I guess my fear is that without work, my focus would be 24/7 on our battle against CF, and I realise now, that would do Isaac no favours; While his health will always be my top priority, and I will fundraise, and shout loudly for CF and organ donation awareness, for now, our balance in life is much healthier if I have that other string to my bow, to distract and keep me sane.
That said, it’s not an easy balance. We have spent two of the last six months residents of Addenbrookes Hospital. I sleep there in the week, and try to work from the ward when I can in the day, and make it into the office for meetings I can’t really do by Skype. Still, most of my annual leave is taken up with hospital - and that can feel so unfair for all the kids, as it limits what other time we can have together.
I’ve also taken two professional qualifications in the last year or so, and I’m studying for a third now. I admit, I wonder why I do this sometimes, especially weeks like this (being turned down for a challenge I would have loved, following an interview I took after a sleepless night on the ward). But I like my work, and I LOVE my colleagues and friends there.
And, quite simply, I half agree with the adage that money does not buy happiness, but on the other hand, seeing Isaac, Anouk and Rosa playing in a pool in the South of France with our best friends kids a couple of years ago, I have to concede, it kind of does! Plus, who knows what kind of employment Isaac’s health will allow him? We need to build our lives up for his future.
So, despite my disappointment this week, I will carrying on working for as long as Isaac’s health permits, and while I can, we will pack in as much fun as we can.
I leave you with some brilliant Gerhard Richter. For a really spooky insight, check out this. Freaked me out slightly!
Everyone with CF deserves the chance of a longer, healthier life. Please support our skydiving fundraising by clicking here. Thank you x
