Cindi was the love of my life. She came to me as a foster care child when she had just turned 18. She looked like a barbie doll and was so fragile. She barely weighed 60 lbs. That was in 1999. For many years I loved her so very much. She could sort of talk. For some reason she mixed up the fact that my dog of the time was named Heidi and I was named Mary. Forever after she called me Heidi. When she wanted me she could make Heidi into a four syllable lengthy word. So many happy memories up until this last year. Then it was like everything fell apart. She had Leigh's syndrome. She was Developmentally Disabled but physically she was so pretty. I knew going into this that her life expectancy was 20-30 years. But I truly believed we could defy the odds. She first got aspiration pneumonia in March of 2018. She lost a lot of weight. Her skinny little body developed a skin breakdown at that time. Doctors recommended we do a colostomy and a skin flap surgery. I think it was just too much for her. In August she once again had a UTI and aspiration pneumonia. Back to Intensive Care we went. For over a month I asked her to keep fighting. She was on a respirator and had developed a bone infection. She was in pain. It was unlikely she would ever again live without a respirator. On September 28 I agreed to let her go. Why? Exhaustion from living in a hospital for weeks, too many people telling me she had no chance, seeing her in pain? But everyday I question myself. Did I give up too soon? Even after they turned off the respirator she fought to live. She breathed on her own for three days before her poor little body died. The grief, the guilt, it consumes me. She lived to be 38 but I never saw a world that had me and not her. Children should not die before the parent. I wake up in the middle of the night and go in to check on Cindi but she is not there. The guilt- I made the decision to kill her. I allowed her feeding to be stopped. I allowed her respirator to be turned off. I feel like I murdered her- my pretty little Barbie doll girl that I loved more than my own birth children.
Mary, I'm so sorry for your loss. Losing a child is something no parent should ever have to experience, and it sounds like it has been further complicated by all the lingering questions and what if's left in the wake of the loss. I won't say anything to try and make you feel better, as I imagine you have people around you who have already done that, but I do want to ask you a question and it's one I often ask grievers....did you do the best you could with the information you had the time? Obviously this decision to take your daughter off life support was a big one, and one that I am certain you did not take lightly. I'm sure it's not one the doctors or medical staff took lightly either, so that only after a lot of care and consideration was this impossible decision made. When all is said and done and our loved one is gone, it's natural to think that we should have done something else. How could we not? This was the outcome we would never want. So of course it feels like every other decision would have led to anything but this. But we can't know that, and a very important task in grieving is to remind ourselves of the love, care and consideration we put into every decision at every turn. Forgiving yourself or letting yourself off the hook doesn't mean that you will instantly feel better, but it does create a step toward healing. A future that allows you to hold on to the love and to the memories and to remember the beautiful life you shared with your daughter, without constantly punishing yourself for everything you "should" have done differently. I hope it's a place you can find yourself at some point and I hope that getting some support can help. I'm glad you've found us. We're here to help~
If I ever get to the place where I can change my vote from Am I a Murderer to simply death of a child that will be good. I am nowhere near that point. I look in the mirror and think- "There she is- the woman who turned off her daughter's life support." On my phone home screen I have a picture of her four days before she died and she was smiling. I think I would cope better if she had died soon after the respirator was turned off but she fought to breath for three days. Three long days of watching her heavily sedated but still fighting to breathe. Cancer would have been easier. There you know the disease is killing the body and you can accept the inevitable end that will come. But to watch her, even when heavily sedated still fighting to breathe? That is why I feel like I murdered her.
Hi Mary, my deepest condolences. I don't think I would use the word "murderer", and I don't see you that way at all. Perhaps "assisted death", or "euthanasia". I'm not sure on the correct word, but to me murder = hate. What you did = LOVE. You didn't decide to "kill her", you decided to help her by not letting her live in pain and fear, in those dreadful hospitals, surrounded by all the awfulness. You're suffering now because you chose to sacrifice yourself, to suffer so she wouldn't. Don't let the guilt eat you up, you did what strong, loving mother's do and placed your daughter's needs befor your own. That's something to be proud of. I wish you the very best in these hard times.
