Monday, September 21, 2015

I Never Knew I Wanted a Child with Down Syndrome Until I Had One



I had a dream this past week that Baker woke up without Down Syndrome.
 
Like his extra chromosome was absorbed into his plush minky sheets.
Or as if the sandman had carted it off in his knapsack and tucked it beside the lavender he used for lulling.
It was gone.
Kaput. 
Vamoose.
  
His beautiful eyes still boasted their autumn pools, but lacked the almond slant that never fails to draw me in and captivate my whole being.
 
His tongue remained tucked obediently inside his cheek, not once lagging like it does on occasion, especially when he is focusing so intently.
 
His hands hung by his side not in front of his face for signing, as words bounded from his lips articulate and coherent and utterly foreign.
 
As I reached in to hug him, his body did not collapse into mine, as is my very favorite thing about Baker - the way his low muscle tone makes him puddle into my eager embrace.
He was stiff.
Solid.
Strong.
 
His steps did not waiver, not once did his balance falter. He was sure footed and walked with a stability his little body has never known.
 
In that instant, he became a typical child.
Gone were the thoughts of IEPs.
Therapies were tossed into oblivion. 
His struggles became successes. 
The specialists on speed dial were no more.
 
I sat abruptly in bed. Tears streaming. Faint whimpers escaped my lips.
I navigated through the dark room and padded the familiar steps to Baker's bed.
I picked him up and felt his warm body fold sleepily into mine.
 
It was just a dream.
He was still the same Baker Boy I had read Let me Hold You Longer, while his little body relaxed and his eyes grew heavy.
He was still the same Baker Boy I had rocked and sang "This Little Light of Mine," and to seal the deal, "You are My Sunshine" only hours earlier. 
Nothing had changed.
Everything had changed.
 
I don't know who said it originally, but I believe it to the very depths of my being.
I never knew I wanted a child with Down Syndrome until I had one.
No truer words have ever been spoken.
 
He is loved exactly the way he is.
He is one of our Creator's greatest masterpieces.
He was crafted in love.
He was knit together wonderfully.
He is a joy spreader, a light brightener, a glad giver. 
 
 
 
 
Being his mother is the greatest blessing.
Watching his life bring glory to our Jesus is an incredible gift.
 
Just the way you are, sweet Baker, we love you just the way you are.
  
"For we know that in all things, Christ works for the good of those who love Him, who have been called according to His purpose."
Romans 8:28
 

Wednesday, September 16, 2015

Barrett is Four Months Old!


 
Hey there my little sack of sugar!

 

 

 
 
Yesterday, you turned four months old!
 
You love to be held, and we are happy to oblige. Your little eyes light up when you see your mommy, daddy, and big brother. You are starting to recognize when you leave our arms to be passed to someone else, and you are not always extremely fond of the transition. I think we have a stage 5 clinger on our hands and I don’t totally hate it!

 
You love sitting up in your Bumbo, being swaddled, splashing in the bathtub, reading books, singing, your Baker Boy, babbling all the day long, lights, being outside, and watching the fan. We’ve even caught you trying to sneak a peek at the television and you are mesmerized!
 
 
 

 
Little Bear, you want to be a part of everything! You like to sit on the dinner table while we eat, play on the floor of the bathroom while we get ready, and would be perfectly content to spend the entire day in the baby carrier.
 
We think you're the greatest thing since sliced bread! You are rolling over and over and over, sleeping for 3 ½ hour stretches during the night (yes, this is a milestone at our house…maybe one day I’ll be able to forgive all of your friends who are sleeping through the night), grasping at objects, cooing, and clasping your sweet little hands together. Everything goes into your mouth and you drool like it's your Jay Oh Bee.
 
 
 
 
 
 
You take a bottle during the day at school and nurse at home. Thankfully, you have weathered the transition well. You are entirely too busy to sleep. You survive on little catnaps throughout the school day. Sunday afternoons are a different story! You’ll nap for a 2-3 hour stretch, which is glorious for all in the Bell residence. Hello naptime for Mommy and Daddy!


I think one of my very favorite things about you is how you are already adore your big brother. I never knew my heart could love in such a way. Watching you two together has me feeling all the feels!






It'll be a miracle if you ever learn your name. You are called everything under the sun. Right now, our favorite nicknames for you are Little Bear, Little Brother, LB, Bear Bear (that's what Baker calls you); but the very favorite name we call you is ours.


Little one, we love you so big! Each day with you is a little sweeter than the previous. Our love for you just grows and grows!
 We are so glad God chose you for us!
 
 
 Monthly Stats:
Weight: 17 pounds, 8 ounces (87th percentile)
Length: 26.5 inches long (99th percentile)
Size Clothes: 6-9 months
Size Diapers: threes

Tuesday, September 8, 2015

Social Media - Why I Share


As I look around the cluttered room, baby swing draped with last night’s swaddle, blocks boasting letters and numbers scattered haphazardly across the floor ready to lay claim to their next night walking victim, a kernel of popcorn from yesterday’s afternoon snack, a sleepy grin emanates across my face. Instead of tidying the day’s mess of memories or resting my sleepier than sleepy eyes, I kick back in our rocker, breathe in the newborn (yes, Barrett is closer to four months than three – but I refuse to acknowledge him as anything older than a newborn) sleeping noisily on my chest, and succumb to the thoughts dancing in my head.

I pick up my laptop and mute the fifty-seventh rerun of Friday Night Lights (Hashtag Texas Forever. Hashtag Clear Eyes Full Hearts Can’t Lose. Hashtag Dillon Panther wannabe.)

Here goes.

My name is Jennifer Bell. I am covered by His grace so abundant and free. I am a thirty year old mother of two deliciously scrumptious little boys. I have been married for eight years to the love of my life (RollTide Romance, anybody?).

 


If you have read this blog, followed me on Instagram or Twitter, or have been my Facebook friend for any length of time, I haven’t told you anything new.

I am a sharer, but not by default.

I am a sharer, because that is what God has called me to be.

It started here.
 
With the birth of my first son, Baker, He called me out upon the waters in my walk and in my faith. Baker was born prematurely with Down Syndrome. The Lord took me to a place where I had to rely solely on Him. He didn’t leave me there and let me be. He asked me to share my journey. He called me to be a light for Him to share joy and faith in the uncertainty and in the struggle. In this life, on this journey, there has been a great deal of uncertainty and struggle. There has been grief and sorrow. There has been exhaustion and doubt.
 

Through the broken, light shines.
 

At my most broken, the light of my Jesus shines the brightest.


In my feeble attempt at blogging and posting to social media, I hope to point to the cross.

I know that in all things God works for the good of those who love Him.
Oh, how we love Jesus.

So I share, because I know God is working goodness in our lives for His glory.
So we give Him glory.

Nothing we do is of our own strength.
We are powerless as parents.
We are the most amateur of amateurs.

The Lord gifts some with a beautiful voice, others with an ability to speak life with their words, still others with especially special talents to bring Him glory.

Me, He gave me life.

He answered my prayer of becoming a wife to a godly man who is the hunkiest of hunks.

He made me a momma. He gave me Baker and Barrett for such a time as this.

He gave me a passion for Him and for sharing how He moves.

He gave me this little corner of the Internet to sing His praise.

So that’s what I will do.

Let me be singing when the evening comes.  

 “The sun comes up
It's a new day dawning
It's time to sing Your song again
Whatever may pass
And whatever lies before me
Let me be singing
When the evening comes”
10,000 Reasons
Matt Redman

 

Wednesday, September 2, 2015

'Round the Dinner Table



When my mind drifts back to my childhood, I can’t help but think about the experiences provided for me that I want for my boys.

Evening bike rides illuminated by the setting of the sun.

Puppy dog baths that turned into an outside sudsfest for all.


Sunday mornings spent worshipping.
Sunday afternoons spent breathing it all in – the aroma of lunch wafting through the air, the smell of all things child – sweat, dirt, cookies pilfered before dinner, and the tiniest of hint of baby soap lingering from the previous night’s bubbles, the heavy perfume from the nursery worker who couldn’t resist baby snuggles.
Sunday evenings spent sipping hot chocolate around a campfire as we try to squeeze the last few remnants out of the beloved weekend.

Warm cookies at the end of the school day.

Bedtime prayers and bedtime stories and bedtime giggles that always worked to delay the inevitable bedtime.

Dinners ‘round the table.


 

No matter the meal, no matter the day, no matter the schedule, our dinners were spent ‘round the table.

My mom was quite the cook; but it’s not the food I remember. I can recall only a few meals; but I can name every person who graced our table over the years.
The people, not the food, made the meal.
Made the memories.

We talked of playground crushes and mastered multiplication facts. We planned adventures. We schemed neighborhood scavenger hunts and slipping notes and sweet treats to our favorite teachers.

We talked about anything.
We talked about nothing.

We talked about everything.

And now, our little family of four does the same. Brian in his seat, me in mine. Baker situated strategically between the two, and Barrett perched happily on the table top. All together.

Dinner is carried to the table, where each serves their plate. Heads are bowed, four eyes are closed (Baker keeps his opened slightly to make sure no one takes his food and Barrett refuses to miss a thing). Prayers are uttered, and a collective amen is whispered.

Sweet tea is poured. Forks are drawn. No morsel is safe.
And then my favorite part, conversation.
The worries of the day are drowned in the chorus of our voices.

It looks slightly different than it looked in my childhood home. Two children instead of three. A table of four instead of a table of five.

It sounds different, too.

The sounds of Barrett cooing and ahhing sprinkle the air and add more flavor to our table than even the tastiest of seasonings.

Baker has begun to contribute to the conversation, adding emphasis and nodding along. Part of Down Syndrome means his speech is delayed and he has to work harder to make his mouth say what his brain thinks. In his own language, Baker tells about his day. My heart swells. In words mostly undiscernible words, he talks.

I can imagine he’s telling us how Harper’s mommy sent cheese puffs while his sent some measly veggie straws. I am convinced he’s reciting the song they sang at music and the instruments he got to play. From the smile on his face and the joy in his voice, I’m quite certain he was the class leader today. I bet he got to peek out the window and give the weather report, lead the days of the week song, and even clean up after play time. He gets uncharacteristically quiet and I imagine he’s reflecting on his day, deciding what detail to divulge next. He nods emphatically, his face growing increasingly more animated. He begins again. His words powdering the room. I listen intently, study his signs, desperate for a clue as to what he’s telling so excitedly. My heart, equally thrilled at how eagerly he communicates and so broken and torn that a barrier as vast as the Great Wall stands between me and my baby boy.

How desperately I long for the day I can understand his every word. The day I can celebrate along when he tells us something good. The day I can heal his hurt when he tells of something gone awry. The day I can praise him for successes at school.

Sitting ‘round the dinner table with Baker, the Lord has taught me many things.

The greatest,
 
we speak with more than mere words


In all the words, in all my life, I have not been able to say what Baker has said in his.

His mouth, his body, his being, his heart all speak love, joy, strength, and hope.

What a privilege to be Baker’s mother. In every way, it is a blessing to be his mother.


My prayer tonight,

Lord Jesus, give me eyes to see and ears to hear. God, in your infinite power, strengthen Baker's muscles so that the words flow articulately. You are bigger than hypotonia. You are greater than a disability.

I trust your timing; for while we wait, we grow. 

Your plan is perfect.

You are faithful and your promises are true. 

Thank you for making Baker so wonderfully. For forming Him in your image.

I pray that you cover him with grace so abundant for him to lavish freely on us as we learn to communicate with one another in a language of love.

You are not the author of worry. You are not the creator of doubt.

I trust you are using this also for your good. So we wait. We celebrate strides made along the way. We glorify you alone for how you are moving in our son. How you are growing our family to look only to you for wisdom.

Lord Jesus, you are good. Your mercies are new every morning. Thank you the privilege to be a mother. Even more, thank you for the honor of being Baker's mother. I am so unworthy, but eternally grateful you trusted one of your most precious to me.

In your most faithful name I pray.