As we all eagerly await news on Orla Tinsley, who is in surgery undergoing a double lung transplant, it seems like the perfect time to pause and reflect on the gift that is life.

Most days we have our heads down, fighting through whatever challenges the day is throwing; rarely having the opportunity to look up and just BE.

I, for one, have had my head completely buried in the detail this last while – we’ve been dealing with our first pseudomonas swab, I’ve been setting up a new business and I’ve been working with our school to make it safer from a CF point of view. All worthy and necessary tasks, thoroughly deserving of my full attention.

But Orla’s inspiring ability to look up past her pain and suffering, and see the beauty that is life, has really made me think.

It’s made me pause and realise that even though we’ve had to fight pseudomonas for the first time, we are still winning.

My daughter is full of life and love and the eradication treatment, while a burden, has taken very little out of her; but truthfully lots out of me. Of course this is because I am aware of (and scared of) the bigger picture. It is an emotional blow when CF sneaks in and lands a punch. But a child’s ability to just live in the now and embrace each day for its experiences and fun is the something we should all aspire to. As is Orla’s ability to believe, even in her darkest hour, that brighter days are coming.

As a CF parent, you are very practical and proactive, doing everything in your power to protect your child while also ensuring that they lead as normal a life as possible. But a little part of you secretly hopes against hope that your child will be different. That they won’t follow the path. That they won’t grow the bugs. That they will be spared pain and suffering. This is human nature. This is love.

Acceptance, for me, has always been the hardest thing. But today, looking up and looking back on the year, I am filled with hope. In this year alone, my daughter finished playschool and started big school, Orkambi was approved for double deltas, the trials for the triple were announced, I survived my first experience as a keynote speaker, I started a new business and I have two wonderful, happy children and a safe home, filled with snuggles, stories and laughter. Life is good.

It’s hard not to feel floored by the knock backs, but drag yourself back up and keep on pushing on. Every year is a gift – unwrap it, embrace it, love it, live it.

And believe that good things are coming.

Edited to add this update on Orla – we’re all rooting for a safe recovery!

 

I had the (slightly terrifying) privilege of doing a talk at The Future in the RDS at the start of this month. In it I spoke about the difficult decision I had made to take a chunk of time off work to look after my daughter who has Cystic Fibrosis, and also start a blog and campaign for the funding of CF wonderdrug Orkambi.

While a lot of the talk was centred around the ‘YesOrkambi’ campaign, I felt I couldn’t discuss my own story without touching on the broader issue of why taking a break (or in my case, Carer’s Leave) feels like a career suicide risk. There seems to be some kind of assumption that if Mums take a time-out, their ambitions have clocked out for good.

This is a total crock of shit. If someone goes travelling for a year, that’s acceptable. They’re finding themselves. They return, seen as enriched and brimming with transformational life experiences to bring to the table. But if Mums want to enrich their family lives, engaging in such transformational life experiences as keeping their little people alive and happy, while multi-tasking as nurses, educators, referees and psychologists, they are somehow less on their return?

Unintentionally, we don’t help ourselves either. Because we are getting less sleep and have less headspace, less patience and less time for ourselves, we often see ourselves as less than we were.

But becoming a mother doesn’t make you less. It makes you MORE.

You are more insightful, you are more considerate, you are more in tune with the world.
You have more humanity, more compassion and more sense than to tolerate bullshit.
You have more passion, more commitment, more drive and more resilience.
You have more intuition. More moral ambition.
You have emotional intelligence like no others on this planet.

And you are STILL all the things you were before.
Contrary to popular belief, our children don’t actually erase the contents of our brains.

It’s time to start questioning how others perceive us.
It’s time to start questioning how we perceive ourselves.
It’s time to change our language and focus on the positives.

We don’t need to apologise for having families.
Or for those families taking time and dedication.
We need to see parenting as upskilling.
It’s ok to have loves outside of the office.

We need to speak up.
Talk ourselves up.
Stand up for ourselves.

And we need employers to see the benefits of mothering up.
We need to tell them how damn lucky they are.
Because while mothers may be nurturing and caring, like any protective species, we are also fierce.

Don’t be afraid to show your teeth.

 

 

There’s a sentence I thought I would never write. I’ve always been an annoyingly responsible person, gainfully employed since I was old enough to reach the washbasins at the family hair salon.

I’ve worked as a writer in advertising agencies since I finished my Masters in 2012. Having reached the level of Creative Director, one would assume I would keep going on the same trajectory. Why wouldn’t I?

There’s one very simple reason, and that’s mental health. Since my daughter was diagnosed with Cystic Fibrosis at the start of 2013, I have been trying to keep way too many balls in the air. Learning about her illness. Learning how to manage it. Getting used to both preventative and reactive treatments. Dealing with grieving for the life I thought my child would have. And the life I thought our family would have. All the while trying to pretend like it wouldn’t change anything. I could still go back to work and pursue my career, right?

Well, right. I could. And I did. But while making so many pieces of myself, my mental health was slowly but surely shattering. I was commuting 2.5-3 hours a day to a demanding job. The pressure of my work used to excite me and it was absolutely part of the thrill. But I found myself putting a good front on, while inside I was feeling resentful, overwhelmed and utterly lost and broken. This was a toxic combination and I knew I had to do something.

I took a time out, taking Carer’s Leave to adjust the balance in my life and to feel more in control of my daughter’s health. I’ve learnt a lot about myself in that time. I’ve learned that I’m the type of person that needs to work, but I’ve also learned that I refuse to let anything get in the way of the wellbeing of my family any more. I can see both of my children thriving with better stability at home. I hear more laughter in my house. I feel more love in my heart. And my daughter hasn’t had an admission in my time out of the office.

So despite having a supportive employer who was prepared to try out flexible ways of working, I’ve decided to cut loose. Not to give up working altogether, but to start my own business and work on my own terms. I’ll work more when all is well, and less when it’s not. I agonised over making this call. But the hardest decision in the world seems like the most obvious now that it’s made.

It’s time to stop pretending that nothing has changed. Everything has changed. It’s also time to acknowledge that if you can’t change a situation, then perhaps you have to change yourself. So 2018, I’m coming for you. A new business, a new dawn, a new day. Fuelled by love and powered by hope; this CF Mama is getting her shit together.

For a few months every year we get to experience something resembling normality. Every second person hasn’t got a cold or cough, I stop seeing other children as walking biohazards and our Cystic Fibrosis routine stays at preventative. This still means nebulisers and chest physiotherapy at either end of every day, but we do this like we do teeth brushing – we’re just so used to it.

I see my daughter running around the garden and jumping on the trampoline without any kind of coughing fits. She’s able to keep up without coughing up. Her face shines like a thousand sunbeams. Her cheeks are full of colour, her eyes are full of mischief and her night is full of dreams not hacking. She sleeps, I sleep, we are all round happier and well-adjusted individuals.

We leave the house without the fear of what germs we might bring home with us and I am genuinely quite relaxed instead of just faking it like I do for the rest of the year. I don’t have the CF nurses on speed dial, we manage to catch up with friends without snotty nose cancellations and my shoulders drop a minimum of three inches. I even have some days when CF doesn’t majorly cross my mind, other than keeping on top of meds. This is spectacularly huge! Oh, to feel like that every day.

Summer is our happy place and I so wish we could bottle it. I sometimes wonder if I could train myself to be this positive for the rest of the year could I somehow affect how we experience the other seasons. Head in the sand moment? Completely. But I don’t care. I’m building myself up and a little positivity goes a long way from a mental health point of view. So this year, I’m making a vow to myself to think like it’s Summer even when Winter rolls in (you may need to remind me of this come November). I’m not naïve enough to think that a sunny disposition can somehow shine CF into the shadows, but wow, that’s a lovely thought. And we all need more lovely thoughts in our lives.

Speaking of loveliness – shine on my sunny little CF warrior. You are the light of my life, every single month of the year.

Bernie xx

I’ve finally done it! I’ve put my big girl pants on and moved my lovely little lady into her own room. I won’t lie – there were a few tears, a sizeable amount of separation anxiety and a few sleepless nights (you’ve guessed it, they were all mine).

Ok ok, so she’s four. And a half. And I’m sure I should have done this, what, four years ago? But she’s my last baby, my muse and my world; I would have let her sleep beside me forever.

But never fear; my plans were clear:

• There’s a spare bed in her room so I can still keep up the night’s watch when her CF is causing trouble,
• She was an integral part of the design team to help her take ownership of her space,
• And there’s enough pink in there to power several unicorn manes, so I guess all is right with the world of zzzzzs.

I’m slowly learning to sleep without her sweet breath on my face, although I do still pine for her nighttime cuddles. (My husband isn’t half as affectionate in the wee hours. He also takes up a tad more space.) She still occasionally creeps out of her bed in the middle of the night to come into me to whisper these four precious words – ‘I love you, Mammy’ – but how could you be cross waking up to that? When she does, I walk her back to her room, tuck her in and give her a big kiss; to which she responds by lifting her shoulders to her ears, smiling with glee and uttering the most adorable ‘awwwwwwwwwww’. I know, I know, we’re so Disney. But our lives have enough moments of darkness (‘Winter is Coming’ and all that), so I’ll take all the affection, sunshine and rainbows that I can get my hands on.

I’m very proud of my little warrior taking this next step towards independence. (And I’m more than a little proud of myself too!) So for those of you out there who are co-sleeping and worried you should be putting a stop to it – don’t fret, the time will come when your little people are comfortable in their own slumber skins at night and you’ll miss them like crazy. It’s not what the parenting book say, but I say, enjoy it while it lasts. I know I will forever treasure the fond memories of those little feet in my face.

Sleep well,
Bernie 

 

 

 

To my darling baby girl,

On the day you were born, it wasn’t just my world that changed forever. I changed forever. My heart, my mind, my being; they are all unrecognisable since. You have touched, enriched and changed every single thing about me as a person.

When I went into labour, all I was concerned about was having a VBAC. Looking back I reflect on how naïve I was; I knew nothing of what was coming. I knew nothing of the massive journey we were about to embark on together.

When my waters broke they were green – how panicked would I have been if I had known then that you had Cystic Fibrosis. The idea of you inhaling meconium into your vulnerable little lungs would have sent me into a total tailspin. But despite the meconium, your heart rate stayed steady – you were cool as a breeze. And four years later, you still are.

I had to be sectioned in the end, but once again, you took the procedure in your stride. Me on the other hand? I had a haemorrhage and lay shaking uncontrollably on the operating theatre. My body was in shock and I remember the unsettling feeling of not being able to control the movement of my limbs. They went to put you on my chest and I was terrified because I couldn’t calm my body down. I didn’t want you to fall. I wanted to protect you. But when they placed you on my chest, my body instantly became still. It was like you had some magical, spiritual quality. You soothed my entire being. And you still do. Every single day. I don’t know how you do it, but you do. As your mother, I feel it should be my job to settle you, yet it is you who settles me.

As soon as they lifted you, I began quaking again.

You were born with a tough set of genetics; a health challenge that is daunting to say the least. But you were also born tough. I’ve never met a little girl with so much courage or personality. With your crazy curls and the positivity that oozes out of your pores, you light up every single room you enter.

You move like a dancer. Negotiate like a chancer. Hug like a bear. You speak with words beyond your years. You somehow always know what to say to lighten the mood. You empathise and notice people’s moods in a way I never thought possible for a person who has only been here four short years. No matter what is going wrong, it is impossible not to smile in your presence. While I live with fear in my heart as we fight CF together, I also live with an abundance of love, laughter and hope.

I may be more anxious than I have ever been in my life, but I am also more happy than I have ever been. Because you, my little lady, are infectious. Your giggle, your personality, your attitude – you are truly magnetic.

I know parents are supposed to remind themselves that their children are their children, not their friends. But I don’t care what the books say. You are my very best friend on this planet. Everything in my life is better in your presence. I love everything about you and I always will.

You may have been dealt an imperfect set of genes, but don’t let that hold you back. Always remember that you are powerful, you are precious, YOU ARE PERFECTION.

We’re off to the sun
For some family fun
But I have a secret confession…
It’s not just four of us flying,
We need space for my trying
Germ avoidance obsession.

My germaphobe is not new
But it’s also quite true
That it’s gotten a whole lot worse,
Since my daughter’s diagnosis
Of Cystic Fibrosis –
An illness that can be a curse.

I’m not going to lie
Each time that we fly
It’s not people’s faces I see…
It’s seat-numbered germs
I just can’t come to terms
With the bug fest surrounding me.

Of course my kids don’t know
That their Mum’s a psycho
I do my best cover up job…
Milton wipes in one hand
All the gel in the land
‘Die, little buggies!’ I sob!

If I hear a sneeze
An audible wheeze
Or worse, a big, fat, juicy cough…
My heart starts to sink
Someone pass me a drink
Stop world, I just want to get off!

All that recycled air
Is the ultimate scare
I’m practically shitting my knickers…
For the length of the flight
The fear is not slight
Of the kids who are coughers and lickers.

If the kids need a wee,
I can’t breathe when I see
The state of the aeroplane jacks…
‘Don’t touch a thing’
Is what I must sing
While inside I have panic attacks!

You might think that I
Should give Valium a try
Or get over myself completely…
But I’ve seen how a cold
Can do damage untold
Hospitalising my sweetie.

But we must embrace life
Despite fear and strife
My daughter, she deserves to travel,
And have fun at the pool
Show new friends that she’s cool
While I pray our luck doesn’t unravel!

So wish us well as we go
All you germaphobes know
That it’s hard to relinquish control…
But with a squirt and a wipe
I’ll manage my type
And the break will be good for the soul!

Like lots of people, I’ve found myself fixated by Netflix drama ‘13 Reasons Why’, binge watching when I should have been binge sleeping. The show tells the story of Hannah Baker, a high school student suffering from depression thanks to being the victim of cyber bullying, stalking, sexual assault and many other soul destroying experiences. Hannah takes her own life, leaving behind audiocassettes detailing the 13 reasons that pushed her to the edge. Each episode covers one tape side, documenting one reason (and one person) that contributed to her taking this fatal step.

Although the idea of a teenager using tape cassettes lacks real world credibility, it’s a captivating device that keeps you yearning for the ‘next side’. But it’s not an easy watch, and the show has been much criticised for glamorising suicide, with many suggesting that the idea of revenge from beyond the grave may (unintentionally) prove attractive to those in similar states of distress. On the flip side, ’13 Reasons Why’ examines really important issues facing the youth of today. It makes the audience think about how we could all do a little more to look out for each other – a message that’s of critical importance for people of every age, not just teens.

My children are young, so I don’t know how I would feel if I had teenagers and they wanted to watch it. I suspect I would insist on watching it with them, so that we could openly discuss the issues. To me, regardless of your opinion of the show, this is its one true strength – as a prompt into topics that are pretty impossible to bring up otherwise.

As a parent, it reminded me to cherish this time when my children are so young. Their minds know no dark; instead they’re filled with thoughts of ponies and football, not self-doubt and paranoia. I always know where they are. They tell me literally every thought they have (I will now stop groaning at this fact!). I am fully embraced; I am never shut out.

As a person, it makes me think about the times I have been very low myself. My daughter’s illness has occasionally brought my own mind to dark places and while I consider myself generally a very level-headed person, I’ve found these thoughts extremely hard to deal with. I’ve had panic attacks, I’ve had fleeting thoughts of ending the torturous emotional pain, I’ve cried tears that I thought would never stop. And while I’ve been able to shake myself out of it, it’s made me realise how easily a seemingly strong person could mentally slip into considering the unthinkable.

Our children have a lot more to deal with than we ever did. We didn’t grow up online. Our mistakes weren’t posted on the Internet to follow us around forever. And we didn’t have to grow up half as quickly. If we learn only one thing from this show, I think it’s that we should never dismiss how someone is feeling, whether they’re a child or an adult. Even if the trigger for low mood doesn’t seem all that serious to us, it could be everything to them. We’re all so busy trying to keep up with our chaotic lives that we forget to ask each other how we’re doing. So whether you loved ’13 Reasons Why’ or hated it, make it one good reason to ask someone how they’re doing today. Make it one good reason to remind your children that they can talk to you about anything, without worrying about getting into trouble. Make it one good reason to be kinder to people – because the truth is, you just never know what’s going on behind the façade.

Image from Netflix