I started this blog in 2013 and although Aidan died just over 12 months later, my aim for the blog remains the same. I want to create some dialogue around how to you parent a child with a terminal illness – the hurdles and the joys and everything in between.
While this blog is not specifically about Aidan, he is obviously a vital part of my story and hence it is important to introduce him properly. Aidan was born at 26 weeks and weighed just 580g. At 24 weeks, I was diagnosed with preeclampsia, so we knew even before he was born that his life would be a struggle – we just didn’t know how much.
At 8 months of age, Aidan was diagnosed with a rare mitochondrial disease, known as Pearson Syndrome, completely unrelated to his being premature. As the disease affects every child differently we were not given an exact prognosis, doctors simply told us that Aidan would “probably die in early infancy”.
Our dreams of having the two children, taking them to weekend sports and going camping were shattered in an instant and so we began the journey of parenting Aidan the best way we could. We threw away the baby books and set up about raising our little boy the best way we could, stumbling along the way.
As a final thought, let me say, I am not a superwoman, I am not religious (particularly since Aidan’s diagnosis) and I definitely don’t have all the answers. I am simply one mum out of thousands who are faced with an insurmountable challenge.