The second year

And so December rolls around, and so does Jennifer’s 2nd birthday soon.

December has a bitter taste, amongst the festivities is the memories, faded but hardly erased.

X-ray confirmed adductor tenotomy required
X-ray confirmed adductor tenotomy required

Someone asked me when Odrun was pregnant with Emma;

Do you want a boy or a girl?

“I just want a healthy baby!!” I always said.

For me, having an unhealthy child was like a bad dream…..having a brain damaged child, fearfull.

The swash brace. Jennifer will have to wear one for 6 weeks after her adductor tenotomy in January
The swash brace. Jennifer will have to wear one for 6 weeks after her adductor tenotomy in January
Falling asleep in the bath
Falling asleep in the bath

Nobody wants an unhealthy child, nobody wants a child that’s different, some of us just don’t get to choose.

I’m sure every single parent of a disabled child has said the same thing at some point in time, “why us?”

Some console in god, some believe it was fate, while others take it on the chin and get on with life.

I don’t believe in god and I don’t believe in fate, but I do believe that everything happens for a reason. 

What happened to Jennifer happened for a reason, and I’m slowly figuring that reason out.

Photos by Ann Kristin Grini annkristingrini.com
Photos by Ann Kristin Grini
annkristingrini.com

Inevitably I’ve opened our family up to critisim by putting my feelings and our lives on the internet in public view.

We think and act differently.
Because we are different.

I hope by now that the regular readers have understood that these children, however strange they may appear on the surface, are just like you and me, that they have feelings, and that they too want only to be loved and included, that they need attention and have a desire to have fun and a desire to be understood.

That it’s motor skills that hold them back, and not necessarily their IQ.

That they deserve a quality of life!

A quality of life that was not guaranteed when Jennifer was born, a quality of life so poor that a doctor more or less recommended she would be best without.

There’s another doctor who said to us when Jennifer was around 5 months old
“Jennifer chose her parents well”

There were times when I wished that Jennifer didn’t choose us…

That same doctor told us
“She’ll be as she’ll be, you can’t do anything to help her”

There’s times you feel like a failure as a parent, despite the hidden meaning behind that sentence.

But there’s times when I wonder how she manages to teach me so much by doing so little.

I’d love to be writing about the miracle girl Jennifer, who despite such severe brain damage is showing only slight symptoms.

Jennifer_1
Maybe a picture really does say a thousand Words……..

This is not a story about any miracle…

This is the other story, the story no-one ever tells you about.

We’re recieving help in bucket loads and Jennifer is receiving every chance she can to be better than her original prognosis’.

It’s up to Jennifer now, despite her limitations, to try to give something back.

Only 6 months in Bergen and she can already roll herself onto her side to reach her toys in her little room.

She can hold her head much better whilst training to sit and she can almost say “hey”

She can drink whilst sitting, which in itself might seem like nothing, but for us it’s huge.

I think that’s proof enough to be able to say that early intervention does help, nothing has a straight course of direction, not everything will be as it will be.

And I’ll never hold it against her if she can’t do anything else, I’m proud of how far she’s already come, cause I know just how much her body is being beaten everyday.

“You can’t spend your time re-digesting past regrets, it makes much more sense to live in the present tense”

Emma&Jennifer_32 years ago it’s fair to say we were in a pretty dark place….

Some of the thoughts running through my head were definitely not healthy!

We could of easily run away from our problems, we could of easily tried to skip the whole process by just going away or chosing the easiest path or blaming others for what’s happened.

But what would we have learnt from that?

And where would we be today if we had?

This process up til now has been a steep learning curve, for everyone, but a learning curve none the less.

In the end you learn that there’s actually nobody that can help you if you don’t want to help yourself.

I’m grateful for this process, despite the scars and how deep they may be…..

And I’m grateful for my little family, they give me more than I could ever have imagined.

I think we’ve found a happy medium for everyone, nothing is perfect, nothing is optimal, and it doesn’t have to be.

Quality of life isn’t about what you don’t have.

It’s about getting the most out of what you do have.

Just ask Jennifer……

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