Thursday, August 18, 2011

Broken

It's been a really long week and a half.  I feel like my entire world has just crumbled in my hands.  My last post was so upbeat and full of excitement and yet just hours after posting it, we have been dashed against the rocks and set adrift.  I don't even know what to write......

Ayla's condition is known as Polymicrogyria and her 'version' of it is called Bilateral Frontal Polymicrogyria.  We have always known that seizures were a part of the symptom picture for around 80 - 90% of people who have this condition.....but she's 6 years old and never had a seizure.  We thought we were home free.  At least we hoped like crazy that she was.  And now all of that hope is gone.   So far she's had nine and despite having to go on Epilepsy medication they don't seem to be letting up yet.  Every damn night I watch my baby girl's brain rack her little body with spasms and turn her beautiful innocent giggle into something that is sinister and dirty somehow.

At the risk of sounding like a spoilt child......It's not fucking fair!  She already has so many struggles ahead of her.  It's not fair that she's forced to face this too.  She looks so frightened.  We're all frightened.  I feel like I'm either going to lose my beautiful happy girl to constant seizures or I'm going to lose her to strong medications that bomb her out and take away her laughter.

I know everyone says I'm strong but I don't want to be strong.  I want to scream and shout and yell and cry and tell the universe that it's not playing fair.  I want to swear and punch something.  I'm so over watching her constantly struggling.  I'm tired and I'm burnt out......and I'm broken.

9 comments:

fiona anderson said...

Broken hearted for you, know you'll find a way through but still broken hearted.

Anonymous said...

I'm so sorry. I know how you feel and I really wish I didn't.

Jacqui

Shannon said...

I wish for ....so many things. I will keep holding you in my thoughts and heart. x

Anonymous said...

I have been lurking for a while but just wanted to tell you how horribly sorry I am and that you are absolutely right, it is so unfair.
Danielle

Susan, Mum to Molly said...

Welcome to a sh!thouse club that noone should have to be a member of...

Hope they find something asap to control them. How frightening for you both...

Any theories on why they would have started so severely, so suddenly??

Hugs, Susan x

Melissa Luxmoore said...

@Susan.... Not sure Susan but in the last month she has had a nasty cold, cold sores, ABR clinic and back to school...maybe exhaustion. I just don't know.

Alejandra said...

It IS unfair.
I hope you can find something to help.
I know this is not a consolation, but, you can live with this, she'll be back to be the same beautiful girl. And you will be happy again despite this

Cheryl Hastie said...

I have been following your blog's and Ayla's story for some time (I grew up in Charters towers and knew Steven from highschool and my hubby knows the Luxmoore family quite well) . I am so sorry to hear of recent events and hope that the anticonvulsant therapy is being kind to little Ayla and that there has been some improvement with her seizures? I also hope, that you have had a good scream, yell and cry - it's ok to feel like it's unfair - it is! And you are only human. I hope this dark cloud has lifted. Sending positive thoughts and well wishes to Ayla, yourself and Steven x

Sherly said...

In our weakness...God is able to be strong in us.
praying for you & your family.
He mends all the broken hearted.