10 CF phrases to help you understand young CF families

Perhaps you know us, but don’t like to ask too many questions. Perhaps you’re afraid of saying the wrong thing, or of upsetting us. Please don’t be. I think most families take comfort in you enquiring after the health of their child (or children) with CF, in our case our daughter. You might be paranoid about putting your foot in it, but we’re a forgiving bunch! Every conversation is education and it’s much worse to ignore the mucoid elephant in the room.

While CF doesn’t define our family, it’s certainly an extra (uninvited) member of the household, and we have no choice but to learn to live with it. And for an ‘invisible’ illness, it certainly knows how to make its presence felt sometimes. To give you a little insight into what it’s like inside a CF family (or at least inside this one), I’ve been playing around with some phrases beginning with the letters ‘CF’. Probably a daft idea, but here goes…

  1. Constantly Famished

In our house, there just can’t be enough food! Why have one slice of lasagne when you can have two? Why leave any chicken on the carcass? Yes, I’d like fries with that! People with CF need to take in up to 50% more calories than their peers to allow both for malabsorption and for the extra energy they need to breathe. Even with enzymes to help absorb protein and fat, it’s not an exact science, so ‘more please’ is music to a CF parent’s ears. Even with all the extra food, some people with CF still struggle to gain sufficient weight. We are blessed that our daughter has a great appetite and is a really good weight. But I’m acutely aware that most parents deal with one of two extremes – ‘constantly famished’ or ‘can’t feed’. For some kids, the oral appetite just isn’t there (or weight gain is just not adequate) and peg feeds directly into the tummy are needed to bulk up intake.

  1. Crippling Fear

Of course you try and cover this one up, as you don’t want your child to feel different or frightened of the world. But often, while you’re acting normally on the outside, you’re screaming on the inside. The world is a scary place when your young child is susceptible to illness. If you allow yourself to think about it – other people, supermarket trolley handles, soil, hay, snotty noses, coughs, mould, dust – it feels like everything is a risk factor. Yet sometimes your own fear is the biggest risk factor of all when it gets in the way of living any kind of a normal life. I try to deep breathe and hand gel my way through the most anxiety-ridden days!

  1. Crazy Faeces

There ain’t no stool like a CF stool. Not for the faint-hearted, parents get over themselves pretty quickly when they have a baby with CF. From luminous green to orange oil, you see it all. What’s really important, though, is to pay close attention to that rainbow waste, as it gives you huge insight into the health of your child’s digestive system and how well their enzymes are working for them.

  1. Courageous Fighters

Our kids put up with interventions that most adults would struggle to deal with. Frequent cough swabs, IVs for weeks at a time, bloods, X-rays and hospital admissions. Some have ports. Some have feeding tubes. Most have a heavy load of daily medication and nebulisers. And yet all the kids with CF that I know are insanely agreeable, happy and inspiring. They could teach the rest of us a thing or two, that’s for certain.

  1. Can’t Function

While us parents aren’t the ones whose bodies are physically fighting CF on a daily basis, our hearts and minds fight it every second of every day. Sometimes we can’t sleep because we’re afraid our kids are breathing funny. When our children are coughing, our hearts are breaking. When our kids are poorly in hospital, our mental health goes under with them. And Dr. Google is a terrifying temptation. We’d give anything to trade places with our innocent children and take the pain away. I’d end my life today if I thought for one second it would guarantee my daughter a full one. We probably appear as people who flip-flop between ‘we’ve totally got this’ and total mess. Bear with us; our ability to function is generally linked to our child’s lung function.

  1. Cautious First

We will ask you if you’re sick before you come over for dinner. We’ll ask you if anyone in your house is sick before we call over to you. Please, please don’t be offended. We’ve seen two-week admissions come off the back of what’s a basic runny nose to someone else. We can’t control the rest of the world, but in our inner circle, we can at least ask sensible questions and avoid unnecessary risk. Remember that when you’re well, you are ALWAYS welcome. So visit us on the double then.

  1. Clean Freak

This one lessens over time as you learn that no matter how much disinfecting you do, there’s still bacteria practically everywhere. When our daughter was a baby though, all toys got disinfected every night and people practically got sprayed coming in the door! Now we apply more workable rules, like shoes off in our house and wash your hands when you come in. Clean hands are a bit easier to achieve than a clean world! But it takes time to learn to relax.

  1. Candid and Frank

The injection of perspective you get when your child is born with a health challenge is like nothing else I’ve ever experienced. You lose your ability to tolerate bullshit, time wasting and insincerity. So CF parents will tend to tell it like it is and be super-efficient with their time. We’re extremely compassionate people but also extremely straight-talking. Embrace the honesty – the world could use more of it.

  1. Cancelling Frequently

We make plans but sometimes, CF has other plans. We might show up to 10 things in a row and then back out of 5 in a row. Please don’t stop asking – we love you and want to see you (you do our mental health the world of good), but sometimes CF has other ideas. So let’s overdose on playdates, coffees and dinners when all is well, knowing that sometimes it won’t be.

  1. Completed Family

The first thing I need to say is that this is absolutely not the case for everyone who has a child with CF, but it is the case for us. Plenty of parents go on to have more children who may be born with or without CF. I admire their bravery so much but after several years of debating this issue with ourselves, we’ve decided that CF has put a full stop to the number of bodies in our household. (Perhaps we’ll add a four-legged friend!) Decisions like this are mostly about recognising your own personal, emotional limitations. You have to know where your strength begins and ends. Our children need functioning, loving parents, and that’s where our future energy will be channelled. Of course such a decision comes with a heavy heart, so be gentle when talking to us about your plans to procreate a football team 😉

That’s it – crash course in CF over. So to keep up with the theme, c’est fini!


Illustration courtesy of the talented @goldenwonder1


Learning to let her go…

I’m not the first (and certainly won’t be the last!) mother to write about how emotional they’re feeling packing their butter-wouldn’t-melt little beauty off to playschool.

But it’s virtually impossible to explain just how big a deal starting playschool is for the Mum of a kid with CF (or any other medical issue). Notice I said it’s a big deal for Mum! The issue is entirely mine. My daughter couldn’t be more ready to take this step – she spent the evening before her first day hugging me and telling me she was soooooo excited. And I’m absolutely thrilled for her. But while the excitement is all hers, the fear is all mine.

You see, as horrible as this might sound, when you have a child with vulnerable health, you see pretty much every thing and every body as a possible source of infection. CF Mums have bionic ears for coughs or sniffles for good reason, having seen their kids suffer the extreme consequences of the most ‘innocent’ of viruses. We also have super-sight for bacteria-friendly environments, knowing that antibiotic-resistant, opportunistic pathogens are ten-thousand-a-penny in this fabulously moist country.

You might read this and think I’m particularly over-anxious or over-thinking it, but the fact is, it’s my duty to make sure my little lady isn’t put in unnecessary danger. She will appear to ‘muck in’ with the rest, but everything she interacts with will have been thought about and talked about with her school. We make modifications in advance, so she doesn’t feel any different to the other kids when she’s there.

I’m sure you’re thinking what the hell kind of danger is there in a playschool of all places? You’d be surprised. With CF, the dangers lurk in the most seemingly innocent of places:

  • Towels – the most germ-infested objects in any home or school! Paper towels are a must for people with CF.
  • Soap – we need to make sure it’s liquid. No sharing soap bars.
  • Poor hand washing facilities – splashing your hands in cold water does not a hand wash make! Warm running water and soap is a must – sing happy birthday to yourself twice while bubbling up!
  • Compost – while making compost is seen as environmentally friendly, rotting veg grows B. Cepacia, a potentially lethal bacteria for people with CF.
  • Soil – grows pseudomonas aeruginosa. Many people with CF will still do gardening and that’s a totally personal choice. But caretakers need to know to follow strict hand hygiene rules if a child with CF is taking part in any planting activities (and check if their parents will allow them to in the first place).
  • Tyres – you see them all the time in playgrounds. Lovely big black tyres – great craic to jump into and over; great places to grow pseudomonas and lots of other baddies in the stagnant water that they collect inside their rims. These ‘playthings’ are actually horrifying ‘germthings’.
  • Rainwater buckets – more stagnant water, more problems! These are a no-no for us.
  • Other children – another child’s sniffles could be my child’s hospital stay. This one, of course, is not an easy fix as none of us can lock our children up! And children at this age catch viruses like spiders catch flies. But keeping a child with respiratory symptoms separated from my child is a must.

It probably all sounds a bit grim, but I guess like everything else in CF, prevention is protection. We certainly won’t be able to completely stop our wee woman from picking stuff up, but it’s important to limit unnecessary risk.

Of course, Little Miss is blissfully unaware of all the meetings and care plans, all the worried faces as I briefed the playschool team, all my tears and fears behind closed doors. The main thing is: she’s ready. My little magnetic, giggly, social butterfly is ready to get out there and make her mark on the world. I, on the other hand, am not a bit ready. And I never will be. But I’m getting much better at pretending.

Enjoy yourself little lady.

This Mama is doing her best to let you go and not hold you back any more.


Illustration courtesy of the lovely @goldenwonder1


Humanity blossoms on 65 Roses Day

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).

strawfie collage 2

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.




Why Ireland needs to approve Orkambi and every other CF drug that Vertex can dream up

oxygen dreams HR

So 2016 has started pretty much the same way as 2015. Watching our beautiful little girl struggling for breath, with nose-diving oxygen sats and a wheeze that would fill every cell of your body with dread. It started with a fever, turned into a runny nose and 72 hours after the first cough, she ended up in hospital with pneumonia. From first cough to pneumonia in 72 hours, just contemplate that for a second. That’s what living with CF is like. It’s that cruel. It’s that unpredictable. It’s that heartbreaking. Our daughter has only just turned 3 and has just spent another 10 nights in hospital on oxygen – what kind of a life is this?

And yet whether or not Ireland will approve the new drug from Vertex Pharmaceuticals called Orkambi, the first drug to treat the underlying cause of Cystic Fibrosis for patients with two copies of the mutation Delta F508, is actually up for debate!

To be clear from the outset, my daughter unfortunately won’t benefit from Orkambi because she only has one copy of the Delta F508 mutation. Her other mutation is a rare one called R560T. But as I reflect on another arduous stay in Temple Street, with its several failed IV access attempts, the panic on our daughter’s face as she coughed till she vomited, the nose cannulas pumping oxygen into her lungs, the 9 nebulisers a day, and the emergency Doctor and Physio callout in the middle of the night due to tumbling sats not picking up with increased oxygen, I can’t help but think of the 600+ people in Ireland that would benefit from it. And it makes me sick to think that they have to fight for the right to this medicine. They fight for life every single day as it is. And now they have to fight to prove that their lives are worth the price tag that this life-changing medication comes with.

I understand that the price needs to be looked at. I agree that it’s expensive and the price needs to be negotiated. I take no issue with the fact that it has to go through an assessment and approval process. But I do take issue with the way the CF Community has been treated in advance of these assessments taking place – articles in the media stating that the HSE will not fund the drug ignited fear and panic in a community that’s already under stress and duress most of the time. Why prejudice the decision in advance of assessment? Why make people feel that their lives come with a price tag? Why make it seem like a decision has been made before a decision has been made?

People with Cystic Fibrosis often describe the illness as feeling like they’re drowning on the inside, as they struggle to deal with the excess mucus in their lungs. Meanwhile parents of children with CF frequently feel like they’re drowning in their own fears and feelings – feelings of being constantly overwhelmed, forever worried and scared for their children, while trying to put a brave face on it and truck on, wishing they could just take it away.

In the online CF Mammies support group I’m part of, the 16 days of this year alone have already seen several children in hospital for lengthy stays, some in ICU. These 16 days have seen children on oxygen, children on IV antibiotics, children on inhaled nebulised antibiotics that are so strong they come with the risk of hearing and sight loss, children screaming with the pain of bowel blockages, children losing weight despite eating constantly, children who need operations for PEG feeding tubes who are being given appointments that are over a year away. Then outside of our group, there’s an 11-year-old boy from Cork getting home after a lung transplant and another 11-year-old who just a few days ago lost their fight with CF. THIS IS REALITY.

And yet this is also reality – here are a few key facts about Orkambi from Cystic Fibrosis Ireland:

  • It is the first drug to impact on the underlying cause of CF for 60% of the CF population in Ireland.
  • The drug has shown up to a 40% reduction in worsening of CF requiring hospital admissions.
  • It has shown a sustained increase in lung function.
  • It has shown a sustained increase in weight, an important issue in CF care (nutritional status is shown to have a direct effect on lung function).

In Orkambi we have a drug that has the potential to lengthen lives, improve quality of life and delay the need for lung transplantation. So in 2016, let’s change our attitude to healthcare. Let’s try and decrease the number of CF infections, instead of just trying to treat them in hospital. Let’s move with the times. Let’s embrace the amazing science that’s out there; the science that’s hunting CF down. Because what good is this science without access to its fruits?

As CF parents, all we want to do is rewrite our children’s futures. We want them to dream big, to dream tall, to dream past the early expiration dates that have been put on their lives. Orkambi is the start of this dream becoming a reality. We shouldn’t have to fight for our children’s lives, but believe us if you make us, that fight will be relentless.

And just wait until a drug for Eva comes along…


If you haven’t yet signed the petition for access to Orkambi, please do so here:


Illustration with thanks to Olivia Golden, @goldenwonder1


Happy birthday chickie

To my beautiful baby girl,

I can’t believe you’re turning 3 next week. Three whole years of age!

It’s been so fast and yet it seems like a lifetime ago that you were placed on my trembling body in the operating theatre after an emergency C-Section. My body went into shock. I couldn’t stop shaking and was so worried when they said they were going to place you on my chest. I wanted to hold you so badly, but I was quaking so hard that I was afraid you’d fall. But you didn’t fall. Instead the most amazing thing happened – they placed you on my chest and my entire body stopped trembling; it became completely and utterly calm. It was the most overwhelming and out-of-this-world sensation. Then, as soon as they lifted you back up, the shaking started all over. And my life with you has been like this since – when I’m with you, I’m at my calmest. You have a magical ability to just calm. me. down. You, baby girl, are my centre.

You made quite the entrance that day, and everything about you has been unforgettable since. Your beautiful, happy face. Your mop of crazy curls. Your impish sense of humour. The way you skip instead of walk. The way you always ask me to dance. Your sparkling eyes that can light up the darkest of moods. Your naturally caring character, so often checking that the rest of us are ok. A compassionate, funny little bundle, at just (nearly) 3 years of age.

Three is such a significant number for us. Because at just three weeks of age, you were diagnosed with CF – a twist in the tale that nearly broke us. But a twist that has also made us the family we are today.

CF reminds us that we can take nothing for granted. So it’s made us more loving, more resilient and more appreciative of life. It’s made us feel more, worry more and cry more. But it’s also reminded us to laugh more.

And so on your third birthday, we think back to your two hospitalisations in the last year and wish with all our hearts that you hadn’t had to go through them. But we’re also grateful that the number is that low, because we know so many have had to endure much more.

Our promise to you on your birthday is that protecting your life will be the purpose of ours. We promise to do everything we can to beat CF. We promise it won’t define you, despite you fighting it every day. We promise that we’ve always got your back, that we’ll always listen and that we’ll always fill your life with love and laughter. We promise to always encourage you to believe in yourself and to shoot for your dreams. We promise to fight for every single CF drug that science can think up (#Orkambi is just the start – come on @campaignforleo!). We promise to fight for every single breath. Because, in you, we have been gifted a breath of fresh air.

Happy birthday chickie, from your Mammy, Daddy and Bro (your three biggest fans). xx

Illustration courtesy of the talented Olivia Golden @goldenwonder1

10K for 10K! Eva’s Divas know how to strut their stuff.

I woke the morning of the Mini Marathon with such a knot in my stomach. Would I actually be able to keep running for 10km? Would I manage to find everyone beforehand and sort out all our t-shirts? Had I told everyone where we were meeting? Did I really have 35 friends and family crazy enough to do this thing with me? And was that blasted rain I heard outside?

Oh yes, yes it was. Rain and LOTS OF IT. It was the worst bank holiday weather that I can remember. But it takes a lot to keep a Diva down – everyone trundled on in with smiles on their faces with an attitude of ‘let’s do this thing’.

I know I’m biased because I am one, but women are truly amazing creatures. It was so overwhelming to have a group from all different corners of my life come together to raise money for my little girl’s charity. My Mum who turns 70 this year (secret’s out, sorry Mam!) did it. My sister did it. My sister-in-law and her friends did it. Aunts, cousins and even cousins’ partners from both sides of the family did it. A group of my closest and oldest friends did it. So many of my adland gal pals did it. My reflexologist-turned-amazing-friend did it. Friends of friends did it. You all did it. And you’ve no idea how much it means to me.

As a parent of a child with an illness, I’ve always said that the Mini Marathon works on two levels. Yes, it’s an opportunity to raise much-needed funds. And that’s beyond important. But it also raises your emotional resilience. It reminds you that even though your family may have extra challenges to face, you are far from alone. To have people come out in solidarity with you gives you the boost you need to stay positive and push on. And I hope that when Eva is old enough to understand all of this, that she looks back on our fundraisers and takes strength from the fact that even though she may have to fight some battles in her life, she has an army standing behind her.

Speaking of my little salty muse, the most amazing feeling of the day was seeing her and Danny (in their wet gear!) at the end of the race. I really struggled with the last 3k (I had shooting sciatica pains and thought we’d never get to the finish line!), but it was so worth when I got that ‘cuggle’. ‘Mammy, you all wet!’ Yes chickie, Mammy is all wet. Wet from rain, sweat and happy tears.

Salty sweet hug
Salty sweet cuggle     

So now the next Bank Holiday is upon us. And while the weather isn’t much better, the Eva’s Divas fundraising forecast is red hot. The pledges are in and the figures are high. I’m beyond proud to say that this amazing group of women has raised €10,086 for Cystic Fibrosis Ireland. Thank you so much to you all for your time, your ability to sweet talk cash out of people and your incredible emotional support. And of course thank you to everyone who sponsored Eva’s Divas – your generosity means so much and will achieve so much.

CF Ireland called it their ‘One in 1,000’ campaign. I called it ‘One in 1,000 for my one in a million’. And now we’re signing off the story with ‘10K for 10K’. A complete and utter happy ending.


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You are not a machine

It probably seems like I’ve abandoned my blog recently. Trust me when I tell you it’s not because I’ve lost interest or because it was a fleeting hobby that’s about to drop off my priority list. It’s because life is so bloody chaotic and I am just so bloody tired.

I suspect this is a feeling that all CF parents experience. There’s what physically needs to be done every day when all is well (inhalers, nebs, physio, PEP, creon, losec, Aquadeks…), the constant worry that eats away at your sanity, the normal things that every family with young kids deal with – cooking, cleaning, bills, washing, school runs and the rest. Throw work in on top of that and you’ve got a right pressure cooker.

If this sounds like a pity me post, I truly don’t mean it to be. But if I’m honest with myself, a lot of the time I expect myself to be a bit of a machine. I’m a perfectionist and I just don’t like letting balls drop. Eva never misses a treatment. I never miss a work deadline. I travel in and out of the city four days a week to work while a huge part of me aches to be at home. But I have responsibilities. I suck it up. And if I’m honest, I really enjoy working when the wheels are on the cart.

But the wheels aren’t super glued on. And I’m not a machine.

That’s why I’m writing this this evening. To remind other CF parents that it’s ok to have a meltdown every once in a while. CF is a big deal. In fact, it’s a massive deal. And while we’re not the ones who have it, it eats away at our insides. We’d take it if we could and we’d do anything to make it go away and leave our kids alone.

In an emotional blur that’s far from my norm, I recently spent two weeks crying the whole way home in my car every evening. Not understanding what the hell was wrong with me. Eva wasn’t in hospital. My son was fine. My husband too. But I was tired. Tired of being strong. Tired of putting a front on. Tired of keeping so many damn balls in the air.

I think maybe it was a delayed reaction to Eva having had two hospital admissions in three months. Maybe it was me finally accepting that this thing isn’t going away. Maybe it was guilt that I’m not with her all day every day.

I don’t know what it was. But it hurt like hell. And it took a lot of tears to move past it. I saw a counsellor; I talked to my parents, to my husband, to friends. And the only advice I can give to any other parents feeling like this is to do the exact same thing. Please don’t bottle it up. Pease talk to someone. Talking about how you feel makes you a strong person, not a weak one.

If I’m honest, I feel that overwhelming, suffocating feeling raising its head more frequently than I’d like it to. But I figure if I acknowledge it instead of trying to swallow it back down, then it can’t eat me up.

So please talk about your feelings. And when things are just too much, look into your child’s eyes and remind yourself that your bond will get you through anything that this CF life throws at you.

But most importantly of all, give yourself a break – you are not a machine.


Not me.