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.

Love

Laughter

Acceptance

Giving

Joy

Cuddling

Finding Favor

Generosity

Tolerance

Charm

Embracing

Gratefulness

Grace

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,

when,
in reality,

I am learning life's greatest lessons from him.

 

 

Sixteen Weeks, a Proud Mommy Moment, Thanksgiving, and a Big Bama Win

 

 

What I’m eating: The better question is what am I not eating? Indigestion is starting to creep in slowly, so I have had to be more careful of what I eat. The food test usually involves the question, "Do I really want to taste this for the next 652 minutes?" If the answer is yes, it's a go! I love food not knocked up, so it's only natural that I love, love food with a bun in the oven. Speaking of buns and ovens, I think it's time for another snack.

Big Brother Baker: Baker loves all things Alabama football. It's only natural since Brian and I both graduated from The University of Alabama, and scream Roll Tide randomly throughout the day. We have been identifying the Alabama 'A' on all of our Bama paraphernalia with Baker. He loves spotting it on shirts, hats, jerseys, on the television, and even on flags while driving around town. While in the bathtub last night, we were playing with his foam letters. It thrilled my soul when he grabbed the orange 'A' and proudly proclaimed "ah, ah, ah, ah." I had no idea he could make the transfer. I'm in full on teacher mom mode round here and am sure he'll be spelling Saban in no time. I kid, I kid. It's only fitting that he learn Bear Bryant first. If you didn't see this video on Instagram earlier in the week, it's a must see! (Click on the image to watch, or you can access the YouTube link here).
 

Sleep: I feel like I'm back to first trimester with my sleeping patterns. I have been so tired this week.

Maternity Clothes: My best friend Kristen is pregnant too, (how fun is that?!?) and she shared some awesome black pants from Gap she bought. I am convinced that I could possibly wear them every single day until this baby says hi. I could kiss the designers at Gap and Old Navy for making affordable long maternity pants.

Size of Baby: Avocado!

Baby Names: We have narrowed down our list - four possible boy names and seven possible girl names. No judging, that's serious progress!

Gender: I have been screaming boy all along, but earlier this week, I suggested to Brian, "What if it's a girl?" While I don't know what we're having, I am certain of one thing, there isn't a baby in all the world who'll be loved just like this one. Baby Boy or Baby Girl, we already love you to the moon and back.

What I Miss: I always hesitate to say I miss something. I remember reading these while praying for a baby, thinking I would give up wine and caffeine and clothes that fit and anything else for all the days of my life just to be pregnant. I know what it feels like to be in that season, to long for a baby, and to cringe when people complained about some of the unpleasantries that accompany these nine months. So, while there are things I look forward to having again, there is nothing I miss greater than the joy that comes with this time.

Best Moment of the Week: This week was filled with wonderful moments. Our holidays were teeming with love, laughter, and food. We filled every possible minute with the promise of memories with friends and family.

 

Happy Thanksgiving from our family to yours.

 

 

 

 

These girls are my favorite girls.

We were celebrating 30th birthdays, babies on the way, and engagements!

There is always something to celebrate when they're in town.

 

 

 

 

Brian and I were surprised with Iron Bowl tickets and a free babysitter for our birthday.

Roll Tide!

 

 

 

 

 

 

Down Syndrome, for what?

I've traded my summer reading of "Where'd You Go, Bernadette," and sunscreen labels, and "Must Make Recipes of Summer" and "How to Survive the Beach with a Toddler in Tow" in exchange for professional development materials. But I'm still clutching this Word like my entire life depends on it.

And it does.

Today my reading was not new. It was very familiar. But I read it with new eyes. I read it with a renewed spirit. I read it with hope.

"As he went along, he saw a man blind from birth. His disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind?"

"Neither this man nor his parents sinned, said Jesus, "but this happened so that the works of God might be displayed in him."

John 9:1-3

I sometimes change the words. I don't think He minds. I change a few names, conditions, and even the tenses. But the last part always remains. Baker was born with Down Syndrome "so that the works of God might be displayed in him."

this

and this



and this, too



"so that the works of God might be displayed in him.

And they are. Every single day.

Through his dancing, his winking, his finger pulling, his joy so infectious, his laugh so contagious. His whole body points to the greatness and faithfulness of my Jesus.

What did God make so uniquely you to display his greatness? What doors has He closed and which others has He propelled you through to evidence His goodness.

Is it your job? Your relationship status? Your different ability? Your career? Your gains? Your losses? Your talents? Your gifts? Your hurts? Your fears? Your parenting style? Your voice?

Whatever you are, wherever you are, be you "so the works of God might be displayed in you." 

Favorite Things Friday

He sings.

I melt.

 

 

He has also started feigning coughing for attention, since he clearly doesn't get enough.

I may or may not have been responsible for this.

Happy Friday, friends!

Blessings to you and yours on this beautiful Easter weekend.