When I starting writing this blog, a dear friend’s Mum messaged me after she read my first post. Amongst a sea of supportive and heartfelt words there sat a phrase that hasn’t been far from my mind since – “All any of us have is today”. A mother’s wisdom and a sentiment worth giving a second thought to as we all take a breather over the Easter weekend.

As a parent of a child with an illness, you become all too aware of how precious time is. You can’t take anything for granted and while that’s so incredibly frightening, it also changes your perspective in a hugely positive way. When things are tough, you fight to get through that day with your child. And when your family is winning, you notice how much you’re enjoying every single minute. It never washes over you. You can’t help but appreciate the smallest of pleasures. You live for the day and all that it brings – good, bad or indifferent. Things that were hugely stressful before no longer are – not because you don’t care anymore, but because you no longer overreact – you’ve learned to reframe things and keep them in perspective. Then you get on with it and deal with them, one at a time.

A beautiful, inspirational 15 year old girl with CF, Triona Priestly, passed away a year ago on April 1st 2014. In her video blogs, she spoke about fighting CF every single day. She liked to think that when she was sleeping she didn’t have it. And when she woke up in the morning, she fought it again, and killed it. What a clever and resilient way to deal with life. The challenges of a single day always seem so much more surmountable than trying to deal with everything that life may or may not throw at you down the road. Focus on winning today’s battle and you might just win the war. Make it byte-sized. Reframe it. Keep it in perspective.

There’s a message in there for all of us, not just those of us with CF in our lives. Life can be a cruel mistress so every day we should stop, for just a second, to remind ourselves of all that’s good. We all have our own stresses and strains, whatever they are, and it’s all too easy to let them get in the way. So take 5 and give your kids a hug, even if they’re pulling the house down around your ears (or vomiting Easter eggs on your duvet!). Ask your partner if they’d like a cup of tea. Ring your Mum and see how her week was. Do something small that shows people you don’t take them – or today – for granted.

Happy Easter everyone.

Triona, remembered. What a girl! – https://www.youtube.com/watch?v=OnylCBCoXKI

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