Sometimes I wonder if we did the right thing. Other times I know we did. Then I wonder if it would have even mattered. I know it wouldn't. Eli had many signs of SMA from birth, but of course we didn't know. By the time we did, it was pretty much too late. The DNA testing didn't even come back until after it was too late.
The last week of his life was not good for him. He was unable to stay off the oxygen towards the end, but even on the highest setting, it wasn't enough. We would have been in the hospital for a long time, which he hated. It didn't seem like most of the doctors had any clear ideas on what to do with an SMA baby. I never really thought they had it together enough to trust them to treat my son. He hated the sight of white coats and scrubs. I know we did the right thing. I only start to doubt myself on the days I long to hold him so much that I lose my ability to think straight. I know each of us has to decide what we think is best for our children and we did.
It was all so fast and furious; I never even got to fully comprehend what we were dealing with until a month or so AFTER he was gone. We did make the choice to work with Hospice, but were only under their care for 4 hours. My big plan was to bring Eli home so we could go enjoy the days he had left. I never knew it was going to be hours, not days. I thought I would have more time to investigate clinical trials or other options. When we woke up that day, I didn't know it would be THE day.
Even now it is all too much to take in. I look at his pictures from Christmas and he looks so beautiful and HEALTHY. How did it all go so bad so fast?
I miss you so much little man. It breaks my heart that you aren't here...that I have to watch your daddy cry when he watches our home videos of you and him. It wasn't supposed to be like this. It just wasn't supposed to be like this at all.