The psychology of ‘at least’

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 fit
s.
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!)

 

 

 

 

 

The strength of a woman

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In my journey as a CF Mother, I’ve come across the strongest women of all.

Women who do everything in their power to protect their children’s health.
Women who call hospital teams their other family.
Women who can often predict a bacteria by the sound of a cough.
Women who lose an unfathomable amount of sleep to worry.
Women who would give anything in this world to trade their own health with their child’s.

Women who are protectors.
Women who are investigators.
Women who are fierce.

Women who are as soft as they are tough.
Women who are never too tired to support others in the same boat.

Women who believe in hope.
Women who believe in the future.
Women who believe in their children.
Women who believe in themselves.

Women who have aching souls but loving hearts.
Women who are sometimes up and sometimes down.
Women who carry the weight of the world, but don’t allow that heaviness to show.

Women who channel their fears into positive action.
Women who won’t take no for an answer.
Women you don’t want to mess with.

Women who are mothers.
And more than that.
Women who are CF Mothers.

Respect, love and gratitude to these wonderful women in my life.
Our connection is true.
And our tribe is strong.

Happy International Women’s Day 2018!
#IWD2018

 

Image from pixabay.com

Every year is a gift

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!
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As mothers, why do we feel like less instead of more?

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.

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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.

 

 

The Day I Quit My Job

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.

Winter Is Coming: Don’t Let The Germs Win!

Back to school is upon us which means that back to bugs isn’t very far away either. For us Mums of little people who are vulnerable to complications from coughs and colds, the school year is dark and full of terrors. But rather than sitting rocking backwards and forwards in fear about the evil bugs my child may encounter, I thought it might be more useful to talk about the little things we can all do to help the health of our children and their classmates.

My youngest child has Cystic Fibrosis, so hands up, this is a partially selfish post as I attempt to protect her and give her the best chance of a hospital-admission-free first year at school. But it’s not just that. Putting my cough-and-sneeze-aphobia to one side, these simple things will help protect every single child in the classroom from unnecessary misery.

Catch it, bin it, kill it
Sneezes are the sneakiest little f***ers on the planet. They spend their days blasting cold and flu particles into the air to be breathed in by the next unsuspecting victim. The best method to put a stop to their wicked ways is to teach your child to catch the sneeze in a tissue, bin the tissue and wash their hands. I hear you, I hear you, if your child is young and busy and has the attention span of a gnat, this is a great theory but a difficult practice. In which case, the next best thing is to…

Give them the elbow
If a tissue is not an option, encourage your child to cover their coughs and sneezes so that they catch the germs rather than disperse them into the air. Best not to catch them in the hands though as hands will spread the germs around through touch – instead, teach your child to cough into their elbow. Elbows will make little or no contact with surfaces and therefore are a good alternative-to-tissue target.

If it’s green, get it seen
Green doesn’t necessarily mean a bacterial infection; the colour can come from neutrophils that your body has sent to fight a viral cold infection, for example. But it does mean that something is up, so encourage good hygiene and if the green doesn’t resolve after a few days and is accompanied by a temperature or general poor form/loss of appetite, consider a trip to the GP to see if the infection is progressing.

Clean hands save lives
If you think of all the things your hands touch in a day, it’s not hard to imagine the invisible germ load that they carry. Of course healthy people don’t feel the need to be as obsessive about hand hygiene as those who are vulnerable, BUT it’s not always obvious when someone around you is vulnerable. Good hand hygiene helps protect those with underlying illnesses, but it will also help protect healthy children from picking up every single thing doing the rounds. No matter what your health status is, proper hand hygiene before eating and after the toilet is a real sickness saver.

Don’t pull reverse sickies
Your child is sick but they really really don’t want to miss school. You’re busy at work and keeping them home would cause a whole load of hassle and stress. I get that it’s difficult, but reverse sickies are not the solution. If your child is feeling miserable, sharing is not caring! Give them a chance to fight off their illness – keep them at home, they’ll get rid of it faster and they won’t ‘gift’ it to others. Things can be passed on before symptoms develop and nobody can help that, but when symptoms are present, consider if your child should be absent.

Take antibiotics as prescribed
If your child (or you, or anyone else in the family) doesn’t need an antibiotic, don’t give one. And if they do, finish the course as instructed. Antibiotic resistant superbugs are the white walkers of our world – let’s not encourage their rise to power.

Lead by example
If your children see you practising good hygiene, they will naturally do the same thing. If you make it the norm, it becomes second nature. You’ll be protecting the health of your family. And without realising it, you’ll also be protecting the health of families like mine.

I have no dragons or swords or wildfire to make anyone pay attention to my words, but in this battle for life, I’d be thrilled if we were all on the same side.

Here’s hoping this Winter is not a long one!

Thanks for reading,
Bernie x

Image from pixabay

Why can’t summer last forever?

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.

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Clean teeth – check! Clear chest – check!

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