My nursing collegues will be aware of The Kubler-Ross model, or the five stages of grief, it's the series of emotional stages that one experiences when faced with death or the death of a loved one. The five stages are denial, anger, bargaining , depression and acceptance. These stages can happen in any order and you can bounce from one to the next quite regularly.
I think this can transfer well and work for other life experiences including what I have been through with Eloise being a fit and well toddler to suddenly needing a heart transplant.
Denial - not too sure about this one though as I feel I'm a realist so not sure I have ever been in denial. But then again could this mean being totally open and honest about how you are feeling ? Do I try to shut out the seriousness of the situation ? I think I'm quite honest with people if they ask about Eloise's long term future. You may think differently though !
Anger- now this I have and quite often as well. "Why my child?" "Why did that virus destroy her heart ?" "It's not fair!" I'm angry with hand , foot and mouth virus, angry Eloise got myocarditis, an innocent child at the beginning of her life. I also get angry with myself at times , did I miss something ? Why didn't I see she was unwell ? All illogical I know but these aren't logical feelings. I must state that I'm not often in a state of rage and being rubbish at anger it's more likely to manifest in me as tears. Sorry to those who experienced soggy shoulders last year !
Bargaining - now who hasn't bargained in life ? I've made the odd pact with a "god" for extra time for my girl. I'm not religious but when death is looking over your shoulder at your child you still pray and bargain. I'm not proud to say I bargained my pregnancy with Millie ( I was bleeding ) if I could have had Eloise perfectly fit and well again. Obviously knowing this wasn't going to happen !
Depression - now I don't think I'm a depressed person , I'm an optomist but that doesn't mean I never struggle or get sad. I do ! I actually go quiet at times of stress, lock myself down a little into self preservation mode I guess. I have good coping strategies but honestly at times I just wing it ! I don't have black moods and I'm generally ok but that's now . In the early post transplant days this was a lot harder, I kept looking at a future without my child in it , now I manage to live in the present most of the time. I think this is the best place to be, the past has gone and cannot be changed and the future may not be mine.
Acceptance- really ? Tough one isn't it ?
How do you accept that your healthy child is dying ?
How do you accept another child needs to die to let yours live ?
How do you deal with knowing your child is life limited ?
How do you come to terms with what you have seen and been through ?
You just do, because life goes on , your child needs you .
See I think acceptance makes me bounce to anger quite often !
The difference with all this is that another family are going through these 5 stages because their daughter died and became Eloise's life saver. Eloise was one of the lucky ones she received a heart transplant against the odds, 27 children are currently waiting for what she received. She has had nearly 12 years of good health because of Zara. I have to accept this situation with Eloise because she is here with me tonight , alive because of organ donation.
I wrote this in Eloise's Facebook Group in May last year
"Anniversary looming, I suppose it's still very much like a bereavement but I have not been bereaved, there is still that sense of loss if that makes sense. In the stages of grief I am unsure I will ever stay on acceptance but anger surfaces rarely it's a wasted emotion. Then there is guilt , survivors guilt my child is here alive, while the donor family's baby has passed away. These feelings are fleeting but I want you to know they are there. I am and always will be an optomist that for me is a way of coping. I do cope, not because I have to because I want to, because I can. My life, our life is a good one, we're lucky it's like a sunny day but sometimes a tiny rain cloud gets in the way. But as the saying goes "there can be no sunshine without rain ."
