About Me

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After being told I would never be able to have children, I am now a stay-at-home Mommy to Maddie who happens to have Down Syndrome. I've been married 16 years to my best friend, having the time of my life. Thanks for stopping by and sharing in our little journey through life.

Thursday, April 13, 2017

Hope Rekindled

Yesterday was a bad day.
Maddie and I have been struggling lately with what seems to be some setbacks with her learning.
 Several potty accidents for days in a row, a near meltdown at speech therapy, and facing the reality that maybe...just maybe...she may not have the ability to learn to read.

Amidst the struggle one night I was talking to Kyle about it and frustrated, I said, 
"It's not her fault, but it's like her brain just isn't working right, and I don't have the right key to unlock it."
Maddie was listening and she pipes up and innocently asks, 
"My brain broken?"


Sweet girl.
Tensions eased and we kind of laughed,
"Well, yeah, in a way your brain is a little broken."

I cannot express how frustrating it is to witness so many glimpses for potential to learn, but find a roadblock that you just can't seem to get passed!
This is a brilliant mind in many ways.
She has memorized the movie Trolls.
If you play the song, she will begin acting out every single move to every lyric with amazing precision!
This mind has discovered ways to compensate for her "broken brain."
When visual stimulation gets to be too much, she's resourceful in finding something that covers half the screen on her iPad.
When the auditory stimulation gets to be too much, she's learned to hum or (more devastatingly) grind her teeth to block out the noise! 
This is a very smart brain, it's just a little broken in areas.

Yesterday afternoon I was studying neurodevelopment and neuroplasticity and wondering if hope could be found.  
I decided maybe it was time that I let go of some of my dreams I have been gripping so tightly for Maddie.
I needed to resolve that if she never learns to read, it would be OK.
Re-organizing expectations would certainly alleviate some of the pain of seeing them unmet. 

But then the most amazing thing happened.  
As we were all winding down the day and getting ready for bed, Kyle asked Maddie if she knew what Easter is all about.  
She proceeded to tell him with amazing articulation that it's all about Jesus.
"He died on cross, but He's Alive!"

I don't exactly know what it was about that conversation, but it was exactly what I needed to rekindle hope.
She exhibited comprehension, organized thought patterns, and recollection...all pre-cursers for learning to read.
I was shocked!

We have so much work ahead of us, but the best things in life are always worth fighting for.

In the words of for King and Country, 
"To everyone who's hit their limit
It's not over yet
It's not over yet
And even when you think your finished
It's not over yet
It's not over yet

Keep on fighting 
Out of the dark
Into the light
It's not over
Hope is rising
Never give in 
Never give up
It's not over 

Until the kingdom comes 
Until the race is won
Don't you ever give up
No no never give up
Until the kingdom comes
Run 'til the race is won
Don't you ever give up
We will never give up"

(this just so happened to be my anthem while training for the marathon!)
And now we are running a different marathon of sorts.