My Little Miss Salty

Before you roll your eyes thinking this article has been written by some flab-free Bendy Betty or Flexible Fiona, let me set you straight – the only Betty you’re hearing from here is of the Sweaty variety!

Your inspire-to-be yogi I am not. I have a bulging disc in my back (thank you children). A bulging everything in my tummy (thank you children. And lattes. And curries. And comfort eating. You get the picture). And a bulging brain most days of the week (sadly the result of an eternal headache, not hyper-intelligence).

But you see, that actually makes me the PERFECT candidate for yoga. I am a Mum who is slowly going around the twist – and this is a most excellent place to start. I’m trying to work and rear two young children, one of whom happens to have Cystic Fibrosis. So I have all the regular motherhood and adulthood worries, plus some particularly unique and terrifying ones, all played out on the emotional and physical assault course is my daughter’s unpredictable health.

Enter the yoga mat.

The single hardest thing about starting yoga is getting past the fear that you’ll be the only inflexible freak in the room. Chances are you won’t be. But even if you are, it actually doesn’t matter. The beauty of yoga is that everyone is deeply concentrated on themselves – on their own minds, on their own bodies, on their own capabilities and restrictions on any given day. On how they’re feeling inside and out. Your yoga practice is the one time you have permission to stop thinking about everyone else and instead just listen to and connect with your own body.

If there was an Olympics for worrying, I’d win gold every single time. The undefeated champion of the worry world! But when I go to a yoga class, I have to concentrate so damn hard on not falling over, that my brain has no choice but to forget every single other thing that’s going on in my life. So 60 minutes of concentrating on making shapes with my body, means 60 minutes of not fighting demons in my mind. I can’t explain how therapeutic this reset is.

To turn up the heat on this healing, I hit a hot class as often as I can. Deep concentration, deep stretching and deep sweating all wrapped up into one. I’m not sure this is actually what’s happening, but in a hot yoga class I feel like I’m sweating all the negativity out of my body. Not just body toxins, but mind toxins too. Nothing feels better than feeling the sweat pump out of every orifice in your body. I’m not sure why something so vile is so exhilarating, but it truly is. (I also never knew your lower arms could sweat! You learn something weird and wonderful every day.)

So if you’re a stressed out Mum with your knickers in a twist, maybe consider getting your body in a twist instead. After dealing with the family place mats, do a legger with your yoga mat and carve out one hour just for you. Even if it’s just once a week. Connect with the strength of your body and feel the benefits travel to your mind. You’ll find an inner peace you didn’t know you had. And don’t worry, you don’t have to be Flexible Fiona to fit in – Stressed-Out Sallys (and Sams) are regulars in most classes. All you have to be is present and kind to your body and mind.

For me, yoga gives me space to temporarily forget how overwhelmed I feel on our Cystic Fibrosis journey. It helps the stress melt away and it’s truly the only time I think of me and me alone. It’s like my sweaty, protective bubble. My own space, where my anxious thoughts are acknowledged and let go. The effects may be temporary, but there’s always the next class…

Who knows what it might do for you.

Namaste!

 

Images from Pixabay

I appreciate this is not a problem that regular* parents need to fret about, but is it entirely necessary for toy manufacturers to dream up new ways to work holes of doom into their designs?

You see, as a CF parent, toys with holes represent drying problems. Moisture caught in toys represents the risk of said toy carrying pseudomonas aeruginosa or mould. Both of these things bring with them anything but the LOLs. They bring infections and aggressive, long-length treatment that may or may not work for CF lungs. Not so hilarious.

Speaking of LOLs, let’s discuss those blasted LOL dolls. The only thing they bring to my world is complete and utter Loss of Laughter. I see my daughter watch these unpacking videos on YouTube, excitedly waiting to see if the doll is a wee-er or a spitter or whatever other gross-er the company has thought up. Meanwhile I have to tell her that her own personal LOL dolls must remain totally dry (as must Mammy, for fear that if she starts drinking from all the worry, she may never stop).

Thankfully, my daughter is the definition of laid back and fully accepts that she can only dunk her dolls in imaginary water (I am under no illusions about how lucky I am on this one). So, what’s the problem? Well, the problem is that I can’t control the weeing and spitting antics of every other LOL doll in the universe. I can’t stop her from going to friends’ houses or from ever engaging in the real, non-sterile world. I certainly can’t ask every parent I ever meet to keep their dolls dry (I’d be lying if I said I hadn’t thought about it, LOL!). I’m already paranoid about being ‘that mother’. Thankfully I have met nothing but thoughtful and helpful Mams on our journey so far, but there’s a limit to what you can ask of other people.

When other parents think of dangers for their children, I’m pretty sure LOLs, Tiny Tears, water guns, water tables and paddling pools are not high on their shit list. But in true Chucky style, these are the things that come between me and my sleep. I think it’s particularly hard when you have a girl with CF, as toy manufacturers seem to think that girls want all of their toys to excrete on a regular basis. What is that about anyway? Safe to say that the only thing that’s excreting in this house is cortisol from my anxiety-ridden body.

So what’s a worrywart to do? In the absence of being able to control the toy universe – smile outwardly, scream inwardly and do your best, I guess!

 

*I vaguely remember being one of those

 

 

 

I’m a bit of an emotional wreck at the moment. Little Miss is on week four of a cough and it is the most unwelcome house guest ever. It obeys absolutely no rules and is not taking the hint at all. Three times now it has appeared to be leaving – it has gathered its coat, and we’ve gotten it as far as the door, but every single time it’s come back in for ‘one for the road’. I’ve tried to evict it with extra nebs, steroids, an antibiotic, antihistamines, extra exercise – but it is completely tone deaf to the ‘get the f*ck out of my house’ vibes.

So I’m doing what I assume lots of mothers do in this situation – I’m crying randomly (never in front of Little Miss) and attempting to reframe the situation with the psychology of the words ‘at least’.

I think these two little words become the most used sentence-starters on the planet when you are trying to console yourself, or somebody else, about a problem.

At the moment my inner monologue is running a little something like this, making and rebutting points all day and night long:

Me:
At least it’s just a virus.
Also me:
Yes, but viruses act like complete psychopaths in my daughter’s airways and I don’t know what to expect next. Hello ‘the edge’; we shall be living in close quarters for the foreseeable.

Me:
At least nothing showed up on the cough swabs.
Also me:
Yes, but I’m paranoid in case something is lurking low down.

Me:
At least she didn’t get sick until the end of our family holiday.
Also me:
Yes, but I’m sick of being eaten alive from the inside out with worry every time we attempt to go somewhere. She should just be having carefree fun like other kids. IT’S NOT FAIR.

Me:
At least she’s only in infants.
Also me:
Yes, but what happens in later years when missing school means falling behind?

Me:
At least she’s still smiling through the violent coughing fits.
Also me:
Yes, because she’s an absolute rock star who shouldn’t have to put up with such cruelty.

Me:
At least her temperature is gone.
Also me:
Yes, but my worry fever is off the charts!

Me:
At least you can work from home.
Also me:
Yes, because CF made sure it was too hard to keep working full time.

Me:
At least she’s not in hospital.
Also me:
100% YES, but isn’t it cruel when that’s your bar for success?!

Me:
At least her weight and height are good.
Also me:
So true, now stop feeling so sorry for yourself and remember to be grateful for the things that are going right!

Does any of this have a point or am I just letting off steam before my brain and heart explode all over my keyboard? Steam, mostly steam. But there’s a point buried in there somewhere. We all try to be as positive as possible when challenges arise but sometimes the inner turmoil is the biggest challenge of all. The inability to fix things for your child is the hardest thing to have to deal with. It’s excruciating to feel so useless.

‘At least you’re doing everything you can.’
Yes, but sometimes that just doesn’t feel like enough.

Still –
At least it’s summer.
(YES, now somebody please tell Little Miss’s Lungs; they seem to have missed the memo!)

 

 

 

 

 

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.