life and brought us all happiness with his joy of life and sense of humour. To us he was amazing and achieved so much in his 27 years. I believe it has made me a stronger, different person.
Like so many Duchenne parents, receiving the diagnosis of Duchenne was our worst nightmare and a day we’ll never forget. From that day onwards there was always the thought of losing my child at the back of my mind, waiting for it to happen, anticipating grief and what it would be like.
There are no words to express our feelings of his loss, but I have such lovely memories and I am comforted that he is at peace and no longer living within the confines of this dreadful condition.
Supporting you
We are here to help you to access the support you need whenever you are ready. If you would like to have a chat please email info@actionduchenne.org or call 07535 498 506.
We also have a section of our website dedicated to Bereavement and End of Life support
Bereavement Webinar
Our Support Officers Victoria and Angela talked to Ann Chalmers, Chief Executive of Child Bereavement UK, about bereavement and losing someone to Duchenne and the impact it has on families, friends and those who knew them.
Note: Every effort has been made to discuss this topic in a sensitive and supportive way. If you need support after watching this please do contact us on 07535 498 506
We would like to thank HM Government (in partnership with the National Lottery Community Fund) for supporting this project.
