Harnessing my Demons.
The memories of that day are vivid, conversations, noises, monitors, whimpering Eloise, sights, then pain such unbelievable pain. Life changing, just one sentence, "your child has cardiomyopathy" no make it just the one heart destroying word "cardiomyopathy " Such a bastard disease, my daughter was a ticking time bomb with an enlarged poorly, contracting heart that was barely functioning yet her little body had compensated for this for weeks. The picture blew was taken just four days prior to her being admitted to hospital, there is no sign that Eloise was so seriously ill.
Later I was to find out that myocarditis caused by my nemesis hand, foot and mouth virus had caused the cardiomyopathy. I remember sitting there staring into space, trying to listen to the Drs words as I felt fainter and fainter. I was cold , clammy and extremely nauseated. Bristol kids A/E room one, the walls started to close in on me. That feeling of fear stayed with me constantly for many weeks, months maybe a whole year. Even now it continues to weave it's way through my life. It's fair to say fear is lodged in my heart and mind because nothing post heart transplant can be taken for granted. The last fourteen years have shown me that. Eloise has had her tough times and sadly we have lost transplant friends to complications . It's hard not knowing what is going on inside your child's body as even when seriously ill with a big enough pericardial effusion (fluid around the heart) to cause her heart to tamponade ( compression of the heart) she was walking around looking fantastic !
It's very hard being a mother anyway but add in a child with a serious, potentially life limiting condition it knocks you for six. It's hard to know how to act. In the beginning I felt like not sending Eloise back to nursery, then a few years later I didn't want her to go to school. If the time I had with her was going to be limited I didn't want to share her. I didn't want to miss one precious minute. But it doesn't work like that, life has to be as normal as possible, Eloise needs a normal childhood and the same chances in life and experiences as her peers.
It does feel wrong letting that one date still eat away at me . I try to see it positively when I'm thinking more rationally . Eloise survived, she fought back, cardiomyopathy didn't claim her life, just her heart, but that's a bloody important part! I know I'm lucky she's here and that mainly her post transplant life has been complication free but each year she's here the problems seem to increase and I'm not afraid to say I'm scared. I love her so much and I cannot look into the future as I'm afraid she won't be in it. There I've said it, I am optimistic and yes of course there is always hope. But there has to be an element of realism sadly post heart transplant complications exist. Of course Eloise will prove me wrong and medicine will advance at great speed......it had too. I went to an NHSBT patients advisory meeting the other week and a Cardiothoracic Dr from Glasgow said "its a good time to be alive." I'll hold onto those words.
So let me think now about my medical miracle Eloise. She survived for weeks with a heart that was barely functioning. She survived being sedated to be intubated and then she survived two weeks in intensive care at Bristol Royal Childrens Hospital. She survived being flown by air ambulance to the Freeman. She survived two cardiac arrests . She survived waiting for a transplant. She then survived being on bypass and the actual heart transplant surgery . She has survived so many anaesthetics, angiograms and biopsies. She's survived two episodes of rejection and is living with a persistent pericardial effusion. Looking at it like that my child is an amazing fighter with a good track record on surviving ! I'm proud of my Warrior Maiden.
Eloise is growing into a fine young woman, she's fun , quirky and a computer geek. She loves life, school, her friends , her tortoises, sometimes her siblings. Take French lessons out of her life and I think she'd say it was perfect. She would rather have a cardiac procedure than learn French as it stresses her out. But that's normal teenage life and she'll just have to get on with it.
So the 23rd of May, I'm ready for you once again, I'll not let you win. I am already experiencing horrendous dreams and daytime flashbacks, vivid pictures with sound. Eloise being echoed and the Dr treating me as a nurse not a mother. Trying so hard to soothe Eloise as she's repeatedly cannulated unsuccessfully and so desperately wanting the dr to stop. The feel of her body cold and deathly still as she lies on a cooling mat. Whole painful , devastating conversations with her consultant, sitting in a soulless room being told her chances of survival and the bleak odds she was up against. I'm already feeling on edge, unsettled, my stomach churns and I feel sick at times. I'm often left feeling light headed, out of sorts and my heart palpitations are frequently occurring which isn't great at the gym ! So it feels like one of my best coping mechanisms exercise is eluding me. I'm trying to keep busy and I'm spending as much time as I can in the sun with a book. I just know most of these things are stress responses so I'm trying to balance them out with coping strategies.
This year I'm at work as well, the place where my World came crashing down but also the place where my daughter was kept stable enough to be transferred to Newcastle for a transplant assessment. The hospital and the people in it will always be very special to me, so perhaps I'm better off being there with people who have always been by my side. So please excuse me if I'm not at my best. I'm just dealing with a lot of emotion in the best way I can. I'll try to embrace the day and my demons. ❤️
