Monday, 3 October 2011

The day that changed our lives....

It's hard to believe how different my life was on this same date four years ago.
I had a different career, my son was a baby and I was married - to a very sick husband.
We've split up now, but we spent 13 years together, and we went through hell and back together too - not least on October 3rd, 2007.
It was in the February of that year that he started to get sick. We had always known it was coming but the doctors were keeping a close eye and thought he'd have another 20 years of decent health at least.
He was born with a liver condition (I won't bore you with the science) but he'd always lived a pretty normal life. I had to be tested to ensure I didn't have a dodgy gene, but when that came back clear, we decided to start a family.
If I'd known then what was coming, would I have made that same decision? I have to say no. I love my son to bits but he, and I, had it so tough in those early days. He's had to be so resilient my boy, too resilient, and I neglected him emotionally. That's really hard to admit but my husband demanded that I put him first and I did.
My husband's decline was rapid, and he was in and out of hospital for the next few months. I struggled to look after my son, nurse him and hold down a full time job. With nursery costs and only his statutory sick pay, it was tough, beyond tough.
That summer, we travelled to Birmingham to see Britain's top liver specialist and he told us that my husband was going to be put on the transplant list.
His pain and the complications had become so unbearable by then that we both cried with relief. He was so swollen and yellow that he was almost unrecognisable, he was plagued by constant cramps and pins and needles and to top it all off, he was impotent. And that's without the terrible pain. He could barely walk some days. And sleeping, forget it.
We used to joke that at least he still had his hair, and although he couldn't do anything with it, his manhood was the size of a marrow!
I wish I could say that what hurt him the most was not being able to play with his son, but by that stage, my little boy was a competitor for my time, my affection and my sympathy. There was only so much of me to go around and it wasn't long before there was none of me left.
But back to October 3rd. After a week of tests in hospital in Birmingham (a good hour away from home), and another 10 days stay after that due to getting an infection – his immune system was so weak this was almost a weekly occurrence by then – he finally made it on to the list in August.
You never know how long you will be on that list but it's a place of limbo. You have to hit the pause button on your life. And every time the phone rings, you feel a wave of nausea and a huge hit of adrenaline.
Ironically, when the call finally came, we were in Ikea, and with no phone signal, we missed it! But it's a fallacy that you only have minutes to respond. When the 'match' comes, you have hours to get there, and as soon as we picked up the message, we sped back from Bristol, dropped our son of at my mum's (all bags had been packed for months) and drove to Birmingham.
It's then, when the excitement starts to fade, that reality hits home. With the transplant scheduled for 7am the next morning, we settled in for the longest night of our lives, struck dumb by the enormity of what lay ahead.
And then the transplant co-ordinator walked in, with news of the donor. A man not much older than my husband who had died suddenly that night.
I sat there and thought about a family sat in another hospital that night, maybe even the same one, and I cried for them. And, call me selfish, but I cried for us too.
What a cruel twist of fate – that their family's loss was my family's gain. And that our fate was in their hands.
You never imagine that one day you could be giving permission for your son or brother's organs to be donated. I can't even imagine what it's like being asked to make that call.
That man's organs went to six different people – that's six families whose lives were changed forever, for the better, for the fact that one man was on a list. I hope his family take some comfort from that as they mark the anniversary of his death today
In our case, it has meant that my son is growing up with a father who is now very much a part of his life. We may have separated but he's a better dad and a better person than he ever was before. Now I'm not around, he has to look after himself and work hard at being a parent, and it's been the making of him.
His son is his world - he takes him to rugby, to tennis, to Tae Kwon Do, to school – just like any other daddy, and I hope to god that he realises how lucky he is. I hope that my son will understand that one day too.
I don't believe in a nanny state – live and let live I say - but I do believe that people should be registered as organ donors unless they choose to opt out.
So many people want to sign up but never quite get round to it. And that's a crying shame for all those families whose close ones die while on 'the list'.
So please, if you want to register, don't delay. It's so easy to do, just go to
Become an organ donor, because it will be the last thing you do....

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