Mothers Day Thoughts

Happy Mothers Day ? 

For me indeed it is a Happy Mothers Day, I'm one of the lucky ones today I spent the day with the four people who mean the World to me my children. 

                                     

It could have been so different though. As a mother I gave my children life by creating them, carrying them and giving birth to them. But only another mother's brave selfless decision let me keep my daughter Eloise. She too gave my daughter life by donating her babies organs. This incredible woman won't have found this day an easy one especially as this year it follows on from her daughters 13th Birthday. I know every day when your child dies must be a hard one but days like today must smack you right in the face.

         I've felt that more this year than any . I suppose being in contact with Eloise's donor mum I know now how she is feelng this weekend. We do discuss such things and have an understanding. It's all more real. I don't feel guilty about my happiness or feel I cannot share my day with you but I'm feeling for her and many others more deeply this year. Also within the Heart Transplant Support group mothers are going through incredibly tough times. Children literally just clinging onto life. One of their children potentially dying without a donor and separated from the rest of their children today. Also sadly more children have died pre and post transplant so their mummys are grieving. Through social media in the last year I have met incredible donor mums,  again their children are no longer here. So if I'm finding it hard just thinking about being in their position how torturous are they finding it ? Every tweet, every FB status all about Mothers Day, surrounded by it all engulfing. It's just one day but an emotionally tough one. For them I want it to be over and tomorrow to bring them a better day. 

My Day - my day started really well if a little bleary eyed from 5 hours sleep ! With the arrival of this .

        

 

A homemade Red Velvet Cake which Leah baked last night while I was out. I was so touched and a few daffodils pinched from the Park ! The cake deliverer also brought a most welcome cup of tea ! 

      

Henry had made me a lovely card at school which he's very proud of rightly so ! He's so cute ! 

  

                                     

Lunch was an enjoyable event in the W G Grace Pub, just happy not to have to cook and clean up even if I had to pay ! 

 

Had some lovely un-pinched tulips from the girls and some little bath bombs I adore, so I'm a very lucky mummy. 

                                       

 This evening we have just released a balloon to all the angels but especially for Zara, to remember and reflect on the reason why Eloise is still here. We cannot ever forget that little girl and her mummy. Two lives forever entwined .

                                    

So I will spend the rest of the day thinking how lucky I am to have my four beautiful children here with me this evening , alive, well and for the most part happy. I've lit these two candles in my bedroom .

     

            

 Love to you on Mothers Day xxxx

5 Stages of Grief

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 ." 

The Box

I wonder how many of you live with a box in your head ? A box of difficult memories , feelings and fears. Your box maybe open and therefore easy to deal with, your box maybe padlocked tightly shut for fear of the things inside ever coming out.

 The lid on my box is loose. I could let everything in there out in one whirling explosion but I'm not sure that's the best way for me. At the end of the day it's my box and only I know what is inside it. I feel everything in it has shaped and strengthened me to make me the person I am today. Some may not agree but hell this is my reality. I don't look in the box very often, not because I'm afraid or avoiding it but because I am happy and life is balanced .

Somethings in the box I will readily share,hoping my experiences help others with their emotions, grief or situation. I'm not going to share all the contents with you, not now. Probably not ever in such a public way but on a one to one, a need to know I will share every content in that box. There is nothing in there to be ashamed of , just some memories are just for me.

Of course you all know the main thing in the box is Eloise, her diagnosis with viral cardiomyopathy. The date 23/05/2002 is etched into the box. Thinking your child had a chest infection then finding out infact they have heart failure and they are unlikely to survive the night, a huge shock, a life changer. I remember the day quite vividly in colour if that makes sense. I remember when I was told, the echo that was performed in front of me, fainting, telling my parents and Steve. The long painful talk with Dr Martin in the quiet room on PICU. Seeing Eloise on the ventilator lying on a cooling mat that made her feel like refrigerated meat not my child. It's all still with me. That and all the agonising days that followed. I planned her funeral, it feels wrong that I gave up on her but I guess I was trying to imagine the worse so everything else seemed a little better than that. So in the box is everything from Eloise being in Bristol to her transfer to Newcastle, her transplant and her return to GOSH. I can talk of this time with any of you and not become upset but I don't want to feel this pain everyday hence the need for it to be bubble wrapped and boxed. I guess a lot of the first year or so was painful, hard to digest , a perfectly well child now life limited with a statistical time scale of how long she would live also etched into the box. 5 years, 5 short years that is what I was told to expect , 10 if she was lucky ( she was lucky ) I feel selfish or greedy now that so many little transplant friends didn't even get those 5 precious years.

Another thing in the box is my miscarriage , I guess for the reason I don't want to forget that pregnancy  totally. Society expects you to move on I have 4 children and Henry arrived after this miscarriage. I totally appreciate if pregnancy number 4 had continued there would have been no Henry, what a thought ! But at that time I planned that potential child, he had a future. I had dreams, I think you do from the time you see a positive test. I happily went to my 12 week dating scan to be told after a lot of prodding around that my pregnancy had ended 2 weeks previously. I ended up needing a surgical procedure to remove the pregnancy and of course me being me this didn't go entirely to plan . I ended up back in hospital after haemorrhaging at home. Anyway that's Chip ( his nickname) as a mother I won't forget this although everyone else will which is fine. Again more than happy to talk about this, more people should it's good for women to talk about this subject.

Also in the box, the Suicide of a friend a dear friend , my confidante , my rock. I do believe suicide is painful for those left behind. So much "what if " and why didn't I notice . He was my friend , his parents son, a brother, a nephew the list goes on. None of us were enough to keep him here, his demons too strong.

So that's some of the contents in my Box, certain days make me take a peep inside , anniversaries I guess, or seeing a certain photograph or hearing a song. I guess that saying what doesn't kill you makes you stronger is true. Although at the time the grief can floor you.

Torn

Torn

Heart Transplant Families UK has now been running for 2.5 years, I started it in August 2011 with 26 members all mum's of paediatric transplant recepients it now has 353 members from all the UK Transplant Centres. 

    Lately we have experienced a lot of sadness and deaths in the group, deaths of young transplanted children. This is hard to comprehend , why do some transplantees have 20 years others just 1 or 2 ? I think it always brings it home that nothing post transplant is guaranteed , it's still a lottery of survival. No different really to when listed for a transplant. It makes us all feel vulnerable. Also because of the group some of us know these children face to face, they aren't just names. Our children know them, have played in clinic together, shared the transplant accommodation or been in the next bed on the ward. Without the group I guess some of our relationships with each other wouldn't have formed. But that's just it because of the group when these tragedies happen we support each other, we continue to look after these families. They are still very much part of our Transplant Family.

       I guess though that is why at times I am torn, I'm sure a lot of transplant families like mine feel the same. Do you get to know other families and share a fraction of their pain when things go wrong or do you not get involved in the transplant community ? I guess we are drawn to each other anyway, a common ground an unspoken understanding. Something that people not in our World find hard to understand. I think that is why I have enjoyed setting up our Heart Transplant Families UK Community Page on there we share our stories and thoughts with the general public. They get a glimpse and a level of understanding of the realities of transplantation. https://www.facebook.com/HeartTransplantFamiliesUk?ref=hl

    Torn.  I think sometimes it would be easier to walk away from the group as you can imagine at times there are arguments , differences of opinion and clashes of personality. As admin to the group I have always stayed publicly neutral that is not to say behind the scenes that I do not have a strong opinion. I find it hard not ranting at people, I'm only human. I do feel pressure to keep everyone happy and provide a useful supportive group. However some days like yesterday you have to say do you know what you are getting nowhere, turn off FaceBook and go and enjoy your day. After deleting a couple of posts including my own.....The group is only a small part of my life I just have to realise I will never please everyone. You cannot let it take over your life. So we'll see what today brings. I know in reality I cannot walk away I know the majority of group members appreciate what goes on behind the scenes so to speak to keep the group ticking over. I had some lovely private messages of support yesterday so I guess they go to balance the negativity ! 

     Torn. I guess it all lies in how much you let yourself be defined as a heart transplant recipient , a heart transplant family or in my case as well a transplant mum. It's getting the balance right. Dipping into the group, into transplant media, research etc but not letting it swallow you whole. Keeping it boxed in a separate part of your brain and then going and enjoying that "normal" life we so want for our transplanted loved ones. Eloise is only one of my children , I have three other wonderful children they all need me and are all as equally as important and special. 

So no major conclusion to this blog post, I will probably remain torn at times but that's ok. I know I have transplant mums and adult transplant recipients amongst my closest of friends. They understand me on that transplant world level but we have also clicked anyway. Transplantation was the common ground we shared initially but our relationships are now so much more than that. So I thank you Heart Transplant Families UK and @HTF_UK for bringing these lovely people into my life. I love them dearly. #UnitedWeStand