Thursday, December 21, 2006

My journey with William - all 26.2 miles of it!

Well, very exciting news has dominated my last few days. I am in the CHASE Hospice Care for Children team for the London Marathon on 22nd April 2007. According to the website, I have exactly 4 months, 9 hours, 4 minutes and 21 seconds to the big day! My training schedule began on Tuesday and it is not just the running, it is nutrition (today I tried a 5 mile run before breakfast and ran out of fuel pretty quickly!), sleeping habits, for me - insulin and blood sugar regulation and control of my asthma - a lifestyle change for the next 4 months really. I am very excited about it and numbered the weeks in my diary to coincide with the training programmes. I have only ever numbered the weeks in my diary 3 times before - when pregnant with each of the children. I will be following the training programmes very closely. It is fantastic to have a challenge and running continues to help me deal with the stress that goes hand in hand with looking after William. It also gives me space to think things through - total "me time". This morning was wonderful. It was so still and quiet in the fog. I was running up well-lit and busy streets but all seemed very calm.

As well as the training, I also have 4 months to raise as much money as possible for Chase. They hope for an average of £2000 from each runner. Our local running shop have offered to help back me in this as I am often in there with William and they felt inspired by how his situation has got me running. A shameless plug though - I can also be sponsored online at I was planning to begin a new blog about my training but, really, my journey with William and my journey to a 26.2 mile run across London are not really easily seperated. I think so much about what is going on with William whilst I run that there would, inevitably, be some overlap. So, I will integrate both here.

My thoughts, while running today, took me back to this day last year. It started as a normal day in the hospital. Riley (our room mate) had gone home and was coming for clinic. We had planned to swap presents and have lunch together. I was waiting and waiting but Helen, Adam and Riley did not appear. In the end, I went for a sandwich and, when I got back, was told that Riley wasn't coming because he had been taken ill on the way. I didn't know how bad this was until the ward round when the consultant appeared with tears in his eyes. He said he knew I would want to know what was happening and that it really wasn't good as Riley had gone into cardiac arrest for a very long time and was now on full life support. This was also the ward round when we were told that we needed to start considering that William could well need a small bowel transplant. It took a long time for that news to sink in as all I could think of was Riley. Eventually, I got a text from Helen saying what had happened and words I will never forget "I think we've lost our Riley" At that point, Riley was still alive. Riley died in his Mum's arms in the early hours of 22nd December - 3 days before his first birthday on Christmas day. My main thoughts that day were with Helen and Adam but that was also the day I realised how serious things were for William. My thoughts today are with Helen and Adam and all the family.

Meanwhile, William's geneticist has been thinking further and discussing him with international colleagues. People are really fascinated with him. They do not feel it is a syndrome like Costello Syndrome. The current thought is that it may be an incredibly rare syndrome that has only been seen in a handful of children. Children have the kind of gut problems William has but most have died in infancy so the other things he has may well develop if the child survives longer. These children have characteristic hair anomalies and William does have a very strange texture of hair, as well as a very sparse coverage. The next step is to send his hair for chemical analysis.

For Hope and Ellie's school holidays began yesterday with a trip to the ice-rink at The Natural History Museum. I was about to post some pictures but have realised they are not yet downloaded so watch this space!

1 comment:

Shadow said...

I'm sat here in tears reading about little Riley. Please pass on my thoughts and best wishes to his family, it can't be an easy time of year for them.

Brilliant news about the marathon place - how do you do it?? Good luck with the training. I'll check out your justgiving site now!!

Thanks for the parcel.
Love and hugs to all of you. Wishing you a very Merry Christmas and a wonderful 2007 with questions answered and problems solved!!