Sunday, February 26, 2012

We.Need.Rain




It has nearly been a month since we had rain here. I am starting to go crazy with this heat.
I have a friggin' head cold (again!) which I am not happy about. I only just got rid of the last one.
Ryley is starting to get a bit stuffy too and Braeden is just sound asleep.
The heat is getting to us.
I want rain for my garden.
I promise not to complain about the Ballarat cold ever again (well...probably shouldn't promise that!).

Tomorrow we are off to the RCH for a day of appointments.
First time at the new one which will be weird.
I don't know my way around this one with my eyes closed.
Fingers crossed we can increase the ratio of the Ketogenic Diet or increase meds or something.
Ryley really is just not himself, and I hope it is just because he has grown and stuff needs adjusting.



Thursday, February 23, 2012

I hate busy

That title needs to be said in the voice of Grumpy Smurf by the way.

We are so busy at the moment. I have somehow got a glimpse into what life is going to be like in the years to come. Fitting in stuff after school is just hard work.
I have therefore decided that Braeden will not be allowed to participate in any after school activities ever.
That may be a little harsh.
Perhaps I just need to work on my organisation skills (or something).

Life just keeps plodding along.
Ryley's behaviour at home is getting worse.
So is the frequency of his seizures.
I am tipping there is a link there.
Bring on Monday is all I can say. His neuro is going to have to figure it out for us.

Braeden has decided he is going to play footy (much to his Dad's delight).
He is currently wearing his footy jumper as much as possible.
And yes, I do know it is summer.
He was playing footy with his balloon this morning.
A couple of days ago this balloon was actually his baby brother/sister who went with him everywhere.
Imagination. Yeah this kid has some of that.

Other than that we have a billion corn plants growing and kale coming out of our ears.
Looks like I will be inventing some recipes soon!!



Tuesday, February 21, 2012

What do you do?

When you are out and about and see a person with a disability what do you do?
What is the first thing that pops into your head?
Do you quickly look away, avoid eye contact and walk just that little bit quicker?
Or do you stare at them?
Do you feel sorry for them, or sorry for their carers?
Do you assume that they are stupid?
Do you assume that they can't do anything for themselves?
Do you assume that they are happy to be there?

Perhaps you make eye contact and smile. Even say Hello.
Perhaps you are afraid to say or do something 'wrong'.

Do you even notice people who are different?

I do.
And I smile and nod if they happen to make eye contact.
Just as I would do with anybody that came my way.

What do you do?

Sunday, February 12, 2012

The Dream

I know many of you already know what 'The Dream' is, and over the next couple of weeks, we can finally spill (most of) the beans.

A quick recap for those who have forgotten:
The Dream is basically an idea that has evolved over time as a solution to when Ryley finishes school.
My worry has always been that as soon as he turns 18 years old he will have nothing to do.
Sure, we have 2 options here.
One is a day program type environment.
The other is like a sheltered workshop type environment.
Neither of which I feel will necessarily suit Ryley.
Of course things may change in 8 years time.
But for us, we really felt we needed to create a future for Ryley, instead of just waiting to see what he might be able to do.

I actually have very little faith in the system at the moment too.
I have been discouraged recently at the way I have seen supposed carers treat the people they are caring for
(eg. Not changing someone's nappy for the whole day is just not friggin' on ok?).
I don't want Ryley to be subjected to abuse or neglect within a system that I will be allocated money to pay for.
I refuse to accept that because there are only two options, I have to take them.

So, The Dream has developed and evolved and is now starting to become a reality.

Our plan is to buy a house, a bit of land and slowly turn it into a successful Farmstay Accomodation business. The plan is to make it fully accessible for all abilities (in fact families with children/adults with disabilities will be surprised to see the facilities we will have that will cater for their needs!)
It will be a working farm.
We will produce our own vegetables and fruit and be as self-sufficient as possible.
Ryley will be employed by us, with a paid Carer to help him with his work.

It all sounds a bit utopic doesn't it?
Don't worry, there are plenty of people that don't think we could possibly do this.
Except we can.
And we will.
We sign contracts on Monday for the property that is absolutely perfect for The Dream.

As soon as it is all settled I will take you on a virtual tour.




Wednesday, February 8, 2012

What a day

Ryley scared the hell out of me today and I am only writing this because I just need to get my thoughts out.

This morning he had a 10 minute seizure of some description.
I say some description, because it wasn't a generalised tonic-clonic.
His eyes just moved rapidly from side to side, his breathing slowed and his face started to go blue while his body remained limp.
I have never seen this type of seizure before.

He basically vomited before hand, then vomited afterwards for about an hour.

He isn't sick.
There has been no indication that anything is wrong in his body.

All I can think of is could this be hormones???

So all day I have been scared as hell, watching him like a hawk and hoping like hell he doesn't have another one.
I very nearly called an ambulance and if this happens again I will be.
10 minutes is too long.
I should have called one at 5 mins.

Just when you think things are going along fine hey?
BAM!
They turn to shit again.

In amongst all of this, we made progress towards our dream.
More on that another day when I can think straight.

Anyone have any advice on the seizure thing?? I am wondering how the Ketogenic Diet is going to affect Ryley as puberty sets in. Maybe we should go off it.
But then what if that makes things worse and we lose our healthy Ryley.

Really looking for someone to come walk a day in my shoes please.
And then give me some answers ok?



Sunday, February 5, 2012

Dear Ryley-Celebrating 10 years

Well here we are.
At age 10.
Sometimes it used to seem so far away.
Sometimes it felt like we would never quite get here.
But we are here.

You are tall.
You are smart.
You are as healthy as you can be given all the crap happening in your body and brain.
You amaze me, still.


10 years ago today I became a mother. While I was pregnant with you I couldn't wait to meet you. Like all expectant mothers I told you about all the things we were going to do. All the things you could be. I dreamt about the camping trips we would take, about the sports you would play, about just hanging out with (hopefully a few of them) your brothers and sisters.

But some of that wasn't how it was meant to go.

Instead, you arrived in the most traumatic of fashions. I couldn't even hold you for the first two hours of your life. I couldn't even see you for those first two hours.
I was stuck somewhere else in a hospital room, unable to move and desperate to see you.
To hold you.
To breath you in and never let you go.

That moment I first saw you, I knew you were perfect.
I looked into your eyes and somehow knew life was going to be different.
I felt like I needed to protect you more than anything.

Nothing has changed.
Even 10 years later, I still think you are perfect just the way you are.
Our life is different.
And I am fiercely protective of you. After all, I am your loudest voice.

I can't pretend that the past 10 years have been all about strength and wonderful stuff.
Because some of those days have nearly broken me.
They have nearly broken you.
There has been a lot of awfully hard suffering that we have all had to face.

But we have made it.
Together.
You, me, your Dad and your Brother.
Because we love you so so very much.
And are so incredibly proud of you.

Here's to another 10 years. And another 10 years after that.

Happy 10th Birthday my sweet Ryley.






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