As we all eagerly await news on Orla Tinsley, who is in surgery undergoing a double lung transplant, it seems like the perfect time to pause and reflect on the gift that is life.
Most days we have our heads down, fighting through whatever challenges the day is throwing; rarely having the opportunity to look up and just BE.
I, for one, have had my head completely buried in the detail this last while – we’ve been dealing with our first pseudomonas swab, I’ve been setting up a new business and I’ve been working with our school to make it safer from a CF point of view. All worthy and necessary tasks, thoroughly deserving of my full attention.
But Orla’s inspiring ability to look up past her pain and suffering, and see the beauty that is life, has really made me think.
It’s made me pause and realise that even though we’ve had to fight pseudomonas for the first time, we are still winning.
My daughter is full of life and love and the eradication treatment, while a burden, has taken very little out of her; but truthfully lots out of me. Of course this is because I am aware of (and scared of) the bigger picture. It is an emotional blow when CF sneaks in and lands a punch. But a child’s ability to just live in the now and embrace each day for its experiences and fun is the something we should all aspire to. As is Orla’s ability to believe, even in her darkest hour, that brighter days are coming.
As a CF parent, you are very practical and proactive, doing everything in your power to protect your child while also ensuring that they lead as normal a life as possible. But a little part of you secretly hopes against hope that your child will be different. That they won’t follow the path. That they won’t grow the bugs. That they will be spared pain and suffering. This is human nature. This is love.
Acceptance, for me, has always been the hardest thing. But today, looking up and looking back on the year, I am filled with hope. In this year alone, my daughter finished playschool and started big school, Orkambi was approved for double deltas, the trials for the triple were announced, I survived my first experience as a keynote speaker, I started a new business and I have two wonderful, happy children and a safe home, filled with snuggles, stories and laughter. Life is good.
It’s hard not to feel floored by the knock backs, but drag yourself back up and keep on pushing on. Every year is a gift – unwrap it, embrace it, love it, live it.
And believe that good things are coming.
Edited to add this update on Orla – we’re all rooting for a safe recovery!