RAtR: Kind of, anyway

Hi! Hello! The observant among you will have noticed I have been absent from RAtR, and pretty much everywhere else, for the best part of a year. In that time I’ve sent out a couple of newsletters I think and put one or two things on my FB group. But essentially I’ve been focusing on family.

Littlest became very ill with a respiratory infection last September. She was in hospital for five months and became critically ill the week before Christmas. We prepared for the worst; and then the day before Christmas Eve she didn’t quite sit up and demand a bacon sandwich. But she pulled round very quickly and was discharged to home in the second week of January. We knew we were on borrowed time and amended her Advanced Care Plan accordingly.

Health and Social Care pulled a number of rabbits out of their various hats and we had an incredible amount of help put in place at home. She was largely confined to bed initially, but then towards the end of February she improved further and was able to get out and about a couple of times a week. She thoroughly enjoyed it, as she was so bored in bed. We focused on ‘quality over quantity’ and organised for her to go back to school for a few hours a week.

Luck was always against us though, and at the end of June, she passed away of COVID. It was quick, at home and surrounded by family who loved her. She was fifteen.

We are now at the end of August and I am just beginning to realise she’s not coming back.  I lie in bed at night, and in my head I imagine she is asleep next door, and I can hear the quiet thump of the oxygen condenser and swsssh of the ventilator. That any moment she will mutter in her sleep or call out for one of us to come and reposition her, or pick up the cuddly toys she has thrown overboard.

It is inconceivable to me that she is gone, although we knew that this moment would happen. The house is bare without her mobility aids and when the team came to remove the ceiling hoists, I cried. If we go out, I still rush, and check my watch, and count minutes off on my head so we won’t be back late for her carers. Our grocery shopping no longer has regular bumper-packs of wet-wipes and hand sanitiser, or tins and tins of tinned fruit and yoghurt and other things to put in her tube feeds. The carpets are exponentially cleaner because she is not tracking half the countryside in on the wheels of the wheelchair. Our washing machine use has halved.

I cannot watch TV programs with bereavements, or ones with young children who giggle when their parents boop their nose. Watching, I get a physical pressure in my chest, a stone sitting on my heart and I cannot bear it.

My daughter is dead, and nothing will ever be the same again. I feel guilt, that perhaps I didn’t do enough. I constantly feel I’ve forgotten something; that ‘Oh shit I left the baby at the Post Office!’ feeling. But there is no baby now and the Post Office has been permanently closed.

A part of me is relieved. Relieved for her, that she no longer has to struggle. But also selfishly relieved for myself that I no longer have to write emails and make phonecalls and fight and fight for her care and her health and her education. I am tired. We are both so tired. If you’ve never cared for anyone long-term, you have no idea how tired you can be.

For the first month, we both just wandered around in a daze. We had nightmares, we had insomnia, we slept at odd times. Now, at the end of the second month we are sleeping better. I am dragging myself out of bed each morning instead of staying in my pyjamas all day. We are trying to keep occupied. If I’m not occupied, I seem to go into a fugue state where all I do is stare at the wall and feel the enormous weight of my grief, like a horsehair blanket thrown over me, muffling everything in the world.

Writing has been impossible for the last twelve months. I am starting, very slowly, to feel neurons come back online though. Memories I had lost pop up regularly now I have all that extra processing power freed up and can sleep for eight hours a night. I am hoping I might be able to begin to write again soon, but I’m not going to push myself. For once in my life I am going to take the time that I need. That’s why I am writing this instead of the Dark Romance topic. Next month, I hope I can join in with the team and get back on track. 

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