Worst. CF Clinic. Ever. Yesterday was a really, really tough day for me. Rowan had clinic at the Alberta Childrens’ Hospital and for the very first time it was not a positive, uplifting experience. Her liver enzymes were high in her blood work and now she is on a very aggressive course of anti-biotics and if it is not an infection she may have to have a scope (like the put her under/ surgery on her tiny little body kind) and ultimately, start taking even more medication. And this morning I am sad and mad and I just want this to go away – I just want this to not be happening
Well shit, this is not what I planned. I am knocked on my ass a bit… I think I was thinking that as long as I worked, and worked and focused on doing all I could to find a cure that CF wouldn’t happen to us – would not, could not, get worse – like I could control the way her condition progressed – that’s it I suppose, I was trying to stop it in it’s track with good karma and buckets and buckets of hand sanitizer. That’s the big ticket item this morning, that’s the big light bulb moment… while I have said all along that I don’t feel consciously genetically responsible for Rowan’s CF – it is clear this morning that on a sub-conscious level I do – if I was not a carrier Rowan would not have CF – and if I just raise awareness and help raise money to find a cure that would be my redemption for my guilt and the Universe would reward us… does that make sense?
I am glad this happened now before my crazy headstrong ambition was really, really convinced that the track I was on could somehow alter Rowan’s genetic makeup – I think I would have had farther to fall. We’re going to have good clinic days and bad clinic days. Sometimes we’ll even be able to forget… but the reality is that while we can do all that we can to follow the good advice of her team of doctors and specialists (so grateful for that “first world problem”) she still has CF. So that’s what I’ll do… keep following doctors advice… keep bathing ourselves in hand sanitizer…. keep doing what I can on the Karma front… and regardless of what happens keep on LIVING!