I'm sure I'm not alone in feeling like the news everyday, both political and tragedy filled, is overwhelming at times. Feeling sombre seems like the national BAU these days. In Moly world, we can't help but be humbled and reminded of how lucky we are. Isaac has been well, despite his ongoing problems with his nose (for which we are still waiting for a surgery date) and tummy (including some pretty spectacular projectile vomiting when the kids and I were home alone last week - think sick on the walls, skirting boards, rugs, dog.... It's both a little sad and also a point of pride that the kids all knew their roles in this, little Rosa got towels, Anouk got the water, and Isaac managed it in his usual good humour). But the best news is his chest is great, which is probably the one thing keeping my glass the right side of half filled right now.
I'm working with a teacher at his school and his CF team to work out a way that he can go away for 4 nights in July without me (a first for us), hopefully on a reduced treatment regime that he can manage on his own, with supervision. I know my anxiety about this will be far higher than his, which is how it should be.
Today marks the first day of the UK CF week. I have always supported and promoted this, as I can say for sure that more awareness of CF would benefit people with CF, it is still so often confused with other conditions and misunderstood, and this is really difficult at times. I've even had a GP ask me how long Isaac has had CF....! So please, share my posts and encourage people to sign up for organ donation. Some relevant ones can be found
here and
here about CF myths and
here about giving life. Thank you.
