Today baby Charlie Gard passed away. I think we all felt a little of what his parents must have gone through. They fought so hard to keep him alive and for them every second counted. Every hour with their Charlie mattered and was worth fighting for. In our case we were told the day before that our Charlie needed his life support turned off. We were given the recommened option of doing it that day or waiting until the next day when everyone could come and say their goodbyes. The reason they recommened the same day was because they were worried one of his seizures would kill him but we insisted on waiting. Thankfully he survived long enough for him to have a peaceful death with the two people who loved him most in bed with him.
Our thoughts are with Charlie's parents and the long road ahead of them. We've just passed our Charlie's 7th birthday and although the grief is different it is still there. More of a loss of someone who should be here. We think about our Charlie every day and no doubt the Gard's will do too. We send them lots of love.