My heart actually aches. Can that be right? Certainly my body does.
Isaac is suffering. His surgeon called me today (I almost sobbed with gratitude). Although Isaac is on the priority list (because of CF, he is treated as priority P2 alongside cancer patients) due to NHS backlogs, the wait could still be up to three months.
The fact that his consultant took the time out of his day to call, to explain, to care, and to complain about the state of the NHS (which leaves people in pain this long) along with me, is, beyond touching. He told me how he feels bad for taking annual leave at times, his backlog is so long (I told him not to). Something is broken and it’s not only my heart and sanity. When you vote next, please consider this.
I’m often asked if we can go private? Not an option unfortunately. We would beg, borrow and steal to do so if we could, however no surgeon would operate on him in private care due to his CF lungs and associated risks with infection and anaesthesia. He needs easy access to ICU.
So for now, we wait. We pass the ice packs. Keep the painkillers in stock. Smother him in love. He’s not currently able to go to college (the headaches are too bad) and the impact of this additional time off....? Well, we’ll figure that out later. Worryingly the longer we wait, the higher the risk that the sinus issues further impacts his lungs, and we’re only now getting over the last admission and IVs.
Alongside this, we are preparing for court next week - a tribunal to appeal against his Personal Independence Payments (PIP) decision. I’m not sure I have it in me to write much about this just yet, only that it’s like baring your bloody and beaten soul; having to articulate everything that is hard about daily life with CF; acknowledging the prognosis; detailing the very mundane but personal challenges to strangers, and fighting for something that is the very, very least that he deserves - with a ton of bureaucracy thrown on top (his case is over 120 pages of documentation so far; I’m going to my Dads caravan this weekend to work through this and prepare statements simply because I need to be alone to get through it and I’ll be rubbish company in that time).
CF is a genetic, progressive disease, for which there is no cure or even treatment for the underlying cause of the disease in his case. And still they challenge that he needs extra support?
I cannot thank the CF Trust enough for the support that they are giving us through this process - I consider myself pretty resilient normally, but this is close to breaking me, and without them, I’m not sure I could continue. I’ll update on this after the case, as I’m fast learning about the process and maybe others can benefit from our experience.
I hate writing this kind of post, I really do. I’ve been putting it off for weeks. But then I talk to the kids all day about being open about mental well-being. In truth? They are so much better at it than I am (which I’m so glad of).
We are also thinking of, angry for, and sending funds and love to those in Ukraine 🇺🇦
It is hard to see all the beauty in life when the suffering takes such a violent forefront.
Love x
That smile.... ♥️
