Cystic Fibrosis and feeling grateful generally don’t go in the same sentence together, but for the sake of sanity, it’s important to try and find the positives in your parenting challenges. Sometimes it can be ridiculously hard to see them through your fighting fog, so every time we get a clearing, I try to remind myself of their existence. That way I can come back to them and draw on them when I need them most.
They are the simplest of things, but I think that’s what makes them so beautiful.
A silent night
I think unless you have a child with CF, you can’t fully appreciate the sound of a beautiful, silent, cough free sleep. To see your child awaken fully rested and without burst capillaries on their eyelids from the force of coughing is a wonderful thing. And when your child wakes you in the small hours for something normal (like to tell you they need a wee or they had a bad or a good dream), instead of being annoyed, you find yourself thrilled with the sheer normality of the moment. There’s beauty in the banal.
A good poo
When your child has CF, you don’t stop poo watch shortly after toilet training. You become something of a log hog and actually train your child to call you before they flush. This allows for a visual and olfactory inspection, the see ‘n’ sniff test if you will. You see, a perfect poo is not something that can EVER be taken for granted. It involves perfect Creon fat matching, good hydration and I have long suspected other-worldly forces, like perhaps a sprinkle of fairy faecal dust! If it’s sinking and brown, it’s completely deserving of a poo victory dance. Woo hoo, brown poo (sing it with me)!
A clean dinner plate
Parenting a child with CF means that you need to get extra calories into your child on a daily basis without feeding them chocolate all day long – this is (semi!) frowned upon. We all know how hard it can be to get decent food into any children, increase the intake requirements and you really can find yourself sweating over the hob. All too often your own waistline grows while theirs stays static and the wrong people are climbing the centiles. So when you find a few favourites and they gobble them up, celebrate that hoovered plate. The importance of eating well and regularly has made us put a lot of effort into eating together at the table – I think this is the best thing any family can do.
A social outing that you actually make it to
There have been times I’ve felt like I’d never get to a social outing ever again. Murphy and his asshole law would invariably mean that my poor wee woman would go down every time I had planned to go out. I had also slipped into a defeatist attitude of what’s the point in organising to do anything (as a family or couple or individual!) as CF always mocks it. But recently we’ve been able to make most things and as that’s something that’s been a little alien over the last few years, I remind myself to stop and appreciate those precious catch-ups.
A boring day
A boring day means no one is sick. A boring day means no one is coughing. A boring day means no one has a bowel obstruction. A boring day means no one has low sats. A boring day means your family is kicking CF’s mucusy little butt. ALL HAIL THE BORING DAY!
You know you’re a CF Mam when you have more hand sanitisers than you have lipsticks and they are in fact the ONLY thing that you will NEVER leave your house without. Hand washing is of course the hygiene gold standard, but in the absence of a portable sink and being able to power wash everyone you meet, hand sanitisers are your BFFs. (Please note that if you find yourself in our company, you may get gelled whether you’re into that sort of thing or not.)
A thoughtful message
‘How’s your wee lady?’, ‘Going to postpone our meetup because I have a dose’, ‘How did you get on at clinic?’ – any time anyone thinks of us and enquires after Eva’s health, or postpones a meetup because they are sick themselves, I am eternally grateful as it means we’re not in this fight alone. Thank you.
Thankfully our Irish sensibility makes us inclined to find the funny side of every situation we find ourselves in. It’s usually our CF warrior herself who cracks the jokes and finds the fun in (most literally) everything. Her sense of humour is a gift. Also laughter loosens phlegm. So laugh more. Blast more froggies. Now you’re laughing and winning 🙂
We all know that time is precious and nobody knows how long they have on this planet. But when you have a child who’s had to fight from day one, you think on it more often. Looking back, I used to spend too much of my time doing what other people wanted me to do with it. Nobody will remember all the times you worked late to dig a client out of a hole. The more you do it, the more you’ll do it. Be efficient, work smart, say no more often – spend your time with those who deserve it. You don’t ever want to regret time you didn’t spend.
If your face is creasing and your boobs are sagging, celebrate being alive to tell the tale! I take better care of myself now because I want to stay on the planet to protect my girl, not because I want to take care of my dress size. Take care of the heart inside the chest and the mind inside the head, and hopefully the rest will take care of itself.
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