The other day, my shy daughter, Jasmine, came home from school, flustered, after having discussed some GCSE artwork she had created about the British Transplant Games, which we attended this summer in Coventry as part of Gt Ormond St Hospital’s Renal team @GoshRenal.
The Games are a truly extraordinary experience. Over 1,000 transplant survivors, five to 80+ years-old, compete in a range of events from archery to athletics. The Games celebrate life and raise organ donation awareness (I write this blog during NHS Organ donation week) and during these four days a year, we get to feel ‘normal’.
The picture at the top of this blog is a tiny snippet of Jasmine’s artwork. In it there are flames which represent the fire that is lit at the Games opening ceremony. It honours the people whose deaths saved lives with their organs, and it symbolises the rebirth of the person who gets a new life after transplant.
Jasmine was born with kidney failure and began dialysis when she was 15-days-old, for 12 hours every night, until her dad gave her a kidney when she was big enough to receive it. She was 20-months-old. It was a long and lonely journey with no guarantees. And so, I cry when they light the fire in front of the crowd of transplant competitors, living donors and, deceased donors families. The fire symbolises everything – life and death, love and loss, hope and grief, and hope again.
I was not surprised that Jasmine would want to recreate something so important in her art, but I was really surprised when she said she had talked about it in class as she does not enjoy being in the spotlight. She felt wobbly but she did it anyway. I often wonder about her shyness. Is it nature or nurture? Would she have been any different had she been born ‘normal’, without dialysis and transplants and hospitals? It cannot be easy being raised by a whole team of medical professionals alongside your parents. It is humbling and reassuring (and sometimes frustrating when they ask for the impossible) for us, the parents, but not easy for her, the teenager, not easy at all.
After she had finished talking, Jasmine had to field questions from her friends and classmates:
So how does it work? Did they give you a baby’s kidney? How did it fit in? Did they trim it?
Teenagers are great at asking questions, adults not so good. Often they pretend that it is nothing, no big deal, which in a best case scenario hurts, and in the worst case is life-threatening. I still cannot forgive the know-it-all-Year-1 teacher whose arrogance put my five-year-old Jasmine in hospital.
But, being at the Games is completely different, as Jasmine explains in her theme:
I am never surrounded by people with transplants especially in a positive light. It’s usually in a hospital or environment similar to that… It is also an environment where people can talk about things you usually can’t and share experiences that in a normal environment would raise a lot of questions and gain worried looks. This is personal to me myself as I never talk to or know anyone my age who has been through the same thing and because I myself have had a transplant.
For the four days of the Games, we are with families who have walked a similar path. My girl can relax in ways that she doesn’t normally. Take the scar across her torso, which she says looks like Lego Batman’s nine-pack. In normal life, when she gets changed at school she does it quickly and invisibly in the corner so that no one sees the scar and starts asking all about it. At the Games, she knows the other competitors all have scars. There’s no need to hide. It is not a big deal. No one even mentions scars. It is completely normal.
She also gets to see that other teens have anxious parents, just like us, who rush up constantly, whilst pretending we are calm and cool, with the same questions: Have you taken your tac yet? Have you drunk your water? You look a bit ill. Do you feel okay? And it is not a big deal there, it is completely normal.
Her younger sister sometimes feels like a glass child, the invisible sibling of a child with a chronic illness. At the Games, she knows that the other siblings have gone through times when life can feel like kidney, kidney and more kidney, and they don’t even have to talk about it. More importantly, she doesn’t have to avoid mentioning her sister’s transplant. It’s completely normal. At school, she is vigilant – some kids bully kids who are not ‘normal’. She wouldn’t want to bring unwanted attention to Jasmine by sharing the story that has impacted her life in so many ways, but still feels like it is not her story to tell. At the Games she doesn’t have to tiptoe around, no walking on eggshells, no being careful about what she says to avoid mentioning transplants or medicines or hospitals. It is completely normal.
The Games are a place where my teenagers don’t have to hide.
For me, as a parent, I get to talk to other parents about the journey we’ve been on and those we have met along the way. We remember the patients who died, the kidneys that were lost, and we give thanks for those kidneys that have kept on going. It is hard but important. We talk about battling through the ‘normal’ stuff – the need to constantly repeat ourselves to get what our kids need as we navigate daily life at schools, hospitals, GPs and social events. Most people think of transplant as a transformation before and after story, and in some ways it is, but it is not that simple. There is constant care and extra thought needed to keep a transplant safe which is much more than just taking medicines that can never be forgotten.
And alas, we get to share the very common story of how family and friends have completely disappeared as they couldn’t cope with the not ‘normal’ experiences of transplant life. It is awful but reassuring and it is a relief to get to express anger and grief without some helpful ‘normal’ do-gooder trying to talk us out of it. These moments are as vital as the tips parents share – the ways they have learnt to make sure all our kids stay part of a society which pays lip service to diversity and inclusion but in reality does very little to make sure that happens.
And these important moments happen alongside the wonderful camaraderie in and around the Games, the cheering on of everyone, the medals, the social donor run and the lovely gala dinner which all adds up to one amazing experience quite unlike anything else. It is exhausting and exhilarating and I am so grateful that we get to be a part of it, well aware that it is only made possible by the amazing nurses at GOSH.
The GOSH nurses set up a charity called the Transplant Games Recreation Fund (TGRF) with the sole purpose of raising funds to send a Gosh Renal Team to the Transplant Games every year. Our nurses have been with us and many families over many years through the best and worst of times. They know that while a transplant is a miracle, it can also be hard to live with a chronic illness and everything it entails. They know that so many families after transplant continue to survive but may find it hard to thrive.
Going to the Games supported by the TGRF and our nurses changes that. Our transplant kids get to see that all things are possible, all lives are important and, all lives need to be celebrated.
The nurses are not paid to run this charity, they use their spare time outside of GOSH to organise quiz nights, find sponsors to fund the GOSH Renal team outfits, transport, accommodation, and social activities, and that is before planning outfits, transport, accommodation and socials. It takes so much work but they do it cheerfully and unfailingly, year in and year out.
If you have a moment today, please spare a thought for our nurses and the TGRF and even better if you can, please give them some money:
Donations can be made via the TGRF website, or direct here using Wonderful.org. Alternatively, you can raise funds free of charge by doing your usual online shopping, just register with easy funding via this link: https://www.easyfundraising.org.uk/causes/transplantgamesrecreationalfund/ .
Help them help families like ours feel normal.