A coughing good Christmas.

It is me coughing this Christmas. A 'can't lie down for spluttering, lung screaming, throat angering' kind of cough. But being ill is always a reminder of what it might be like to feel rubbish daily, as some people are, others who are suffering in ways I almost never do. Feeling normal is criminally underrated, and I am as guilty as the next person for taking that forgranted. And so I hope my empathy and this cough makes me a better Mum in some small way, for my boy who almost never feels 'normal'. That is my coughing Christmas silver lining. 

We have had a lovely Christmas. The kids have had fun. We are relaxing with family, surrounded by music, and soaked in gin. 

Wishing you all a happy holidays too x 

With family this Christmas?

Looking back, I think I was a wonderful mum of two. There was baking and homemade costumes aplenty. Heavens, even homework was tackled and hair brushed. In comparison, I fear I am a pretty crappy mum of three. In this run up to Christmas I've fallen into that classic parent mode where IT'S ALL TOO BLOODY STRESSFUL. I never believed parents suffering from this phenomenon before, I mean, how hard can it be to order presents online and make a Saxo stuffing? But I am, and it is. So, forgive me, no Christmas cards this year. I am making a donation to the CF Trust instead. 

And thinking of all you lovely people, who I hope are looking forward to a family Christmas too, can I suggest a light after dinner chat? Even if you are signed up to be an organ donor, your next of kin can (and surprisingly often do) override your wishes in that tragic moment. 

You are more likely to need an organ transplant than you are to donate an organ, and so it makes sense that more than half on the list die waiting due to a shortage of donors. Please sign up, and please, have that conversation while you can. Sign up here! 

For us, we are all well. Isaac's extra treatments since his admission have now come to an end (aside from the extra nebs which he will remain on now). He has a few tummy problems again, but is mostly well and very happy to be home and off school.  

Wishing you all a very merry time this holidays and a healthy new year too x 

Christmas cheer

Huge thank you's to my wonderful Cambridge University Press colleagues who supported our annual Christmas Raffle in aid of the CF Trust today. This raffle is now in its 11th year, and used to consist of all the supplier donated Christmas goodies sent in. However due to compliance regs, suppliers send in a lot less these days, if any, and so the raffle now largely consists of prizes donated by staff. Despite this, the funds raised increase with every year.... Which by my books means my colleagues grow kinder and more wonderous each year! 

£500 raised today, and more to count up next week from cakes sold too. I've created a new fundraising page which you can see here, and this has prompted me to think about my next fundraising challenge too.....Ideas on a postcard please! 

Our family and friends have now raised over £53,000 for the Trust since Isaac was born, and a large part of this is down to my colleagues, never seemingly getting sick of me asking for sponsors. It means more to us than you can know. Thank you. 

Amazing Anouk.

Our little Anouk turned 8 this weekend gone. She has always been the sweetest little thing, the most beautiful baby, and continues to fill us up with love. A miracle baby, born following PGD treatment (which you can read more about here), so new that she was the 23rd baby born in the world following that kind of scientific test. She even has tree planted for her in a woods for this reason, she is so special. From day one she was full of love, grace and kindness. She mothers all children, a prolific love-letter writer, a gift giving creative, an arty soul....

Our little Nanook, Babooska, Shnuks.... we love you so.
As you like to say 'I flew right into your heart'.

Whenever I'm alone with you You make me feel like I am home again Whenever I'm alone with you You make me feel like I am whole again Whenever I'm alone with you You make me feel like I am young again Whenever I'm alone with you You make me feel like I am fun again However far away I will always love you However long I stay I will always love you Whatever words I say I will always love you I will always love you Whenever I'm alone with you You make me feel like I am young again Whenever I'm alone with you You make me feel like I am fun again However far away I will always love you However long I staye I will always love you Whatever words I say I will always love you I will always love you

Young lives lost.

Another young life lost. Not lost, cruelly taken, by Cystic Fibrosis. A family heartbroken. 

Kirstie was 27, and blogged in her usual candid and ever positive style here when she knew that she was dying. Kirstie featured in a documentary about CF which you can see a clip of here. She went on to have not just one life saving double lung transplant, but two. These gave Kirstie five more years of life. She was an ambassador for the charity Live Life Give Life founded by the lovely Emily (also sadly no longer with us). 

People sometimes ask me what they can do to help? Well, there are ways.... 

Fundraise for the Cystic Fibrosis Trust. It doesn't have to be shaving your hair off, or climbing a mountain as I do, a cake sale at work can be wonderful too, or a non-school uniform day in fancy dress. The Trust fund research which WILL extend the lives of people with CF. And not just extend them, but also improve the quality of that life. 

If fundraising is not your thing, then campaign to get more people signed up to the Organ Donor Register. Remind people; you are more likely to need an organ donation than you are to give one; Half of those listed die waiting; You must tell your next of kin your wishes, otherwise they can over ride yours; And that Transplants can and do SAVE lives. 

If you haven't already, please sign up here.

Here is to those extra five years during which you lived and loved life to the full. Sleep tight Kirstie x