Tuesday, May 14, 2013

Speaking Up for Those Who Can't Speak for Themselves.


 
Today is a day I've been excited for for weeks
It's the First Annual Apraxia Awareness Day!
 
As I've said before Kolton was diagnosed with Childhood
Apraxia of Speech a few years back.  Basically this means
that he understands perfectly what anyone says to him,
he just can't always make the words come out right for a response.
Like sometimes when you know exactly what you're
trying to say but can't make the words make sense to whoever
you're talking to--now imagine that feeling all day everyday.
It would be pretty frustrating, right?  This is what Kolton and
countless other kids with Apraxia have to deal with
each and every day.
 
Thanks to some excellent Speech Therapists (one in
particular I can't wait to get back to in San Antonio
-shout out to Ms. Hofmockle) Kolton has come so far
in the past three years we've been dealing with
Apraxia.  And as his Mommy, I'm so proud and excited
for each step he takes.  Our journey hasn't been with out
obstacles, of course.  Any mom of a child with a physical
or mental disablility will tell you that us Momma Bears are
our baby's biggest advocates.  I've had to put my foot down
several times and demand what I know is best for him,
be it with our insurance company, or even with his school.
 
What I've found the most heart breaking to me is when other kids
will come ask me at the playground or something, "Why
does he talk like that?", "How do you understand what he's
saying?"  I always just smile and say his brain works a little
differently than yours and he has trouble talking sometimes,
and I understand him because I'm his mommy.
I know most of the time these kids don't mean to offend, and
are really just asking, but that doesn't make it hurt any less.
I hurts because I know how hard he works at talking
while most people just take it for granted. 
 
 CASANA (an Apraxia Awareness group) has a facebook
group for parents with childen with Apraxia and while
looking at it today I found one mom had posted this:
"I heard it explained somewhere how there is like a road between
the brain and the mouth, and the words are like cars. 
However, in kids with apraxia, that road is really windy and twisty,
with lots of deadends, so the cars/words take longer to get to the
mouth and some of them even get lost."
 

I like that, I might start using it myself.
 
A recurring theme amoung us Apraxia Mom's and Dad's
today on this first Apraxia Awareness Day is this:

Kolton is a face of Apraxia,
but it doesn't define him.
Kolton is
handsome
funny
caring
energetic
sweet
loving
silly
I could go on and on, but
"Don't nobody got enough time for that."
(a direct Kolton quote,
channeling his inner
Sweet Brown haha)
Basically what I'm saying is apraxia is one part of
what makes Kolton the boy he is,
 but it's not the only thing.
 
To any of you out there who are just starting this journey,
let me tell you there is light at the end of the tunnel.
I can't tell you how many times I've sat and cried my
eyes out wishing and hoping that one day all this work
he does would make a difference. The first time your baby
(even if he's 4, 6, even 10 years old)
tells you he loves you, will make it all worth it.
 
On this, the first Apraxia Awareness Day,
I will speak up for those who can't speak for themselves.
Will you?



Friday, May 10, 2013

A tribute to a very special military spouse.


My grandmother, with my lovely Aunt Patty and my beautiful Mom.

Every year the Friday before Mother's Day is celebrated (at least 
in military circles) as Military Spouse Appreciation Day.
While I certainly appreciate all Mil Spouses, and think you are all 
ninja rockstars for being both Mom and Dad to your kids when your
service member is deployed, today I'm taking a minute to introduce
you to my Grandmother.

My grandma was a military spouse for most of her life,
made the countless moves that come with military life,
made the sacrifices that we all have to face.
Yesterday, May 9, 2013 she was diagnosed with 
Acute Myeloid Leukemia.

This is the third, yes third different type of cancer she's had.  
It's been a pretty devastating 24 hours for our family
as you can well imagine.  We run the gamut of emotions
from why is this happening again, to how are we going
to do this again, to lets kick this cancer's butt too.

Momo, I want to tell you that I'm so lucky to 
be able to call you my grandmother--we all are.
We know you can pull through this just like you have 
the last two times.  We know you are a fighter.
Just remember when you're feeling bad and
the chemo has you down that you have so much
to live for- Your three daughter's, nine grandkids, 
and all your great grandkids.  We need you, so stay strong.

I love you.