Sorry, it’s been a while.
My lovely, funny friend has gone. I guess looking back, perhaps I should have seen it coming? But I didn’t, and it was such a shock. Is it always that way?
I first got to know Jayne 11 years ago. Isaac had just been diagnosed with CF and that whole time is like one black hole. I remember some things very little; like telling anyone about his diagnosis. But I remember others like it was yesterday; the smell of his milky breath, the softness of his skin, his tiny little chicken legs, the horrible way that we found out. I felt very scared, overwhelmed by all we had to learn, and this huge sense that it was so bloody unfair (why him, and not me?).
One of the more shitty aspects of CF is that people with the condition are not advised to mix. In the seventies and eighties charities would organise CF camps, and they had CF kids wards in hospital where they were all free to cough all over one another. Families all knew and could support each other. But it later became apparent that the particular strains of nasty bacteria that wallow in the lushness of a sticky CF lung were ones that easily spread from one CF patient to another, and even mutate to become super baddies. The Liverpool strain of PseudoA was a famous example (in a CF world kind of way anyway). And so, we are now segregated. On arrival at the hospital we are ushered to a room and all staff visit us, rather than the other way round. On the ward we have a side room with ensuite. If we’re lucky. Otherwise, we are on a mixed ward, but never with others with CF or anyone with an infection. We see plenty of concussions, broken bones, cleft lip surgeries, and kids who have swallowed strange objects. There was one toddler who had swallowed a Ping-Pong ball, and his mother told me (on her way out shopping for the day as she left the nurses to look after her son…. cos that’s what they’re there for, right?) that it wasn’t the first time either.
Which explains why Isaac has never actually met anyone else with CF. If we bump into someone in the corridor we hurry past keeping our distance, us parents exchanging knowing and sad glances.
While I was in that very black hole, I sought solace on the forums that the CF Trust managed, and Jayne and I became friends. The forums meant I could sound off my worries to the only people who really understood. At that time, Jayne was a single Mum, and whilst we became friends because of CF, it never defined her. She seemed so full of life. Wickedly funny, she had the darkest sense of humour I have ever known. She laughed in CF’s face (‘fancy not being able to breathe properly’). She hated people who called her inspirational or brave. She was just living. We shared views which were sometimes at odds to others on the forum (like those CF parents who would say 'I am ready to have another child, I can manage it if they too have CF’ – but it’s not about YOU, is it? It’s about that child). Jayne would rant. And she always made sense. She had the greatest blog, or blogs, which would have me snorting with laughter. She loved her son, and later her new husband, ferociously. She made silent mad videos with her son worthy of an Oscar. She always asked about Isaac, even when her health was very poor, and our own troubles so small in comparison. We talked about our love of watching bats, and flashing boobs at our husbands/decorators (one of those was a mistake). Her texts and emails always seemed to come at the right time, and I could trust Jayne to find the appropriate swear word for every occasion.
I never got to meet Jayne, but we talked about it many times. But I didn’t need to meet her for her to have had a profound effect on my life. And isn’t that what life is about? When you leave your imprint on the world, is it your job, or your house, or what you have learnt that matters? Or is it the effect you have on those who will remember you? I think Jayne’s legacy is her fabulous family and her ever memorable humour.
A goodbye Jayne would have liked….
Dear Jayne, I am very fucked off that you have died. Bloody shitty plum sacks. I love you, and thank you for being my friend x To T&A, I am thinking of you. I am so so sorry x
