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.

robot

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

This Christmas, CF meant only one thing: Courageous Fighter

I had my next post all planned in my head. It was to come hot on the heels of Eva’s second birthday in mid December, and it was going to be a celebration of her two years of CF butt-kicking, hospital-free, in-your-face, loving-life existence. But she had this lingering cough which in turn made my fingers linger. I’d had her checked out a couple of times and been told that everything was fine, but I was reluctant to put the post out and put the mockers on ourselves.

I first had her cough checked on the 11th December as a precaution, firmly believing she was OK, which the doctor confirmed. On the 19th, the cough started to sound a little fruity so I got it checked again when I got home from work. She had a slight wheeze and an inflamed throat so the doc gave a course of steroids and an antibiotic ‘to stop it going South’. I kept in contact with her team in Temple Street and they were happy with the plan. By the 23rd she started going off her food. Now I was worried. My girl has her Mammy’s appetite and we don’t stop eating for just any old illness! I rang her team and explained that I didn’t like where it was all going. They reviewed her the morning of Christmas Eve and an X-Ray showed some shading on her previously perfect lungs. I was devastated but they assured me it wasn’t too bad and to follow a hefty schedule of nebs, steroids and oral antibiotics over Christmas.

Eva spent Christmas chained to the nebuliser and there was one thing I was sure of – the antibiotics weren’t doing a damn thing. But what did that mean? A virus that just had to run its course? Or a nasty antibiotic-resistant bacteria taking up residence? (Antibiotics are a necessary evil in CF, often used even with a viral illness to try and ward off a secondary infection. It’s not the same as a regular person stupidly taking antibiotics every time they’re under the weather!)

Eva perked up the evening of Stephen’s Day and we breathed a sigh of relief. She sat up at the table with a gang of us with her knife and fork eating a second dinner of chips after a feed of stew. She was dancing, messing, performing – my girl was back! But when she went to bed it all blew up. She just couldn’t stop coughing, her temp started to climb and her sats (oxygen saturation) started to drop. Wrong direction-ville. Next stop: A&E.

In A&E her sats hovered around 92 (the lowest they can be before hospitalisation really). Her breathing was laboured, but not consistently, and I think because she was sitting there munching rice cakes, they thought she’d be OK and sent her home. I have to say in future, at this point, I’d refuse to go home. Her form was deceptive, but I knew she wasn’t right. By 5.30 the next morning she was on fire and her breathing was so laboured, it was petrifying.

We took her back to A&E and her sats were down in the 80s. She went on a rapid decline and was put straight on to oxygen. As the hours ticked by her oxygen dependency grew. Every time she pushed the mask away her sats would drop lower and lower, and the litres per minute at the wall went up and up. The put in a feeding tube and IV line and admitted her – our Eva was but a shadow of herself in the space of a few hours.

I spent the night following her face around with the oxygen mask because sick as she was, she wasn’t letting the elastic around her face! But the alarm going off on her sats monitor every five mins had me beside myself. To go from defying the health odds to unable to breathe was impossible to comprehend.

The next morning it was finally Monday and her team were back in work (their short 4-day Christmas was the longest four days of my life). Her wonderful consultant Fiona came to see her and expressed concern over how much oxygen she was needing. Thankfully I had left to see Danny and sleep for a few hours when they repeated the X-Ray and mentioned two dreaded words to my husband – pneumonia and ICU.

Thankfully, Eva managed to avoid ICU thanks to a clever machine they put her on called Air Vo. It basically pushed humidified air into her lungs to help her breathe and to help open up her airways through constant pressure – even when she exhaled, the tubes were pushing 15 litres of air in every minute (90% of which was oxygen).

The rest is a blur – my husband and I doing 12 hour shifts each at the hospital, hoping and praying that she’d turn the corner, a corner that was oh so slow to appear. Eva had stopped speaking. If she sat up in the bed for more than 5 minutes, her eyes would roll in her head and she’d have to lie down again. She had developed this strange coping sound, an extended ahemmmmmmmmmm, which she used to self soothe through the constant canulas and physio. One doctor said to us  that her coping sound was a clever one, as the vibrations from her heartbreaking hum would be helping to open her airways. Clever little sick bunny.

When nothing was improving, they changed her IV antibiotic to a stronger one while we waited for the results of her sputum swabs (5 working days, in other words FOREVER). Her bacterial swabs actually came back clear (although they’re not totally reliable – you might only cough up what’s at the top of your lungs) but her viral swabs confirmed she tested positive for a nasty virus called RSV (Ruthless & Shitty Virus, as I like to call it). This at least in some way explained things – she was a little under with a cough already then got hit with RSV which led to bronchiolitis (where the small airways fill with mucus reducing air entry – add that to CF lungs which have extra mucus anyway and it’s a bug party down there) which led to pneumonia.

When she finally started turning that corner, glimpses of our crazy curly girl started appearing. She’d make me hold every sore bit with my hands – her toe that the sats probe was on, her elbow where the plaster over the cannula had caused an allergic reaction, her hand from one cannula, her other hand from another, her other elbow from a failed PICC line insertion, her bruised feet from bloods and cannulas – clearly I hadn’t nearly enough hands! She slowly started to talk – mostly ‘my very sore’ and ‘my want to sit on your knee’. But God were we delighted to hear that hoarse little voice. She never stops talking and it felt like we’d never hear her cheeky chat again. As the days went on the got more sparky – ‘my want chips’, ‘my want ‘moothie’ (smoothie) and ‘my want George’ (the Curious One) – all better indicators than any tests that her little body was finally winning the war.

She’s home now after 12 days in Hotel Temple Street. She’s still chained to the nebuliser, but she’s on her feet and rosy cheeked; demanding second bowls of stew and second episodes of George; insisting on going to bed with a sun hat on; ringing people on her hammer to tell them ‘oh no, I’ve lost my boat’; requesting baths at regular intervals and generally ordering the three of us about like only Eva can.

All I can say from the experience is that I’ve never known sadness like seeing my child with tubes up her nose and IVs anywhere they could get a vein. I’ve never know fear like seeing her sats plummet to the 70s when they changed her nose prongs and she was without oxygen for 30 seconds at most. I’ve never know despair like holding her down for bloods and ng tubes that she kept pulling out, knowing she was thinking ‘why aren’t you protecting me?’. I’ve never known helplessness like seeing her have diarrhea every time she coughed. But I’ve also never known pride like seeing her fight her way out of this. I’ve never known admiration like seeing her pull open her vest so the doctor could check her chest. I’ve never known amazement like seeing her explain that the probe on her toe put the numbers on the screen and the tube put milk in her tummy. And I’ve never known love like seeing a vulnerable little girl make all who cross her path light up with her crazy, determined ways. Eva, you’re the ultimate tonic.

What’s a weekend without the fear?

I (vaguely) remember the days when the fear was brought on by too many vodkas of a Saturday night. These days it feels like the fear is never far away, but it’s brought on by something entirely different. The cough.

A simple huff or puff is all it takes to send this CF Mama (and most others) into a tailspin of chaotic, neurotic worry. And let’s be clear, the fretting freefall doesn’t only happen when Eva coughs. It happens when anyone dares to expel some irritating substance from their respiratory tract in her presence. Anyone whose brain even thinks they might need to bark it out. Because obviously every single bacteria and virus in the world has the sole purpose of infecting my daughter. Insane? Completely and utterly. But it’s ok once you acknowledge that, right?

Of course the most difficult part of this cough-phobia is when it’s someone in the family that’s hacking. Bad enough if it’s me or the hubby. We’re pretty swift to cover our mouths. But oh my sweet baby Jesus the absolute petrification when poor Danny gets a cough. Danny is four, so can’t possibly grasp the seriousness of the situation. He just knows his sister’s lungs need help to work as well as ours. But I have to hand it to him, he’s pretty damn good for a four-year-old. I’d say he’s had at least six coughs since Eva was born, including croup twice, yet she’s only ever caught one dose off him. My saying ‘cover your mouth’ about 600 times a day is clearly paying off.

But isn’t that sad in itself? That your poor wee man is under the weather and you spend your time nagging him because you’re in a cold sweat about his sister catching it. It really can’t be easy to be the sibling of little person with CF. Of course I’m totally aware of giving Danny bucketloads of TLC and I always err on the side of a doctor’s visit if I just don’t like his form. But  I catch myself at times, harshly snapping ‘cover your mouth’ out of sheer frustration, and then the wave of guilt comes. Before Eva arrived, I’m pretty sure I was a sympathy machine to his every snuff and puff. It’s not that I care less now, I just have to worry in two directions. I can’t wait until he’s old enough to understand all of this so I can tell him he’s a hero for covering his mouth and washing his hands with (mostly!) good humour at such a young age. Eva is lucky to have you Dan. You’re the right person for the protective big brother job, even if you don’t realise it yet.

Both Dan and Eva are coughing today, hence the post – but fingers crossed the fear remains just fear.