For us, Christmas is about spending time together. For the last five years we have been in hospital at Christmas.
A week ago we had a change of plan to our treatment. Immediately after our chat I updated our local team who had also been waiting upon our news.
Now this is where Nurse Clare comes in….’so we need to reduce the TPN time. We need to get you home for a few hours…it’s Christmas…’. I didn’t have any expectations.
And, she put her plan into action. The dietician got stuck into the detail. The pharmacist ordered the TPN for a few days. The nurses chased down the bags and put them up as close to 6pm as they could. Clare loves Christmas.
Fast forward to Christmas Day, Daya spent 4 hours at home. Mostly tired. We were together. Usual chaos resumed. Jasmine started crying in the car home as soon as Daddy sat between her and Daya’s car seat. Jasmine misses Daya terribly. She loves saying her name. She longs for her. She loves seeing her. She loves sitting down next to her and following her around. Daya, however, prefers her independence and distance. She’s not used to having others around and she is fatigued. She’s also not used to all the noise. She’s still young and has spent a lot of time in isolation. They have moments of fun when they play side by side. Jasmine loves playing with anything Daya is interested in. She follows her around the house and shares her food.
Anaya meanwhile is walking around like Head Bear Cub. She finds them funny. And is claiming her stake on all things toy and tv related. She’s also ‘bored’. We haven’t had the same Christmas magic of previous years. We are utterly exhausted in every way. We drive back and forth to the hospital and when Daya is allowed out she has a sugar drop and becomes tired and irritable.
Daddy and I are worn out. It’s just us at Christmas. Daddy has switched to be at the hospital and I’m at home. He’s been in for the last two weeks. I was getting between 2-3 hours sleep a night which was taking its toll. I now do four round trips a day. I’m with the girls at home. Daddy is with Daya. He works when she’s asleep; in the car or late into the night. We don’t talk to each other. I’m the taxi driver and he’s the carer, and at home they are all together so it’s non-stop chaos. He’s also making plans for his father’s funeral from the hospital. It’s shit for everyone. He is tired. He hasn’t got anything to say. At home he immediately does more work or admin. Jasmine is still wibbly-wobbly, Daya has her NG tube which Jasmine could pull out in a head-to-head over the toy kitchen and Anaya cant find enough to do. A normal family Christmas then…..
Daya had a wonderful surprise at the hospital. The naughtiest Christmas elf, Ruth, was back in and the play team Elves sprinkled some magical Christmas sparkle around the room.
Daya loved her surprise when she returned. She was full of delight saying ‘tree, tree, daddy tree’.
Our team made it special for Daya. They are wonderful. They brought in the Christmas sparkle and cheer. They made us smile.
It’s the type of love that warms you up inside.