There's nothing like waking up at 5am pissed off. I have no idea why I woke up in such an angry mood, but honestly, it isn't unusual for me to be mad. Lately I have episodes where the anger is so hot and intense that I just want to get up and break something or hit something. I can feel my heart rate and blood pressure go up when these moments come on. Most the time I can try to take plenty of deep breaths, count to 10 or 50 or whatever, and it will pass with the house still in tact. I know the trigger, but I'm not sure what to do to fix it. I can't remove the images of Eli taking his last breath in my arms. I can't stop myself from going back over the events of those 3 weeks over and over and over again to try and figure out something that would have changed the outcome. I know it is too late, but it doesn't stop me from trying to find something, just one little thing, that I could have changed to make things different.
I fought so hard in the hospital back then to get us home. I wanted what time we had left to be good times, not times filled with so many needle sticks that there was no place else to stick or a constant parade of doctors, nurses, hospital staff. Eli was so stressed out by scrubs and white coats and I was tired of having to calm him back down when unnecessary people would come in and get him upset. I wanted to come home and take him for walks or to the zoo or just something not related to SMA or hospitals. I had NO idea that the time I had left was 4 hours. 4 damn hours. I feel like somebody should have told me he was so close to death and asked me if I really wanted to take him home. Honestly, I'm not sure I would have, but I can't say that for sure. I just wish I'd had all the information to make that call. I think they knew or else they wouldn't have made us ride home in an ambulance, right?
I don't think I will ever be sane again. Can I be when I sat and held my son while he took his last breath EVER? I am really beginning to doubt that. I guess I will have to keep faking my way through things, but life sucks. It is hard to go back to being the childless couple. There's nothing in our days that make them worth waking up for, going to work for, breathing for. I have some hope that things will change and maybe some joy will be brought back into our lives, but sometimes it IS hard to see the forest for the trees.