Day Twenty-Nine

1. Two festive seasons in one

Today was an exciting and somewhat unusual day in that Wills and I went to both a Christmas Party and a bonfire night firework display in the same afternoon! Given that these two events don't fall in the same season this is a combination I've never experienced in the same day before. It kind of sums up a big aspect of our lives right now though. We don't know what the future holds. We don't know what will happen after that phone rings to tell us that a wonderful person and their family have donated organs that are suitable to transplant for William. What we do know is that every moment is precious and, when faced with a situation where they may be fewer than you'd wish for, you want to pack as much into every one of them. So, why not have Christmas and bonfire night in one day in November?

I was so grateful to Muffins Dream Foundation for a wonderful afternoon of Christmasyness. We don't know when William's transplant call will come. If it were to come between now and Christmas we will certainly be in hospital for Christmas. His first transplant was gifted on November 19th and he received it early in the morning on 20th. We were, of course, in hospital for Christmas but it was one of the most special Christmases ever as it was such a wonderful time of new life and new hope. We have also been in hospital over Christmas because of set backs and illness and I hate that but being in for a transplant is different all together. So, if our call comes in the next couple of months I will be extremely happy and grateful. That said, it was great to experience a bit of early Christmas magic today, to savour every moment, take in every detail and feeling and place them firmly in my memory, ready to take out and relive in the more challenging days to come over the main Christmas period, whether that be spent on the waiting list or recovering in hospital.

We got home just in time to cook some bonfire night tea (Wills will be joining in with this next year I'm sure) and watch the fireworks in the scout hall just along the street. Although we often go along and join in properly, we have a prime spot right under the exploding rockets from the front of our house. It was pouring with rain so, this year, we watched from the porch. Wills recorded highlights of the display on his beloved iPad and I munched on my baked potatoes and cheese and veggy sausages.  I held him close to me, anxious to experience this moment as fully together as possible; the fireworks lighting the sky, the sounds (through my hearing aids for the first time which was amazing, especially the crackles and fizzes), the smell of the chemicals burning in the air, the taste of the food that my mum always cooked for us on bonfire night... Just as during the Christmas party earlier, every detail stored to treasure and look back on.

2. The gift of knowing moments can be limited

We have spent a lot of time in hospitals over the years and have met a lot of families in similar, and very different situations to us. Some, like us, live with a child considered to be 'life limited' meaning it is uncertain at best that their child will reach the age of nineteen. Then, there are families whose life changes in that millisecond. Whose child falls suddenly ill or has an accident. We have met families whose child was suddenly struck down with acute liver failure and, within days, needing an urgent transplant to stay alive any longer at all. So far, all of these families I have known received their gifts in time but it's such a shock to take it all in, that your child is so sick, that they need a transplant, what that means for the rest of life...when it is all so new and sudden for you.  I met a family once whose child, without any warning at all, started having severe seizures and ended up needing transfer to intensive care. I don't know how that story ended. I often think how lucky we are that we know William is 'life limited' because this means that we know in advance to treasure our moments together. I read once that we only learn to appreciate life fully when our days are nearly up. When you know your child may have a limited number of days you are given a gift in many ways - the gift of treasuring everything. Of course, there is always hope that your child will amaze everyone and live well into adulthood. You don't dare to make plans that far ahead though. Instead, you learn to live in the moment and appreciate all the details that so many people miss. I think we are lucky to have that insight. My heart really does go out to those families who end up in life changing moments so suddenly and without warning that they never learned to live this way first. I know that I am striving to live in the moment as much as I can from now on.

3. Book review 'Happiness and Honey' by Gavin Whyte

I have another little book review/suggestion for you. I read about 'Happiness and Honey' by Gavin Whyte in a magazine. It is a beautiful little fable bees and about happiness, following the story of Billy the Bee who was born at a time when bees didn't believe that they could fly as their wings seemed far too small for their bodies. So they walked and climbed up the flowers to make honey. But Billy dares to dream... I'll say no more. It's a charming, inspirational and short read too. You can read it in one setting. I'll just leave you with a quote from 'The Law of Dreamers' that is written by another bee that Billy inspires to follow their own dream and becomes a scared text through the story;

"The grounded dreamer does not welcome an easy journey, for he knows that the twists and turns along the way give rise to strength and new opportunities."

This is very much the way I'm trying to view our current very twisty path.

This also reminds me of another quote that went around Facebook a while ago and, much as I am trying to grow and see and take the opportunities life at the moment is giving me, I would also like to put out the universe ;).

"Dear whatever doesn't kill you... I'm strong enough already thank-you!"

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