The perception shift

I’ve been feeling quite down about my sister Rachel’s situation lately. We had some amazing, rapid progress a few weeks ago, when she started to speak and to eat. I have a messaging group with her close friends and there was a time when it seemed that every day, someone had witnessed her doing something incredible, and we were all buoyed by that.

And then, it all slowed down. And stopped. And seemed, at times, to be going backwards. She’s started moving her head a lot, in a rhythmic way. She says it itches. It’s disconcerting to see. She’s also started a habit of counting very rapidly and almost under her breath. You can snap her out of it by asking her a question, but again, it’s a worry.

I just finished reading a memoir, The Last Act of Love by Cathy Rentzenbrink. When Cathy was seventeen, her sixteen-year-old brother, Matty, was hit by a car and suffered severe brain damage. I bought the book before Rachel’s stroke, but didn’t get around to reading it until this week. I was taken aback by the similarities in Matty and Rachel’s treatment at the outset, despite the different causes of their brain damage. Reading about Matty’s life-saving brain surgery, and his need for a tracheostomy, and then a shunt to drain the fluid from his brain, was like reliving those horrendous days in July when Rachel was at her worst.

And then, their stories began to head down different paths, and the contrasts were as stark as the similarities had been. Matty did not become aware of his surroundings and able to communicate with blinks and nods. He did not move beyond eating small amounts of pureed food. He did not mouth ‘I love you’ to his family and progress to speaking.

I have to take a step back, when I’m frustrated and sad about how far Rachel has to go, and be thankful for how far she’s come. And I’m grateful to Cathy Rentzenbrink for writing about her family’s tragedy in such an honest and beautiful way. She has allowed me to view my family’s situation in a new, more hopeful, light.

Everyone has told us that this is how it will be. Fits and spurts of progress, followed by lulls and small steps backwards. And my sadness about this current lull is simply a product of my fierce wish for her to keep getting better. Because she has an army of people who miss her and want her back. Nevertheless, I will try to focus on how far she’s progressed, which is further than anyone predicted at the beginning.

Rachel’s oldest son, Louie, has just completed his first half-term at school. He received a gold star from the headmaster recently for good handwriting. He tells me he loves school so much that he wants to sleep under the teacher’s desk. And there are new places and words in his conversations. Last weekend, he told my dad that if you miss the bus to South Africa, you can get on the next bus to Loughborough and catch up with it there. He will turn five this weekend.

It’s almost unbearable that Rachel is missing these things. We tell her, but it’s hard to know what she takes in. She doesn’t smile. Her younger son, Jay, is almost four months old and he’s strong and sweet. He sleeps through the night and he screams louder than any baby I’ve ever met if his milk isn’t exactly the right temperature. It won’t be long until he is rolling over, sitting up, eating solids. I want Rachel to witness all of that, of course, but I’m trying not to be greedy. For now, I’m thankful for the turn her recovery took. For the fact that we can visit her and share our news and, if we’re lucky, get a response.

I was visiting Rachel with my dad the other day. He was talking about his TV and how it kept freezing and… He paused, unable to think of the word. ‘Rebooting,’ Rachel said. It was a tiny moment, but I wouldn’t have believed it was possible three months ago. And I’m looking forward to witnessing things I can’t imagine now in another three months’ time.