When I started this blog I had four loose objectives. The first was to keep family and close friends up to date with Edward’s progress; the second was as a form of personal catharsis which became more and more important as his journey unfolded; the third was, sadly, to keep an account that Edward would be able to look at in years to come to learn how he had fought and overcome such a huge challenge; and the fourth was to provide a reference for other families who will have to travel the same path in the future, and to give them hope and inspiration.
Although we knew there was a risk, I never thought that Edward would die. He had survived two far more dangerous procedures. This was, supposedly, the easy one, but sadly he belonged to the small percentage of children who are unable to tolerate the fontan circulation. Even now, 3 weeks later, it seems scarcely believable. The grief has been all-consuming and we miss him so, so much.
However, during our month in hospital, something quite incredible happened. From just a handful of readers in the first few days, there were tens of thousands reading the blog by the time Edward passed away. Plenty of these people, often complete strangers, have sent us beautiful messages of love and support, many of which I read out to Edward as I sat with him in the middle of the night. Every day these messages continue to come. They have been a tremendous source of comfort during possibly the most difficult time any parent, or person, could ever experience.
As I’ve already mentioned, It was always my intention to provide a resource for other parents of children with serious heart conditions to look at for support and advice from a family that have been through it. Just because Edward didn’t make it doesn’t change this – all it means is that my focus has now changed from helping survivors to supporting bereaved parents like us. I have discovered that death at the fontan stage is (thankfully) relatively rare, but this means that there aren’t many other parents with whom to talk and get support from who have experienced exactly the same thing. We know of only one family, through Little Hearts Matter, who have already kindly offered to come and see us and I would like to be able to do the same for others in the future, either in person or through this blog.
That’s why I feel that, despite Edward’s death, I should continue with the occasional post, to address issues such as grief and, hopefully, moving on and getting on with our lives. I want it to be a part of his legacy, to provide love, support and guidance for anyone else who has to travel this path. It doesn’t matter if hardly anybody reads it, but at least it will be here if somebody needs it.