Thursday, 20 November 2014

Day Forty-One

1. Special birthday celebrations

Today was William's 6th transplant birthday. Yesterday was the anniversary of the day his donor passed away and gave him the precious gift of a new bowel and his life. This day is always very reflective for me and I wrote a lot about it yesterday. Today is generally a day for celebration, celebration of life! This year was a bit strange though.

I spent most of the day just willing the phone to ring. I had three 'no caller id' calls and tried to hard to make each of them be 'the call' but, of course, they were PPI and 'our records show you have recently been involved in an accident that was not your fault...' calls. Funnily enough, I didn't get the heart race I usually get when I get a no caller id call. I was just really willing to answer to a transplant co-ordinator each time. Of course, I knew that there is no way it will happen on the same day again (although the day is still very young in terms of transplants as most calls happen in the evening, night and early hours). Having spent time yesterday reflecting on William's current donor and giving thanks, I didn't really feel celebratory today, yet couldn't focus and think about anything else so think just wanted more than ever to get on with the next chapter. I have felt really out of sorts today and Ellie and Wills have too.

William really struggled with today. I haven't really seen him find this all so tough psychologically before. He woke up in a foul mood because of an iPlayer app that he got stuck with and because he had accidentally deleted a video on YouTube, and the one with the most views too! We had a clinic appointment at the Chelsea Pad and he was a complete pain. He said he didn't want to do anything for his transplant birthday today, no gift, no treat. He wanted nothing! Most of that was the mood his day had started in but, while we waiting we talked and he told me that we have always celebrated with a meal out but he didn't want to eat his tiny rations and then sit and watch us enjoy the rest. He said it is "literally torture' for him! He said it was a horrible day and it had been a horrible year and he just wanted to 'moan under his duvet for the day.' I felt so helpless. And then... spotted the electric learning apple thing Wills had been fiddling with. We have a tradition for a food themed gift so I asked him if he would want one of those. As it is a toddler toy that did get a bit of a laugh and we started playing with it together, me teasing him that he would want one and, somehow, the mood lifted. Not enough for him to want to do anything though. Still, at WHSmith at Victoria Station, the last chance for the shopping in London for a gift that I had offered him, he finally said he'd have a look and chose a set of Star Wars Lego books - not food themed but I was just happy he was engaging with it at last as I knew he'd regret not doing so tomorrow. 

We went home and I tidied up a bit and then at the end of the afternoon Wills finally decided that it would be fun to have a bit of a party tea after all and that that meant a balloon would be a good idea too. Every year we have bought a balloon with the number of years on it but Wills didn't even want one of those earlier in the day. So, at 4.30pm, I rushed up the parade of shops at the top of our road and, thankfully, managed to grab a balloon, some party food and a lovely candle holder as a special memorial for the girl who has made his life possible for the last six years and to represent that she will always be with him and part of his life, beyond the time she is with him physically with her bowel. We had a lovely few hours and Wills went to bed having spent some special time celebrating.

The 'donor candle' William lights every year (see next post and video) with the new candle and holder that was lit from it this year. 

2. Introducing William's video diary

One of the things that got William's day started off so badly was that he deleted his most watched video on YouTube. William being William, this meant that he no longer wanted anything to do with YouTube or making videos and had deleted everything to do with that from his iPad. I tried to console him by saying we could make another video that would have as many hits. He loves making films and I have tried before to show him that waiting on the transplant list is a huge opportunity for him to make a video diary of his journey waiting, transplant day and recovery. He was more interested in his Thomas the Tank Engine films and didn't really think anyone would be interested in his transplant journey. He takes things so in his stride it is just normal to him. Today, we talked some more and I suggested that people would be very interested and he could perhaps get more views than the video he had deleted. He was interested but didn't say anything more, until later this afternoon when he had decided to have a party tea after all. As we were preparing it asked me to start his video diary and here is the first instalment. It's on my YouTube channel at the moment so do subscribe if you would like to watch all William's posts throughout the rest of this journey. 

3. No caller id

I shared the first two verses of this poem a few weeks ago, on a day when these calls were giving my heart a fair few challenges. I've added a couple more verses. They need a little work!

The phone flashes up
‘No caller id’
My heart gives a shake
knees buckle and quake
A nurse calls for a chat
about this and that
It wasn’t THE call
this time

A second time, flashing
‘No caller id”
Another nurse, this time ‘continuing care’
needs to come round and share
new care plans and thoughts
and hear our reports
It wasn’t THE call
this time

A third time it flashes
‘No caller id’
Our records show that you
have been in an accident - who knew?
Not me!
It wasn’t THE call
this time

A fourth time, you're kidding!
‘No caller id”
More records, this time telling me why
I could make money from PPI!
It wasn’t THE call
this time

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.

No comments:

Post a Comment