Tuesday, November 22, 2011

A Personal Story...

Hello Bloggers,

Yes I have certainly been neglecting my blog and for that I apologise.  We have been extremely busy here at home with school, volunteering, sick babies, ballet, swimming lessons, speech therapy and OT.  And all this while Daddy is away. 

On top of all of this we have been travelling a journey with an unknown outcome... well sort of, let me explain!

A little bit of background for those followers who don't know me personally.  My husband and I have two beautiful little girls, Olivia and Lorelei.  They are identical twins and they share most things including the same cherry birthmarks, the same little skin tags and both having Kenyon's turned in little fingers - yeap they are very identical!  They were once described (by a specialist) as one in the same person, except for that last little bit on DNA!

Well on top of twin identity confusion, our beautiful girls suffer from a rare condition that causes them to have seizures.  It is not the type of seizure that most people recognise but effects their day to day life, cognitive function and in some ways their ability to communicate.  But in saying that, our girls are fighters, they are very social and high functioning considering what they have to deal with everyday. 

This type of epilepsy is uncontrolled by medication, and with each of the girls having in excess of 80 seizures a day, we were looking for something to give the girls a break from their constant companion.  It came in the form of a dietary treatment called 'MAD' (Modified Atkins Diet), most people understand the basis of this diet but when controlling seizures in children.... it is an incredible stressful balancing act.  It is so hard to describe how I feel... filled with hope and doubt all at the same time!

So I wanted to share the musing of one of the mum's on the Modified Atkins Diet for Seizures support group... I held my breath when I read this, as it put all that I feel into the exact words in hear in my head and heart everyday.

Marlene posted this to a Modified Atkins Diet for Seizures (MAD) Support list that has been a Godsend, in response to a Mom who posted Ref. Being Disheartened... My response:

Tea Mails are my "Pour a cup a tea and relax a moment" (aka I'm going to ramble a bit, ya may want a drink while reading LOL!)

The way I see it per se is this, we've lived through what many can't fathom let alone begin to understand.

We've learned more medical terminology and specialties that many Drs don't touch upon during their entire careers.

We've not only thought outside box to find whatever answers, hints, potential clues even... That you wouldn't find us near anything that slightly resembled a box-like shape ;)

With that being said... And on a more serious note...

If anyone were to say they weren't disheartened along the way... Hmmm I'd be up to challenge that... 'Cause how could any of us *not* be... The beast we are fighting is something that truly no one has the answers as it effects each of our children, and adults to the point each are unique with not only what can trigger but what type and/or duration of seizures it may trigger (or not) etc.

We are in essence life long detectives racing to solve this mystery that in many cases robs our children of their very life, the life we dreamed of while expecting them, adjusted a bit once the first gutting blow of a diagnosis hit, and so on and so forth... and we all just don't speak of it. Instead we run a grueling race just as fast and hard as any marathon athlete, because we are keenly aware that the ultimate price that could happen if we stop searching, doing, or solving the puzzle each teeny, tiny piece by piece, is an unspeakable tragedy and the beast has no mercy on whom it chooses to rip from us in a blink of an eye...

So we hold on tight with every fiber of our being, at a cost that will and can never be totaled, and cling to our magnifying glass with all we have in the very core of our beings to solve our loved ones mystery of...

Ultimately we all secretly celebrate each and every seizure free moment, pray for the seizure free days, weeks etc. Truth be told we all secretly sometimes don't speak of even *those* for a fear of "jinx-ing it" or such... Also almost as equally disheartening :(

I have always said, and will always say you must go with your gut... (No pun intended) if you think you need to go pure, change timing, let your loved one sleep in, or any other "feeling" you get that may, (or may not) be the next piece... Its always a piece, just were it fits or when... We haven't quite gotten the full clear picture to cheat from yet...

We're all working on it and some way, somehow we will continue to do so until we get the answers...

We will get disheartened, we will get weary, we will have many days of a multitude of emotional turmoil, but what we won't do is give up.... Not while a breathe is in us to breathe.

Nor will we stop helping and supporting others on the same journey... as in doing so we too are carried.

So I dedicate this post to all those facing this condition, beloved family, friends and strangers. I am up for the fight, one day at a time.

Love, Krischelle

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