Dear Jennifer

Dear Jennifer,

It has been a year and half since I`ve shared your story. Not for lack of trying, maybe just for lack of time…?

You do take up much our time like any other child, I guess we just subconsciously switched off.

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Having said that, you haven`t been sicker than the period between June 2016 and June 2017. I can`t remember the actual figure but I`d estimate around 50 appointments or days off from kindy during that period.

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The last 6 months however have been the complete opposite.

We have solved almost all your ailments, there`s just one we can`t get rid of.

The big school girl, prouder we couldn`t have been.

 

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You`ve charmed your way into people hearts, like only you can.

Who couldn`t adore that smile….?

Many have unfortunately during that time, judged you directly on the way you presented yourself in that very moment they saw you.

Sorry sweety, but they always will.

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Unable to conquer their fear of uncertainty or embarrassment, they have missed out on something truly special.

They missed out on you!

A once in a lifetime opportunity to be humbled by something so unique…

6 years ago today we experienced our worst nightmare, our absolute greatest fear….

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You are everything we’d hoped you wouldn’t be.

I never thought I could care for a child like you, I never thought I could learn how to do it.

But you have humbled me by being the exact opposite of that nightmare.

I am forever in your debt.

You never speak a word yet you say so much.

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I think some may never have given you a chance of making it this far.

And to them we say fuck you……

We have never given up on you.

Cause remember the person who gave up?

That`s right, nobody does!

 

 

 

 

 

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The habit

Jennifers, lets just call them habits, have resulted in a kind of “walking on pins and needles” feeling in our house.

It’s kind of like trying not to wake the sleeping baby,  only it happens every minute of every hour of every day.

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It’s like being in a heightened state of awareness or stress constantly.

It’s palpable, and these have become our everyday habits……

 

Don’t drop anything on the floor, don’t hit the fork on the plate, careful putting the glasses away in the cupboard….

Don’t sneeze or cough,  don’t slam the door,  don’t leave the door open,  is it too cold,  is it too hot?

“Why is she complaining now?”

Is it wind,  is it her hip,  does she need to do a poo?

Is she bored, is she happy,  does she just want to turn over?

“Don’t forget the medicine,  what dose are we on now?”

“We’re late, hurry up!”

I’m tired….
Me too…….

“Do we have an appointment this week?”  Fuck me not the dentist again!!”
“Can you go?”
“Argh….. can’t you?”
“I went last time.”

“Alright”

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“Careful with her foot, it’s cramping again.

Careful with that arm,  it’s really stiff today.

” Don’t lay her on her side, I’ve said that 100 times!”

“Don’t close the door so hard, she might wake up.”

Open the handle softly as to never make a noise….

Walk on your tip toes, she might wake up.

“Put the shade down on her pram,  she can’t breathe with that wind in her face.”

Do I have to fix that stupid chair again, why don’t they use lock nuts?

And where the fuck is that new wheelchair,  it’s been 6 bloody months.

When’s the last time she had botox, why won’t they return our calls?

“Has gastro forgotten our appointment?” Again…

“Have you rung the physio?”

“Did you read that email?”

“Have you answered it?”

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Where are her new AFOs,  she’ll need a new pair again by the time she gets these ones….

When are they going to remove that steel plate from her hip? He said maximum a year didn’t he?

“Did you order more meds?”
“No, did you?”

“Have we got enough food for next week in kindy?”
“What do they need?”

“Where are those hoses, didn’t you order them a week ago?”

“Just a minute Emma, I just have to…..”

Please sleep through the night Jennifer, I haven’t slept in days.

Wide awake at 3am, it’s night night time Jennifer, go back to sleep….

Where’s my coffee, shit is it cold again.!

“Did we have any breakfast this morning”
“I think so, can’t remember.”

“Where’s that report from our last rehab visit?”
“Did you file it away?”
“No.”
“Where is it then?”
“Did we even get one?”
“Can’t remember….”

“In a second Emma, I just have to….”

“I’m tired.”
“Me too, I could sleep for a week.”
“Pffft, I could sleep for a month.”

Why is she scratching her ear again? Infection?

“Argh did you remember to cut her fingernails…..?”
“No, did you?”

“Her tooth is bleeding again.”
“Should we just pull it out?”
“You can, not me!”

“Can you take her tonight, I gotta work tommorrow…”
“So do I…..”
“I took her last night….”

“Ok Emma, I’m ready now.”

“Did you remember to change the water in the balloon in her PEG.”
“Oh shit nah haven’t done that…”

“When is that appointment this week?”

“Hurry up woman, we’re late!”

“Jesus Jennifer can you please stop complaining, we’re doing the best we can!!”

“Sleep now!! it’s 4am!”

“How long can we do this? ”
“I have no idea”

“When were you finished with her dinner?”
“Did you remember the extra water?”

“We need more meds, did you order them?”

“Are you coming on Tuesday?”
“To what?”

“Can you hold her a little, I need a break..”

“Can we take a mini holiday?”
“Yeah right, when do we have time for that??”

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“Should we ask the doctors for pain relief?”
“I already have…”

“Should we ask for more respite care.?”
“They don’t have the capacity.”

“Should we ask for help?”
“Haven’t we asked enough?”

“How long can we do this?”
“I told you before, I don’t know.”

“Can I go now?”
“Can you stay a little longer?”

“I’m going to bed….”
zzzzzzzzzz……

“Can I sleep a little longer?”
“No, she’s already awake.”

“If you change her I’ll make breakfast.”
“Ok.”

“Come on Jennifer, just one burp.”

“She threw up again.”
“I’ll get a towel.”
“Can you clean the floor?”

“Can I sit down for 5 minutes?”
“We don’t have time, we’re late again…”

“Can we just cancel that appointment?”
“No, we’re already overdue.”

“Can I sleep now.?”

“Sleep when it’s over!”

“It’s never over!”

“I know……”

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The system

This could be a long one…

The system as we know was originally designed to bring disabled children out of institutions and back into homes with their families, where they belong.

Why take children with the an extreme level of care out of qualified “homes” and bring them back to their families?

There’s 1 very simple reason, one we take for granted everyday of our modern lives;

Fundamental human rights.

We’re lucky to be living in a first world country that exercises these rights.

I’ll be first to admit that the system frustrates the hell out of me, their competance is questionable, and any government body, no matter what they are governing, doesn’t exactly act quickly.

Like most things, it could be worse!

Our old neighbour has a 40 something year old son,  he was starved of oxygen at birth which resulted in severe brain damage. When he was 3,  he was institutionalised.

That’s not that long ago really….

His parents were told “We’ll get him walking, talking, eating and communicating”

None of which came to fruition.

But even he was lucky in a sense, he was probably one the first ones who was not drugged, researched, abused and died early.

The system today, was in all essence born around 1898 when a lady named Emma Hjort opened a home for children who could not go to a normal school.

Emma Hjorts house is now a museum, it ran until 1996
Emma Hjorts house is now a museum, it ran until 1996

In 1903 it was moved to Tokerud farm and expanded to be able to help adults.

In 1915 when Tokerud farm, the only national home for disabled people was struggling, the government took over.

It was again expanded in 1933 and after the war.

Anyone who was able to help out on the farm did
Anyone who was able to help out on the farm did

Sterilisation was introduced in the 30s in Norway when patients were checked out with medical certificates stating “Washed, vacininated and checked out”

During 1940-1945, the death count rose alarmingly , and the cause of death described as medicinal overdose. Conditions however were the underlying cause.

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By 1949 capacity was reached, the only way to recieve help was to pay privately, and the profit went back to Tokerud and Klæbu homes in Norways most elite district, Bærum.

During that time a child psychologist by the name of Ole B. Munch campaigned for a nationalised institution for medicinal and pyschological research.

It’s my understanding that he also created the medical position of “vernepleier” which directly translates to “protection carer” Not sure if this is a Scandinavian role or if it is a globally recognised position.

Anyway, he waited until 1958 until the institutions were realised. These institutions were plagued by a lack of funding, qualified staff and last but not least, a lack will from the government.

Munch let this picture be published in a news paper in 1966, for pure provocation. He wanted exposure, he wanted to be noticed, the intsitution needed money.
Munch let this picture be published in a news paper in 1966, for pure provocation. He wanted exposure, he wanted to be noticed, the intsitution needed money.

The picture above failed, focus fell quickly on “infringements”, or whats’ wrong with that naked woman.

Guess we haven’t changed that much in 50 years have we……?

In 1967 the first foundation was created for developmentally disabled persons. By 1975 a law was passed demanding fully qualified employees, training and hygienic compliances in institutions.

It’s around this time oil was found, the country started reaping the economical benefits.

In 1990 the responsibility for the central institutions were handed to the state council governments through a reform called the HVPU, or health protection for the developmentally challenged.

Norway has 19 states and 428 councils.

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I can tell you from experience, despite being bound by the same law, none of them operate with same jurisdiction.

The HVPU law states amongst many other things that these people shall be included into society, and given a place to live in their home council. Adults who live under these laws are collected in one place, they have mostly fantastic conditions, supervision and freedom. There are of course exceptions.

Whilst younger children such as Jennifer are not subjected to cruel tests, drugging and even worse. Those children like Jennifer which were born into institutions died early, they weren’t cared for, they were subject to horrific ordeals.

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One, possibly many of those children touched someone in way only a disabled child can touch you….

Someone realised along the way that these children have all of the fundamental human qualities, and they express it in their own way.

The system today keeps my child almost pain free, it keeps her healthy and nutritioned.

The system allows Jennifer to live at home by granting us equipment, medical supplies, support functions and free health care.

There’s not a hope in hell that we could afford Jennifer’s ever rising health care costs. Her chairs, her pram, her standing frame and the extension to our home is astronomical.

Her medicines cost about the same as it costs to feed the rest of her family and her syringes, tubes, AFOs are all covered too.

It’s fair to say we’d be on the street if weren’t for the system.

Jennifer’s not just a person who can’t walk or talk, she’s a person suffering from a cronic sickness, while non-progressive, it’s incurable.

We can’t just find another way, we need help.

Her muscles may one day be so stiff that swallowing is just not possible.

If wasn’t for the system we couldn’t have her at home, we’d have sunk long ago and Jennifer most probably wouldn’t be alive….

I know for a fact there’s people, politicians and the like that look only at the numbers.

They’d probably like nothing less than to eradicate the “weak” and cut costs…

After all, isn’t that why we have the abortion laws?

Sometimes I wonder what we complain about, are we just having first world problems again?

But if we lay down or just took it on the chin everytime we got a no, where would we get?

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The system has been built by believers, and it’s growth has been greatly influenced by it’s users. Now 30 or so years after these children were allowed to live at home again, the system is starting to understand. Things take time, and in our world time is of the essence…..

So why, why do all this?

Why create a system that costs the tax payer money?

Or is it cheaper to have the kids at home?

Does money even matter?

In Norway, taxes covers the cost health care, few have private insurance and private clinics are few and far between. If taxes didn’t cover her medical costs, private insurance would.

Some may feel that these children use a lot of tax payers money that will never be reimbursed. But I pay insurance every year that I hardly ever use.

My insurance costs pay for some idiot who burns his house down because he left a candle burning…

That’s just the way it is.

Money means nothing when you’re giving someone extra years of life that they would surely not have had all those years ago.

I’ll be the first to admit the sytems gives me a sense of guilt, Jennifer recieves way more than she, or Odrun and I can ever give back.

That guilt always dissapears when I ask myself the question;

What would you do if it was your child?

The only child

We may have to two children but I sometimes refer to Emma as an only child. Sometimes that gets me in trouble,  sometimes I get ignored and sometimes I get an utter look of disgust….

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Emma selfies

Just because I refer to my child in any such way, doesn’t mean I love or respect them any less.

Jennifer’s level of care grows monthly, and so does the independence of a girl older than her years in birthdays may suggest.

An independence untoward, you’ll read this one day Emma, you’ll know what I mean.

We want nothing more than for you to have a healthy sibling, one you can run and play with, one you can play hide and seek with, one you can grow up with, share clothes and secrets and stories about boys….

I try my best to be your big brother, your friend and your dad…. We try our best to give you what’s missing, but we can’t be your sibling.

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Emma portraits

I know that we’ve succeeded in making your life balanced, you’ve never been happier, more creative, more confident, more outgoing and self assured.

You make friends so easy!

You have a foundation mum and I are proud of and I quote;

“It’s more important to be nice than pretty”

“It doesn’t matter if you don’t get it the first time, you just need to practice and you’ll get it eventually”

The thing about learning is that it’s a process, and the harder it gets the more important the process becomes. You’ve convinced me more than ever that you have the ability to handle tough learning processes…

I hope some of the choices we’ve made have influenced you.

I know it hurts when Jennifer cries, I know it annoys you and I understand why you go to room. I do it too.

You’re not being mean, you’re being tolerant.

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Emmas homework

Of any of the pain, it pains me most to know that you will grow up misunderstood and judged for being the sister of severely disabled sibling.

These are just misunderstandings of those who still don’t understand that they themselves have not the faintest clue of what goes on in our lives! Yet they think they have all the answers…

It used to hurt me to think what has already been said, what has already been thought and which labels have already been placed on you.

You’re victim of circumstances, not so different from your sister….

But you don’t need mum or I to tell you that….

You’ll grow up with values much more important to this world than that of the average person, much more important than any other lesson your Mum and I could ever teach you.

You have patience, understanding and a knowledge of what makes humans work.

I used to worry about you, your childhood and your future, I don’t anymore.

The Australian in you never gives up, never takes a backwards step, the Norwegian in you teaches you equality with freedom of speech.

They’re great traits going forward Emma, never loose sight of them!

And that’s why you never should worry….

You’ll be fine, you always have been!

Emmas smile
Emmas smile

The third year

Where exactly has this year gone?

Feels like yesterday we were getting ready for Jennifer’s operations, or getting ready to take the kids back home to Perth….

If I could sum up this year in one word it’d be progress.
Socially, cognitively, some what motorical, her language and last but not least her weight gain.

Jennifer will end this year on the right side 11kgs. On average she’s putting on about 0.5kg a month.
Which is plenty for a girl who doesn’t have the muscular structure of a healthy child the same age.

Jennifer will never be fat, get used to it.

She now reaches out socially, and if you’re an adult in the same room and you don’t say hello she’ll tell you about it!

She can play the drums, which in itself is awesome!

In 2 weeks Jennifer turns 3, which in itself is quite an achievement when thinking of the baby who looked so awful when she left Great Ormond Street.

I look back on this picture as a reminder, things do get better

 

 

 

 

This year, like every other year has been a rollercoaster.

The lows of seeing your child as sick as you’ve ever seen her before……

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The highs of being able to take our multihandicapped child to the other side of the world without so much as a hiccup.

The delight on the face of your child when she gets the important role of picking the colour on the new car…..

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That feeling of pride when you see your child is making sure that her severely brain damaged sister is geting just the same amount of stickers as she does…

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The frustration of hearing the council say it’ll take 1 year (most probably 2, this is a council after all) before they can even look at your building application, evaluating that, withdrawing the application, drawing up new plans only to hear the architect say they’ve made a big mistake, you’ll still have to send in an exemption application.(https://ryanakajoey.com/2014/05/12/the-extension-part-1/) Losing months on a process that is more frustrating than you think!

Original plans. Yellow line indicates where the house ends today.
Original plans.
Yellow line indicates where the house ends today.
The new plans, who knows when we can begin
The new plans, who knows when we can begin

Arguing over damage to your house, and being as polite and understanding as possible.

Knowing that being polite doesn’t always help, sometimes the only message that people undertsand is one that is handed out with numerous profranitites and waving arms. …

Unfortunately some people in this world are more intent on ensuring that they don’t have problems than they are on helping others with problems.

 

While most will never take a trip to the house of mirrors, our experience has forced us to.

And with every negative experience comes a positive lesson, at least if you choose it to be.

The thing about life is you never know what lies ahead, and sometimes what happens tomorrow can devastate you in a way you never thought possible.

Where is this plane and why can't we find it? Kinda makes it hard to trust anyone these days..
Where is this plane and why can’t we find it?
Kinda makes it hard to trust anyone these days..
MH 17, most have forgotten. Bet the families victims haven't, and they still don't have an answer.
MH 17, most have forgotten. Bet the victims families haven’t, and they still don’t have an answer.

That we still live in a world that uses brutality as measure of power is incomprehensible, we are surely the worst species in the universe.

#408 #63*
#408 #63*

Sometimes tradegy cannot be reasonably explained. A random act that is so unfair for so many reasons….

When it happens we feel empty, yet cluttered with the thoughts of a thousand men at once.

We don’t want to believe that the unthinkable has just happened.

We feel all the emotions at once, and they’re stronger than ever before.
Our brains aren’t used to coping with this sudden rush of emotions, and they can’t, they start to overload.
We loose sense of what’s happening around us until we almost can’t have a simple conversation. …

And then it happens….. we crash….

When we crash we’ve finally understood, this is really happening!

For a long time we’re not ourselves, we struggle to comprehend this new everyday life. Our brain is slowly rebooting, forgetting what used to be important and trying download the “I’m gonna be a better bloke from now on” version…

In a sense we’re all just individual grains of sand on an endless beach, we forget we’re encompassed by many other grains. Everyday we blow by and wash over those other grains like they don’t exist. We’re gathered only by random events, some of them tragic.

Only then do we decide to change, only then do we realise we should’ve been changing all the time!

Life isn’t fair sometimes, but it’s not fair for so many others too.

Some forget, because the pain wears off, the emotion subsides and they end up back on that beach alongside everyone else.

We have a daughter who’s most vital organ a human needs is in absolut chaos…

Yet she gets by, and so do we….

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We get by with the help of the people who never forgot, the ones who never changed back!

 

The trip

If you’d have asked me 3 years ago to travel from one side of the planet to the other with a child that can’t see, that can’t talk, that can’t walk and needs feeding through a tube I would have laughed, told you that that is impossible, and thrown a few choice profanities your way too!

How big is the plane (A 380) Emma?
How big is the plane (A 380) Emma?

How naïve we were, when we travelled to Australia with Emma when she’s was 10 months old, thinking that was hard work, thinking going out to dinner with a baby was a hassle, and something best avoided.

How naïve we were to think that having a healthy child was difficult!!

Travelling with kids is not easy, but I believe that depends on how much travelling you’ve done with them from an early age.

I’ll be the first to admit that this long overdue trip made me nervous….

How will Jennifer go on the plane, the noise, having to sit for so long, will we have problems with the airlines or security because of her medicines, because of her seat we have to take on board??

Will she get sick, will we have to visit a hospital?

We prepared as best we could, half of her suitcase and bits and pieces of the rest of our suitcases were full of her equipment, food, medicines and syringes.

When we left Jennifer was still on antibiotics for the infection she suffered after the G-tube operation.

We left Bergen early on Tuesday morning, landed in Amsterdam and had a 6 hour wait until the flight to Dubai.

This was the first time we’d travelled through Dubai, we usually travel with Singapore airlines through Singapore and on to Perth, but chose Emirates through Dubai with a stopover on the way down and back.

Chillin
Chillin

Since the trouble in the middle east has calmed down, that route has become extremely popular, due to the aforementioned fact and the fact that it cuts about 4 hours off your trip.

4 hours out of 24 hours of travelling is lots, especially with kids.

We stopped in Dubai for 2 nights on the way down, and that proved to be the right decision.

Sure it cost us more money, but I don’t think Jennifer or Emma would have handled the whole trip in one go.

It does take a lot of time out of your holiday, you end up spending 4 days travelling through airports, but it’s a chance to see a new place too!

The flights went better than we could ever have expected, both the girls were angels!

Emirates airlines were fantastic, we were put at the front of every line, from check in to boarding.

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For Jennifer, this was just the start of long period in which I think she just simply enjoyed a change of scene.

For us, escaping the plane trip unscathed was a bonus.

Now we had to get Jennifer into a routine, avoid jetlag ourselves and start our holiday.

We arrived in Perth at 1am, got the girls in bed fairly quickly and they slept til midday the next day.

For the first week, Jennifer was late in bed, Emma wasn’t a problem and they both slept through the night.

It might seem like nothing, but changing the girls body clocks so quick was another major contributor to a memorable trip, especially Jennifer, we just didn’t know how this trip would go for her…..

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They call it winter....
They call it winter….

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We fed Kangaroo’s, went to the beach (in winter), caught up with friends and family, went to a fantastic wedding, enjoyed the fact we could plan a day out in winter.

Probably not too many places in the world you can sit outside in winter and not really feel cold, Perth’s winter are like spring time in Norway, bit chilly in the morning but beautiful during the day!

We avoided everything we feared before we left, no hospital, no sickness, no terrible plane trip!

Just 2 happy kids, and 2 very proud parents!

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A big thanks to my sister who looked after the kids for a few days while we attended a wedding in Darwin!

Not too many people jump out their skins to look after Jennifer, thanks sis!

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There wasn’t too many days where we didn’t have something to do or someone to meet, and that’s how holidays are supposed to be aren’t they?

Full everyday and night, with a bit of r+r in between.

For Odrun and I it was great, haven’t seen the inside of a hospital for almost 2 months!

Definitely had a few days where we felt everyone was looking at us, but also had some of the more positive experiences we’ve had, including a random lady who saw Odrun feeding Jennifer at the shops and decided to tell Odrun how tough she was, saying she could never have done that herself.

For Emma, a chance to meet my family, and who would not have fun feeding Kangaroo’s and patting Koala bears and holding snakes!!

For Jennifer, it was probably a week too long.

Though for a girl so insecure, scared and just so badly damaged she was fantastic.
I’ve never seen her embrace people so quickly, I’ve never seen her so happy for so long.

Having said that, 35 days away from her equipment, her chair, her standing frame and her normal training routine isn’t good for her.

Her body needs regular maintenance otherwise it starts to get painful for her, her wind plays up and her constipation comes back and the crying starts.

I wonder at times if we put her through too much, are we pushing her too far by travelling so far, for so long……?

All the new impressions have to have a positive effect on her, what will she learn by staying cooped up inside a house, in her safe surroundings?

And maybe that’s why we do travel so often and try to live a normal life, even if we do have an overgrown and sick baby with us all the time.

Well at least we can now, while she’s still small enough…..

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Dubai by night
Dubai by night

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Swimming in Dubai
Swimming in Dubai

Call us egotistical, arrogant, whatever, we’ve just about answered every question anyone could ever think of, we won’t stop trying to live a normal life until it becomes physically impossible.

And you know what they say about impossible don’t you?

 

Pic of the trip
Pic of the trip