Tuesday, May 14, 2013

On This Apraxia Awareness Day.....

...I am going to celebrate!

Why, you ask?
Because I refuse to allow apraxia to define me or my children.

We are NOT defined by apraxia!

On the contrary, we define the disorder.

We have been living a life with apraxia either three steps ahead of us or just one teeny tiny step behind us for 9 years.
It's the monkey on our backs.
It's the elephant in the room.
It was the nightmare that made my heart race as I lay in bed at night.
It was the prayers I would say every night (and still do!).
It was the angst in my heart when I watched my child play alone in the park when surrounded by other children.
It was the shock and dismay when I realized that I had two children with the disorder.
It was blaming myself for giving this to them.
It was over-analyzing my pregnancy...what I ate...what I did...the epidural I requested.
It was me wondering if I should have never nursed my babies.
It was me wondering if I should have nursed longer and not bottle fed them.
It was the tears I shed at IEP Meetings over and over and over.
It was the fight I put up with insurance companies.
It was the decision to end relationships with therapists because even they "just couldn't get it".
It was the constant stares in stores.
It was the pathetic looks from strangers.
It was the mastering and translating of a new language.
It was learning sign language.
It was homework at the age of 2.
It was homework at the age of 3.
It was homework at the age of 4.
It was drills and sounds and PECS and Boardmaker.
It was the 1,000's and 10,000's of dollars spent on speech therapy...5 days a week.
It was self-contained classrooms and labels and special education.
It was losing old friends because they couldn't cope with your childs disability.
It was finding out who our real friends were and still are.
It was networking and blogging and Twittering and Facebooking.
It was moving on.
It was our life.

Today, May 14, 2013.....is Apraxia Awareness Day.
I know what it is.
I know it's neurological foundation.
I know the signs and symptoms.
I know that I can write a book about this road I have traveled.
I know how it robbed my children of typical babbling and speech and language production.
I know how it affected them socially.
I know that I don't need a day like today to remind me what apraxia is.

Or was.

Because personally, for me and my family, apraxia is not in charge of our lives like it used to be.
We battled and fought for 9 years.
And now we are one step ahead of the apraxia beast.
It is still the monkey on our backs, but the load is not as heavy anymore.

We don't cry at IEP Meetings anymore.
We don't fight insurance companies as much anymore.
We don't sit in therapy waiting rooms five days a week anymore.
We don't stand for those pathetic looks from strangers anymore.

We still pray.
We still cry.
We still stay awake at night....wondering the "what-if's".
We still have broken hearts, but they are becoming fewer and fewer.
We still educate others.
We still network.
We still do homework.
We still do drills and sounds and PECS and Boardmaker because they make our lives easier and, frankly, we love them.
We still do special education but we also mainstream.
We have newer, better friends.
We have awesome therapists.
We still network and blog and Twitter and Facebook.

And we celebrate!
We celebrate the perfect /t/ sound!
We celebrate general education!
We celebrate handwriting!
We celebrate singing!
We celebrate decisions to not start Kindergarten because everyone else is!
We celebrate BIP plans (privately, of course, because her speech is getting sassy now!)
We celebrate the little milestones because they have FINALLY been reached!
We celebrate daily!
We celebrate the child as a child and not the child with a disability!
We celebrate life!
We celebrate love!
We celebrate our dedicated therapists!

So on this Apraxia Awareness Day.....we CELEBRATE!
Because 9 years ago, the road was so long and so dark.
And today, that road behind us doesn't look so bad anymore.
But we will never forget what apraxia did to our family.

We are stronger.
We are resilient.
We are passionate.
We are fighters.
We are hard workers.
We are dedicated.
We are blessed

We are a tough family....and with family, anything is possible.
And families celebrate!

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Sunday, May 12, 2013

Happy Mothers Day!!

Wishing you a beautiful day!!!