We are finishing up our third week as in patients.
I’m lonely. It’s just me and Daya, and our nurses for company. Our nurses are wonderful.
Nowhere to go. Nothing much to do. She sleeps. Watches the iPad. We paint or just visit the playroom (in isolation). She gets tired. Then we are back. We might try and take a brief walk of 20 minutes or so. Again there is no where to go and it’s windy and freezing outside. She keeps asking to go back to bed.
I have probably heard Jasmine’s voice for less than 24 hours in the last two weeks. I miss her. I can’t remember how she sounds. I haven’t had a daily chit-chat with Anaya since the weekend.
I haven’t spoken to Anaya enough. I missed her school play. Daddy was also going to miss it as he had to work. He went with his plus-one, surprise guest who Anaya was very excited about and Daddy stopped ‘tapping’ (working) for an hour.
I’ve spoken to Daddy for maybe half an hour in total this week. That’s half an hour spread across the entire week.
I’ve spoken to our Fixer for longer than I’ve spoken to Daddy. I love our Fixer.
So we are still home away from home.
An awesome nurse lifts you up for the whole day. They know when it’s hard for you. They manage to make you laugh. They do funny things with Daya.
Nurses are smart. They read people. They see through the facades. They know some parents pretend in front of their kids and some just can’t hide their feelings. They see everything. I think maybe, that as hard as I try, maybe they see that I just don’t have any fight left in me.
I’m tired. I’ve grown old and I’m still scared. I am always hopeful but this type of cancer isn’t one where you can drown yourself in blind-positivity.
We sit together. We play together. We walk together. I sleep after she does. I get up when she cries and lay with her in her cot.
Daya met some characters from our local Panto. These two nurses are hilarious and our very own in-house entertainment.
Nurse Kimmy gave Daya her first ever lolly. She was somewhat shocked at my parenting when I told her that Daya has never had one. She gave her one more!
We changed her dressing. She was bored with our situation. My dad watches TV like this with his arms folded! Then Ruthie turned up in the morning….
This is Ruthie. This is Daya with a sick bowl on her head. Ruthie put it there. They love each other. They are naughty together and have a lot of fun. They spend a lot of time together messing about (getting her blood pressure, doing her observations, giving medication, setting up pumps…). Daya lights up when Ruthie walks in. And she calls out her name when she leaves the room. Ruthie talks to her all the time. Daya listens and says things back. She makes me laugh so hard my sides hurt. Ruthie always turns a bad day into a good day.
This is Daya expressing her sadness when Ruthie said goodnight to go home. ‘No. No. Ruthie’.
She no longer says goodbye. She sneaks out.
My ‘grandchild’ is also being well looked after.
Licking butter of toast. Not actually eating the toast. 11:30pm at night.
After a difficult night, she slept in and we went for a play session. She didn’t stay long and it tired her out but she was distracted and happy. Our play lady is fun and loves her art and crafts. Every kid in hospital loves a good playperson.
Ruthie is awesome. They are like two peas in a pod. Daya gravitates to her as she does with her other fave Trudie. One is calm and quiet and the other is comedic and animated. There is a lot of love. They are amazing. Daddy even misses them when he’s not here!
Jackie came up to play with Daya. Yes the baby is wearing Jackie’s glasses. Jackie is funny and good with kids. They haven’t seen each other for months.
Everyone loves the fish on the floor – it certainly helped get Daya out of bed for a few minutes. Everyone becomes a kid again in this room. Light is projected on to the floor to make a rockpool with fish that swim around; and the fish and the water react to your movements.
Daya was introduced to Frozen for the first time. We had a very loud sing a long. Sarah is funny and a great singer. She knows all the Disney tunes. The nurses came round and joined in.
We fill the time as best we can.
One of our doctors raised money by swimming in the freezing Serpentine. That money was used to buy play things for the kids. Play things such as the art and craft stuff Daya has used. That’s love. Daya made her something.
Some footballers came to visit. They loved the fish machine. They couldn’t keep up even with their nifty footwork.
Even with footballers and fish for company, the moments are fleeting. Most of the time we are in the room and in the cot.
But the best moments, filled with fun and laughter, are the ones we cherish the most. The moments when our nurses make her laugh or smile.