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.

 

 

a week of tricks, a week of treats

This week has been one of those weeks I would like to pour into a nice, fancy bottle and tuck into a drawer amidst all of the other bottles carefully packaged and sealed with the most scrumptious of memories.

 

The ones that make you remember the exact glorious color of the leaves, the unmistakable, perfectly concocted smell of candy corn and sweaty two year old foreheads.

 

It was a week of late nights and sleepy mornings. Too much chocolate and not enough coffee. Squeezing in dinners just like we squeezed in one more hay ride at the festival's close.

 

We smiled a lot this week. We dressed silly. We played tricks and enjoyed treats.

 

 

Before the madness of the week began, we snuck outside to enjoy the beautiful day.

We even huddled up for a shameless selfie, because sometimes you need a picture to capture the love threatening to burst from all the seams.

 

 

 

My little hunter for his party at school.

Two seconds before this picture was taken, I realized my shirt was on inside out.

Just doing my part to make all you other mommas look good!

 

 

 

 

Baker and his trophy from his African Safari hunt.

 

 

 

 

Baker dressed in 50's garb for our church's Fall Festival.

Eat your heart out, Sandy and Rizzo.

 

 

This is the face of a boy who just put on TWO socks all by himself!

I couldn't have been more happy if I had unearthed the secret to folding fitting sheets. Those darn things are a booger to fold!

I am so proud of you, Baker Bell. So proud!

 

Needless to say, I pulled over, jerked him out of his carseat, and did a happy dance. It was the happiest dancing ever done on the side of the highway.

 

 

 

On Friday, Baker dressed up for school.

Being an Alabama football player was the obvious choice.

Roll Tide, Baker Boy!

 

 

Baker's Nana and DD surprised him for his Halloween party.

What a treat!

 

 

After a full week of tricks and treats, our little family of three slept soundly on Halloween night.

We enjoyed a kitchen floor picnic of chocolate chip waffles, because clearly we hadn't consumed enough sugar in the last seven days.

Somebody was not thrilled his waffles were topped with sugar free syrup.

 

 

Happy Halloween, and a very Happy November to you! 

cowboy boots and faith

As soon as we saw certain little anatomy on the ultrasound confirming all things blue,
 we dreamed of a wild, skinned knee, mud-stomping, boot wearing boy.


Baker delivered all things wild, and skinned knees, and mud-stomping soon enough,
but the boots had to wait.


With Baker's different abilities, he requires some different equipment.


When he isn't padding around on his bare tootsies,
he is clomping here and there in his favorite tennis shoes
(most often New Balance 991s) with orthotics.
I posted more about that here.


Brian and I continued to dream about our boy in boots.
And Baker continued slipping his tiny foot into the big leather trough of his daddy's favorite leathers, pretending, as most little boys do, to be just like daddy.


We prayed, with expectation, for Baker's legs to be strong enough,
his ankles to be sure enough,
his balance to be stable enough to wear boots.


Sounds silly, right?
Praying for Baker to be strong enough to wear boots...but we did it.
Just like we prayed for him to crawl, and walk, and speak words, and drink through a straw, and give a high five, and point, and eat with a fork.
Things that might seem menial, but for us, are full of meaning.


They didn't make their debut when our favorite buckaroo turned two,
or on his fieldtrip to the Barnyard,
but finally, on farmer day, they were pulled out of the packaging, and with care, the tiniest cowboy boots were slipped on Baker's feet, and the receipt was finally crumbled and discarded with the day's trash.


We all rejoiced.


Baker pranced proudly around the house, and Brian and I cheered, like we do.
Silly parents, singing and dancing and hooping and hollering, at something so silly as a boy in boots.

 

books, barnyards, and a big, big boy

I opened my Jesus Calling this morning to this timely reminder, 

 

"Accept each day just as it comes to you,

remembering that I am sovereign over your life.

Rejoice in this day that I have made,

trusting that I am abundantly present in it.

Instead of regretting or resenting the way things are,

thank me in all circumstance.

Trust me and don't be fearful; thank Me and rest in My sovereignty."

 

This week has been full of full days.

Days filled with rejoicing for who He is and all He has given to us.

 

This past week has been filled with book reading, barnyard tripping,

and a boy that just won't stay a baby...no matter how hard I try.

 

one.

mornings spent reading with nanas are quite possibly the best mornings

 

 

two.

field trips where tractors are ridden and fish are fed are right up this bama boy's alley

  

 

three.

 work trips should only be taken here

Lord, our Lord, how majestic is your name in all the earth 

 

 

four.

he is far from the baby I used to spend hours rocking

he's my big boy

and I have never loved him more than I do today

 

 

 

 

 

five.

hello handsome

Alabama jerseys are best paired with cowboy hats, big smiles, and bare feet

 

six.

all boy. all day. everyday.

 

 

a day to remember

It was just a typical Sunday.

 

The calendar didn't indicate any spectacular plans, holidays that mandated a celebration, or trips here and there.

 

If that doesn't warrant a Glory! Hallelujah! Amen! and Praise the Lord!, then I just don't know what does.

 

We started it with a chocolate chip pancake picnic on the freshly cleaned kitchen floor.

Scrubbed tile just begs for smearings of syrup, fingerprints of powdered sugar, and smudges of gooey chocolatey morsels.

 

After breakfast, we headed to church for a morning of worship. We sang "Nothing but the Blood of Jesus," and engaged in a wonderful study about being restored from our sinful nature.

There is nothing like being immersed in the Word and engaging in corporate worship among fellow believers.

 

We came home, and ate a stand-at-the-countertop-and-cram-your-face-before-the-toddler-falls-face-first-into-a-sleepy-Sunday-slumber-lunch.

And we almost made it.

Almost.

 

While Baker napped, I tidied the house - started laundry, dressed the bed in clean sheets, ironed and laid out Baker's clothes for the week, cleaned our bathroom (Baker's gets cleaned almost daily - a toddler in tee tee training - hello Clorox wipes), made a grocery list, did a little meal planning, and sent Brian to Lowe's. Like manna for the soul, my main man was restored simply walking among power tools and dirt (insert Tim Taylor grunt). And I was in my happy place, cleaning, organizing, planning, and sneaking little peeks at my sleeping angel. I've learned a little something in my twenty-eight months as Baker's momma - toddler's play hard and crash harder.

 

Baker woke up rearing to go.

 

It didn't take me long to realize -

what started as just an ordinary day,

was most assuredly a day to remember.

 

He had a sparkle in his eyes, which I now know was a healthy dose of mischief, a little smidgen of puffs leftover from his morning snack, and a whole lotta B-O-Y.

 

 

 

I realized there would never be another day dated September 21, 2014.

 

This was our one chance to make this one count.

 

By golly, we were making it a day to remember.

 

 

Doing life with this one is the best way to do life.

 

Transforming the ordinary into the extraordinary is something we do well.

 

with a thankful heart

Three heads were bowed.

Six eyes were closed.

Hands of varying sizes were clutched tightly around the dinner table.

As the blessing was spoken, and “Amen” was uttered, my husband looked up. First at Baker, who still had his head slightly bowed, and his hands clasped tightly beneath his chin, and then at me. He shook his head, with a shake that said, “I just can’t believe it,” pursed his lips, and finally spoke audible words,

"We are so blessed to have Baker. Baker is so blessed to have us.”

 

That man I married, he’s a good egg.

 

We don’t stop in our tracks much. Our lives keep us going and doing, but when we do pause, we stand in awe at the Lord’s goodness and grace in our lives.

 

He never promised our walk would be easy, but he did promise His faithfulness to walk with us.

His promise has endured.

Our hands He has held, our burdens He has carried, our victories He has rejoiced.

And we give Him all of the glory, honor, and praise.

In all things, but especially in our Baker Boy.

For me, it is impossible to look at Baker, and not see joy perfected.  The Lord made Baker special, and He made Baker for a purpose. He has a heart so tender and a determination so fierce. He smiles with his whole being. He loves big and worries little. He is a fighter, an overcomer, a joy-giver.

 

"We are so blessed to have Baker. Baker is so blessed to have us.”

 

I pray we never lose sight of the blessings in our life. I pray we are daily overwhelmed with thanksgiving and gratitude for the undeserved, but oh so sweet miracles so graciously offered to us.

 

PS - I am also pretty thankful the Miss America comes on tonight! Twitter is especially fun on nights of the Miss America pageants. Join the fun and follow me on Twitter here.

do as i say. do as i do.

Do as I say, not as I do.

I've heard it.

I've said it.

I never knew how true those words would ring until I saw myself, flaws and all,

mirrored in my son.

he picks up my phone
swipes the screen
answers
walks away
talks
laughs
talk some more
then, "bye bye"


he smells flowers
no matter where he is
when a bloom is in sight
he stops
he sniffs
he grins


he towels the refrigerator door
ridding it of the smudged artwork left by friendly fingers


he picks up a book
finds a cozy spot
curls his legs under him just so
opens the book
turns the page
breathes a hearty sigh
smiles
turns the page


kisses his daddy on the lips


brushes his teeth
spits
wipes out the sink
gives the mirror a toothy grin


opens the pantry door
scours the bottom shelf
closes it empty handed
opens the pantry door
shrugs his shoulders
settles for the vanilla wafers
closes the door equal parts content and discontent


points his finger
puts his hand on his hip
fusses at Harley
throws him a bone anyway


picks up a heated curler
presses it to his hair
retrieves a clip
creates a cloud of hairspray


opens drawer
selects my Bible
stretches his feet out straight
opens the cover
basks in His word

Every time I see him do the things I do, I am challenged to be a person who can say,

"Do the things I say.

Do the things I do."

An August to Remember

August gets a bad reputation.

It's hot,

it's expensive (hello back to school),

it's hot,

and it means bidding farewell to summer.

 

Did I mention it's hot?

 

Hot or not, we made it an August to remember!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Until next year...

 

first days of school

 

My littlest love started his second year of school on Monday.

 

 

 

Baker was over the moon!

 

We spent the week prior grocery and school supply shopping,

 laying out his outfit, packing his backpack, and labeling all the things.

There is no mom who loves back to school like a teacher mom!

 

He couldn't wait to see his friends and teachers.

 

 

 

We are looking forward to another wonderful year!

 

 

Baker Boy,

 

 

This week you started your second year of preschool. I hung back as you walked in, hugged on, and high fived all of your friends - old and new. I watched you wash your hands and then hang your backpack in your cubby, as is the routine. Then, you walked to each of your classmates and greeted them, settling in to your new classroom with ease.  

 

 

You have been so excited about your return to school. Each night before bed, we read "Brown Bear, Brown Bear, What do you See?" - a personalized version with each of your classmates' pictures. We called them by name and talked about how excited we were to see each of them again. These classmates are friends, of course; but you love them like family. They help you up when you fall, and encourage you when something is difficult. Together, you laugh and play and learn. You're their Baker Boy, and they are your very best friends.

 

 

You love school. And it warms my heart dearly how much your school loves you. The walls of your school provide structure and security, warmth and encouragement, and a lot of love.

 

 

You are becoming more independent. This is a bittersweet stage for me. I love watching you do things at your own pace, and in your own way. You need me a little less, and some days, that's tough for your ole mom. You'd rather walk than have your mommy carry you, and you much prefer to sit beside me than snuggled in my lap. And my heart broke into a million teensy pieces never to be put together again a little when you wanted to walk into school with your backpack and lunchbox and without me holding your hand. But more than anything, my heart is so happy at the little boy you are becoming.

 

 

 

 

 

Today and always, I am so very proud of you.

 

 

Baker Boy, this school year is yours. 

Yours to learn from and grow in.  

Yours to love.

Yours to thrive.

 



With all my heart,
Mommy

sometimes God answers no when i pray

"sometimes God answers 'yes' when I pray,

sometimes God answers 'wait' when I pray,

sometimes God answers 'no,' just because He loves me so,

but I know God always answers when I pray"

 

I remember signing this verse in children's church, and today, 25 years later, I still find myself humming the tune and singing the lyrics.


When I pray with faithfulness, with an expectant heart, with an eager spirit, I often misinterpret a "not right now" or "not at all" for God not hearing my prayers.


when a diagnosis is confirmed,
when a heart hurts,
when His timing is not my own,
when farewell is uttered,
when a door closes,
when a job fails,
when a storm devastates,


God is still God.
He is still reigning on His throne.
The Creator of the universe still knows my name.
The Almighty still holds my life in His hands.


If he had answered yes to one very strong, very purposeful prayer.
A prayer that was uttered just over two years ago.
A prayer where we begged and pleaded and petitioned for our son to come into this world without Down Syndrome.
We wouldn't be us.
And I just cannot fathom how that could be.

His ways are better.
His grasp is stronger.
His thoughts are higher.
His love is greater.
His plan is bigger.

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." 

Five on Friday

Happy Friday, friends!

 

We have had the best week!

We are still reeling from a fun day yesterday.

This week has been all about soaking up the last few minutes of summertime,

and squeezing in a few necessary appointments.

 

one.

Baker and I spend a lot of time in the kitchen.

I love to bake, and I love to bake with Baker!

Fitting, huh?

 

 

One of our favorites are Muddy Buddies (or any variation of Chex Mix),

and sampling as we go is an absolute must!

Research has proven, the more chocolate and peanut butter on your face, the better they are. True Story.

 

Muddy Buddies Recipe



 

 

two.

These two boys, y'all.

There's something about a boy in a backwards cap that makes me go weak in the knees.

And these two do it better than anyone else.

 

 

  

three.

Baker visited our family dentist and a new specialist at Children's Hospital this week.

Both visits went really well!

 

 

 

 

four.

Croutons and milk. The snack of champions.

 

 

 

five.

My sleeping baby.

My most favorite part of summer has been rocking Baker for his afternoon naps and sneaking a peek at him while he sleeps. I am going to miss these long summer days when school starts back on Monday.

 

 

This summer has been the very best!

I love my job, and I love that my job allows me summers at home with my family.

Here's to great memories of a fabulous summer and the anticipation of an exciting school year!