My sister

My sisters biggest fault and her greatest strength is that she is a people pleaser. She will sign herself up to every challenge and committee going, despite already doing too much. 

She is generous to her core. 

She is almost always late. 

But will take 52 minutes saying goodbye before she actually leaves. 

She is sociable and bubbly. 

She knows everyone, and everyone knows her. Probably because of the 34 commitees she is signed up for. 

She has had her heart spectacularly broken, but she got through it. 

She is stronger than she thinks. 

She is fantastic teacher, friend, daughter, Mum.

She is married to someone lovely but so completely different, but between them they have produced two of the best kids ever made. 

I am the proudest auntie. 

She does too much and I worry about her sometimes. 

Unlike me, she can play musical instruments. 

Unlike me, she has really naff taste in music. 

She is always there for me, for us all. 

She is always the first visitor at the hospital, and the last to leave. 

The day after our wedding, she turned up first thing in the morning, hungover, to clear up the party mess before we woke. I'd never loved her more. 

She has joined me on every single fundraiser for CF so far (although not the hair shaving oddly). 

She is the best sister I could ever have hoped for... (apart from when she repeats the same cringey stories from the past about me). 

I hope my kids to grow up able to lean on each other in the same way. 

Knowing you can count on someone so completely is priceless. 

I am one lucky much much younger little sis (he he).... 

Love you Joby-Jo. Happy belated Birthday x x x (sorry, I did write this then, but failed to post it!). 

Big plans.

Last week we had Isaac’s annual review, and lots of good news. Lung function, chest x-ray, ultrasound all looking reassuring. He did great on the exercise tolerance test (looking at his heart rate and blood o2 sats as he runs up and down a zillion times). In his words he ‘bossed’ it. Whatever that means. Other results (blood work etc) are to follow, but we’re feeling good. It's a whole day at the hospital, but he is the best company, it's great to spend that time with him without the distractions of home. We are both as silly as each other and it's a great people watching place. 

 

This week we met with the gastro specialist team about his tummy issues. They are not keen to label his problem, as the management of it would be the same regardless. Bottom line was he is already taking everything they can offer. The full arsenal. The anti-sickness meds are working so well right now, they are happy for us to continue, although we can't rule out future bouts. Surgery to stop his vomiting is a possibility, but even if he has one day a week where is not sick, this proves mechanically things must be working, so for now, we continue as we are, tentatively hoping that he continues to improve.

We see his Immunology team again in May, but have sent in bloods ahead of that to avoid another stabbing. 

 

So, all in all, reason to celebrate – another glass of wine me thinks! Although I have come to the conclusion that alcohol is just a way of borrowing the next day’s happiness… but I'll feel sad about that tomorrow. 

 

Talking of sadness, Jayne's passing creeps up on me when I least expect it. Usually when I laugh, and I think ohh, Jayne would like that and I think to text her. A good reason to think of someone I think, laughter. If I miss her this much, how can her family be managing? 

I’m trying to focus on the things that we have to look forward to. This year feels like a BIG year –

 

We have a proper holiday planned. Two whole weeks! 

But first I am joining Isaac on school camp.... Not because I am a stalky Mum, but because of his nebulisers, physio and meds. Bit much on how own yet. 

Jo, Sarah, Jane, Erika, Lemon, Jess and I will 'boss' our 50km in the Brecon Beacons and raise loads of dosh for CF (please please sponsor us here!)

Isaac and Rosa both start new schools (Secondary and Primary). I'm not sure this one can be true, but I'm told it is. 

We have more plans for the house renovations (we never stop, can't help ourselves).

....But work have announced redundancies – so we might have to put those renovation plans on hold.

.... At the very least, the redundancy risk is making me think about my options. That might not be a bad thing. 13 great years at the Press, I have been lucky. 

We are going to have a new baby in the family for me to squeeze (not mine before you ask, huge congrats to my lovelies, you know who you are!). 

And Isaac will be well. He will, he will.... he must. 

 

Have a great day all. Tell the people you care for how much you love them. X 

Flood walking.

Goodbye to a lovely friend.

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