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 hip operation

Jennifer’s fifth operation, her longest and undoubtedly her most painful…

She was first due to have the operation around February but woke the morning before with a fever. We stayed overnight at the hospital anyway but the surgeons cancelled it in the morning. No risks.

She was booked in a month later.

For Jennifer she’s none the wiser,  for Odrun and I it meant another month of phsycing ouselves up for something we know is going to hurt us all physically and emotionally!

It’s the hardest of tasks, I envy Jennifer in that sense….

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I took the first night, not much sleep but that’s nothing unusual for us.

Jennifer was in great form the next morning, charming all the nurses on her way to the operating theater..

Enjoy it now I said, it’ll be different when we get back.

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I sat with her in the operation theater,  still none the wiser until an anesthesiologist poked her not once, not twice but three times trying to get her IV in.

Jennifer has never been so angry before, she screamed the theater down until the surgeon, who was across the hall, came in and asked what was wrong.
He knows Jennifer fairly well, and that was a sound he’d never heard her make before….

That’s makes 2 of us…

Eventually they decided to use a mask to put her to sleep, needless to say that went much better.

They usually drag the parents out straight after the child falls alseep, I’ve done this so many times now I was out the door before they even spoke.

I’d love to give Jennifer a kiss and say good luck, capture a picture of my daughter in my head in case the worst ever happened, but I’m not allowed.

I walk out, bottling every emotion running through me like we do far too often….

I don’t talk to anyone nor do I knowledge their standard directions….

I just keep walking….

Walking back to my room this time I wondered how the next month would pan out, how much pain will this cause and how long can we deal with this…

Every operation up to that point had been a struggle afterwards, and this being by far the most painful I certainly had no expectations of a miracle!

4 hours later a nurse approached me and said I could visit Jennifer in recovery.

4 hours is a long time for such a fragile little girl to be under the knife, I cringed with the thought of how she’d wake.

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When I arrived she’d woken fine, much to my surprise but much to my pleasure.

She was recieving an epidural, so now anyone who’s given birth at least can contemplate the pain she was going through.

My shift was over, and Odrun took over for the next 24 hours.

Originally Jennifer was supposed to sleep in recovery that night, the anesthesiologist was a cautious one and that meant wanting Jennifer staying in recovery all night for fear her lungs may collapse….

As soon as his shift was over, Odrun and Jennifer went back to her room…

That’s a fairly good example of the contridiction we experience in a day at the hospital, and that’s why it’s so important to keep seeing the same people everytime. If they don’t exactly operate under the same guidelines, at least they operate with the same attitude.

The first few nights were rough, Jennifer was exhausted but extremely uncomfortable and couldn’t sleep more than ten minutes at a time. We were petrified of moving her and she was extremely touchy.

It took a few days for Jennifer to come around, but only 4 days after the operation we were at home.

The day after we came home, we went down the beach.

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To think that only 7 days after her longest and most painful operation Jennifer was back at kindy is incredible, not quite a miracle, but not far off either….

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Her adaptability in most circumstances in unreal, she’ll accept almost any circumstance now for a certain amount of time.

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The saw that removed the cast was the funniest part for Jennifer!

It was a long 4 weeks for Odrun and I, just changing a nappy took 20 minutes. Making sure her cast didn’t get wet.

Lifting her in the most awkward positions…

Jennifer still has physio to do, and from personal experience that will be hard for her.

If only she knew that it’s for the greater good….

Or maybe she does?

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If every operation went this well I’d be putting my hand up for the next one….

Except they don’t!

But at least now we have reason to believe they can!

The pain and the fear

Like it or not, pain and fear goes hand in hand with cerebral palsy.

Jennifer recovered fairly quickly from her operations, she was checked out on a Thursday and by Sunday was pretty much back to her normal self.

Or so we thought. ….

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For her to have discomfort around her operation sores was a given.

What we didn’t prepare for, was for her to experience the fear like she did when she was younger.

Jennifer’s always been sensitive to sudden loud noises.
When she was smaller it would take us much as a door closing to make her cry with fear.

Things have gotten gradually better, there’s still certain noises that scare her and make her scream, but once she’s understood that noise, or even better if you can prepare her for it, things are much better.

The vacuum cleaner used to be the worst, now she just laughs when we tell her it’s coming and we turn it on.

She feels safe, secure and assured in her dark little world, as long as she has a warning, and she understands that warning.

Jennifer may never be able to tell you or even show you what 2 + 2 equals, doesn’t mean she can’t add up the people sitting around her.

She’s actually quite inquisitive, and that makes her feel safe once she knows she’s in control.

On the contrary, she hasn’t a chance of understanding what happens to her at the hospital.

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So what happens then when everything you’ve worked on teaching her gets suddenly disrupted by surgery?

Needles are shoved in her, she awakes with a pain in her stomach, strange people are touching her, 2 days later she awakes with sore legs, and some thing’s holding them down….

A week after surgery still tender and fragile someone starts stretching her legs exactly where it’s hurting.

“Why are they hurting me?”
“I don’t want to do this!”

“Why is my life surrounded by pain?”

It’s not surprising then, that she fears the unexpected. …..

The vicious circle had begun just a week after her operations.

She’s was on tenterhooks for every single noise that surrounded her……

“Which one will bring more pain?”

“Which noises should I fear?”
“Which noises are safe?”

A week after surgery she’s not at all capable of being in a social environment.
They rang from kindy, this is just not working today they said.

We know from previous experience that Jennifer is fragile when she’s not feeling well or when she’s in pain.

It’s hard to interpret at this very moment, there’s the G tube, the adductors and her hips are being stretched back in place.

I pick her up, she barely smiles, the fear in her eyes is more than apparent.

We drive straight to the hospital.

Fearing an infection due to a slight fever we take all the blood tests we can.

Nothing.

Jennifer had Botox after the adductor tenotomy.

We conclude it’s a side effect of that, a flu-like feeling without symptoms.

Odrun and I spend the weekend building up her self-confidence, whilst trying to keep our patience.

Sunday she comes around, better and a touch more confident.

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Monday she goes to kindy, Tuesday we return to the hospital to remove her stitches, 2 weeks after the initial surgery.

Everything was much better, she’d put on almost half a kilo in 2 and a half weeks, her legs were naturally spread apart when we took her cast off.

She was laughing and smiling, Jennifer was back.

Odrun and I discussed our experience of Jennifer’s last 2 and a bit weeks.
We were exhausted, the crying was the worst, it’s deafening. ….

The kids were home on Wednesday before easter and we went to the beach, albeit a very cold one.
Couldn’t convince Emma otherwise, she was impatient waiting for summer.
At least we know who she takes after….

Easter Thursday it rained, Emma and Odrun baked buns and cake.

Jennifer had slept through her first night since December.
I went in to her around 8am.
I saw she’d tried to roll her self onto her side during the night.
Her cast is supposed to keep her hips symmetrical.
Her right leg was out of whack.

I took off her cast, changed her and put her in her chair.

She screamed in pain, she was literally trying to get out of the chair.

I leant the chair backwards, I couldn’t put her legs in the chair, she kept her legs together.

I passed it off as discomfort in her legs due to the awkward position I found her in that morning.

I put the hose in her PEG, she flinched.
Hasn’t done that before!??

She drank from her bottle and moaned in pain as I gave her breakfast and her medicines.

The fear in her eyes came back, unable to comprehend what in the hell was going on.
Well that makes two of us Jennifer…..

I sat with her on the couch, she seamed comfortable.
When I moved her she screamed in pain.
I lay her on her side.
She smiled.

She fell asleep.

I repeated the process for lunch, this time she almost passed out from the pain.

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We managed to calm her down and then we saw her G-tube was leaking yellow puss.

An infection, in Jennifer’s case a particularly dangerous one as the hose from her Shunt is placed around there.

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The look of severe pain

An infection that could in worst case creep up her shunt tube and into her brain.

7 hours we spent in the emergency department.

Coincidently, meeting the son of the professor who originally diagnosed Jennifer’s AVM.

He looked proud as I chatted to him briefly about his Dad.

As my severely brain damaged daughter Jennifer lay more or less passed out in her pram in the emergency room I wondered if he knew his dad had originally told us nothing was wrong with Jennifer’s brain.

I’ve come to learn, probably much later than everyone else though, that an unintentional mistake is not one worth dwelling on nor blaming anyone for. It serves no purpose to ridicule someone for that!
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She puts up with a hell of a lot this kid.
It’s hard not to be proud!

We took ultrasounds of her stomach, to make sure the tube was lying correctly.

Everything was fine, they had no idea how it became infected.

You could not lay the slightest finger on Jennifer’s stomach, she was in total agony.

We stayed 2 nights whilst she had antibiotics through her IV drip.

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Easter wasn’t ruined completely, as Jennifer recovered fairly quickly.

Something she has a knack of doing, even if it was just an infection.

Such a small body, such a huge heart!

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The pain and the fear affects us all.

There is absolutely nothing worse than seeing your child helpless and in pain, you don’t get used to that.

The fear that something might be terribly wrong, you live with more often than you should.

Breakfast, lunch and dinner for the next 10 days.
Breakfast, lunch and dinner for the next 10 days.

The few extra grey hairs don’t matter, the lack of sleep doesn’t matter, the telephone calls you’ve ignored or the work piling up when you get back…….

Couldn’t care less!!

There’s only one thing that matters!
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The operations

Ever since Jennifer was 6 months old we wondered if she would need a G-tube.

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That time has finally come, or more correctly, that time is overdue.

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Jennifer followed her weight curve right up until she was about 16 months old.

It then flattened out completely.

I think she weighed around 7,5kgs, she was never fat and she was always eating just enough.

When we then, 4 months later discovered she had not been putting on weight we sought advice.

We then proceeded to add everything we could to her already limited diet, canole oil, extra milk in her porridge, extra everything that wasn’t unhealhty.

We tried sandwiches watered down so they were soft enough not to have to chew, we tried weetbix, we tried different fruits and we blended everything else we could in the blender….

Nothing worked, she just didn’t put on weight.
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Jennifer can’t chew, and you can imagine having food put in your mouth that needs to be chewed before swallowing and not being able to chew…..

She panics.

And what she couldn’t chew, but could still swallow she would get wind from.

And what she didn’t get wind from, would make her consitipated.

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It’s not for a lack of trying, it’s just the way it is.

She weighs 8,5 kilos.

She’s never been so thin.

She hasn’t slept through one night since Decemeber, she’s hungry poor thing.

I’ll admit that the thought of a G-tube for feeding her made me feel like we had failed.

But like everything else, it just takes time to adjust to the thought of it.

And now I’m looking forward to it.

It makes life easier for everyone.

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Woke up fairly rough this time...

For all of her smiles and laughs, she’s still very unsure when she’s in a new place.

It’s hard to feed her when we’re out, she just doesn’t feel safe.

It gets better with time, but when you’re already underweight you shouldn’t go a day without hardly eating.

 

Jennifer creates a lot of stress, for herself and for us.

This is just another one we can all cross off the list.

The procedure went well, and they took a gastroscopy while they were at it.

Everything on the inside looks fine anyway.
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In the space of three days she’s had 2 operations and some more botox.

The other operation being the aductor tenotomy.

There is a risk of hip displacement in children with spastic diplegia cerebral palsy.

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Jennifer is already at risk.

Her hip joints are already growing out of alignment, and there is a risk of major hip surgery later in her life.

The procdeure was to cut her adductor muscles on the inside of her legs, and stretch them by using a swash brace.

It obviously wasn’t planned too well, cause the swash brace put pressure on her g-tube.

Instead she’ll wear a cast, one that we can take off for bathing etc.

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She’ll have intensive physio therapy for the next 6 weeks.

It’s not going to be a fun 6 weeks, the extra work it creates, the pain, the crying….

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It’s all worth it just to make her smile.

And she’ll be ready for our trip to Australia in June, her first!

It’s always an experience being at the hospital, there’s always something to learn.

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There’s never a naughty, misbehaving whinging child here…..

There’s only well mannered, thankful happy kids.

There’s alot of love between the sicknesses, there’s alot of respect.

Amongst the never ending obsession of perfection in what we call our society, it makes me wonder if we as parents really appreciate our healthy children?

Jennifer’s taught me many things, but the most important has to be that.

And without sounding arrogant, I hope she’s taught you that too!

The therapy

A day in the life of a child with CP consists of therapy.

In fact everyday consists of therapy.

Food time, not always the best time of day
Food time, not always the best time of day

When we left Stord we had a Special educator 6 hours a week,an assistant at kindy, a physio and an occupational therapist who we saw twice.

Stord council could never dream of giving Jennifer the opportunity she has here.
It wasn’t the personell that worked with Jennifer, rather the size and scope of the offer.

Jennifer has a special educator 50% (18 hours) of the time in kindy, and an assistant the other 50%.

I’m not allowed to mention their names, or show their faces but if you close your eyes and think of angels you’ll get the picture.

Just listening to the water while changing her nappy.
Just listening to the water while changing her nappy.

She has a physio, an occupational therapist, who’s been integral in helping us design the extension to our house and making sure we have the right equipment now and in the future.

Jennifer has a music therapist in kindy too.

Not her favourite, physio therapy consists mostly of keeping her legs and hips flexible.
Not her favourite, physio therapy consists mostly of keeping her legs and hips flexible.

She has an 18 page training and intergration plan designed to stimulate, teach and develop her motor skills, her understanding and her self belief.

Her goals are simple, like helping clothing herself by reaching through her jumper, or rolling onto her side so she can get more comfortable, or just saying yes or no. Simple, but still within reach.

You don’t get to choose these services or these therapists. I don’t think we could’ve chosen better even if we had the chance anyway.

They all have Jennifer’s best interests at the fore.

And never forget, the therapist’s don’t get to choose the child either, they’re given the child. Tiring sometimes, challenging always!

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It’s not all shits and giggles when the child is throwing up, or has diaré or won’t eat or has an epilepsy attack.

But it is rewarding when what you’ve been working on for 6 months finally clicks.

You can see it in their eyes how fond they’ve become of Jennifer, and how fond they’ve become of the children they’ve worked with before.

If it wasn’t for the therapists, our children would not be living at home. That is garaunteed!

Heeeeeeeeeyy
Heeeeeeeeeyy

Before we moved here, we were told we were going to be in for a hell of a fight trying to get the services in place that Jennifer requires.

In reality, it’s gone exactly as it should.

The media in Bergen hound the Council, and so they should sometimes, they do make some strange decisions!

We’ve been Lucky so far, not everyone is.

http://www.bt.no/nyheter/lokalt/Mali-mister-svommetreningen-3044445.html#.UuP3VTjKxaR
http://www.bt.no/nyheter/lokalt/Mali-mister-svommetreningen-3044445.html#.UuP3VTjKxaR

Without warning, there goes a part of Mali’s therapy.

Mali’s parents, like most parents are extremely gratefull for the support they’re getting.

But it’s important to stand up and be heard when something that effects your childs already difficult enough existence, is taken so abruptly away.

One of the most frustrating things about the case above is that we parents really don’t have much more energy to fight cases like that.

We put alot of effort in to getting the therapy our kids need and have the right to.

If you can imagine having a very busy job, where your days pretty much fly by and you don’t really stop for lunch……

Then coming home to the same.

Sure the kids go to bed and you may get an hour or 2 to relax.

But generally we don’t, we write out applications, or discuss the weeks meetings, or discuss and choose equipment, or discuss how we’re going to fix the ever growing list of problems knocking down our door,  or send complaints about decisions given to our children we know just don’t abide by law.

Somehow we get up in the morning, somehow we get out the door and somehow we come home again in one piece.

And if you think we’re ever going to give up, you can just keep going on thinking!!!

"Tactile stimulation" a kind of massage designed to create knowledge of her body
“Tactile stimulation” a kind of massage designed to create knowledge of her body

Having said that, you probably wouldn’t want to live in any other country than Norway if you have a child like Jennifer.

Therapy for disabled children in Norway is heavily subsidised.

It’s just a shame that someone sometimes decides he or she is going to cut funding, or remove assistance, or just go out on a power trip!

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The greatest thing is the therapy is working.

For us, for Jennifer, for every child that needs it.

It might seem miniscule, it might not even be seen. But it’s there!

She’s communicating back to us verbally, it might only be an uh or an ah or an eeeeeee or even a heeeeeey.

But it makes things a hell of a lot easier to understand her needs.

Just knowing that things are moving forward!

Even if it is one step forward and two steps back…….

Respite care part2.

Jennifer left on her first trip to her respite care home last weekend.

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It’s something that’s brings about a mix of emotions.

Jennifer’s never spent 1 night without Odrun or I since she was born.

Not that sending our child away for a night is a problem,  but it suddenly dawned on me why we were doing this…..

This wasn’t forced on us, we had a choice.

Knowing, that deep down, as much as we love her, we just need a break from her.

Knowing that, and feeling like a terrible parent because of it.

Feeling like we’re not tough enough, feeling like we’re lazy.

Feeling guilty for sending away an innocent, naive, defenceless child who is just being herself.

You can ignore those feelings if you want, but experience tells me it’s better to deal with them now than later.

People may not understand the mix of emotions, those people probably have healthy children though.

When Odrun put her in the car, she smiled, she reached out and made a waving gesture which caught everyone’s attention.

When she left I felt the relaxation drain through me.

I’d forgotten what that felt like.

We asked Emma to put her jacket on and get in the car, we’d planned to go ten pin bowling.

Just a few of the essentials
Just a few of the essentials

No baby to feed, no baby to clothe, no baby to strap in the car and no baby’s pram to worry about.

No medicine, no milk and no food, no nappies and no worries…..

It dawned on me just how much work she actually is.

I spent a lot of the night thinking about exactly that.

Respite care doesn’t just benefit Odrun and I, it benefits our whole family.

I couldn’t count how many times we say to Emma
” just a sec sweety, Jennifer needs……..”

Emma needs some alone time with us, and we need some with her too.

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Odrun and I can’t possibly do the same things day in day out without that having a profound effect on our health.

Not only will Jennifer gain some important social skills from being around different people, she’ll come home to a relaxed, rested family.

Who will in turn, have the energy to give her the best they can.

As I went to bed she was the first thing on my mind,  I just hope she’s not scared.

I’m sure I wouldn’t feel like that if she wasn’t blind. …

On the other hand I’m looking forward to knowing that we’re gonna sleep tonight…

And Sunday morning doesn’t involve crying, feeding and medicine. …

When she came home I picked her up in my arms, she growled at me.

She was upset, and she has no problem communicating her feelings.

Maybe she was angry that we sent her away…..

Jennifer's IP camera, sleep surveilance
Jennifer’s IP camera, sleep surveilance

Emma cuddled her, ” I missed you Jennifer, I really did”

We all did, and we’re all gonna have to from time to time.

But maybe that’s a good thing?

Being lucky

For us, being lucky was something we never thought we’d ever come across again…

It’s not only funny, but its strange how time changes your perspective on life.

August 2013,  5 appointments at Haukeland, planning to build a bathroom extension and training room for Jennifer,  an operation in waiting,  new splints being cast, EEG again, new car we need to apply for and probably something else I’ve forgotten. …that just on top everything else normal families do.

Visit from Great Aunty Carol
Visit from Great Aunty Carol

Settled down in our new house, routines in place and the comfort of knowing there’s a hospital within 12 minutes of our house.

Everything in place for Jennifer, physio and occupational therapists, special educators and an assistant at kindy who was our inspiration for choosing that very kindergarten.  They have made us feel more welcome than we could ever have imagined!!

I picked up Jennifer today, and was told that there is so many people who want to work with her. I guess that too is an advantage of living in a city, where the population is accustomed to people being different.

I speak English to Emma, always have, always will. I notice that when I do it here no-one looks, but when I did it in Stord everyone stared, probably trying place me as the husband of the daughter of the bloke who runs the butchers at the old warehouse where his Dad once had bought a stale slice of meat or something country like that…..

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We’re lucky to have a system that is being administered and people who believe they can make that system work.

I never got that toilet cleaning job I’d wished for, so I travel to Stord 3 days a week and work from home 2 days.

I’m lucky. …The company I work for, and have done for 10 years,  is not only supportive, they’ve never once made me feel guilty for taking the day off to take Jennifer to the hospital,  nor have they put pressure on me or my family with regards to Jennifer.  They offered me a home office, and although I had a job offer in Bergen, it was hard to say no to them.

I applied for I think 3 or 4 jobs, I got 1 interview and was offered that job. The offer wasn’t great, a little less money and work every other Saturday.

The money’s not the biggest concern, but working every other weekend and Odrun every 4th is!

But the one thing I remember most about that interview was when I got to ask questions, I’d found out just about everything I needed to know but had 1 question left, my turn to turn the screws a little.

So I asked ” what does an employee mean to this company” …….

Not only was it silent, I never got a straight answer.

I guess being lucky doesn’t just concern Jennifer, and it goes to show that even the best plans don’t always work out 100%, or maybe they do but in disguise.

Odrun wanted to go back to night shift, 7 shifts a month for almost the same money as she had when working 80% day, evening and nights.

She also applied for 3 or 4 jobs and the first interview she had she got it.

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Night shifts gives her more freedom, and with 2-3 appointments on average every week with Jennifer it allows us to do that without the guilt of having to take time off work all the time.

Those negative thoughts that make you think cleaning toilets would make life easier generally comes because of instability.

But recognising those feelings and understanding them takes time.

When times are busy, when Jennifer’s not at her best and Emma is upset because she can’t come to the hospital the only thing you want is to be able to a somewhat normal life.

We get depressed by it, but we’re old enough and experienced enough now to know that it’s just a period.

You never really get to get off that roller coaster though, sometimes it stops to let others on, some even take a few trips with you, but that metal bar is firmly strapped over our legs whilst others hop off to carry on with their normal lives.

The period of Jennifer’s instability is easing, like most things about her, things are starting to stabilize.

Her body is crippled…..but she does the best she can with it.

Her spirit’s not damaged though, far from it. Her personality is gorgeous, it’s growing every day.

Her understanding of her everyday life is as good as complete, her expectations of what’s coming next, understood.

Gone are the days when Jennifer sat stiff and scared, gone are the days when a trip to hospital resulted in a sleepless night, gone are the days of the endless crying for days at a time….

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I love my daughters equally, but to be honest, it’s taken longer to fall in love with Jennifer, because it’s taken a hell of a lot longer to understand her!

I’d like to think that the choices Odrun and I have made for our family has contributed to Jennifer’s blossoming personality, I’d like to think that we’re making a difference….

I’d like to think that everyone can see life through our eyes sometimes, but at the same time I’d like to think that our life is becoming somewhat normal too…..