We did nothing more than shut the door to his bedroom after the Police left, the day he died. We took everything in there that was in our home and shut the door. Sounds wrong but the visual reminder was too much to bear.
I slept with one of his blankets - every single night.
There was no 'How to..' guide on what to do next. Nothing felt right. I cannot even tell you what we did most days and evenings. They just merged into one.
We went to see him, every single day. Without Fail. Most of the time, I never got dressed and went in my PJs. It didn't matter, for my baby had died. I thought it was an achievement just doing that.
I never wanted his death to be in vain. When we were told about his heart condition, we searched and searched for info on the two pre-natal diagnosis. All had relatively positive outcomes. When they told us on PICU it was HLHS, I texted my best friend who was coming up in a couple of hours to see him, her boy. Said can you google it please, print stuff off so I know. She came and wouldn't give it to me. Took my husband to one side and said, you may want to sit her down first. She couldn't bear to tell me she had found one website that said most don't live past 5 years of age. I phoned her once he told me and said to her 'If I only get 5 years with him, it will be the best 5 years of my life'. Those words haunted me. I had 142 days with him. They were the best 142 days of my life.
We now know of older teenagers and children in their early twenties, living in America with HLHS, having had the surgeries.
When my boy died, we were indundated with support, messages and people wanting to pay respects so a Just Giving page was set up. We quickly raised thousands of pounds, so we did a sponsored swim and raised another thousand or so pounds. So we decided we will not let the memory of a beautiful, dear baby, just fade away and launched our fundraising. We launched a foundation raising money for the PICU that saved and tried to save him. We began arranging a charity auction night.
Somewhere in the grief we discussed whether we would have another baby, not to replace him, never could that happen. We were told that the chances of another baby with a CHD or even HLHS was slim, a 3-4%. To have one to begin with was 1-2% so imagine my thoughts!
6 weeks after my precious, darling baby boy died.
I was pregnant.
