My Little Miss Salty

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

I’ve been lucky enough to travel a fair bit with work over the years. Shooting tea ads in Thailand, beer ads in New Zealand, chocolate ads in Prague…you name it, I’ve done it. It was always one of my favourite things about my career as an advertising copywriter. And why wouldn’t it be!

Of course it got more challenging when I had my first child, but the recession had also hit, so a reduction in foreign shoots coincided with those hands-on first years. That made it seem easy enough to juggle. Fast forward to having a child with Cystic Fibrosis, and the thing I once loved has turned into at best, a preparation marathon, and at worst, an admission to hospital while you’re away. This is the most soul-destroying feeling of all time.

I’ve had the spectrum of travel tales since my daughter was born, each one a reminder of just how much of a bitch CF is for everyone involved.

Eva’s first hospitalisation came over Christmas when she was just two years’ old. She had been incredibly well up to that, so it was a bolt-out-of-the-blue reminder that CF could turn everything upside down at any time. I was scheduled to go to a TV shoot in South Africa in the New Year – I obviously pulled out and my employers expected me to behave no differently. They were empathetic, understanding and everything I hoped they would be in the circumstances. But this was the beginning of the compatibility issues – could having a career in advertising and having a child with Cystic Fibrosis ever peacefully co-exist?

To test my nerves further, this first hospitalisation and travel cancellation came just after I had handed in my notice to move on to another agency. I had been managing well and when the headhunt came knocking, I decided I shouldn’t let my daughter’s CF hold me or my family back. Of course I could still progress the career ladder. Of course I could earn more money to keep us comfortable. So I said yes. Brave or stupid? Who knows!

Either way, CF decided we deserved another smack in the mouth and one month into my new employment, the unthinkable happened. I was due to present at a meeting in Rotterdam, my first time representing my new agency, and Eva took ill a few days before the trip. The morning of my flight, I knew in the pit of my stomach that she was going under and would be hospitalised while I was away. Bear in mind I was going to be away for one night. ONE NIGHT. That’s how quickly a child with CF can go down.

It was my first month working there and my first business trip. I couldn’t pull out two hours before the flight – how could I? I had been up all night nursing my daughter and I dragged my bleary-eyed and insanely worried and emotional body to the airport. I flicked the necessary switch and pulled off my part of a three-hour session with a global client. But afterwards, I didn’t feel proud of myself for being able to hold it together. I felt like shit. Because long term, no one will ever remember that meeting except me. I’ll remember what an awful mother I felt like during every single minute of it. And when I checked my phone as we left the client’s office, the inevitable had happened and Eva was in hospital on oxygen. I did what I had to do that day, but if it happened again, I’m pretty sure I wouldn’t get on the flight regardless of the consequences. (By the way, this employer has also been incredibly kind to us.)

I’ve had a few short trips since, and thankfully all has gone well. I’m just home from a two-day work trip where I got to judge at the prestigious D&AD Awards, and again it went perfectly. It does happen! My daughter is in good health and I got to travel and remember the me that I was before CF started demanding attention.

But the problem is that each time there’s a trip, the turmoil is huge as you don’t know what plans CF has for your trip duration.

So what do you do?

Do you resign yourself to career and CF incompatibility issues and just give it up? But if you do this, are you teaching your child that CF is in charge? That we need to limit ourselves because of it? That’s certainly not the narrative I want running around her head. I want her to grab life and pursue it with every ounce of energy she has.

But if you keep up your career, are you teaching your child that work comes before her health? That you wouldn’t make sacrifices for her? Which couldn’t be further from the truth.

I don’t have the balance. I don’t have the answer.

And perhaps I never will.

In the mean time, I guess I’ll just keep winging it.

Image from Pixabay

Last week was an historic and monumental one for the Cystic Fibrosis Community – after over 10 months of relentless campaigning, a deal on the breakthrough drug Orkambi was finally reached.

The deal means that around 600 people with the ‘double delta’ version of this life-limiting condition will get access to a drug that has been shown to reduce the time spent in hospital, reduce the number of exacerbations, improve weight and lung function and generally offer a much better quality of life. A life with more promise. A life with more hope. A life more normal. A life!

I could not be happier for the patients and families who can now put the uncertainty behind them and look to the future without being crippled with fear. I campaigned heartily alongside them and I’m bursting with pride at what the community has achieved. We may be small in numbers but we’re massive in heart and determination. We are the definition of small but mighty.

However, I also have to acknowledge the anti-climax I’m feeling on a personal level. I put so much time into running #YesOrkambi online that I guess it was a distraction from the reality of my own daughter not being eligible for the drug. So despite myself, my heart feels devastated. A devastation that I don’t want the success to be tainted with but that it’s hard to shake off. Generally I’m still devastated that my daughter is unlucky enough to be in the minority of people born with Cystic Fibrosis. But specifically I’m devastated that she’s unlucky enough to be in the minority of CF patients that neither wonder drug (Orkambi or Kalydeco) will treat.

There is still 30% of the CF Community without a drug available to treat the underlying cause of the illness and I worry that they will be forgotten about in the hype.

PLEASE don’t get me wrong, this deal is as good as it could be at this point in time as it also includes any pipeline drugs that might come to market from Vertex (the pharmaceutical company) over the next ten years. This is so important as it means that breakthroughs in that time won’t have to be fought for in a soul-destroying circus like the one we’ve just lived through. This means we’ve won a bigger fight and a more important one. We won the fight that is the PRINCIPLE of access to life-changing, high tech medication. This is landmark. This is crucial for more than this one patient group. This is everything.

And without this step, there would be no next step.
There would be no next drugs.

BUT it’s still hard to be in the minority. To be in the group that’s still fiercely watching clinical trials, waiting for a breakthrough for their own child’s rare CF genetics.

Am I jealous? No.
Am I bitter? No.
But I am a little sad.

The heart will feel what it feels no matter what the head tells it. So rather than put a front on and pretend those mixed emotions don’t exist, I’m acknowledging them in the hope of dealing with them and moving on, as this is a good news story for everyone, not just those who will immediately benefit.

I’ve cried so much in the last week and most of the time I can’t even tell if the tears are happy or sad. In truth, they’re a mix of every feeling imaginable. I sense that we are living through a massive moment in history, the beginning of what will hopefully be a golden era in medicine. But I’ve been listening to my daughter cough for 6 months solid, so it’s hard to not feel impatient when the day-to-day is sometimes so challenging.

Yet I also feel I have no right to be sad. What about those families who have already lost children or other family members to this unforgiving disease? For them it is the ultimate bittersweet and there is no ‘maybe our time will come’. Science didn’t come in time for them and that must be impossible to live with emotionally. I admire their strength and positivity in fighting for this next generation. We still have a maybe, and a very real and large maybe at that. So in the words of a certain songstress, I need to shake it off. I need to stop thinking about our miracle that feels painfully close yet still so painfully out of reach. I need to focus on keeping my daughter as well as she can be, so that WHEN her breakthrough comes, she is ready, able and well enough to embrace it with both arms. I need to channel that feeling of hope. Just hurry the f*** up already!!

Illustration courtesy of the lovely Olivia Golden