KEEP YOUR CHIN UP: The book about Pierre-Robin Sequence

It’s certainly not the book I ever thought if write, but I’m very grateful to have had the opportunity to write it and maybe help some other families out along the way.

And I know it’s not the food and travel adventures I usually write about, but I wanted to give it a tiny space on the blog here, because

a) I wanted the families who need this book to have every chance to find it, and

b) I’m really proud of it 🙂

How it came about is that my son was born with a rare medical condition, Pierre-Robin Sequence, in January 2019. There’s very, very little information available about this condition, and after briefly falling down the Google rabbit-hole trying to find answers, I got frustrated and decided to take matters into my own hands. I spent 14 months researching medical websites and journals, contacting and interviewing other PRS families, and typing up my own journal entries chronicling our time in NICU and beyond. The result is this book…

About the Book

So you’ve been told that your new baby has a medical condition called Pierre-Robin Sequence. OK. I know you’re scared right now, because I’ve been there. Finding helpful information online was almost impossible, which only made it scarier. That’s I why I wrote this book.

Within, you’ll find many of the questions we searched for answers to when our son was first diagnosed – how will this affect his development? What difficulties will we have with feeding? What treatment options are there? How will his time in NICU affect him long term? With research drawn from more than 160 medical sources, over 120 full color photos, experiences contributed by more than 25 PRS families, and my own personal journal entries from birth to NICU and beyond, this is a guide to PRS written for parents, by a parent. 

FEEDBACK FROM PRS FAMILIES
If you just found out your newborn has PRS, read this book! It provides an extensive and thorough understanding of PRS without being overwhelming, while also providing relatable insight into the experiences you may have as a parent of a newborn with PRS while the NICU. This helpful guide is written by a mother who has lived it herself, and wants to help others by providing an easy to read educational tool. I absolutely wish I had something like this book for support and guidance when I was in the NICU with my PRS newborn!
– Shannon, PRS mom, USA

This book is what every parent with Pierre Robin Sequence should be presented with upon diagnosis. The book gives the options parents may be presented with surgeries to help their child, with ideas for families to mention to their providers, with real life results. It is so helpful to see other families’ progress and healing.
– Kelly, PRS mom, USA

This book is exactly what new PRS parents and families need to read. If only this was out when we first found out about PRS! Showing your own journey and providing all details, even the frustrating ones is exactly what is needed.
– Kiera, PRS mom, Canada

Available online at Blurb now!

Signing off, for now…

I’ve been putting off writing this post for a while. I figured now is as good a time as any, seeing as I’m really early for a doctors appointment and have nothing else to do while I wait! This week, there’s also an incredibly important mental health awareness campaign running, that I’ll come back to in a moment…

When I posted this last image to Instagram back in June, there was a lot happening – mostly, I’d found out a few weeks previously that I was pregnant, and that husband and I would be joined by a little apprentice traveller in January 🙂

It was great news and we’re super excited, but unfortunately, even in that early stage, I was already having a pretty rotten pregnancy. I was struck down with hyperemesis gravidarum – for those of you  (read: me) who laughed when it was revealed Kate Middleton was suffering from this illness and made comments like “ohh poor princess can’t handle a bit of morning sickness, whatever,” let me tell you, it’s no joke. 

Imagine the worst hangover you’ve ever had, one of the ones where the idea of even a cheeseburger turns your stomach and a sip of water makes you throw up, when you don’t even have the energy to walk from your bed to the bathroom, when you can’t envision ever brushing your hair again, much less showering and changing your clothes. Picture those few hours of hangover hell; I felt like that almost 24/7 for about 14 weeks.

Turns out it’s not just “a bit of morning sickness.” It’s a completely debilitating illness that leaves you utterly depleted, very isolated and pretty much confined to bed. And in my case, also unable to work. 

The illness, the loss of control over my body and physical health, and the fear of the unknown (I’ve never had a baby before, after all!), combined with the stress of selling our home and buying a new one at the same time, having to move house, and also being bullied relentlessly by the senior management team in my workplace after I announced my “happy” news (if you think Australia is a civilized county where workplace bullying of pregnant women doesn’t happen, you’d be wrong) before finally taking my job away in the first few months of my pregnancy was never going to end well. And it hasn’t.

In the early stages, I had hoped that taking a bit of time away from my writing would give me a chance to get my mental and physical health back on track – it was also really hard to focus on writing anything when I was running back and forth between the couch and the bathroom! I can see now that was wishful thinking. The combination of all those factors breathed new life into my depression and anxiety, and, at least for now, they’ve taken my voice, my strength and my health away. 

I voluntarily took a break from writing because I was so sick; I’ve stopped writing completely for now because I have no voice left with which to write. I guess I’m one of the 1 in 5 women who experience perinatal depression. This week is also PANDA Week – a week to raise awareness about perinatal anxiety & depression, which is why I took it as a sign from the universe that I should finally get around the writing this post, as difficult and uncomfortable as it is.

I’m lucky to have a strong man by my side who hasn’t for a second balked at the difficulty of this situation. I have a sister to confide in who is pregnant for the second time around, and understands much of what I’m going through. I have a wonderful OBGYN who is prioritising my mental health and ensuring I have access to all the help I need. And I have the advantage of having come through the darkness of mental illness before, so I know I’ll get through it again.

And when I do, I hope my voice comes back, too, and I can get back to doing all the things I love – including writing here. In the meantime, the biggest thank you from the bottom of my heart to everyone who’s read along and encouraged me to write here over the last few years – I’ve made some truly wonderful friends and have really enjoyed having a space for me to share what I love – hopefully I’ve been able to encourage a few other people to get out and explore, as well! xoxo

On turning a dream into reality

“People dream. They talk about escaping from it all. Their friends and family diligently listen and politely ignore it when the ruminations fade into oblivion. So quite a few eyebrows went up when I made this trip a reality.”
– Kristine K. Stevens

The objections people will come up with when you tell them you’re following your dream to escape it all are always the same. “What about your job?” “Who’ll pay your mortgage while you’re gone?” “Aren’t you a bit old? Isn’t it time you settled down?” All valid, responsible, grown up points that, ordinarily  I would take pause to consider. But, whether it was divine intervention, a quarter-life crisis, or the warning light of an imminent nervous breakdown, I finally hit my responsible adult threshold a few years ago and started taking my dreams a bit more seriously.

I think it was the sheer number of miserable ‘coulda, shoulda, woulda’ people I saw around me that set it off. It is so easy to talk, so simple to say “if only,” “one day.” And its polite to smile and nod along when people talk about the fantasies you both know they’ll nevet fulfill. It’s the gracious thing to do, to raise a toast over the dinner table as your dear friend, fueled by a little liquid courage, announces their desire to quit their office job, escape the rat race, and finally pursue a career as a musician. We lift our wine glasses with a pitying smile for the poor fool.

But once in a while, a flight of fancy sprouts wings. Someone quietly works away on a dream when no one is paying attention. They’re planning out logistics, squirreling away money, formulating plans and contingency plans, all in the name of escaping it all. Maybe its a temporary escape, maybe its forever. Regardless, it does happen. It happens behind closed doors  with quiet confidence, while others go on belly-aching and complaining that it simply can’t be done.

For months I took great offense to everyone who doubted me when I said we were taking four months off life to travel the world. I got angry when they questioned the state of my career, finances and maturity. What I didn’t understand until we got on the road was that they weren’t actually questioning me at all.

They weren’t really losing sleep at the thought  that my husband and I might struggle to meet our mortgage repayments. They weren’t actually concerned that our jobs wouldn’t still be there for us when we got home. They in fact did not worry that we were being immature and irresponsible by up and leaving. They were suddenly very aware of the fact that they weren’t willing to do what it takes to turn their own dreams into reality. Their raises eyebrows weren’t about me at all.

The Not-So-Glamorous Side Of Travel

Taking 4 months off work to travel the world. Four months of leaving behind the everyday mundane tasks of the real world. 17 weeks of excitement and adventure. 120 days of doing whatever we wanted, with no real obligations or forced commitments. Sounds so glamorous and carefree and magical…

I thought I owed it to everyone who’s ever been jealous of the fabulous life of a traveller to share some harsh and hilarious reality. Anyone who’s stalked an Instagram account and just about been reduced to tears because every shot is SO perfect. Anyone who’s believed that it is all glamorous and wonderful, all the time. Anyone who thinks it was easy and fancy free the whole time.

Don’t misunderstand me; I had the time of my life and wouldn’t trade the months we spent away for anything! This isn’t a woe-is-me, “OMG I like totally freaked out when my hair straightener broke down” post. This is the real shit we dealt with, the parts that didn’t quite make the Instagram cut, the not-so-pretty but completely hilarious, comical, and every bit as memorable stuff.

We like to romanticise travel and imagine ourselves as glamorous Grace Kelly types, effortlessly and gracefully navigating our way through airports and train stations and cities and restaurants while our red lipstick stays in place. It ain’t always like that. Enjoy a good laugh at my expense; this is the other side.

 

 

Over the 4 months we were away, I’ve had to…

– Spread peanut butter onto a bread roll with a pen because you can’t always get a knife in the Canadian Rockies.

– Dry myself after my showers for several days with a hair dryer when a towel wasn’t provided.

– Carry luggage up 80 rickety old stairs on a very narrow staircase to get to our accommodation.

– Lug around 35kg of luggage a kilometre (mostly up hill) to get to a train station in a ‘cute’ old medieval town with footpaths to match. On a stinking hot day. In a floor length skirt. That was the last day I tried to look like a classy lady traveller.

– Boil water for tea in pots on cook tops when we were lucky enough to have a cook top, or microwave it when I was desperate and with no other options. FYI, microwaved water does not make a cup of tea your nanna would approve of.

– Bathe in a shower with only 3 walls and a defective shower curtain a few inches too short. Water. EVERYWHERE.

– Wash not only socks and undies in the sink, but jeans, jumpers and dresses. And then try to find ways to get them to dry in time.

– Wash my hair with only one hand while the other hand held the shower head to rinse with, while trying not to flood the bathroom by accidentally mis-aiming and shooting the water through the shower curtain. If you know how long and thick my hair is, you’ll understand what a completely ridiculous and inelegant undertaking this would be.

– Move from one train carriage to another, mid-ride, with all of our luggage, after some asshole decided to light up and have a smoke in the bathroom, set off the alarm, then lock the door so the conductor couldn’t get in to turn it off.

– Arrive at a hotel lobby absolutely dripping wet after being caught in a downpour on the 1km walk from the train station. Apologies to the hotel we left puddles of water in.

– Move 2 large suitcases, 3 backpacks, 1 sports bag and 2 boxes of groceries all of 10 metres, from car to front door, in the middle of an Icelandic snow storm, complete with snow, rain and gale force winds, without skidding out on the ice covering the driveway and front steps (because it would have been too easy without steps).

– Walk down 5 flights of stairs to get to the shower because the apartment we stayed in was so small it had no room for a bathroom. And then back up 5 flights of stairs afterwards. Oh, and the toilet was in a separate room, too.

– Carry my own tea bags for the times where ordering a cup of boiling water was easier than explaining how to make a cup of tea (America, I’m talking to you).

– Try to locate an Airbnb apartment in a country where I not only can’t speak the language but can’t even read the writing due to the use of a different alphabet, after being given the wrong address and with no internet. Then I got to be the super unglamorous traveller who had to locate a Starbucks outlet to hover around so I could use their free WiFi (thanks for saving our asses, Starbucks – we love you!!!).

– Find an English speaking doctor in a European country to remove an infected ingrown toe nail. And then walk around the city in thongs (flip flops). In winter. While people looked at me like I was a little mentally unstable.

– Sit in the seat behind a small child for a 2 hour flight who had no parental supervision and had just learnt to recline her seat. I spend most of the flight with the seat in front of me basically resting on my thighs. It was great.

– Put on thermal socks, snow boots, 2 jackets, gloves and a beanie over my PJs to walk through ankle deep snow in -12°C Icelandic forest to get to the bathroom.

A souvenir that lasts – 5 tips on getting tattooed while travelling

This is such a touchy subject, and one I’ve actually really been looking forward to writing about. Getting tattooed, while you’re travelling overseas. The irony of this is that “overseas” is different for us all. I live in Melbourne. Maybe you live in London. Or Rome. Or Seattle. Or Vancouver. Does that mean that you, living in Seattle, wouldn’t feel safe getting a tattoo in London, even though hundreds of people are probably seeing tattoo artists there every day??! Of course not, that’s completely ludicrous!

I think that the main issue with this topic is that many people have preconceived notions that:
a) Only irresponsible idiots get tattooed to begin with.
b) If you get tattooed while you’re travelling, it must have been a spur-of-the-moment idea that you probably had while drunk and will really regret it later on.
c) Because it was such a stupid, unplanned decision, you’re probably just going to get it done in some dirty, back-alley garage by a big guy in a torn leather jacket who doesn’t sanitise his needles or even wash his hands between appointments, which he smokes his way through.

While point a) irks me to no end, being the happy owner of we’ll over a dozen tattoos, I’m not writing this as a rant against people’s uninformed assumptions; if you’re not willing to consider the opinions of others and see both sides of a story, I don’t care much about what you think. Instead, I’m writing this for those of you who, like me, are admirers of art, and have maybe seen some work by talented artists across the globe who you might consider visiting on your next trip. Or maybe there’s just a city you really love, and want to take a memory of that city home permanently, and you need to find the right person for the job. Either way, there are a few things to consider….

 

1. Do your research regarding design:
* Don’t just turn up with a vague idea and expect it to be perfected immediately. They’re tattoo artists, not magicians.

* It should go without saying, but if you’re planning to get a tattoo in a language you’re not familiar with, for goodness sake, make sure it means what you think it means, and make sure it’s spelt correctly!!!!

 

2. Do your research regarding tattoo artist:
* If you’ve been following someone’s work for a while, this step is a lot easier. Otherwise, search online for “best tattoo artist in XXX” and read through all the lists that come up – if certain names seem to keep popping up on every list, chances are that’s for a good reason.

* Check that reviews/lists are actually recent and still relevant, not advice from 10 years ago.

* Try asking around on online forums, like Trip Advisor and Yelp.

* If you’re in a country where you don’t speak the native language, be sure you’re going to be able to communicate exactly what you’re wanting.

 

3. On the day:
* Does this place take walk ins or do you need to make an appointment in advance?

* If you need to make an appointment first, is a deposit required? Is it refundable (often it won’t be)?

* Are they a cash only place when it comes to payment, or are you able to pay on card?

* How can you get in touch if your plans change?

 

4. Consider the point in your trip you’ll be getting tattooed:
* Generally, you don’t want to expose your new tattoo to long periods of time submerged in water or exposed to the sun, so if your next few destinations are going to involve swimming and sunning yourself, it’s probably not the best time to do it.

* If you’re a party person, it’s also worth considering how many big nights you’re going to be having, and not getting your tattoo done the day after. Alcohol thins your blood, which means you’re going to bleed a lot more, and that’s not ideal.

 

5. After care:
This will be a bit easier if you’ve been tattooed before – while the general guidelines are pretty similar everywhere, only you know how your body heals and responds to certain ointments. As such, this advice is not to be taken as gospel, but for me, I know that:
a) I need to use Bepanthan cream for 4 – 5 days on my new tattoo, then switch to a gentle, non-scented moisturising cream.
b) my tattoos heal best when they’re kept covered for the first few days, and then left uncovered with a layer of Bepanthan where possible, or covered with plastic wrap over the Bepanthan again if they’re in an area that needs to be covered with clothing.

Knowing this, I packed some plastic wrap, medical paper tape and a tube of Bepanthan – I have sensitive skin, and after so many tattoos, I’m not willing to risk trying anything new at this point when this system has been working well for me for the past 12 years!

 

As you can see, we not dealing with some secret tricks – it’s basic common sense for the most part. If you do decide to get a tattoo in a foreign language made up of some cool characters that you’ve seen on a street sign after leaving a night club after having way too much to drink, and you do stumble into the first tattoo parlour you see with a quick iPhone snap of the street sign, then yes – you are an idiot and no one feels sorry for you and the crappy tattoo you’re going to end up with. For the rest of you who are looking for a lasting piece of artwork as a souvenir from a meaningful time or experience that you can literally carry with you for the rest of your life, I hope this helps! 🙂

 

As for me, I left home wanting to add to my collection, and …

Done by Martin at Sweet Hell Tattoo, Reykjavík, Iceland
Done by Pabby at Downtown Tattoo, New Orleans, USA