1. A Bit of a Tough Day
Today has been a bit of a hard day really. Wills woke with a ‘heavy feeling’ in his tummy and was squirting out green water from his stoma. He is such a trouper and decided to go to school, even though I offered him a day off and told me not to fuss too much as he feels like this a lot. I could see he wasn’t at all comfortable though as he waddled off to his taxi with his nurse, tapping and rubbing his tummy. His discomfort seemed to have settled a bit through the day but he has continued with the green water. It’s not unusual for him these days but it shows how poorly his bowel is functioning and keeping him well hydrated is a struggle. He carries around up go five kilos in fluids on his back all day until his TPN finishes at four when he gets in from school. It is heavy for him at the best of times, let alone days like today. But he carries on and hardly complains. He just asks me when we’ll get the call and, as I have said here before, that is the hardest question of all because I see the longing in his eyes and I just don’t know. No-one does. I wrote a poem about this a few weeks ago and shared it here.
The good news is that, despite the green water, his bloods were better this week so we won’t need to add more weight to his bag. We are hoping we won’t need to because everyone can appreciate that it is just so heavy for him as it is.
2. Bonfire Night in Something Precious InsideI wrote this draft scene for the novel tonight, whilst I watched fireworks from my desk. It follows on from an extract I shared here so do go back and read that first if you haven't done already.
“I hear a special little girl has got some fireworks to see.” Mandy announced as she came with Sophie’s TPN and IVs, not long after Gill and Charlie had gone.
“I thought I’d do you first and then you can go up and watch out of the window and I think we can let you have a late night tonight, don’t you?” Mandy said, winking at me.
“Yes please, yes please, yes please…” Sophie said, bouncing on the bed.
“Goodness me, where did all that energy come from?” Mandy said, hanging Sophie’s bag of feed on the drip stand and placing her tray of drugs on the bed.
“I think we need to have fireworks every day. They seem to be making someone feel a lot better. Pass me Mr Wiggly.”
Sophie fished her line out of the Disney Princess bag Gill had made her and passed it to Mandy.
“I’m going to stay up till midnight.” She said
And, when I have got my new tummy, I’m going to have a midnight feast!
“Wow that sounds lots of fun.” Mandy said as she pushed the drugs through Sophie’s line.
“Can I come.”
“You can. You’re my favourite nurse and I want you to come to my birthday party, and Christmas party and my own fireworks in my garden when I have got my new tummy.”
“Goodness me Sophie, you do have a lot planned. I would love to come. There, all done. Off you go. Wrap yourself in a blanket and keep cosy. And look after Mummy, make sure she doesn’t get too cold and bring her back if she gets too tired or feels poorly at all.”
“I will. I will. Come on Mummy.”
Gill was right. Of course she was. We could see fireworks for miles over London from the top of the hospital. Big explosions that lit up half the sky with smaller rockets shooting up from gardens between them. Every single one was met with an excited gasp or squeal from Sophie who was cuddled up next to me. We had made ourselves a nest on the floor from pillows and a hospital blanket and had Sophie’s favourite fleecy ‘Elsa and Anna Frozen’ blanket pulled up over the top of us.
Gill’s picnic was spread out next to me and tasted as wonderful as it smelled. I couldn’t believe how hungry I was all of a sudden, sitting up here with Sophie on a day when she was feeling so well, just the two of us. I pulled her closer to me, resting my head on her hair. It smelled of bananas from her shampoo. Or rather that banana smell that banana candy tastes of. I breathed in deeply and shut my eyes to pretend, just for a moment, that we were snuggled up together, back home on the sofa, watching fireworks through our own window.
“Can I smell a piece of toffee now please?”
Sophie handed me the baked potato she had held pressed under her nose for the last ten minutes and I swapped it with a big chunk of home made treacle toffee.
“Hmmmm, that smells SO good. Does it taste as good?
“Let me see.” I answered, popping a similarly sized piece into my mouth.
“Oh es ooo ug.” I muttered, chewing so hard my jaw ached and releasing a creamy river of molasses and brown sugar into my mouth. It was divine.
“Mummy!” Sophie giggled at my sticky, sludgy speech. Don’t talk with your mouthful.
She pressed the toffee closer to her nose, trying to take in as much of the taste through her smell.
“Can Gill make me some more when I’ve got my new tummy?”
“You can count on it!” I whispered.
When we first visited PICU (intensive care) before William's first transplant I was struck by the helium balloons dancing across bed spaces across the ward. Of course, Wills had one to wake up to too and will have again this time. It's such a strong image so I am experimenting with poems around it. This is the beginning of one concept.
3. Helium Balloons in PICU
A tiny flower amidst a forest of hardware
My child lies in stillness
under the shadow of the helium balloon cloud
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