It has been over five years since we began walking through Alex’s death with her. At the time, we still had hope that she would make it. We were naive, how could we know what all the nurses and doctors already knew was the likely outcome. With her kind of brain injuries, it was not possible for her to come back to us, but we did not know this! We fought for her, researched, asked questions, demanded that they try everything they could to help her. I asked that they ask for second and third opinions from bigger hospitals and doctors. Alex’s father and stepmother and I worked together to do what was best for Alex.
I did not want to give up, I did not want to withdraw life support. I wasn’t ready! I agreed to it because I was convinced it was the best for Alex. It has been Hell to live with this..I knew that if I let her go, I would have to forgive myself, but had no idea how deep this would infiltrate my soul. It goes against a mother’s instinct to let her own child die. To sit with her for five days and watch her slowly slip away. I changed my mind on the second day, but the doctor said it was too late. Her frontal cortex was probably also gone by then. I was reminded by one of her nurses that the only way Alex could communicate was through her body and facial expressions. She had a horrible scowl on her face the entire 8 weeks, until the night we took her off life support. She was at peace, she no longer fought or scowled and the storming stopped. There was no medical explanation for this. So I had to believe what the nurse was telling me..that Alex was telling us it was okay, the only way she could.
We hung out in her room with her for five days. People came to say goodbye to her, we ate, watched TV, laid in bed with her. It was so strange to just hang out with her like that. I felt like I was in denial that she was actually going to die. I think denial can be a gift. At times, I have felt guilty that I didn’t run screaming through the hospital at all times everyday. Just last night, I told my younger daughter, Hope that I wished I would have pleaded with Alex more to come back.
I have said some of the most bizarre things since Alex died. I wish I could have kept her body and kept her here. I have her ashes, but I wish I had all of her intact. The night she died, I got the call from the organ donor people. It was horrifying. I didn’t think about what that would be like. Answering around 100 questions about her social history was so upsetting. Then, I worried about Alex being taken to some strange place and dismembered. It was all so God Awful. Why God? Why couldn’t you heal her brain when all these other people who are so less deserving than sweet Alex, get another chance.
Well, the other day, I finally decided that perhaps, it was Alex’s time to go. Maybe it isn’t about fairness or good and bad. Maybe, it is about timing. I hated this theory until now. It made me so furious when people would say that it was either her time, or that she was so good that she learned all she needed to here. I have walked through many other people getting another chance since Alex died. It breaks my heart every time..not because I wanted them to die, but because Alex did.
We just had a Christmas party today. It was a lot of fun. It was jolly and we had many good friends and good foods. The house is warm and looks really Christmasy. Now, here I sit writing about my dear Alex, who isn’t here and won’t be here for another Christmas ever again. It is hard to live in the land of grief and mourning and the land of the living. I do my best to live in both. That is the only way I know how to be a Grieving Mother.