We wished so dearly
to have two children
close in age.
We dreamt of the joy
they would have in each other.
We wished for two boys
and our wish came true.
First there was Big brother -
two years later – Little brother.
Life doesn’t always go as one plan.
Little brother will never run -
romping around with his big brother
as we had seen in our dreams.
Still – on good days -
when life smiles at Little brother,
then he can sit in his chair.
Big brother comes -
”Wanna play?”
He puts toys in the hands
of his little brother -
toys that are just as easily retracted.
A balloon – dancing on a string.
Big brother pushes it -
Little brother is watching.
Big brother is kissing.
Pats his Little brother on the cheek -
patting him – just a little bit too hard,
just like big brothers do.
On good days it looks as if
Little brother is right here amongst us -
in the world outside his own head.
Then it looks as if he’s enjoying himself!
Big brother loves his little brother
above everything in this world.
I’m certain that Little brother
loves his big brother the same way.
Who’s saying
that they can’t have joy in each other -
just because Little brother is like he is
and not exactly as we ordered him?
(From my blog Inagh og gutta 2007)
Tuesday, April 27, 2010
Monday, April 26, 2010
Early Morning
It’s a quarter to six in the morning – the alarm clock sets off - my husband is off to work.
6 am – hubby is out of the door – lays home life behind.
I turn in bed – wish for some more sleep…
6.05… “Mummy, I’m awake!”
Big brother – the 3 year old – is very much awake -
refuses to accept that it is still sleeping time.
Comes creeping into the Mummybed -
a lovely warm boy’s body – a lovely boy’s hug.
“Mummy – wakie, wakie! Mummy – get up now!”
Mummy gets up.
Mummy goes to the bathroom with big brother -
has just enough time to pull off the pyjama...
6.30 am – Little brother is crying from the room next door.
and crying…
and crying…
Little brother – soon to be 14 montsh old can cry for hours –
nothing can comfort him – he cries and cries.
He’ll just have to lay there in bed, crying till I’m done getting big brother clad.
“Mymmy… Little brother’s crying!”
“Yes… Little brother’s crying…”
Big brother is done – Little brother is picked up for his morning routine.
while crying…
Little brother is ready – all changed and in clothes.
still crying…
Big brother has his breakfast.
Little brother gets a spoonful of porridge -
when he manages to draw breath between the cries.
He needs to get his medicines down –
a lot of medicine – which needs to be taken as punctual as possible.
Each morning – every day.
Dressing Little brother for going out – while he cries.
Putting Little brother in his pram – while he cries.
Never mind the neighbors – they’ll just have to take the crying...
Getting Big brother dressed -
whom after days and weeks of cries from Little brother
is quite used to turning a deaf ear.
He is happily playing between the different pieces of clothes
that is put on to protect him from the winter cold.
Walking ut to the garage -
to a warm car, thanks to the fan, which the hubby started
so generously as he left earlier this morning.
Reversing the car out of the garage.
Putting a crying Little brother in his seat.
Big brother is already seated -
with this mornings kindergarten breakfast box neatly placed
in his two little hands – carefully minding the box.
First stop – Big brother’s kindergarten -
Little brother calmed down during the short ride.
A nice and quick goodbye -
breakfast box, a cup of milk – and a bye-bye cuddle for Mummy.
Next stop – Little brother’s kindergarten.
It’s dressing up day today – Carnival – Little brother Bunny.
Little brother is having his first epilptic seizure for the day -
wonder why it didn’t come earlier,
regarding how he has cried for the last hour.
Little brother bites himself – bleeding.
Bunny gets a bloody sleeve – a little bit of red in the white bunny fur…
Mummy dries up the blood – soothes – dries the tears.
Little brother is placed safely in the arms of the Kindergarten lady.
Safe, warm arms – Little brother is safe – Mummy is safe.
Two boys in thir kindergartens.
Mammy home – to coffee, newspaper and breakfast.
Tired… aching body… heavy head…
How on earth will it be when I start working again?
Inagh 2006 - from the blog Inagh og gutta
6 am – hubby is out of the door – lays home life behind.
I turn in bed – wish for some more sleep…
6.05… “Mummy, I’m awake!”
Big brother – the 3 year old – is very much awake -
refuses to accept that it is still sleeping time.
Comes creeping into the Mummybed -
a lovely warm boy’s body – a lovely boy’s hug.
“Mummy – wakie, wakie! Mummy – get up now!”
Mummy gets up.
Mummy goes to the bathroom with big brother -
has just enough time to pull off the pyjama...
6.30 am – Little brother is crying from the room next door.
and crying…
and crying…
Little brother – soon to be 14 montsh old can cry for hours –
nothing can comfort him – he cries and cries.
He’ll just have to lay there in bed, crying till I’m done getting big brother clad.
“Mymmy… Little brother’s crying!”
“Yes… Little brother’s crying…”
Big brother is done – Little brother is picked up for his morning routine.
while crying…
Little brother is ready – all changed and in clothes.
still crying…
Big brother has his breakfast.
Little brother gets a spoonful of porridge -
when he manages to draw breath between the cries.
He needs to get his medicines down –
a lot of medicine – which needs to be taken as punctual as possible.
Each morning – every day.
Dressing Little brother for going out – while he cries.
Putting Little brother in his pram – while he cries.
Never mind the neighbors – they’ll just have to take the crying...
Getting Big brother dressed -
whom after days and weeks of cries from Little brother
is quite used to turning a deaf ear.
He is happily playing between the different pieces of clothes
that is put on to protect him from the winter cold.
Walking ut to the garage -
to a warm car, thanks to the fan, which the hubby started
so generously as he left earlier this morning.
Reversing the car out of the garage.
Putting a crying Little brother in his seat.
Big brother is already seated -
with this mornings kindergarten breakfast box neatly placed
in his two little hands – carefully minding the box.
First stop – Big brother’s kindergarten -
Little brother calmed down during the short ride.
A nice and quick goodbye -
breakfast box, a cup of milk – and a bye-bye cuddle for Mummy.
Next stop – Little brother’s kindergarten.
It’s dressing up day today – Carnival – Little brother Bunny.
Little brother is having his first epilptic seizure for the day -
wonder why it didn’t come earlier,
regarding how he has cried for the last hour.
Little brother bites himself – bleeding.
Bunny gets a bloody sleeve – a little bit of red in the white bunny fur…
Mummy dries up the blood – soothes – dries the tears.
Little brother is placed safely in the arms of the Kindergarten lady.
Safe, warm arms – Little brother is safe – Mummy is safe.
Two boys in thir kindergartens.
Mammy home – to coffee, newspaper and breakfast.
Tired… aching body… heavy head…
How on earth will it be when I start working again?
Inagh 2006 - from the blog Inagh og gutta
When you walk through the storm
Little brother is about to do his exercises.
Little brother is soon to be 14 months -
and he is to do his exercises -
exercise moving his legs -
exercise moving his arms -
exercise holding his head up high…
Little brother is soon to be 14 monts,
but Little brother can not hold his head up high.
Red mat -white chlothes.
A whitle little bundle of Little brother
who does not control his body -
who does not control his will…
Red mat - white little body.
Starting easily – soft exercises -
nice and fun exercises.
“Row, row, row your boat…”
Mummy is singing.
Little brother can’t hear me.
Still – Mummy’s singing.
And Mummy rows legs.
”Merrily, merrily, merrily...”
Mummy sings – and rocks.
Back and forth again – back and forth again.
Little brother can’t hear that mummy sings,
but Little brother enjoys exercising his legs.
A soft, little smile – a swift smile.
Little brother doesn’t smile too often, but it happens.
Exercising the arms.
“Little brother is soooo big!"
Arms are lifted above the head.
“Little brother is sooo big!"
Little brother does not enoy exercising his arms.
He makes faces - wrinkles his nose.
“Liverpool -Yea! ManU - Buuu!”
Arms up, and arms down.
“Liverpool - Yea! ManU - Buuu!”
Hey – that was more fun.
a little more happy wrinkles above the nose.
a little bit more sparkling in the eyes.
Now – let’s feel.
Little brother’s body is curled as in a knot.
Hands get to feel feet and toes.
Toes being put in the mouth.
Fingers being put in the mouth.
“These are your fingers, Little brother.
Taste your fingers!”
Little brother doesn’t bother about tasting...
Some massage.
Face, arms, tights, calves.
”Hm... not too bad,” Little brother thinks…
At least this is what Mummy thinks that Little brother is thinking…
The soft, nice and fun exercises are over.
Now the real works start.
The aim – what we one day hope to achieve -
what we one day in the future hope to take for granted…
When you walk through the storm
Hold your head up hig!
Little brother is laying on his back -
Mummy lifts one of his arms above his head.
she takes a good grip at Little brother’s hip -
and one, and two, and three… “Little brother is turing around -
he has to bring his head along as we go.
Phew – this is heavy stuff.
Still – there he is on his belly.
Nose rubbing the red mat.
Drooling. Little brother’s huffing and puffing.
Struggeling, moaning.
After a while he manages to turn his head to one side…
AIR!
Some more huffing and puffing.
Little brother does not enjoy lying on his belly.
Consentrating – real hard...
And then – THERE – Little brother is raising his head!
For 4-5 seconds he holds his head up high – in triumph -
before it bumps back down at the red mat once again.
Little brother is tired…
Mummy is proud…
When you walk through the storm –
Hold your head up high…
Inagh 2006
From the blog Inagh og gutta
Little brother is soon to be 14 months -
and he is to do his exercises -
exercise moving his legs -
exercise moving his arms -
exercise holding his head up high…
Little brother is soon to be 14 monts,
but Little brother can not hold his head up high.
Red mat -white chlothes.
A whitle little bundle of Little brother
who does not control his body -
who does not control his will…
Red mat - white little body.
Starting easily – soft exercises -
nice and fun exercises.
“Row, row, row your boat…”
Mummy is singing.
Little brother can’t hear me.
Still – Mummy’s singing.
And Mummy rows legs.
”Merrily, merrily, merrily...”
Mummy sings – and rocks.
Back and forth again – back and forth again.
Little brother can’t hear that mummy sings,
but Little brother enjoys exercising his legs.
A soft, little smile – a swift smile.
Little brother doesn’t smile too often, but it happens.
Exercising the arms.
“Little brother is soooo big!"
Arms are lifted above the head.
“Little brother is sooo big!"
Little brother does not enoy exercising his arms.
He makes faces - wrinkles his nose.
“Liverpool -Yea! ManU - Buuu!”
Arms up, and arms down.
“Liverpool - Yea! ManU - Buuu!”
Hey – that was more fun.
a little more happy wrinkles above the nose.
a little bit more sparkling in the eyes.
Now – let’s feel.
Little brother’s body is curled as in a knot.
Hands get to feel feet and toes.
Toes being put in the mouth.
Fingers being put in the mouth.
“These are your fingers, Little brother.
Taste your fingers!”
Little brother doesn’t bother about tasting...
Some massage.
Face, arms, tights, calves.
”Hm... not too bad,” Little brother thinks…
At least this is what Mummy thinks that Little brother is thinking…
The soft, nice and fun exercises are over.
Now the real works start.
The aim – what we one day hope to achieve -
what we one day in the future hope to take for granted…
When you walk through the storm
Hold your head up hig!
Little brother is laying on his back -
Mummy lifts one of his arms above his head.
she takes a good grip at Little brother’s hip -
and one, and two, and three… “Little brother is turing around -
he has to bring his head along as we go.
Phew – this is heavy stuff.
Still – there he is on his belly.
Nose rubbing the red mat.
Drooling. Little brother’s huffing and puffing.
Struggeling, moaning.
After a while he manages to turn his head to one side…
AIR!
Some more huffing and puffing.
Little brother does not enjoy lying on his belly.
Consentrating – real hard...
And then – THERE – Little brother is raising his head!
For 4-5 seconds he holds his head up high – in triumph -
before it bumps back down at the red mat once again.
Little brother is tired…
Mummy is proud…
When you walk through the storm –
Hold your head up high…
Inagh 2006
From the blog Inagh og gutta
Sunday, April 25, 2010
Standing at attention
Vegard has no will povered movements. He can not hold his head up for a long time, he can hardly lift his head from the floor when lying on his belly. Still, a young man has to get up and about, and it is good for the bones to be standing upright. Also, Vegard gets a very different view when standing, rather than sitting or lying down. So, in order to get up and standing, Vegard has a "standing shell" fitted.
It vary a lot wether he feels up to standing or not. At the best, he can stand for up to one hour, some days he will start crying after five minutes.
April 2006 - Vegard is being plastered for fitting a "standing shell" -
impressing the orthopedic technician by sleeping through the whole thing
April 2006 - Vegard in his "standing shell" for the very first time
May 2008 - getting ready for being plastered for a new shell
Getting one of the legs done
August 2008 - standing in kindergarten
It vary a lot wether he feels up to standing or not. At the best, he can stand for up to one hour, some days he will start crying after five minutes.
April 2006 - Vegard is being plastered for fitting a "standing shell" -
impressing the orthopedic technician by sleeping through the whole thing
April 2006 - Vegard in his "standing shell" for the very first time
May 2008 - getting ready for being plastered for a new shell
Getting one of the legs done
August 2008 - standing in kindergarten
Hypersensitivity of touch and periods of crying
Ever since Vegard was born, he has had periods of hypersensitivity when it comes to being touched. He would panic if he was naked, and we always had to keep parts of his body covered by a towel during changing of nappies and body wash.
This however has been much better after the fundoplication. Now Vegard loves being cuddeled, kissed and sitting in someone's arms.
We also experience periods where Vegard will cry hysterically. The only thing that used to help when Vegard was a small baby, was to tuck him in his douvet, put him in a cold and dark room and leave him alone. We had many an evening where we took turns - one of us minding the crying baby in a dark room, the other minding the two year old big brother.
Since Vegard now respond much better to touch, he can be comforted by holding him in our arms and cuddle him, speak low and friendly or sing to him. Still there are times when the only thing that will calm him down is to be put in bed.
These periods can last for days and weeks, and he will cry everything from a quarter of an hour up to hours each day. We have never figured out why he is like this.
This however has been much better after the fundoplication. Now Vegard loves being cuddeled, kissed and sitting in someone's arms.
We also experience periods where Vegard will cry hysterically. The only thing that used to help when Vegard was a small baby, was to tuck him in his douvet, put him in a cold and dark room and leave him alone. We had many an evening where we took turns - one of us minding the crying baby in a dark room, the other minding the two year old big brother.
Since Vegard now respond much better to touch, he can be comforted by holding him in our arms and cuddle him, speak low and friendly or sing to him. Still there are times when the only thing that will calm him down is to be put in bed.
These periods can last for days and weeks, and he will cry everything from a quarter of an hour up to hours each day. We have never figured out why he is like this.
Hip Luxation
In the summer of 2009, Vegard suffered from a hip luxation in his right hip. We are currently waiting for the hip to be put back in place at Rikshospitalet. This will most likely happen during autumn 2010.
After having the hip surgery, Vegard will be in a cast from his hip down to his ankles for 6-8 weeks. This will cause some challenges when it comes to logistics around our boy. How will we move him aroung, when he won't fit in his car seat, nor in his pram or wheel chair? Will we be able to keep him at home, or does he have to stay in hospital or in the care home during this period?
We do luckilly have a fine group of helpers round us, and preliminary plans are made already. As soon as we get the date for the surgery, the group will come together to plan everything down to the very least of details.
So - this too shall pass.
After having the hip surgery, Vegard will be in a cast from his hip down to his ankles for 6-8 weeks. This will cause some challenges when it comes to logistics around our boy. How will we move him aroung, when he won't fit in his car seat, nor in his pram or wheel chair? Will we be able to keep him at home, or does he have to stay in hospital or in the care home during this period?
We do luckilly have a fine group of helpers round us, and preliminary plans are made already. As soon as we get the date for the surgery, the group will come together to plan everything down to the very least of details.
So - this too shall pass.
Sight and Hearing
Vegard’s eye sight is normal, but he was counted as functionally blind for a long period, as he didn’t use his sight actively. He still won’t follow persons or toys with his eyes, but he gives eye contact over a longer time now, and he shows with smiles and gests that he recognizes people and places.
Vegard has a hearing impairment. He had hearing aid fitted, but together with the audio specialist at the hospital, we decided that it was just a bother for Vegard to use the aid, as he has enough hearing to cope in everyday life.
Vegard has also been bothered with fluid in his middle ears, so on two occasions had tubes inserted to drain the fluid from his ears.
Vegard does not turn his head as to follow sounds, but he shows that he regocnizes people he knows well when he hears their voice. He will also give a big smile when someone sings or play music to him.
Easter 2010 - Loving friends are visiting - giving Vegard a concert
Oh - please sing and play some more for me!
Vegard has a hearing impairment. He had hearing aid fitted, but together with the audio specialist at the hospital, we decided that it was just a bother for Vegard to use the aid, as he has enough hearing to cope in everyday life.
Vegard has also been bothered with fluid in his middle ears, so on two occasions had tubes inserted to drain the fluid from his ears.
Vegard does not turn his head as to follow sounds, but he shows that he regocnizes people he knows well when he hears their voice. He will also give a big smile when someone sings or play music to him.
Easter 2010 - Loving friends are visiting - giving Vegard a concert
Oh - please sing and play some more for me!
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