I keep reading about Orkambi and I really, really want it made available to all those that could benefit from it, so one afternoon recently when I was feeling a bit stroppy I wrote to Mrs May.
Little Pinkie is going to be 10 this summer, so with a decade of CF Mummy-ing under my belt I have decided to mark this mile-stone with something epic.
I call it ‘my old friend’ but it isn’t, it's the opposite. I haven’t really got insomnia either, not the full blown variety anyway, I have a milder, more of the keep you awake all night until an hour or so before the alarm goes off when frankly you're having the sleep of champions, type of insomnia. It’s a curse.
Yesterday I woke up completely chipper. I’d had one of my rare brilliant kips and was poised and ready to take over the world. By the time I came downstairs, Blue had unbelievably made himself some breakfast; porridge and toast, although bless him, he couldn’t reach the honey so was eating what can only be described as gruel. Dave Berry (Capital FM) was cheerily telling the listeners that it was going to be a corker of a day. Pinkie soon joined us and was absentmindedly singing along to ‘I took a pill in Ibiza’, it was a proud moment.
I have reached a junction in my life and don’t know which way to turn. When Pinkie was diagnosed with Cystic Fibrosis we were told in no uncertain terms not to go researching on the internet, that there’s no filter on Google and we would encounter heartbreaking images and stories. As we knew all about the heartbreak, we heeded this advice and haven’t really deviated from it since.
“Did she do a poo?” I asked the mid wife when Pinkie was born.
“No,” she smiled.
Mr and I high fived with teary smiles.
Blue had been premature and done his first poo before he was fully out and had inhaled it. Blue had been a very poorly chap. No balloons on the door or head wetting, just a vigil around an incubator. Some weeks later Blue was fine and at home being cooed over like the perfect miracle he was. We didn’t realise then that the ‘no poo’ was the start of our C.F journey.
I found out early that people mean well but can be proper thick. The information they have stored away in the recesses of their mind is out of date, probably based on some hideous memory of a child with blue lips and a tube up its nose on BBC Telethon circa 1988. Times have changed. Medicine is no different to the ever advancing technology market, think how far that has come.