This is a blog about my son, Edward (Ned).
When I started it, it was meant as a way of keeping my friends and family up to date with what we thought was going to be a relatively routine fontan operation to help treat his condition, Hypoplastic Left Heart Syndrome (HLHS). I also intended it to be a source of comfort and inspiration for other parents and families of similar children by showing them how the condition could be overcome. However, it did not pan out this way. Our beautiful boy survived the operation and looked like he was recovering but he deteriorated and became seriously ill. He fought for life with all his might for 3 weeks but it became too much for him and he passed away in our arms at dawn on July 28th. He was four years old.
During this time the blog went from having a few dozen readers to tens of thousands, many of whom sent us amazing messages of love and support as Edward’s story unfolded. I read many of these out to him as he lay in bed and they were a tremendous source of comfort. It also became an emotional crutch for me, an outlet to express my deepening anxiety and despair as his condition deteriorated.
Although I have now stopped writing it, I have decided to keep the blog online for two reasons. The first is that, in my grief, it somehow keeps me close to him and gives me comfort. The second is that, although his journey ended in tragedy, Edward’s story is one of love. He was surrounded by and gave nothing but love throughout his life and inspired it in others, even in death and, although I am devastated by his loss, I know that I will be a better person because of him for the rest of my life. If his story has the same effect on just one other person who reads this blog, then it will be worth bearing my soul and broken heart so publicly.
As his father, I am so proud of Edward. He was my hero, and always will be.