Thursday 27 September 2018

This ain’t no lifestyle blog, dude!

Here are some pictures of our kitchen.....









Our front room....



And now the avocado on sourdough toast I had for supper...... 

KIDDING! As much as I do love our house (over the 12 years we have been here we have removed the faint smell of cat piss, re-plastered every wall, moved doors, extended twice, changed every flooring, and renovated the garage to make the kids a games room). We have built a home. It’s covered in art, piled high in books, scattered with discarded shoes (rarely paired) and littered with toys (and the latest ‘in’ toy? Slime). It may be a little grubby around the edges, but it is most definitely a home, a party place, a social hub, music always a tiny bit too loud. Put it this way, you walk into our house, and you get a pretty good idea of who we are and what we love. No beige, no neat piles of magazines, and no loo roll with folded sheets..... 

Anyway, I digress! My point was that this ain’t no lifestyle blog (if it were, I would have to tidy more, and with our lot, that’s not possible). This is the story of our lives with our sons Cystic Fibrosis. It can be merry, but more times than not; it is raw, it involves lots of sputum, it hurts, and as much as I try to put a positive spin on things, I don’t always feel that way. Maybe I’m trying to write ourselves out of the waves of negative, the pain, the nausea....

A year ago this week, Isaac got very sick. Weeks later he was still oxygen dependant, in a wheel chair, and scared that the effort to breathe might get too much. But we got him out of intensive care. We got him home. And he’s spent the last year fighting to get fitter than ever; 

...preparing for the next battle that we know with absolute certainty will come. 

He is so fit right now, and it takes a pretty rocking personality to take the knocks he takes, and get back up running like he does. Our little dude (I say little, but let’s face it, he’s near my height now). 

This other CF dude writes about life with CF in a super eloquent, moving, and very real way. He is post lung-transplant and doing well. So worth a read. His points about CF being an invisible disease are spot on; for every funny look we have been given as he coughs excessively, or when we leave pharmacy with not a bag, but a box load of drugs, jump the queue in X-ray, or when we allow him to add a tonne of salt to his food - please don’t stare people. Disease comes in all shapes and sizes. 

More on us soon x