There’s not a lot to love about a chronic illness like Cystic Fibrosis. It arrives uninvited into your home and into your heart and attempts to take over, with its constant demands for medication, nebulisers and inhalers, and its constant rumbling of your fears and emotions. You see your child go through things no child should ever have to go through. You see them build a resilience that’s far beyond their years. You see them cope with things that would have most adults running for the hills. But you keep the chin up and try not to let it consume you; you reframe everything in your mind in an effort to keep yourself sane – the entire family builds a thick skin in an effort to get on with it and keep things as normal as possible.
But while there’s nothing to love about Cystic Fibrosis, there’s a lot to love about the support that’s out there amongst the warm-hearted people of Ireland. Last week was Cystic Fibrosis Awareness Week – the first one that I’ve properly involved myself in since Eva was born (it takes a while to accept the condition and then turn that acceptance into action). So while I’ve done a fair bit of fundraising over the last 3 years, this was my first time to immerse myself in the ‘official’ world of CF.
But boy, am I glad I did. From the kind words in Blanchardstown Shopping Centre to the even kinder donations, my faith in humanity was more than a little restored on what is CF Ireland’s biggest fundraising day of the year. Truth be told, I was actually nervous about being a volunteer. Sounds ridiculous, but I worried that people would shimmy past us, trying to avoid eye contact because of charity fatigue. But instead people actively sought us out and did volunteering of their own – volunteering of thoughtful words, personal CF stories and resounding support on the issue of Orkambi.
Throw in a few Strawfies for good measure…
And as if we weren’t all busy enough fundraising on the streets, myself and a few other CF Mammies also decided to support the Straw Breathing Challenge online to see if we could bump the figures a little more. What this involves is a challenge to pinch your nose and breathe through a straw for 60 seconds to get an insight into what it feels like to struggle to breathe. You then take a selfie, post it on social media, make a text donation and nominate your friends to take on the challenge next. (See the breaking news article from today to see just how successful it was – there are a few famous faces in here like Nadia Forde, Simon Zebo, Conor Murray, Keith Earls and Paul Warwick!)
When ‘Breathe with me – the Straw Breathing Challenge’ contacted me about kicking this off in Ireland, I was willing as ever to give something a go, but I was a little sceptical as to whether anyone would bother. I have a love/hate relationship with social gimmicks, but once again was surprised (and more than a little emotional) at the amount of people who were willing to get behind us and give it a go. Your willingness to support us so publicly gave both a fundraising boost to CFI and a morale boost to a group of Mammies who live their lives on an emotional rollercoaster, never knowing what’s coming next. (By the way, if you haven’t done one yet, it’s not too late – just take a ‘Strawfie’ and text ’65Roses’ to 50300 to donate €2 to Cystic Fibrosis Ireland).
Not your average week…
So what a week it was! And coming hot off the heels of our first trip to the annual CF Ireland Conference the weekend before, CF Awareness Week was a time of heightened feelings in every possible way. Because while I wish every single day that we weren’t on a CF journey at all, I feel lucky that we’re at least sharing it with the most wonderful of people.
Speaking of wonderful people – to the families of those who have lost their fight to CF, who spend so much time fighting alongside those who are still in it to win it, words can’t express the admiration I have for you. Your strength and relentless efforts are mind-blowing and if I’ve even absorbed even a percentage of your determination to beat CF, our family is in a good place.
Always say thank you…
That’s it – my gush rush is over! But just to say thanks to my lovely Mammy for stepping out with me on 65 Roses Day. Also thanks to fellow volunteers Lisa, Chris, Phil and Lesley for the lovely chats on the day. Thanks to all you crazy Facebookers and Twitterati for your ‘Strawfies’ and text donations. Thanks to everyone who supported 65 Roses Day and reminded us that humanity in Ireland is anything but wilting; in fact, it’s in full bloom.
Most of all, thanks to my beautiful Eva Rose for being my perfect little flower, every single day.