The long road

I’d be lying if I said there wasn’t a time last Christmas where I started to wonder if we’d even get to celebrate Jennifer’s first birthday, let alone another Christmas.

Merry Christmas was definently not a message filling my inbox last year.

But a year’s a long time and we’ve walked a fairly long road this year, albeit a bumpy one.

We’ve learnt that we’re not alone, but we’ve also learnt there’s not too many people who can say that they’ve experienced such a huge change in their lives whilst they’re still so young.

I’m 31, Odrun a year older. We’ve learnt more about life this year than in all the other years we’ve been on this planet.

Emma's christmas dancing concert, one of the few times this year we could sit back and enjoy something else.
Emma’s christmas dancing concert, one of the few times this year we could sit back and enjoy something else.

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Emma's a year younger than most of the girls in her group but she kept up with the routine! Really proud!
Emma’s a year younger than most of the girls in her group but she kept up with the routine! Really proud!

The therapists around us have taught us so much, and helped us endlessly. We wouldn’t be anywhere near where we are without them, and neither would Jennifer.

The government on the other hand is not as easily dealt with, nor do they act as quickly. But we’ve joined NHF ” Norges Handikapforbund “not only in hope of some guidance towards the government and our rights, but to meet parents who are going through the same. They organise weekend and day trips for members and we’re really looking forward to that.

When we went on the sight and sound course, we felt home, like we belonged. We were amongst parents and therapists asking the same questions, having the same problems and all with the same goal….make things better!

Almost everyone reading this knows how tiring it is to have a sick child. Whether they have chicken pox, a cold, a stomach virus or whatever…… it’s exhausting.

But a healthy child gets better, and a parent can eventually breath again.

Only parents with children with one or more disabilities will know what I actually mean, but having a child with CP is like having a sick child 24/7.

You don’t get to breath……

We need to look after ourselves as much as we need to look after Jennifer, there’s no way we can keep up this pace for the next few years……

Interpreting a child who is blind, has little coordination over their body and can’t communicate is one of the hardest things I’ve ever had to learn to do.

Sometimes Jennifer cries, we have no idea what she wants or what is bothering her, and all we can do is comfort her.

On the other hand a child psychologist is an expert, when Laila visits Odrun and I sit with mouths wide open. The way Laila interprets Jennifer is amazing, the way Jennifer engages with her is beautiful, it’s like Jennifer’s been waiting for someone to come and play and Laila knows exactly what game to play.

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It’s kinda like, I wish I knew then what I know now.

And as a parent it can make you feel incompetent, why haven’t we thought of that?!

The simple fact is that there’s too much to think about, not only do we have physical and manipulative exercises we do with Jennifer’s body, we have sensory, auditory, and cognitive stimulation too.

We try to keep to what Jennifer likes, but we have to stretch the boundaries as well, and that’s never popular.

Lovin it!
Lovin it!

I took Jennifer out in her new pram the other day, from behind you can see this is a specially built pram.

No-one smiles when you walk past, they gasp, mouths open, eyes staring down at Jennifer like she’s a freak.

You know within yourself things are getting better when the looks I got from almost everyone I passed didn’t bother me anymore.

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Playing dress ups!

That long and bumpy road we walk everyday and sometimes get lost on has taught us more than I could ever imagine was possible, but it’s given us a child who has Cerebral Palsy, who’s blind and who has epilepsy.

As hard as it’s been, as much as it’s hurts we had a choice this time last year, we could of let our child die.

For us there was never a choice and there certainly isn’t any regrets!!

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2 thoughts on “The long road

  1. Hello Ryan.

    Its great writing which you are sharing and i do enjoy hearing your updates on Jennifers and all of your progress. I am sure putting your thoughts, feelings and emotions down as you are is a great help to you and shows everyone your incredible courage and strength of character.

    Happy birthday to Jennifer!! Its been a huge year for you all and if the pictures are not decieving me she seems to be growing well. The photo “Lovin it” is a pearler. I am sure you made her feel special on her birthday with plenty of affection.

    Thought i would tell you a funny story. Being Bens bday also today we repeated what we did with Estella. Do you remember when we were in Dunsborough sitting around the bfast table with your in laws and you reminded us that it was Estellas bday as we forgot. Yep did it to Ben today. Got halfway to Busselton on a work trip when i rang Mish who also had forgotten. Hopeless. We did have a party for him on the weekend so we are justifying it by saying that was the cause.

    Thanks very much for our christmas card. Its a cracker. Take care. Speak soon .

    Marsh

    Like

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