Tuesday, January 27, 2015

The Challenging Blessing of Down Syndrome

Some days Down Syndrome is tough.
Is that one of those things taboo to say?
Like you don't like doughnuts with sprinkles.
Or hot chocolate has too many marshmallows.  
Even on days you feel it in your heart, you never utter it aloud.

I have written this post at least half a dozen times in my head, but impressing the words onto the screen has not come easily.

Most days of this journey are incredible.
Each is joy-filled.
All are miracles sopped with His blessings so syrupy I am sticky from its sweetness.
Few are difficult.

The past week has been one of combination days, like my favorite Starbucks concoction. A little of this, with a dollop of that, swirled and frothed to perfection. But there has been something about the past few days to leave me longing, like the days when I forgo a grande sized goodness and regretfully choose the tall. When I finished this day, bedtime prayers were whispered, lullabies were hummed, Baker tucked tightly in his bed, my momma heart hurt and I uttered the words I almost never utter, “sometimes Down Syndrome is tough.”

On this day, I am wishing I could fight his fight.

For 32 months, I have watched Baker overcome.
He is an overcomer.

He has painstakingly endured countless hours of therapy to train his muscles to do the tasks and activities he beautifully boasts with the clumsy elegance of a toddler.

As of today, he has added sitting and standing, walking and running, eating and drinking, and putting on his socks and shoes to his resume as things he can do without assistance. And for that, my heart overflows.

Baker communicates through signs, through his gestures, through his body language so sweet.
I wouldn’t trade the way he shows his love to those he loves for all of the I love yous in all of the world.
I wouldn't, but he would.

He wants so badly to talk. Baker has been in speech therapy since he was 3 months old. He has fought for the day that words would come naturally. He learned a second language to compensate when the words wouldn’t form.

I wish I could fight this fight for him. As his mama, his biggest cheerleader, his number one encourager, I wish I could let this one thing come easily.

My husband so perfectly describes this as the “challenging blessing" of him having Down Syndrome.

And it is.
This journey has been a challenging blessing, with the blessings always outnumbering the challenges.

God's grace is amazing like that.

In retrospect, Baker doesn’t fight for everything. Some things come very naturally for him. There are things for which he doesn’t have to train, or go to a therapist, or work a day to accomplish. Some things he does with ease. Some things he does with an incredibly admirable grace.

Finding Favor


Until the words come, we’ll give grace.
When I can’t give him the words to use, I’ll give him grace.

When he can’t make me understand his substitutions for words, I pray he’ll do the same.

We’ll give grace.

That’s part of the challenging blessing of raising a child with special needs.
Besides, there aren't words to convey happiness and joy like these dance moves!!
I was so encouraged by Kelle Hampton in a birthday post to her daughter Nella on her blog.
"It’s not that you can’t talk—you can. It’s that you understand one of the greatest secrets of the earth—that words aren’t as powerful as actions. You’ve learned to speak a dying language of deep emotion, and your fluency and expression is remarkable, something brilliance can’t come close to defining. The words you use are prefaced with looks and gestures that tell the world you not only see it but you love living in it. You listen with your eyes and your heart, and you respond—yes, with words—but more so with your grin, your little quick-step skip, and those arms thrown out beside you to hug the world while you swing your hair and twirl, twirl, twirl."
Source: Enjoying the Small Things

Maybe we're the ones getting it all wrong - trying to substitute words for actions and gestures.
Maybe Baker is doing it all right.
Dancing instead of talking. Showing instead of telling.
Maybe he knows the greatest secret in communicating is without words at all.

Here I am trying to teach him the world,
in reality,
I am learning life's greatest lessons from him.


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