Hi, I found myself this morning looking on the net with a need to connect to others who share my experience.
Callum was born on the 5th June 1992 with a complete AVSD. Tomorrow would have been his 21st birthday. Every anniversary is difficult but this one feels harder and no less painful. He was 9 and a half months when he died and was relatively healthy until the last few weeks of his life. He was never given the chance to enjoy a birthday celebration, something I still feel we were both robbed of.
I will never forget the kindness of the nursing staff and medics who fought to save him without success during his thankfully short illness. I will also never forget being asked by the consultant whether I wanted him to fight for his life. A question I only understood later. I recall asking why I Callum could not be put forward for a heart and lung transplant and was told, very sensitively that people like Callum would not be given priority. I know that those kinds of attitudes are no longer acceptable and are challenged by brave families and groups like the Downs Heart group on a daily basis. The Downs Heart Group was a real life line to me both during Cullum’s life and along time after his death.
I have been lucky enough to go on to have two healthy children who are now 20 and 17. I have been able to use my personal experience and have developed a career in adult social care where I continue to fight to ensure all those with a disability are protected from harm and are supported to challenge discrimination.
I now live in a different part of the country where people never knew Callum. I wanted to pay tribute to him on his 21st birthday and to say to all of you with children like Callum that you are blessed although it may not always feel that way.
Happy 21st birthday for tomorrow Callum. You are loved as much today as you ever were.
From Your mum x.