Friday, 24 October 2014

Day Fourteen

1. My Inspiration 

This is the beautiful Kourtney Crystal. Kourtney lives thousands of miles away, across the seas in LA, California. Until yesterday, I had never heart of her. Today, she is my biggest inspiration! You see, Kourtney had the exact same second transplant that William is now waiting for, a small bowel, colon, liver and pancreas. That was three years ago and look how amazing and beautiful she is. Kourtney is twelve, two years older than Wills and dreams of coming to London one day to see Big Ben as she loves Peter Pan. William dreams of going to Florida to Disney World because he loves Pirates of the Caribbean and the ride that inspired the move is right there. Two children who dream of travelling to each other’s countries because of pirate inspired movies. And soon I hope and believe, two children who will have something even bigger in common.

Yesterday, our amazing specialist at Birmingham Children’s Hospital emailed me, as she was walking out of the door to a holiday, to give me some information and contacts for children who have come through this re-transplant with the teams our team work closely with in the US. Meanwhile, a friend, J, whose beautiful daughter, M, who lives in new Zealand but had her intestinal transplant in the US, shared the piece in our local paper this week and asked if anyone who has had this re-transplant could get in touch. So far, we know of three children through Facebook and two from our team’s colleagues in the US and are making new friends with some. I can’t begin to say what a weight it is off my back, not describe the smile on my face today.

Our Birmingham small bowel transplant family are a small and tight one and those who have been around in it long enough to remember will know the children who sadly became angels after their second transplants. This means that whenever I talk about it they can only share with me the stories they know, always finishing with something along the lines of ‘the team have advanced loads since then, things have come on, Wills will do great!’ which is true and reassuring. But, if I called any of these people up or messaged them online after his transplant to say, ‘hey, we have hit this problem or that problem,’ I know the stories of other children who had hit the same would be hard to hear. Now, we have new friends to ask who will be able to say something more along the lines of, ’that’s tough, but we did too and they did x,y,z, it was scary, it was hard but we came through.’ This means so, so much.

It is fitting that Kourtney is pictured standing here in front of the word ‘inspire.’ She is inspiring me the whole time now.  I will be printing that picture and putting it on the notice board and also into my rescue box. I hope there will soon be others there with this one too.

2.  Three A Day 

We are now at the end of the second week of this blog. In the last for teen days, forty-two people in the UK have died waiting for organ transplants because there are not enough donors. I wrote and shared a poem a few days ago called,  A Part of Me, about the wonderful, positive things that come from donating organs. Today, I tried to write about the impact of the lack of awareness there is towards organ donation. This is a very rough and drafty idea of a poem at the moment and needs more work...

Three mother’s hearts are broken
Three homes have fallen still and silent
Three groups of friends are holding each other up
Three children have been told their daddy will never come home again
Three of the biggest hope’s put out to the world this morning have been smothered
Three lights burning with endless of possibilities snuffed into darkness
Three medical teams are feeling helpless
Three precious lives are over

Three people could have changed all of this
if only they had known

3.  The Key

I packed two pairs of pyjamas, the softest I could find and a couple of sizes bigger than you to be extra comfy over your wounds.
I packed your slippers for your first tentative steps out of bed
I packed your cuddly friends for bedtime
I packed your favourite books and films to take you on adventures away from your pain
I packed empty drawing books and note books ready to be filled with your new life
and the brightest felt tips I could find to make sure it is as vibrant as can be
I packed all of my energy to boost you when recovery seems unachievable
I packed my biggest promises that each day will get a little bit easier
I packed my deepest cuddles for the days that hurt the most
I packed all the love that would fit

I packed it all into a suitcase and put it out on the hall
ready for someone to gift us they key that will open it

(another rough and crafty idea of a poem)

If you are not on the organ donor register, please do click here for more information and to sign up.

If you are enjoying this blog, please help me to keep going and help crowdfund my Three A Day: Waiting project  and get some lovely postcards and an anthology, limited for only those who support and invest in the project.

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