Here we are 10/06/2017 , 15 years since Eloise's heart transplant was performed at The Freeman Hospital in Newcastle. It seems crazy that she needed a transplant because of a toddler illness, just a virus. This 15 year milestone has never been promised so it's a wonderful day to celebrate . I shall reflect on every extra year of good post transplant health Eloise has been gifted. Then dream of all those years waiting to be filled with adventures by my warrior maiden.
Every time I meet someone new and they hear Eloise's story it comes as a shock to them that her heart transplant may not last. Most people think it will last an average life time but sadly that's not the case. Thankfully we do know people who are thirty years plus post transplant so they give us hope and something to aim for. Maybe a Guinness World Record ? All I can hope for is an extra day with my precious girl, that leads into an extra week, an extra month, extra year, extra decade . So that the days keep coming and we keep making memories.
Having a potentially life limited child changes your outlook on life. You understand what's worth fighting for and what to let go. You make the most of every day even if it's sometimes difficult to find something good in a day you can if you look hard enough. The little things are so important. Having a happy and healthy child is everything, I have that four times over so I'm very blessed. I just have to work harder to keep one of them healthy but it's bloody worth it. Even when she's glaring at me when I make her move from her computer chair !
This past School year has seen Eloise turn 16 and leave Secondary school ! This is so amazing, I remember being so scared that she'd never start school. I then feared her dying whilst at Primary School. This moved onto wondering if her chosen Secondary school was suitable for a wheelchair etc. This led to discussions with her new head teacher about her medical needs and the only reassurance I got from him was an ambulance could get to the school quickly.....hmmmmmm ! So another education chapter is ending, Eloise only has a handful of GCSE exams to do now and a prom to attend. Then a Summer of freedom before hopefully starting Six Form in September at the grand old age of 17 to do A'levels. Then there's even been a bit of thinking of the future, there's a Foundation Course Eloise would like to do, then possibly a degree. To have a future when 15 years ago you lay dying is nothing short of a miracle.
Just a virus, a virus that changed the direction of our lives forever. Nearly taking away Eloise's life and changing our outlook completely. Although Eloise is a myocarditis survivor her heart wasn't and without a heart transplant she'd have died 15 years ago. I feel so much anger towards that coxsachie b virus, just why did Eloise have to have the rare complication of hand, foot and mouth? But time has shown me that there isn't an answer and the if's, why's, maybe's will never go away but I can't let them destroy me. Acceptance is hard but I do see the occasional glimmer of it. Other than popping pills and the hospital appointments Eloise has to attend we can forget about transplantation quite a lot. We have every reason to smile, especially as some of our transplant friends aren't as lucky as Eloise but they still live for the moment and keep smiling. If they can do that I have no excuse !
Of course without Eloise's courageous donor family none of these years would have been lived and loved. Without them I'd be lost . Rebecca, Zara's mummy is one amazing lady, our emails have been bouncing back and forth all week. It's a difficult and bitter sweet time for me but for her it's the anniversary of Zara's death. Yet she thought of me ! I sent her photographs of Eloise with the balloon this morning, she thought she looked really healthy. I also made her emotional as Eloise will be wearing a "Z" brooch to her prom and I shared a picture of it with her. I'm acutely aware that Zara should also be choosing her prom dress right now and sitting her GCSEs . Sadly more milestones never to be reached.
So today another wooden heart has been added to Eloise's box of pretty coloured hearts. I also bought her these two hand crafted wooden interconnecting hearts in beautiful coloured wood. Their lids are fixed on by magnets so they can swivel open or just be removed. A fitting gift for a very important post transplant milestone.
Then of course there was cake this evening, fifteen candles, fifteen white chocolate hearts on a butterfly cake. Eloise loves cake !
