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.
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.
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.
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.
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….
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.
I think some may never have given you a chance of making it this far.
I’m guessing you took a deep breath, and then tried to answer that question.
But instead of putting meaning to the word you stopped breathing for a second, looked sideways whilst your brain scrambled trying to compute the definition.
Or maybe you have a clear cut defintion?
I think we all think we know what normal is, right up until we try to put into words…
What’s become our everyday life, has become our norm, and there’s nothing normal about it.
Our days never seem to end, they pick up right where they left off and they repeat themselves over and over and over again.
Same problem> different defintion> different solution> same outcome….
Nothing is ever completely finished, and if it almost is, it’s replaced by a new task more or less straight away.
Take for example the extention to our house.
We’ve grown so sick of talking about it, what should be an exciting experience is no longer a joy.
There’s been nothing normal about the process what so ever.
If I’ve ever worked hard, it’s been getting this project running.
I’ve never met so many obstacles, hiccups or problems along the way as I have with this project.
Fair to say we chose the wrong architects, but then again I’m certain we could’ve chosen worse!
The amount of mistakes they made, and the following up we’ve had to do because of them, they should of been paying us!
And then the council, who’s taken the best part of 2 years to grant us a building permit, despite the fact that the extention has a medical neccesity behind it.
If it wasn’t for Jennifer, we’d have given up long ago….
Someone once told me “ If it’s important enough you’ll find a way, if it’s not, you’ll find an excuse”
There are times when I wonder if it’s only Odrun and I that understand the seriousness of our situation, and the consequences that can follow if our house isn’t ready before Jennifer grows too large.
Sure she may not be heavy yet, but try placing her 100cm plus long stiff body through the doorways or on a changing table , in a bed or carrying equipment down the stairs into the car….
They’re the most awkward positions we could put our bodies in, and Jennifer’s not exactly comfortable either.
Jennifer’s longevity circles around many factors, one of which is having the correct equipment at the correct time to help prevent her body becoming deformed beyond recognition.
Another is keeping her occupied within her own house.
She’s social, she energetic within reason and she demands attention and stimulation.
We’re not able to provide that in our house until it’s been improved.
We’re not able to care for our child in the manner that she requires, or deserves for that matter, and that in itself is puts an enormous amount of pressure on us everyday…
The builders are ready now, and we were going to begin a few weeks ago.
Right up until the company doing the road and sewage works decided to leave a massive gaping hole right next to our building site…
They then left on holidays, unfinished and with no remourse what so ever..
We’ve managed to get the ground works done, but no-one wants to work next to a 3 meter deep hole.
But this has become our norm, explaining our situation and ultimately having it fall on deaf ears….
Cause who cares right?
Doesn’t matter if Jennifer has to wait another 6 months for her inner walker, her changing table or her new bath…
Doesn’t matter if she becomes a little more crooked in her left hip and requires yet another operation…
We fight what seems like a losing battle daily, but we never give up.
How can we?
Nothing’s more important than our children, just like nothing’s more important than your children….
Just that one of ours has a need as far from normal as the definition itself.
Imagine my luck when my wife gives birth to 2 more females, and I’m left all alone in the corner trying to figure out these three specimens….
No wonder I want my own lockable TV room with sound proofing.
Just kidding, it’s not that bad in my house.
I chose the right the one.
Then I was lucky enough to get 2 more.
But I once thought that having kids was never for me, the crying, changing nappies, dealing with tantrums etc etc.
I’d never even changed a nappy before Emma was born.
Odrun on the other hand, the complete opposite. Kind hearted, warm, caring, compassionate and patient.
Born to be a mother, not all woman are…
Today, Odrun and I have been married for 10 years…
Not exactly new to the concept but not exactly professionals either.
Being married, having a mortgage, juggling work and kids…. pfft
Piece of cake!
Add Jennifer to that equation though….
To say that the last 3 and a half years has tested our marriage would be contradictory to the term itself.
People used to ask us just after Jennifer was born how our marriage was coping…
In hindsight the question was never an issue, side by side with the same goal, we’ll get through this together.
No one’s ever asked us since.
And during that time we’ve experienced some fairly turbulent times, none of which I’d like to revisit any time soon.
My wife never gives up on me, no matter how hard it gets, she’s right there supporting me.
We’re complete opposites, but we’re best friends.
Odrun’s the only person who fully understands me.
And that in itself is quite an achievement!
I’m proud to be your husband, and the father of our children.
I love you despite the fact I’ve spent a third of our marriage waiting for you…
You’ve taught me the meaning of partnership.
If I had to choose any one person to walk this journey with I’d choose you…. over and over and over again.
It’s just lucky for me I never had to choose.
We’ve been through more in the last 10 years than the average couple will experience in a lifetime.
And despite everything we’ve done we both know that we will outlive one of our children.
Our toughest time undoubtedly lies ahead of us….
Thankfully that time will be by your side, cause I could never do it without you!
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….
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.
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.
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.
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….
Her adaptability in most circumstances in unreal, she’ll accept almost any circumstance now for a certain amount of time.
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?
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 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.
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.
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.
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.
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.
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.
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?
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;
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….
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.
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.
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!
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.
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……
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…..
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…
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!
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.
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.
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….
We get by with the help of the people who never forgot, the ones who never changed back!
The second post about Jennifers operations, the follow up and the results.
I read a few blogs about cerebral palsy, and often people comment that there is no information of the results.
Well, here they go.
In April, as many remember, Jennifer had 2 operations. A g-tube in her stomach to help her nutritional intake and an adductor tenotomy, to try to correct her hip displacement.
We’ll start with the good news…..
Jennifer’s g-tube has had a major impact on her quality of life. Her mood in general is better than it ever has been, her strength, alertness and willingness to engage with other people has never been better.
She’s not setting any world records for weight gain, but she is gaining weight evenly and the doctors are happy.
We’ve spent most of the time since the surgery trying to find out how many calories Jennifer needs every day, how much food she can tolerate and which foods we can feed her.
Originally her nutritionist had stated that 750kcal a day would be sufficient, but warned that we may need to adjust that depending on her weight gain.
Jennifer’s body is being taken over by spasticity, and spasticity needs energy, energy burns calories.
Jennifer receives about 1100kcal a day right now, and for a child just under 10kg’s she should be a big rubber ball of a kid.
She’s not, and there’s not one nutritionist who expects her to be.
Her strength is in her personality, and not even a doctor could fault that now.
She’s grown out of her old AFOs, her chair needs a bigger seat, her pram is starting to look small and her changing table is in desperate need of enlargement!
So tell me she’s not growing!
The bad news however comes from the fact that the adductor tenotomy didn’t work, at least on her left side.
You can see on the above picture, that her left hip is crooked.
Between the femoral head (the ball) and the acetabulum (the hip bone above the ball) there should be no more than a 20 degree differential.
Jennifer’s is at 36 degrees.
Her adductor is so spastic that it is pulling her joint out of it’s socket.
She needs the femur bone broken, a plate but between her femur and her pelvis and screws to hold it in line.
Major hip surgery….
So young, so painful, so not deserving of this!
I referred to the adductor tenotomy in April as ” preventative maintenance.” Of which I thought in worst case would buy us time.
Time however, does not seem to be our friend.
It was only yesterday that we found out about this, and it was only Odrun and I that managed to postpone the surgery until after Christmas.
Not only can we not stomach the thought of the pain Jennifer will go through, we want to enjoy this period with her more than anything else.
She’s never been easier to deal with, life is finally a joy for her in a way that it never has been before.
She has so little, she deserves everything.
Her hip is not going anywhere in the next 6 months, in fact she could probably go years without needing this surgery.
But when it does start hurting, we’ve been told it’s excruciating.
The choices we make are for our kids, and our ourselves.
Not all of them are easy, some make you literally want to cry.
But she has proven that she can get through almost anything life has thrown at her, and she’s always come out on the right side.
I take solace in knowing that this will help Jennifer, it’s just another upwards climb on this rollercoaster we call life……
In life, there is abundance in everything if we are open to see and receive it. This is my abundant journey raising two "healthy" children and a son with cerebral palsy. This is what my son is here to teach... acceptance and the true importance of life.