Charting the treatment and progress of our amazing son, Samuel as we begin our adventure of living with Cystic Fibrosis
(If this is your first time visiting, don't forget to look at the 'Introduction' and 'Early Days' pages)
For a while now I have wanted to write a post about organ donation because quite simply it saves the lives of many people with Cystic Fibrosis (CF). I hope this post is more about what you think then what I think.
I always thought it was a good idea to be on the organ donor register but never did it, Mark was the same. After Sammy's diagnosis Mark started reading about people with CF who have had lung transplants, lung and heart transplants and pancreas transplants. A few days later he joined the organ donor register and told me so. At this point the decision to join the register was so crystal clear for me. When I die, someone else might have a new lease of life from my lungs, someone like my own son and in many many years to come if Sammy should need a transplant I would hope there would be enough people on the register to provide a new breath of life to him too.
It's very simple to join the register, in fact quicker then filling out any other form on the internet. If you have always meant to do it please just register now, if you have never considered it, please do. The organ donor register website answers questions you may have and also has information about how organ donation is viewed by different religions. It has lots of reasons for being on the register which I will leave you to read in your own time, I will just share this one sentence as it resonated with me. "One donor can save the life of several people, restore the sight of two others and improve the quality of life of many more."
https://www.organdonation.nhs.uk
When I completed the form I stopped for a moment to consider whether I wanted my eyes used and then thought what will I need them for? They will just be buried along with some other bits of body, they are no use to me or anyone if buried in the dirt. Life is for living, embracing wonders, love and shared experiences. I see that now with more clarity then ever before in my life.
'And my running feet could fly, each breath screaming:'We are all too young to die!'
(Lyrics from 'Between two lungs' by Florence and the Machine. This song has been playing in my head regularly since diagnosis and the lyrics have taken on a completely new meaning to me.)
If you think you can, please sign the register, don't leave it for someone else to do. According to the CF trust 1 in 3 people with CF who are waiting for a lung transplant die waiting as there are not enough people on the register. These are people in their twenties and thirties, people who should have their who life ahead of them. They are someone's son or daughter so please help them.
PS by Mark
I just wanted to add a few words of my own to Juliette’s post and to also urge everyone to add their name to the donor register, but also importantly to let your family know your wishes. The already small numbers of donations is considerably reduced by familes refusing organ donation even though the deceased has joined the register. So it is important that you let your family know so that they will be better prepared to respect your wishes. This poster from the Organ Donation makes for interesting yet depressing reading:
In Judaism we are told that the reason G-d created the human race from one single person was to teach us about the incredible potential of a single life. The Talmud says "Whoever destroys a soul, it is considered as if he destroyed an entire world. And whoever saves a life, it is considered as if he saved an entire world." It is in your power to save the world, so be a superhero and please sign up today. And for anyone who wants to hear 'Between two lungs' here it is:
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