It’s Cystic Fibrosis awareness week this week here in the U.K.
It kind of feels like Covid has raised awareness for us. You’ve all had a glimpse into our lives. It’s scarey not knowing if or when you may fall ill. Whether or not that illness will cause irreversible damage. Or even if it will be the beginning of the end.
We’re not being dramatic, we feel like this on some level all of the time. So maybe if decisions are made or things said that make you think ‘don’t be ridiculous’, you just remember how it felt living with this risk of catching covid-19 and the uncertainties of that. That is where most of our crazy rules and decisions and thoughts come from. Protecting our children.
I’ve had a pretty awful week. But I can say with certainty that CF wise- this particular CF week will always be remembered as the most peaceful. My children are physically thriving in shielding. It may become periodic for us where we shut our doors and let them thrive. You won’t really recognise either when you see them again. It the biggest silver lining to come from all of this.
Both of their diagnosis’ were heart shattering. I’m crying writing this thinking of how unfair it is, how much it hurts as a mum to have those words said to you twice, they have cystic fibrosis. You can’t really explain the pain of ‘wishing’ to someone, it’s a physical pain. But time is a strength. It’s not a healer in my experience. The wounds are still there. But it’s helped me become stronger as we face our daily lives in a very lonely world most of the time.
This year is slightly different for us too as Lauren was able to start a new medicine called orkambi. The strangest bit for me is how happy I feel that in September Wyatt at such a young age will follow in his sisters footsteps. How life has changed! And what an incredible blessing.
I think my only hope for cystic fibrosis awareness is that you all, whoever reads this, are so much more aware of passing germs on. Your colds can be as deadly as covid-19 to a CF sufferer. Please remember this time by going forward and being more aware of the vulnerable around you.
And please know, that no matter how strong we have to be, how strong we appear, we have some incredibly sad and lonely and painful days. Check on your friends that deal with life limiting illnesses. We all know how to put a smile on for the world, because it’s just so sad to be sad all the time. But underneath it, it could be a very hard day.
Cystic Fibrosis sucks- and I would take it away in a heartbeat if I could, and not just because I cannot stomach phlegm haha!!! Take a deep breath and be so grateful you can breathe with ease,
Love – a very tired CF Mummy ☺️