You never know what life will throw at you! In 2004, my stable life with two healthy daughters was rocked to the core when I gave birth to William, a little boy with complex needs. Life was never the same again. We've come through living in hospitals, a small bowel transplant and coming to terms with Asperger's Syndrome and I'm finding life all the richer for it.
Monday, July 06, 2009
A Lovely But Emotional Weekend
William's new special friend
And another special friend
The lovely Holly, making butterflies with Hope and William
And Ellie hard at work with hers
Planting the Memory Rose
Hope, Ellie, William and I travelled back up to Birmingham over the weekend to go to the Donor Family Network gathering and Thanksgiving Service. We had a wonderful and emotional weekend.
We stayed with a lovely family and made some great new friends. We felt so relaxed with them and had lots of laughs and fun. The children were all up playing and watching DVDs until midnight on Friday, with William asleep on the sofa between them. The adults were sipping wine and chatting and the rest of our time with them followed on in the same way. It was hard to believe we had only just met. William was particularly taken with the family dog. He was somewhat worried at first and declared that he wanted to go home as soon but would not leave her by the end of breakfast time the next morning. The children haven't yet stopped talking about their new friends, the fun we had with them and their hope that it won't be the last time they see them.
The Donor Family Network meet was an emotional day. I felt very privledged to be there with all these wonderful people who have donated organs. I spent a lot of the morning with the children, settling them into their craft workshops but did find time to catch up with the lovely Holly and Oli. I also managed to catch part of a workshop led by recipient donor co-ordinators which I found really interesting. It was a fascinating, emotional, of course, insight into what happens on the other side of the gift on transplant day. We had a very nice lunch, during which we were asked by 'Aunty P' to speak about our experiences as transplant recipients as part of the next session, which was in the main hall and involved everyone. This was the first time I have spoken about William's transplant journey. I followed Holly reading a very beautiful poem and Oli speaking with great confidence about his own transplant. I was very nervous and emotional and nearly got overcome a couple of times. I didn't have anything prepared and was conscious not to say the same things as I was planning to in the address that I had prepared for the service the next day. I think I managed to get our story across in a sensitive way. It is especially hard to talk to donor families as you feel conscious that your story is happy where their's ended in tragedy. It was clear that these families really wanted to hear our storied though and drew strength and encouragement from them. This is the way of the transplant community. We are one big family that are always there for each other. We are so lucky to have each other. My transplant family grew a whole lot bigger over the weekend with new friends that we are looking foreward to meeting again at the transplant games in July. Some of the donor families will be there, cheering on the participants and awarding medals.
After the recipient talks, the really moving part of the day came with families being awarded certificates and angels to commemorate their loved ones. This was done against a back drop of a slide show of photos and accompanied by music. I doubt a single adult in the room had dry eyes. After the ceremony we planted a rose. The families wrote tributes to be planted in with compost with the rose. I wrote a short and simple thank-you to our donor. William was presented with his own angel to remember his donor by. It is now hanging over a frame of photos depicting his transplant journey.
In the evening, I had the opportunity to go out for a meal with Aunty P, Holly and the Donor Family Netork Trustees but opted to stay 'home' with the children and our host family. We had another lovely evening. The children played hide and seek and bounced on the trampoline and the adults chatted some more. We had an earlier night though as adults and children alike were tired after Friday.
On Sunday, we went to church with Aunty P and then met with Holly who treated us all to a greasy cafe brunch sandwich. Thanks Holly, my shout next time! It was then time for the 'Giving for Living' Thanksgiving Service. I was giving the address so pretty nervous. The service began with welcomes and then the wife of a donor lit the Paschal (Easter) candle. Holly, Holly's parents, Hope, Ellie, William and I lit seven candles from it to represent the seven main organs given for transplant (including the small bowel) and the main candle was extinguished to represent that the donor's life is over once the organs are given. It was very moving. The lady who lit the candle gave a really interesting and moving reflection on her experiences. She described being asked about organ donation as a glimmer of hope and light on the day she lost her husband. Nothing could be done for him but this was something positive that could come out of their tragedy. I gave my address and got through it OK after a small wobble at the start, where I thought I may have got overcome, but managed to hold on and recover. William's transplant consultant was there for the service which was lovely and meant a lot to me when I was giving my talk. He said afterwards that he likes to get to it to give thanks for those children he is able to save through transplant. The service was led by the chaplain who has a special responsibility for the liver until where William had his transplant so it really was lovely to be able to share this act of thanksgiving and remembrance with these two members of our transplant team. I won't describe my address on here but I will send a copy to anyone who would like to read it. Holly followed me with a very brave and moving account of her transplant story.
After a buffet and some long goodbyes to some very special people whom we had got to go over the weekend, we were on our way home. We will certainly get to that special service as often as we can do. It is an honour to be able join with donor families in the act of thanksgiving for their loved ones.