Decisions No Parent Should Make

Once darkness falls, my mind begins filling with all that could have been. I know it is because I finally let myself go there. I let myself feel all of the sorrow, love, and pain for my lost son. Sometimes, all I feel is guilt.

I try to imagine Noah at Monkey's age right now. What would his life be like? Would it have any quality? When Noah was alive, my biggest fear was prolonging his life if there was no quality. Who I am to make that choice for him? I kept telling myself quality was more important than quantity. Maybe that was just my way of preparing myself for the inevitable. I knew he wouldn't be with us forever. That doesn't mean that I didn't dream of him growing up. During those long week's in the NICU, I tried to imagine him and Monkey. I knew he would never crawl or walk. I had decided that we would move. Buy a house with a large playroom just for my boys. I imagined their first day of kindergarten. I knew Monkey would look out for his little brother.

When I imagined all of this, I always blocked out the negative. I think of it now and see so many different things. First, what would have his development have been like? Would he ever be able to communicate? Would he be able to eat or would he always be tube fed? The seizures were my biggest fear. Would he suffer from them all of is life? Would he be in pain? I also think about the responsibility that would have fell on Monkey. Would he have grown up too fast having to be Noah's protector? People are cruel. I can only imagine the terrible things people would say about and to my boys.

I feel like a horrible person when I admit that I was very scared of Noah's survival. I wasn't scared of the challenge of caring for him. That was the easy part. I was so scared he would suffer. Scared he would have been suffering if we went to extreme measures to prolong his life. That would have been terribly selfish of us. On the other hand, who are we to play God with his life? Was it really our choice to not put him on a ventilator? Deciding on the DNR was the hardest choice I have ever made. We made that decision early in his life. We knew the odds were very low he would ever come off of it if he were to need it. I couldn't imagine that as life. That seemed very selfish because it would have been for us not him. I am not saying that someone who chooses that option is wrong. It just wasn't the right choice for us and Noah.

Many times, I think about that choice at the hospital that fateful night. They bagged him for a very long time. My insides were screaming to go with the ventilator, but I think I knew he was gone. I truly do feel like I would have just been prolonging his pain. The ventilator would have been for me. Honestly, I don't know that I could have made the decision to take him off.

I am trying to let go of this stuff. These are the things that haunted me during his life and now after his death. No matter what, they were choices that no parent should ever have to make for their child. I felt that all I could do is what we felt best for Noah. It doesn't make it any less difficult though. I can only hope I made the right choices and that he didn't suffer.

It will be two years in a few weeks. I can feel it. It is like the air is slowing being sucked out of the room. Everything either sends me into a rage or brings me to tears. Every now and then, a tender moment with Monkey sneaks in and takes me by surprise, which winds up making me cry. I hate being out of control and this grief is out my control right now. I am just trying to go with it and stop apologizing for it. I lost my son. I am allowed this. I can't help that everyone else chooses to ignore it and is uncomfortable with my anger and sorrow. I don't have the energy right now to worry about them. They will just have to fend for themselves because right now I am just focused on making it through the next few weeks. I want to think of him and only him. I miss him so much every part of me aches to hold him one last time.