Why it’s hard to be in the minority of the minority

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.

Orkambi long press 3

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

 

 

At what age will I grow out of co-sleeping?

In most houses, parents can’t wait for their children to grow out of the love of co-sleeping. They long to stop clinging perilously to that couple of inches at the edge of the bed, while a little person holds the rest of it hostage. But in our house, I think it might be me that’s addicted to the midnight cuddles.

My daughter has Cystic Fibrosis, which kind of gives me an excuse, as I can monitor her breathing when she’s close to me. She sometimes wakes coughing and I’m there to comfort her and tap her back to help move whatever mucus is caught. And I know if something is coming on her before she even does – the slightest change in her breathing pattern and I’m on it. So I can make some pretty convincing points as to why it’s ok that I haven’t nipped it in the bud. But aside from reasoned arguments, truth be told, I actually just love it.

You see my daughter is 4 going on 40, with a mop of delicious curls and a cheeky smile that would send the hardest heart into melt mode. She sometimes giggles in her sleep. She usually sleeps with one eye half open (total FOMO). She sometimes wallops me in the face mid-dream. But every single time she wakes up, be it 4am or 7am, she flings her little arms around me and says ‘Mammy, I love you’. And I am complete and utter mush.

I’d probably be tougher on the issue if she was overly needy or dependent during her waking hours, as she obviously needs to flourish as her own little person. But she’s not needy in the slightest. She is beyond able to stand on her own two feet. She jumps into the middle of company. She is happy to entertain herself if her brother is not around to play with. She has a grasp of her own medication and what’s needed when. She is 100% happy and confident in her own skin. So much so that I could learn a thing or two from her!

I know that any day now she’ll turn around and say she doesn’t need me at night anymore and I’ll wince at how grown up she’s getting. So until then, I’m taking every single cuddle I can get. She looks at me like I am her world and she is most definitely mine. Why would I want to break up something so special?

My husband sometimes teases me that myself and the kids are so ‘Disney’. And while I wish I could make the rest of her life like a Disney movie, I can’t. My daughter is going to have tough challenges on the road ahead. What I can do though, is reassure her that she has 24-hour protection in the arms of her Mother. And when the cosying up together ends, I’m sure the memories of these precious moments will comfort me for the rest of my life. She’s my last baby and her cuddles are my drug. I’m high on love, comforted by curls and at peace with my parenting choice. I don’t know what age she’ll grow out of co-sleeping at. But I suspect it will be long before me.

 

Calling Bullshit!

A few weeks ago I wrote an article exclusively for The M Word, titled ‘Calling Bullshit on ‘Special Children are only sent to Special Parents’. It felt really good to get it out of my system! And it turns out I wasn’t the only one who had been tolerating these kinds of phrases while silently screaming on the inside. If you missed the post, have a read and see if you agree:

http://themword.ie/calling-bullshit-special-children-sent-special-parents/

The article really struck a nerve and is currently at over 20,000 shares. It gained such traction that The M Word asked me to write a follow-up piece. You write these things thinking no one is really paying attention, but it turns out, sometimes you’re far from alone in your feelings.

If you missed the follow-up, catch it here:

http://themword.ie/special-reaction-calling-bullshit-special-parents/

New article tomorrow.

Thanks for reading,
Bernie x

 

 

To the parents of newly diagnosed children: YOU’VE GOT THIS

 

When you’re childfree and overflowing with fuzzy dreams about how your shot at motherhood will go, you never expect to find yourself with a child with additional health challenges. Statistics are something that happen to other people, right?

Don’t get me wrong, you know that nothing is a given. But in your heart of hearts, you don’t expect to be ‘that Mum’. The one that gets the sympathetic looks. The one that people are afraid of saying the wrong thing to. The one that gets respect but that nobody wants to be.

Cystic Fibrosis. Epidermolysis Bullosa. Cerebal Palsy. Down Syndrome. Epilepsy. Autism. ANYTHING can land at your door. There is always a condition that’s ‘better’. And there’s always a condition that’s worse. And while you hope your children will be blessed with good health and a straightforward path, there are no guarantees.

I wanted to write this piece for Mums who are dealing with a diagnosis, whatever that diagnosis might be. No matter how serious or manageable. Because I was that Mum. I am that Mum. And I want to give you some hope.

You can’t wave a magic wand and fix your child’s ills. You can’t stick your head in the sand and pretend it isn’t happening. And you can’t run away from the fact that you’ve become ‘that Mum’. But it’s not all doom and gloom.

You will have a bond with your child that is completely unbreakable. You will learn new skills and gain new strength. You will make the most of every single day, because you understand that nothing in this life can be taken for granted.

Yes, you will cry. Yes, you will feel sorry for yourself sometimes (you’re human). You will look at friends who seem to have it ‘easy’ and wonder, why me? Why us? You will curse God or the lack of one. You will fight with your partner or family out of sheer frustration. You will cry when no one is watching. And you will feel hurt that you never dreamed possible.

But you will get back up. You will channel your explosive emotions into positive action and you will make a difference to your child and to the world – they are after all, one and the same thing.

When you receive a new diagnosis, it’s a lot to take in. Sometimes, too much. It’s overwhelming and you can feel like you’re drowning in a sea of worry, fear and self-doubt at your ability to cope. But believe me, whatever your child has got, YOU’VE GOT THIS. Your love for them will inspire you and change you in ways you never thought possible. So keep your chin up. Keep your heart open. And most importantly, keep your faith in yourself. You are stronger than you give yourself credit for.

Illustration courtesy of Olivia Golden

A letter to my child who doesn’t have an illness

 

To my one and only son,

I wanted to write you a letter for you to read when you get a little older. I’ve said these things to you in my head a million times and thought it was time to put them down on paper.

Right now you’ve just turned seven and are full of life, full of mischief, and also full of questions about your little sister and her Cystic Fibrosis.

I just want you to know that I understand it’s not easy being the sibling of a child with a lifelong illness. I see the worry on your face when she’s not well and can’t stop coughing. I see the deep-thinking going on behind your eyes when you should be thinking about football or Lego instead. I know that you’re dealing with concepts and realities that should be way behind your years. You love your sister and worry about what it all means, as do I. But it pains me to think of you having similar thoughts.

I also know that you resent CF some days. You even resent your sister at times! And that’s ok. You’re only human. And a seven-year-old human at that! It’s not easy when everything has to work around nebs and physio sessions, even when you’re not the one who needs to do them. It’s not easy when you’re told we can’t go here or there because it’s not CF friendly or because it will be too crowded and it’s cold and flu season. It’s not easy when your sister is in the hospital and you’re passed from pillar to post. These pillars and posts may be your Nanas or Aunties, all of whom you adore, but it’s still unsettling to not be in your own home with your family around you. And to wonder if your sister will be ok and when she is coming home.

I feel such heavy guilt at times when I think about you and how your life has changed because of CF. You went from the world revolving around you as our firstborn, to having to fight for a look-in! Know that you are still my world and that, in truth, I admire you more than you will ever know. You sit at the kitchen table and talk with me about O2 sats and meds with such maturity and understanding. You tell your sister you can’t hear her blows during physio if I’m struggling to get her to do her Acapella properly. And she ALWAYS does the next one better because she wants you to be happy with her. You suggest games like Mr. Wolf to get her moving because you know it’s good for her lungs. You are such a crucial part of this family’s fight against CF; perhaps the most crucial.

You don’t do these things because you have to. You do them because that’s who you are – a deeply caring person who always thinks about other people and how they might be feeling. That is a magnificent thing to say about a 7-year-old! Yes, there are days you’ve had enough and tell me ‘I wish no one in this family had CF!’ And believe me, so do I. Please let it out when you’re frustrated. It’s so important. I promise you that our house will always be open and honest and I want you to know that you can always tell me how you’re feeling, even when the feelings aren’t good ones.

We are all so lucky to have you and I look forward to seeing you grow up into the wonderful human being that you so naturally are. We always say that your sister is a Superhero for being so brave with her illness. But she’s not the only Superhero in the family. Sibling Superheroes are real too. And you are the most super of them all.

Love you lots and lots like jelly tots,
Mam xxx

Illustration courtesy of the talented Olivia Golden

 

 

 

 

Can living with Cystic Fibrosis ever be ‘normal’?

When we were told our baby girl had Cystic Fibrosis four years ago, I distinctly remember the reassurances offered by the Nurse Specialist on D-Day (Diagnosis Day) – she’ll go to school ‘as normal’, she’ll do sports ‘as normal’, she’ll do everything ‘as normal’. But this was 5 minutes after a discussion about how life expectancy was only around 30 years of age. Huh? What had I missed? How do you go from ‘as normal’ to no longer with us? It wasn’t intentional, but it made it sound as if a switch would be flicked on her 30th birthday. I don’t remember much else about the day other than the blur of tears and disbelief, but this contradiction has always stuck out in my mind.

Of course the Nurse was only trying to offer comfort and and consolation to devastated parents who barely knew what Cystic Fibrosis was, let alone what it meant for their family’s day-to-day life. So this is not a criticism of care or intentions (the nurses are like second family to us now – they are carers, friends and therapists, all rolled into one); instead it’s an examination of what a ‘normal life’ actually means.

See, it’s wonderful to put a positive spin on it and say that despite your child having CF, your family still has a ‘normal life’. I appreciate why people say it and most days, I try to convince myself that it’s true. It certainly makes other people in your life feel better about your situation. But here’s the problem, or eleven, with the argument:

  • It’s not normal for your child to have to take pills to digest her food every time she eats.
  • It’s not normal for a child to have to do 5 nebulisers a day and chest physiotherapy twice a day, just to try and clear her lungs of glue-resembling mucus.
  • It’s not normal for a ‘just a little cold virus’ to put your child in hospital.
  • It’s not normal to understand oxygen saturation numbers when you’re three or four years of age.
  • It’s not normal for a child to do bloods on a regular basis.
  • It’s not normal for your child to look forward to going to the hospital to quiz the nurse on toy names (but it sure is a testament to that particular nurse – you know who you are!)
  • It’s not normal for a child to know what IVs are and to have gone through them several times.
  • It’s not normal to have to check with visitors that they don’t have colds before they come to you or you go to them.
  • It’s not normal to need a steriliser for life rather than for the first year of life (to sterilise neb medicine sets).
  • It’s not normal for a family to know the names of most bacteria, where they’re likely to be found and what antibiotics can/can’t treat them.
  • It’s not normal for a mother to watch her daughter playing with her doll and pram and have their heart break on the inside, wondering if that precious little girl will ever be able to have children of her own.
  • And it’s certainly not normal for parents to constantly worry about what age their child will live to.

Maybe I’m in a bad mood. Or maybe if we’d had less bumps in the road over the last 2 years I’d feel differently. But regardless of how it may appear, I’m not actually trying to be negative. I 100% believe in living a life that’s ‘as normal as possible’. But it’s not your standard definition of normal and never will be.

Rather it becomes your ‘new normal’. You get up an hour earlier to fit in nebs and physio. You find an extra hour in the evening to do the same. You ask friends hard questions before you meet up with them. You pull out of things more often than most, either due to your child being ill, or someone in the place you’re going to being ill. You trick your child into physio at any given opportunity – spotting every chance to run, skip or jump somewhere instead of walking. You cry when your child is suffering from an exacerbation, wishing you could take the hurt for them. You know you’re not a normal parent, although you spend a rather large chunk of your life trying to blend in as one.

You see Cystic Fibrosis is not ‘normal’, no matter how much we’d like to pretend that ‘it’s normal to us’. But ‘normalising the abnormal’ is what I believe CF parenting is all about. Sometimes this feels achievable. Sometimes it feels impossibly tough.

But that’s what we do.
Because the ‘new normal’ is now as normal as it gets.

Illustration courtesy of the talented Olivia Golden, @goldenwonder1

 

 

 

‘It could be worse’

Another year, another sick CF Christmas ‘break’ for my little lady. Thanks Santa for your second-year-in-a-row delivery of Parainfluenza and your ‘surprise’ gift of post-bronch pneumonia for a little extra, unexpected excitement. You arrived at exactly 3.30am on Christmas morning, bang on time for ‘Christmas fever’. If we are, in fact, on your nice list, I’d hate to see what the naughty nellies were given. Next year, please deliver to my house one extremely large DULL MOMENT. It is the only thing my family craves at YuleCrueltide.

For some reason, the cruelty of (any) sickness at Christmas is something that’s uniquely unquantifiable and intensely loathsome. It’s as if the baubles are laughing at your well-rounded stress and the fairy lights are flashing intermittent ‘fuck you’ signs in your miserable face.

As we emerge into the New Year – still coughing like it’s 2016 I might add – I find myself clinging to the phrase ‘It could be worse’ with every last sticky pad of my sanity. Yet it brings me little comfort as my mind appears to be embroiled in a fully-fledged war with demons that are possibly greater than the physical ones we are facing.

But in an attempt to convince my curled-up-in-a-ball-rocking mind that ‘it could be worse’, here are the actual reasons why it genuinely ‘could be worse’.

We went to A&E twice, but we got home again.
The previous two Christmases, we went to A&E and stayed for 2 weeks. This year, we went to A&E twice but came home again. This is a testament to the super strength of Little Miss. Sure, her sleeping sats kept dipping into the 80s. Sure, she’s coughing like someone who smokes 60 a day. But she’s still able to sit up and play ponies and convince the docs that she’s got this shit under control. (I need lessons from her.)

We’ve been dealing with low sats, but have managed to avoid being oxygenated.
Thank you four-hourly Ventolin nebs. This has never been enough for Little Miss in the past, but by the skin of our teeth and the steam of salbutamol, we’ve pulled it off. I may be suffering from PND (Parental Neb Depression – where you do nothing but administer and sterilise nebs for weeks on end, in a state of frenzied worry), but there is a success story in the blur of exhaustion and cough-till-you-puke-athons, should you choose to see it.

We’ve been treating with the wrong antibiotic, but there is a right one.
While the Parainfluenza has to just run its long, marathon course, the chest infection can be fought with antibiotics. Unfortunately we spent 12 days on one that this particular bacteria is unaffected by, but we’re finally on a different one and we’re hoping that we’ll see an improvement soon. The ‘it could be worse here’ is that many bacteria that CF sufferers culture are resistant to antibiotics so we’re lucky that the one we have is just resistant to penicillin. USE ANTIBIOTICS PROPERLY PEOPLE. People with CF’s lives depend on us not abusing them into oblivion. The phrase ‘post-antibiotic era’ is the scariest word combination on this earth to families like ours. Let’s protect the antibiotic sensitivities that are left.

Christmas is over.
So I won’t have to feel sorry for us at such biblical proportions hopefully for another 12 months. I’m not usually one for wallowing in self-pity, but Christmas unearths my depressive tendencies and ignites them with its humbug horrors. So long jingle bell-hells!

The coughing will stop sometime, right?
I can’t explain how every breath-stealing coughing fit causes a new break in a CF parent’s heart, but it does. To see a 4-year-old with lungs that can’t cope with a walk from the car to the hospital door is an injustice that my mind will never be able to reconcile. My little lady has been coughing since September, with a peak of RSV hell at the end of November and Parainfluenza purgatory from the end of December to…(please insert a coming soon date universe). It has to stop eventually. Doesn’t it?

So, in conclusion…
We’ve lost a little weight. We’ve lost a lot of sleep. And we’ve also lost a chunk of mental strength. But we’re here to tell the tale. So I guess it’s true that ‘it could be worse’.

Illustration courtesy of the talented Olivia Golden, @goldenwonder1

Orkambi and Vertex: the horror of hope

Your child is diagnosed with the life-shortening, life-limiting, chronic illness that is Cystic Fibrosis. You’re told that your child’s life expectancy is early 30s, the age you are when you receive this punch-in-the-gut news. The median age of survival in Ireland is only 27, YOUNGER than you are at the time. You want to vomit. But you’re also told that now is the best time for a child with CF to be born as we’re entering an unprecedented age of progress in treatments. And that is what gets you through – you cling to this glimmer of hope with gorilla glue fingers; it becomes everything to you.

I remember sitting on the couch on the evening of Eva’s Diagnosis Day, my heart on the floor; feeling empty, hopeless and so very lost. The Six One News was on in the background and a piece on a breakthrough CF drug from Vertex Pharmaceuticals came on. The drug was called ‘Kalydeco’. But the NCPE had advised against funding it. So had the HSE. And the CF Community was fighting for access. It was the first drug to treat the underlying cause of the condition for people with the G551D gene, the reporter said.

I decided the timing was a sign. A sign that my child would defy all the odds and stats because she was born in the year of Breakthrough A.D. She didn’t have the genetics that Kalydeco treated, but surely this drug was only the beginning. This ‘sign’ became my lifeline. I was convinced that she was diagnosed on the day this was all over the news for good reason. This was my reassurance and this was to be (and still is) my drive every single day of her life. A miracle was within reach – I could feel it, I could smell it, I could imagine it. I wouldn’t have to bury my child a quarter way through a lifetime – she would bury me as children are supposed to bury their parents. My husband would walk her down the aisle. She would have children of her own. CF was not a death sentence. Not any more. This news report was the only reason I could pretend to deal with her diagnosis. It was the only reason I could face the new reality we found ourselves in.

Kalydeco was finally approved when Minister James Reilly bravely overruled the funding recommendation and today, the people who are on it confirm it is utterly life-changing. His decision has improved and extended the lives of those patients and I can’t wait to see how many more years it adds to their lives. It’s the most inspiring medical breakthrough I have ever seen. (Of course I am slightly biased.)

Fast-forward almost four years and the CF Community is again fighting for access to a breakthrough drug, from Vertex once more. This one is called ‘Orkambi’. And a lot of history is repeating itself: once again my daughter doesn’t have the genetics it treats (this one is for ‘double deltas’, the most common genetic combination). Once again the NCPE and HSE have recommended against funding it (the final HSE ruling is due on December 12th I believe). And once again, the CF Community finds itself fighting for the lives of its family and friends.

So many things have changed for me personally though. I’ve lost my naivety and innocence. I’ve now seen the lows of CF first hand through my daughter’s exacerbations. I now know the people in the community who are fighting. I’ve met so many of them. I speak to a lot of them daily. I feel their pain on an extremely personal level. And this time, I’m fighting alongside them.

I feel sick when I see parents having to beg for medical breakthroughs for their children. I’m horrified at the idea that people who are on Orkambi from the trials aren’t guaranteed that they can stay on it for life. I’m disgusted at the way the HSE and Vertex have engaged in public mud-slinging of each other’s negotiation tactics, leaving patients drowning and terrified in the middle. Leaks to newspapers. Downplaying of the drug in interviews. Scaremongering that makes patients feel like they have to air every detail of their difficulties in public to make the case for why their lives matter. And of course I’m petrified that if this drug doesn’t get through, that I’ll never see a drug to treat my own precious little lady.

Is the HSE the big bad wolf for not paying for it? Is Vertex the big bad wolf for demanding a huge price tag? Are they both as bad as each other? Surely it’s not impossible to reach a fair, middle ground? We face a world where our knight in shining armour, Vertex, the company that could save our children’s lives, is also painted as greedy and immoral. This conflict is incomprehensible. We love them. We hate them. But boy do we need them. Regardless of how any of us feel or who we ultimately blame for this debacle, it doesn’t change the fact that patients are getting sicker while a drug that could change their lives sits on a shelf somewhere other than in their pharmacy.

My daughter is nearly 4 and is only starting to ask questions about her CF. But how is this circus affecting teens with CF? How is it affecting young adults? Facing the worst of their illness blasted all over the media. Finding their lives discussed in monetary terms of what they are ‘worth’. I can’t begin to estimate the psychological damage that this storm will leave behind. Every single one of us is being damaged by the cruel game we’re caught in the middle of.

I truly feel for the people waiting for this drug. And I truly feel for those who don’t even have a drug to fight for yet, ourselves included. Our groups may have different genetics and be facing different waits for new therapies, but one thing unites us all: we’re all clinging to hope. And it would seem that hope is perhaps the cruellest feeling of them all.

 

Image courtesy of the #YesOrkambi campaign, photographer: Simon Burch. The beautiful little girl featured is not my daughter – but she is one of the little ladies who deserves to try Orkambi.

 

Do you find yourself or lose yourself on a career break?

 

One of the hardest decisions I’ve ever made during my 14 working years is the decision to take a career break. A break that I’m currently almost half way through.

Now I’ve done it for a very specific reason, in a very protected way and thankfully, with a very supportive employer. My little girl with CF has started playschool and I want to be there to support her through the health implications that mixing with other kids for the first time brings. So I’m on a type of leave known as Carer’s Leave, which allows me to take a break while protecting my position in the workplace.

But call the leave what you like, you still have to say these words out loud: ‘I want to take a break.’ That is a scary sentence to verbalise in front of the people that pay your salary. You worry that the second you say it, the working world will write you off as weak, uncommitted and unambitious. Even if they wouldn’t dare say so out loud.

In a time where women still earn less than men, where women still take charge of the bulk of domestic affairs, where women still feel that no matter how much they do it is never enough, it is terrifying to speak up and press that pause button. Because what if that pause button actually ends up rewinding your career?

But do you know what’s even more terrifying? Doing what you’re doing to please other people or because you’re afraid of what others will say, do or think of you as a result. Don’t ever let your pride get in the way of doing what’s right for you and your family. EVER. The bravest thing you can do is what’s right for yourself. And if anyone thinks less of you for that, it’s that person that deserves to be thought less of.

Now you may be reading this as another CF parent or you may just be reading it as a parent who is considering their options. Either way, the question of whether you find yourself or lose yourself on a career break is equally valid.

I’d love to say there was a straightforward answer to this, but of course (like everything else in life), it’s complicated. I would, however, like to offer you my experience on this journey of lost and found…

Things I’ve found:

  • My smile: I had myself under such pressure trying not to let anyone down, that I was letting myself down. By being honest and admitting I needed a time out, I found that my mouth could actually curve in a different direction. Who knew!
  • My yoga mat: Time to attend a class! This one hour for me is psychologically transformative. My body may be an inflexible mess but my mental health feels quite bendy.
  • Time for friends: I can’t quite believe how busy it still is when not holding down the day job, but I love that I have a little more time and energy to meet up with friends.
  • Time to write: Sure, I write for a living. But when you do it for a living, it can actually be incredibly hard to also do it for personal reasons. I have missed writing for myself more than I could ever express.
  • Domestic peace: Truthfully, I was worried about how I would cope spending so much time at home. I worried I would be less patient with the kids, rather than more so. But we’ve found our groove and while I’m far from a perfect parent, we’re all perfectly happy living in each other’s pockets. (We’ve even been known to find sunshine in them.)

Things I’ve lost:

  • Any tendency to over-react: Because I’m with my daughter every day, I’m better able to monitor and assess her coughing and health status. I also know that I can bring her to the GP or hospital at any time without a domino effect on work commitments. This allows me to be a lot more level-headed in my reading of her when I feel she’s not 100%.
  • A few wrinkles: Managing Cystic Fibrosis is a full time, grey-hair inducing job, no matter how much or little else is going on. But temporarily doing it without as much multi-tasking has smoothed out some forehead wrinkles (marginally, but still). I’m hoping the laughter lines will have caught up with the worry lines before my leave is up.
  • A little bit of myself: So with all the positives I’ve been experiencing, there are of course some negatives. I miss the feeling of accomplishment when we crack a business problem with a cracking idea. I miss the satisfaction that comes from a happy client reaction after you’ve presented a new campaign that nails it. I miss the camaraderie of the gang in the office (I might even miss the arguments a little! But I’ve always been a bit weird).
  • My bank balance!

So while my assessment comes to the woolly conclusion that a career break has left me both lost AND found, there are a few things that are for definite –

I will never regret hitting the pause button.

I will never regret putting my family first.

And after a few months of much-needed healing, I feel stronger than I’ve ever felt before.

Regrets? Je ne regrette rien.

 

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