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.

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Not me.

All we have is today

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

To support Eva’s Divas in the Mini Marathon, go to http://www.mycharity.ie/events/berniefromevasdiva

Eva’s Divas FM

Taking big strides for little lungs!

Thanks to LMFM and the lovely Gerry Kelly for talking to me yesterday and helping to raise awareness for Cystic Fibrosis. There’s still time to register for the Mini Marathon and join Cystic Fibrosis Ireland’s One in 1,000 campaign. Simply sign up on http://www.vhiwomensminimarathon.ie/ and then email nmcauley@cfireland.ie. Or if you’d like to join Eva’s Divas, we’d love to have you on board. Just register on http://www.vhiwomensminimarathon.ie/, then email me on littlemisssalty@gmail.com and I’ll do the rest.

You can have a listen to me on yesterday’s Late Lunch programme here:

http://utv.vo.llnwd.net/o16/LMFM/2015/03/13/LateLunch130315.mp3

And you can sponsor my sweatiness here:

http://www.mycharity.ie/events/berniefromevasdivas

One in 1,000 for my one in a million

A short article I wrote for Cystic Fibrosis Ireland in support of their One in 1,000 campaign for this year’s mini marathon. You can support Eva’s Divas on http://www.mycharity.ie/event/berniefromevasdivas/ or on any of the Divas’ own pages. There are 25 of us and counting!

My name is Bernie Martin and I’m a 35-year-old Mum of two adorable kiddies. My son Danny is 5; he doesn’t have Cystic Fibrosis. And my daughter Eva is 2; she has CF.

Eva was diagnosed with CF at just three weeks old. Hearing those words coming out of the consultant’s mouth was like being stabbed in the stomach – it was shocking, devastating and just incomprehensible. There were no immediate CF links on either side of the family and our first child had a clean bill of health. We had no reason to fear that our second child would have any complications. We also knew nothing about CF at the time, and ignorance leads to fear. As our understanding of CF grows every day, so does our ability to cope, to fight, to accept.

CF is a chronic, life-limiting illness – that’s the bigger picture. But as a parent you can only tackle it one day at a time. You focus on the daily wins and hope they help you win the bigger fight. CF completely restructures your daily routine – there are inhalers, nebs and chest physiotherapy sessions twice a day. And that’s when Eva is well. You’re all the time trying to stay ahead of the illness. This treatment regime can be doubled or more when a chest infection takes hold. Eva also takes enzymes with her food as her body can’t absorb fat or protein by itself. That’s because her digestive enzymes get trapped in her pancreas thanks to the thick sticky mucus in her body. But, like anything, you get used to a routine and it becomes your ‘new normal’. Eva knows no different and that’s the massive benefit of newborn screening – she doesn’t fight her treatment regime, and this preventative care helps protect her health. That’s all the matters.

The hardest thing about CF is the uncertainty it creates around our daughter’s future. It’s a progressive illness and while treatment has come so far and new developments offer much hope, you still don’t know if your child will be one of the lucky or unlucky ones. Maybe we’ll manage to keep her illness in check and she’ll live a reasonably long, happy life. But despite medical advancements, many CF patients are still taken from this world way too young. You just don’t know what the future holds. You put a brave face on it and you live for the moment, but it’s in the back of your mind every millisecond of every day.

I’m taking part in One in 1,000 because I want to raise awareness of CF and, of course, funds for Cystic Fibrosis Ireland. And because I would do anything for my daughter. I’ve sky-dived for the cause, I’ve run for the cause, I’d do literally anything for the cause. I have to turn all the emotion that comes with CF into positive energy. And I want to lead by example. I want to show Eva that good can come from bad. That people are amazing. That she’s amazing. That’s she’s loved by so many people and inspires so many people. Our team ‘Eva’s Divas’ doing the Mini Marathon is just one small way of embodying that energy.

I’d encourage others to take part to help us make CF stand for Cure Found. So i you have a pair of runners but you don’t have a cause, we’d love to share ours with you. You get to lose pounds and raise pounds – everybody wins.

If I could sum up Cystic Fibrosis in one word I’d have to say it’s relentless. There’s just no escaping it. But the future’s bright and there’s so much hope on the horizon with new drugs and therapies being developed. So every day, we live in hope. But most of all, we live in love.

My one in a million is back in hospital.
Please support Cystic Fibrosis Ireland and help make CF stand for Cure Found.

A little love for the day that’s in it

Roses are red,
Violets are blue,
We’re very lucky
To have a kid like you.

With your mad curly hair
And devilish grin,
Every second we spend
With you is a win.

The funniest girl
I ever did meet,
Full of laughter and giggles
You’re always a treat.

CF is a bummer,
A cross we must bear,
But with courage and resilience,
We’ll make it, I swear.

We’ve all got your back
Through sickness and health,
Our little ray of sunshine
Your presence our wealth.

We pray for a cure
Every minute, every day
So your life may be fairer
In every way.

Your genes may be shitty
But your heart is so large
I’ve no doubt you’ll show
CF who’s in charge.

As you grow up you’ll notice
You’re a little bit different,
With physio and meds,
Nebuliser equipment.

But remind yourself of this
Every time you feel low,
You’re loved and you’re treasured
More than you’ll ever know.

To Eva, our diva,
A true super star,
Believe in yourself
And trust you’ll go far.

Don’t ever let CF
Control what you do,
It’s a daily challenge
But does not define you.

You’re wise beyond your years
And totally wild,
So special, so amazing,
Our beautiful child.

littlemiss
The love of our lives