Lots of us in the CF community have been saying it since the first case of COVID-19 landed on our shores – that fear you’re feeling now? We feel it on a daily basis. Seeing children as biohazards, door handles as viral magnets, public transport as fast tracks to fever and aeroplanes as germ incubators.

We’ve been opening door handles with our elbows for years. We social distance on instinct. We can hear a cough two aisles over in a supermarket. We’ve been antibac-ing trolley handles to OCD accusatory stares since Diagnosis Day.

But the truth is it gives zero satisfaction to keep pointing this out to people. In fact, seeing your own daily fears and anxieties exponentially replicated in the entire population is incredibly eerie. Mass anxiety casts a shadow of incomprehensible darkness and scale.

When the first cases were diagnosed here, our collective fear as a nation seemed to bring out the worst in people. Stockpiling of toilet roll, paracetamol and hand gel. Everyone thinking about themselves and little else. But now that’s beginning to change. The collective conscience is waking and sparking and shining and we are starting to pull together and realise that this is about much more than just ourselves.

This outbreak has shocked us all to our core. And as it rattles and overthrows us with its relentlessness and disregard for life, it reminds us of what we are: HUMAN.

We can’t control everything in the universe.
We can’t have everything our own way.
And despite medical advancements, we are not invincible.

As CF parents, or people with CF, we are all too aware of these points.
We place a value on every single day and every single breath that can’t be understood by most.

Or at least couldn’t be, before COVID-19.

Yet, I really don’t want people to feel sorry for our community because we’re vulnerable.

Because in a lot of ways, we are better equipped mentally than most to deal with a scare of this scale.

In my home, we’ve done homeschooling more than once to avoid sickness or recover from it.
We wash hands every time we come into the house.
We leave our shoes at the door.
People know not to visit us when they’re sick.
We often miss things because the risk is greater than the reward.

So yes, we are more vulnerable.
But we are also more resilient.

The world has a new pathogen to fear. And with this one, we’re all in it together.
It’s after all of us.

When this darkness finally passes, there may be one small glimmer of light.
That we all realise the collective significance of our actions as individuals.

Everything we do impacts on others.
How often we wash our hands. How good our respiratory etiquette is.
Whether or not we stay at home when we are sick.

You may be your own person, with your own ideas and views. But you’re also a domino in the living, breathing row that is the human race.

It’s time to respect how connected we are and think beyond ourselves.
It’s time to value our healthcare workers, our paramedics, our pharmacies, our army, our retail workers, heck, even our politicians.
It’s time to stop taking our parents and grandparents for granted.
To stop taking our health for granted.

It’s time to realise that we are more than human; we are humankind.

We just need to put the kind back into it.
And now seems like a good time to start.

 

 

 

 

Meet CF Mammy.

CF Mammy is 39 years young.

She just looks flipping ancient because she has just gone through a 2-week stay in hell hospital with her daughter.

CF Mammy is smiling and positive on the outside, but CF Mammy is being fucking eaten alive on the inside.

CF Mammy does not want to call an ambulance again.
CF Mammy does not want an emergency call to her daughter’s hospital room again.
CF Mammy does not want to see her daughter struggle to breathe like that again.

But CF Mammy knows that her not wanting these things doesn’t matter a fuck.

Because CF is an absolute asshole.

An asshole that turns a common cold into an ambulance ride and 13 nights in Hotel Temple Street, where pinging monitor alarms become engraved on your fucking soul.

So please forgive CF Mammy if she hears you sniffle or cough and proceeds to pick up her child and run the fuck away from you as if you were a flesh-eating monster.

CF Mammy is not doing this because she’s a fucking weirdo.

She is doing this because she desperately wants to keep her child alive and she feels like she and her child spend their lives dodging snot bullets.

You see your ‘touch of a cold’ is my child’s ‘touch of collapsed airways’ / ‘touch of a giant fucking mucus plug’ / ‘touch of pneumonia’, or perhaps a trio of all of the above to keep things extra terrifying.

CF Mammy finds it extremely tempting to never leave the house. To not let her child go to school. Or the shop. Or the anywhere. Ever.

But CF Mammy knows that this is not practical and that her child would hate her for it. And she really loves that she loves her a lot.

So CF Mammy is trying her best to educate people instead.

By begging them to think of others and cover their coughs and sneezes.

Please.

For the love of God.

For the love of my child.

For the love of your conscience.

For the love of anything and everything.

If you don’t have a tissue, sneeze or cough directly into your elbow (‘catch it’).

If you do have a tissue, sneeze or cough into that, bin it and wash your hands (‘catch it, bin it and kill it’.

CF Mammy implores you to teach your children to do the same.

CF Mammy is not delusional.

She knows it’s impossible to protect her child from all germs.

But it’s not impossible to protect her from some, with a little help from you.

If you are lucky enough to have children in the full of their health, CF Mammy implores you to think of those children that have a battle on their hands every day of the week.

You might think there’s nothing you can do to help.

But there is.

Your hygiene helps.

Everyone’s hygiene helps.

CF Mammy thanks you from the bottom of her full-of-love but full-of-fear heart.

CF Mammy also apologises for the cursing, but this is so fucking important.

 

Photo by Edu Carvalho from Pexels

 

I put on my big girl pants yesterday and went to the screening of ‘Five Feet Apart’, which is on general release in Ireland from this Friday, April  5^th. The opportunity to see it was last minute, which helped. If I had had the opportunity to think about it too much, I probably would have bottled it and not gone.

I’m pretty sure you all know the gist of the story by now – two teenagers with CF are in hospital at the same time and sparks begin to fly. Stella, our treatment compliant and awareness-raising female lead, is awaiting a lung transplant, while her much less compliant love interest, Will, is on a trial to attempt to treat his aggressive b cepacia infection. They know they are a danger to each other (and he is a particular danger to her) but they’re so sick of a life of limitations, that intense attraction and temporary happiness begin to outweigh risk and its life-threatening implications. There’s romance and there’s wrongmance, and we all know what category this falls into.

People with Cystic Fibrosis must stay six feet apart in the interests of infection control, but Stella and Will decide to steal back one foot, in defiance at all that CF has stolen from them.

If it’s going to drive you nuts that there are inaccuracies in the film around CF, then don’t go and see it. The hit and miss use of masks is questionable, items are passed from patient to patient, oxygen nasal cannulas are flung around on all kinds of surfaces (shudder), the amount of coughing is not representative of people who are at such advanced stages, and a patient with CF is hosting a secret party one minute and passes away from pneumothorax the next. The film is also extremely pessimistic in terms of the outlook for both lung transplant patients and those who culture b cepacia. The hospital has a swimming pool and patients often find themselves up on the roof overlooking the city. Our hospital doesn’t even have en suites for our kids most of the time, so it’s fair to say that you need to suspend reality more than a little to watch this!

However, we must consider that CF is so complicated that no movie is going to be able to represent the intricacies in a way that is entirely satisfying to those of us on the inside. The experience also varies so much from person to person and family to family. We must also remember that the point of the movie is not about educating the audience on every single aspect of CF. A film like this can only ever offer broad strokes and a general glimpse into a life more complicated. It’s in this intimate glimpse into the hard times that ‘Five Feet Apart’ succeeds.

While it’s a film with representational flaws, it’s also a film that’s full of heart. I found myself much more captivated by the emotional insights than anything else. The devastation at missing another trip with your friends, the frustration at not being allowed contact with the only people who truly understand you, the fear of surgery, the daunting schedule of treatments, the fear of losing a well family member, the germaphobia.

As a parent of a young child with Cystic Fibrosis, I very much see me and my daughter as a team. So one thing that startled me in the movie was the almost non-existent role of the parents. While this was of course done to focus you on the doomed relationship that mattered to the storyline, it really got me thinking. My daughter is her own person and my role and influence will diminish over time. So instead of fixating on the ins and outs of the story on the screen, perhaps this film is an excellent prompt to think about the importance of instilling independence, positivity and good judgement in our children with CF.

I watched so many scenes with all of my insides screaming ‘Don’t do it!!’ If I ever saw Eva chatting in the gym with another CF patient, I think I would explode on the spot. To me, for my child, six feet isn’t enough!

But my reaction (and the intensity of the relationships on screen) made me realise that so many other people are going to have an influence on my daughter as she grows. I won’t always know where she is and what she is doing. I won’t always be making the judgement calls for her. It got me thinking that my job is not as simple as protecting her today. My job is to empower her with knowledge, to build her confidence, to teach her to advocate for herself and to give her an appreciation for life. To help her, in the words of Stella, ‘not to live for her treatments but to do her treatments to live’.

‘Five Feet Apart’ has been accused of being sanitised and glamorised. And to an extent, it is. People have also said that if you really want to know about CF, ask someone who has it instead of watching this. But without watching something like this, will people ever actually ask? While the film may not be perfect, it IS a conversation starter. And maybe that is enough.

Image from CBS Films.

I do it all the time: Calling my daughter a CF Warrior. Hash tagging BEATCF. Using words like fierce and fearless.

We use these words for the absolute right reasons.

We use them because we want our kids to feel powerful and strong. We want them to stand defiant in the face of the great dark danger that is Cystic Fibrosis. We want them to be superheroes, to be gods and goddesses, to be determined that nothing will knock them down. We want them to believe in themselves.

We don’t just want them to, we also need them to, because it also helps us to manage our own emotions.

Most of the time I think this is a good thing. We have to truly believe in our own power to harness the power of positivity, right?

Right.

But occasionally I question it. Because the problem with being in a fight or a war is that somebody wins, and somebody loses. If you lose the fight against this illness, or any other, does that mean that you didn’t fight hard enough? Does it mean that you weren’t brave enough? Does it mean that you were only part warrior? That you could have tried harder?

Of course not.

It means that illness was ahead of medicine.

But we don’t want to talk down our children’s efforts either. Because they are out there, every day, living lives that are much more difficult than we dreamed for them. And they are mind-blowing in their resilience, strength and acceptance.

So how do we tread the fine line between motivating them and pressurising them?

I’ve reflected on this a lot and I believe that for us, as parents, it’s about trying to unearth a motivating space, a type of ‘positive pressure’. This means offering mammoth encouragement and reassurance, teaching self-belief but also self-forgiveness. We need to make sure our children don’t feel like they’ve failed if they can’t in fact be superhuman every day of the week (I can barely be human every day of the week). We need to reassure them if they’re not achieving what they see others like them achieving.

Because being a warrior needs context. No two fights and no two warriors are the same.

One CF Warrior might break world records.

Another might prove everyone wrong by doing something they were told they never would.

Some days, it will take a warrior level of effort just to breathe.

Other days, being a true warrior will mean admitting that you need to go to hospital.

The best days are when being a warrior simply means being well enough to just do what everyone else takes for granted.

I think the word warrior means different things to different people at different times. A small feat can sometimes be the most challenging; the one that requires the most bravery.

All we can do as parents is be exactly what our children need us to be on any given day.

Some days we’ll need to be their Commanders, motivating them to rise to a challenge or recover from being wounded.

Some days we’ll need to be their personal armour, protecting them from a run of hard hits.

Some days we’ll need to be their jesters, helping them to find laughter when nothing seems remotely funny.

Some days, we just need to get out of their way and let them get on with it!

But every day, we need to be their safe place, reminding their brilliant selves just how lucky we are to have them in our lives.

#ResistingTheUrgeToHashtag!

 

 

 

 

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.

1. 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.

2. 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)!
   
   

3. 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.
   
   

4. 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.

5. 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!

6. Hand sanitisers
   

   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.)

7. 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.

8. Laughter
   

   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 🙂

9. Time
   

   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.
   

10. Ageing
    

    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.

 

 

 

 

 

 

 

 

 

 

 

 

Before you roll your eyes thinking this article has been written by some flab-free Bendy Betty or Flexible Fiona, let me set you straight – the only Betty you’re hearing from here is of the Sweaty variety!

Your inspire-to-be yogi I am not. I have a bulging disc in my back (thank you children). A bulging everything in my tummy (thank you children. And lattes. And curries. And comfort eating. You get the picture). And a bulging brain most days of the week (sadly the result of an eternal headache, not hyper-intelligence).

But you see, that actually makes me the PERFECT candidate for yoga. I am a Mum who is slowly going around the twist – and this is a most excellent place to start. I’m trying to work and rear two young children, one of whom happens to have Cystic Fibrosis. So I have all the regular motherhood and adulthood worries, plus some particularly unique and terrifying ones, all played out on the emotional and physical assault course is my daughter’s unpredictable health.

Enter the yoga mat.

The single hardest thing about starting yoga is getting past the fear that you’ll be the only inflexible freak in the room. Chances are you won’t be. But even if you are, it actually doesn’t matter. The beauty of yoga is that everyone is deeply concentrated on themselves – on their own minds, on their own bodies, on their own capabilities and restrictions on any given day. On how they’re feeling inside and out. Your yoga practice is the one time you have permission to stop thinking about everyone else and instead just listen to and connect with your own body.

If there was an Olympics for worrying, I’d win gold every single time. The undefeated champion of the worry world! But when I go to a yoga class, I have to concentrate so damn hard on not falling over, that my brain has no choice but to forget every single other thing that’s going on in my life. So 60 minutes of concentrating on making shapes with my body, means 60 minutes of not fighting demons in my mind. I can’t explain how therapeutic this reset is.

To turn up the heat on this healing, I hit a hot class as often as I can. Deep concentration, deep stretching and deep sweating all wrapped up into one. I’m not sure this is actually what’s happening, but in a hot yoga class I feel like I’m sweating all the negativity out of my body. Not just body toxins, but mind toxins too. Nothing feels better than feeling the sweat pump out of every orifice in your body. I’m not sure why something so vile is so exhilarating, but it truly is. (I also never knew your lower arms could sweat! You learn something weird and wonderful every day.)

So if you’re a stressed out Mum with your knickers in a twist, maybe consider getting your body in a twist instead. After dealing with the family place mats, do a legger with your yoga mat and carve out one hour just for you. Even if it’s just once a week. Connect with the strength of your body and feel the benefits travel to your mind. You’ll find an inner peace you didn’t know you had. And don’t worry, you don’t have to be Flexible Fiona to fit in – Stressed-Out Sallys (and Sams) are regulars in most classes. All you have to be is present and kind to your body and mind.

For me, yoga gives me space to temporarily forget how overwhelmed I feel on our Cystic Fibrosis journey. It helps the stress melt away and it’s truly the only time I think of me and me alone. It’s like my sweaty, protective bubble. My own space, where my anxious thoughts are acknowledged and let go. The effects may be temporary, but there’s always the next class…

Who knows what it might do for you.

Namaste!

 

Images from Pixabay

I appreciate this is not a problem that regular* parents need to fret about, but is it entirely necessary for toy manufacturers to dream up new ways to work holes of doom into their designs?

You see, as a CF parent, toys with holes represent drying problems. Moisture caught in toys represents the risk of said toy carrying pseudomonas aeruginosa or mould. Both of these things bring with them anything but the LOLs. They bring infections and aggressive, long-length treatment that may or may not work for CF lungs. Not so hilarious.

Speaking of LOLs, let’s discuss those blasted LOL dolls. The only thing they bring to my world is complete and utter Loss of Laughter. I see my daughter watch these unpacking videos on YouTube, excitedly waiting to see if the doll is a wee-er or a spitter or whatever other gross-er the company has thought up. Meanwhile I have to tell her that her own personal LOL dolls must remain totally dry (as must Mammy, for fear that if she starts drinking from all the worry, she may never stop).

Thankfully, my daughter is the definition of laid back and fully accepts that she can only dunk her dolls in imaginary water (I am under no illusions about how lucky I am on this one). So, what’s the problem? Well, the problem is that I can’t control the weeing and spitting antics of every other LOL doll in the universe. I can’t stop her from going to friends’ houses or from ever engaging in the real, non-sterile world. I certainly can’t ask every parent I ever meet to keep their dolls dry (I’d be lying if I said I hadn’t thought about it, LOL!). I’m already paranoid about being ‘that mother’. Thankfully I have met nothing but thoughtful and helpful Mams on our journey so far, but there’s a limit to what you can ask of other people.

When other parents think of dangers for their children, I’m pretty sure LOLs, Tiny Tears, water guns, water tables and paddling pools are not high on their shit list. But in true Chucky style, these are the things that come between me and my sleep. I think it’s particularly hard when you have a girl with CF, as toy manufacturers seem to think that girls want all of their toys to excrete on a regular basis. What is that about anyway? Safe to say that the only thing that’s excreting in this house is cortisol from my anxiety-ridden body.

So what’s a worrywart to do? In the absence of being able to control the toy universe – smile outwardly, scream inwardly and do your best, I guess!

 

*I vaguely remember being one of those