Thursday, September 18, 2014

a present no package could contain (a post about Down Syndrome)

I typed quickly, with a fervor and a fire that couldn't be extinguished.
Then, with the same intensity, I deleted every blackened letter and stared blankly at the white space.
 
The words weren't right.
 
They flowed about as fluidly as liquid through a straw with a lemon seed stuck in its interior.
 
I closed the computer, tucked it safely in my school bag.
It was sandwiched between data meeting agendas and notes for the next day's professional development.
 
I beckoned sleep, but sleep did not beckon me.
 
My head held ideas tossing forward and back, as the sheets enveloped my body, mimicking the motion.
 
The thoughts won the unfairly weighted battle, and I retrieved the sleeping computer.
 
It whirred noisily in my lap and wakened as cantankerously as a teenager on a Saturday morning.
 
I have wrapped Down Syndrome in a package.
 
The edges have been folded and carefully secured with transparent tape.
A big, bright, shiny bow has been looped, swooped, and pulled until a masterpiece tops the beautifully adorned parcel.
This is way I present it, just as this is the way it was presented to me.  
 
Most of the time, Down Syndrome is gifted and received with the joy and excitement of a child on Christmas morning.
It is beautiful.
It is most worthy of pictures and "oohhs" and" ahhs."
It warrants proclamations of exultations and declarations of appreciation to the Most Gracious Giver of Gifts.
 
It has opened doors and paved paths.
It has introduced new friends and greater faith.
It is a part of our life, and one I wouldn't trade for anything in the world.
 
But some days, I recognize the struggles Baker has,
and will continue to endure, and my heart aches for him.
 
As a baby, as a toddler, as a child, as a teenager, as an adult,
in some way, shape, or form, his different ability will hinder his development.
 
He will work longer, try harder, more persistently persevere.
Menial tasks will be more arduous.
 
I am his mother. His protector. His cheerleader. His advocate.
 
As such, I want to shield him from all of the hurts, all of the hard days,
all of the unkind words, all of the sideways stares.
 
And when I admit that, the so carefully crafted carton begins to unravel.
 The tape begins to lose its adhesion.
The bow is unfastened.
 
Down Syndrome breaks free, and when it does,
something more magnificent than even the most marvelously manicured package manifests.
 
It no longer conforms to the confines of a casing.
The wrapping paper has been relinquished.
 
There is beauty in the imperfection.
A beauty no box can contain and no d├ęcor can disguise.
 
The packaging has been cast aside.
 
It has been trampled on by our traipsing through the living room in our nightly routine of catch me if you can, and stop me if you dare.
 
It has been diminished in the laughter emanating from our back porch dance parties illuminated by the moon's glow.
 
It has been squelched in the squeals of tickle fights.
 
This boy of mine, he is a present no package could contain.

Sunday, September 14, 2014

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.

Thursday, September 4, 2014

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."

Tuesday, September 2, 2014

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...
 

Sunday, August 31, 2014

having it all has nothing to do with all you have

Today I am reminded of how finite life is.
 
We simply have 
a beginning and an end,
a hello and a goodbye,
a start and a finish.
 
And a few fleeting minutes in the middle.
 
Having it all has nothing to do with all you have.
 
 
 
It's not about stuff.
Or crossing off to do lists,
or accomplishments or accolades.
 
It's not about where you live,
or what you drive.
 
It's not about what's lining the shelves of your refrigerator,
or hanging in your closet,
or boasting quietly in your trophy case.
 
It's not about job titles or degrees,
or paychecks or bonuses.
 
It's about making chocolate chip cookies from scratch,
baiting a fishing hook,
reading a bedtime story,
taking a Sunday drive,
splashing in puddles,
listening to stories about the good ole days,
making mudpies,
walking hand in hand down the sidewalk,
handwriting notes.

It's all about love that endures,
grace that saves,
friendships that persevere,
family that supports,
memories that sustain,
and hope that restores.  
 
Tonight, as we tuck in tightly, snuggle up soundly,
and whisper our bedtime prayers,
I can't help but realize, and be eternally grateful, we really do have it all.
 

Saturday, August 23, 2014

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

Tuesday, August 19, 2014

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.