Tuesday, December 22, 2015

Christmas.....Special Needs Style

Christmas tends to be a hectic and chaotic time of year.  Packed with coming and going, shopping, baking, wrapping, planning, it can suck the joy from the very best of us if we let it.

For the past several years, Christmas has been exceedingly hard on Moise.  We've tried, in spite of the difficulties, to keep up with the traditional holiday hubbub.  Dragging him here and there. Struggling to keep him content in an environment that breeds confusion and frustration for him.  We've spent endless amounts of energy getting both, Moise and Kruz, dressed and medicated, packing special cups, spoons and extra diapers and loading them, complete with walkers and wheelchairs among piles of gifts and trays of mandatory festive foods, into the van.  Upon arriving, the struggle to get them and all of their paraphernalia in the door of an already packed building is very real and very physically draining. Then anxiety and tension is immediate as both boys are instantly thrust into freak out mode from sensory overload. Too many people equals too much noise equals yelling, crying, rocking, thrashing, grabbing, scratching. Jim and/or I typically spend much of the holiday in a separate room, frantically trying to ward off the impending doom of Moise-is-going-to-flip-his-lid and ruin the day for everyone. All the while we hope, for the love of all that is good and holy, that Moise doesn't need a bathroom because that, in an un-adapted bathroom, takes us to the now-I'm-going-to-flip-my-lid zone.  And somewhere in the midst of it all, the joy and peace of togetherness is lost.  All in the name of keeping the Christmas spirit.

This year, knowing that Moise's rapid growth over the last year would make every holiday event even more difficult than it was before, and with Kruz's histeria over too many people in one place at Thanksgiving fresh in our minds, we opted out of all Christmas gatherings.  We said "no" to anxiety and "yes" to peacefulness.  There's a hint of sadness as we bid farewell to lifetime traditions. But that sadness is quickly being replaced by a deep sigh of relief as we approach Christ's birthday without the mounting tension. Our two youngest boys come with their share of complexities. But there are times, like now - when they force us to choose simplicity - that I so appreciate them and the impact they have had on our life.

These past few weeks have been blissfully uncomplicated.  We enjoyed holiday shopping before the stores became packed and the lines endless. We've strung lights and decorated the tree, baked cookies and wrapped gifts, all at a much slower pace than ever before. The nativity, with Mary and Joseph gathered around the One who was born to bring the peace that this world so desperately longs for, has been moved up to the dining room hutch, away from curious little hands.

We're three days into Christmas break and Kruz and I are enjoying longer than usual snuggles in the glow of the tree. There are few things sweeter than freshly bathed babies in snuggly footed pajamas that twist and dangle from baby feet.

I'm not sure if I've ever shared this with you, but my husband is amazing in the kitchen when he wants to be.  I treasure the sound of he and our daughters working together over whatever happens to be the current culinary masterpiece.  In this case--gingerbread men.

Jade and I have also shared lots of time in the kitchen this season. She's home from college, which offers plenty of time for making more and more holiday treats while everyone else is off to work. Without so many places to go, the baking is for no other reason but for the sheer joy of it.  Kruz is wherever we are and spends an inordinate amount of time playing in the cupboards and occasionally finding himself in a predicament.

Gift giving, where Moise and Kruz are concerned, is completely stress free.  I never, ever worry about what to buy or how much to spend.  They like the paper and the boxes but they don't care about gifts and I've long ago given up the idea of buying obligatory gifts for them. I buy things if I think it might aide in their development but I know that all they really want is us, our time, our love, our touch. All the things that no amount of money can buy.

Laynee also continues to teach us in her absence.  Another angel hangs from the tree, representing yet another year without her. Her tree out back glows beautiful and pink, a gentle peaceful reminder to slow down, to enjoy this moment because life is fragile and next year doesn't always come.  

Christmas looks much different at our house this year than in years past.  We're making new traditions. It's slow. It's quiet.  It's peaceful.  I am so thankful for the simplicity that our two complex boys bring into our life. It's so much easier to remember the true meaning of this season when we let go of some of life's expectations.

God is good, all the time.

Sunday, October 25, 2015

I'm So Glad There Are Octobers.

"I'm so glad I live in a world where there are Octobers. 
It would be terrible if we just skipped from September to November, wouldn't it?" 
L.M. Montgomery from "Anne of Green Gables" 

 I'm not sure what October is like in other parts of the world, but in our world (and apparently in Anne Shirley's) this autumn month is nothing short of splendid.  I feel sorry, truly sorry, for those who don't get to experience October as we know it, a virtual feast for the senses. 

Over the last few weeks we've donned everything from shorts, t shirts and flip flops to jeans, sweatshirts, and boots.  It's the nature of the month: bright warm sunshine one day and blustery cold north winds the next.  We've watched as, one by one, the fields around us are harvested.  The combines, complete with large clouds of dust, make their way up and down every field in the area.  Our view, blocked by six foot tall corn fields one day, stretches out for miles the next. 

We've picked buckets and buckets of apples. The good ones became applesauce,  apple pies, apple crisp, apple muffins, and cinnamon spiced apples.  The not so good ones entertained us as we watched the horses next door munch and crunch and snarf on the sweet taste of autumn.   

We visited the orchard for our annual race through the corn maze. The guys won but us girls sharpened our map reading skills.  We'll get them again one day.  We came home with arms laden with jugs of cider and cartons of apple donuts.

And pumpkins.  They sit on the porch begging to be carved. In the meantime, the scent of all things pumpkin mixed with cinnamon, cloves and nutmeg permeates the house and every coffee shop around.

We've enjoyed countless nights around the campfire, talking with friends or family, roasting marshmallows and assembling warm gooey smore's.  There's something mesmerizing about a campfire. Something that draws you in, welcoming you and inviting you to sit and stay awhile. It brings people together and somehow creates a sense of peacefulness.   So we do and it always ends up being longer and later than intended. But that's okay because it's October and it only lasts a few short weeks.

And what's October without a hay rack ride down the country roads, bundled up against the cold winds in your face.  I've always wondered: does everyone do hay rack rides?  Or is it just a Midwest delight?

You guys, we are living our last October filled with cross country.  Cross country is such beautiful sport in October.  All those colorful trees and colorful uniforms. So much strength, discipline and determination coming together in one mass of runners. The stomping of hundreds of spike clad feet racing through grass and fallen leaves.   It makes me want to cry.  By the way, see those two boys in the the maroon and white uniforms?  The shorter one in front with the dark hair is my son.  He makes me proud. He's becoming a man too fast though. That makes me want to cry a little too. But I've learned to never wish for my children to stay young forever because sometimes they do.  Sometimes we wake up and realize that our babies never got a chance to grow up.  So keep growing my boy.  Grow and mature and become a fine man of God.  

Kruz goes to cross country meets too, only he  doesn't run.  He rides in his stroller and looks bored.

The ultimate trademark of October is leaves.  Leaves that burst, from brilliant green to orange, red, yellow, brown.  If you watch close enough, it's a stunningly beautiful transfiguration that takes place right before your eyes. And then, when they begin to fall the world, at least our part of it, smells like fallen leaves and burning and so much goodness. 

Last week I watched one day as the last leaves on the Ash tree out back seemed to be clinging and hanging on desperately as the wind whipped and pulled at them.  It reminded me of life.  Sometimes strong winds batter us and we hang on to life, as we know it, until we can't hang on anymore.  Finally, when we let go, we find that God--the same one who creates the winds and the leaves--has something better for our life--something that requires that we first let go.  

I love October mornings when warm days and cold nights create a lake effect and we awaken to the majestic image of steam rising up to meet the glorious backdrop of fall.

Then, in the evening, the sunsets wow us with their sheer perfection.  Sunsets always make me think of my baby girl, somewhere out there in a place I cannot fathom. But in my own humanistic mind she's there, on the other side of the sunset, waiting for me.  Not missing me like I miss her, but waiting just the same.

 There's an achiness to October that can't be described.  It''s so beautiful as summer and winter begin to intertwine.  So beautifu that it sometimes hurts in that place deep inside that can't truly grasp God and all of His power. As the leaves turn and blow and fall, it signifies the beginning of the end of another year.   

In summer and winter and October, 
God is good, all the time. 

Thursday, October 8, 2015

25 Years and Growing

Every love story is beautiful, but ours is my favorite

Jim and I celebrated our 25th wedding anniversary last week.  I've struggled to find words to commemorate this milestone.  How does one sum up twenty five amazing years of joys, successes, failures and sorrows in one simple blog post? There really are no words that can articulate all that fills my heart as look back over our years together.  But if I were asked to choose one word that would best describe our marriage, our relationship, our love, I know exactly the word that I would choose.


The growth itself is not that noteworthy.  After all, one would expect that in twenty five years we would grow... spiritually, emotionally, relationally.  It is the means by which we've grown, that amazes me most.

Twenty five years ago we were young.  I was 20.  He was 21.  We were both skinny and gangly looking.  I had hair with bangs that reached too high.  His hair was parted on the side in "slick back" style.  Yet, somehow, we were very attracted to one another.  We were so smart... or so we thought.  We had an idealistic, storybook vision of what our life together would look like, complete with "and they lived happily ever after."  We actually thought that we had some control of what our future would hold. We were wrong-- incredibly, unbelievably, utterly wrong.  The picture in our twenty something vision  must have been from someone else's future storybook because it certainly wasn't from ours.

Somewhere along the way our story has unfolded and....well... it hasn't exactly been a fairy tale.

We've grown.

We're not so skinny anymore and there are hunks of flesh in places we didn't even know existed back when we were 20. There are jiggly places on our legs, arms and belly.  Our combined total of chins is greater now and we've long ago given up counting the gray hairs on our heads.  We've grown little lines around our eyes.  And the little spots that suddenly appear on our skin? The ones that once elicited an "Oh my goodness!! What is that?" Now get nothing more than a shoulder shrug,  "Hmmm, there's another one."

We've also grown in number.  One, two, three, four... 2 boys, 2 girls.  The perfect family. Little mini me's growing up to be just like us and often taunting us with mirror images of some of our own not-so-perfect traits. Don't get me wrong... our children are wonderful.  Just not perfect because that would require perfect parents and somehow, in all this growing, we never grew into perfect parents. Then, though not from my womb, children kept coming.  A boy, a girl, another boy.  I actually never thought I'd make a good boy mom so I really don't know who ordered up all these boys.  I only know that there were phone calls and our hearts, already bursting with fullness, somehow grew and made room for one more.

Our home grew too.  We went from a little house to a bigger house to an even bigger house.  Then, the even bigger house started growing in unexpected ways.  Rocks caused holes to grow in the windows. Dents grew in the plaster from too many wrestling matches or inside dodge ball.  Mold grew in one of the bathrooms from failure to turn on the fan during too many eleventy hundred minute teen aged showers. That same bathroom grew a hair product film on every imaginable surface. Then, a few years ago, we started growing handicap accessible.  Handrails, wheelchair ramps, lift chairs and extra wide doorways.   The number of vehicles in our family has grown to the Nth degree.  I'm fairly certain the mail carrier thinks we are aiming for the world record for number of auto insurance policies in one household. And my story book never made mention of a nearly 20 year old wheelchair accessible van that dings "DOOR AJAR" all the way down the road, but it's the one vehicle in the whole lot...I mean driveway....that I can't live without. Take the silver van.  Take the truck. But don't take the red van with the wheelchair lift. And don't dare park too close to it or I'll hit you with my lift.

No one ever told us that raising children would become increasingly difficult as they grow into adults.  I'm still smarting over this one.  Someone should have told us this!!! But NO!!  My storybook never once told us that the scrapes and boo boos of toddlerhood would morph into heart aches so big that no amount of kisses or band aids or stitches could fix.  That should be written in every couple's storybook if children are a part of the story. But through all of the laughter, the frustration the heart ache of parenting, I've grown deeper and more fully in love with the father of my children.

Twenty five years ago we pictured romantic dinners by candlelight and quiet winter nights curled up by the fire.  We couldn't possibly have known that every night of our life would be a date night for us.  Yep. It's true.  Every night Jim and I meet around 8pm in our handicap accessible bathroom and we dance the same beautiful dance together.  It's a dance of showering, diapering, dressing and medicating two boys who can't do it themselves.  We've been dancing this same dance for years and we move together in flawless motion. It's not our favorite dance.  Some of the moves are physically taxing, but we've nailed it. Along the way, the love in my heart has grown deeper from the daily witness of the gentleness with which my man can dance.

After we buried our youngest daughter, there were many well intentioned folks who felt the need to warn us of the divorce rate for couples who lose a child. "Losing a child can be really hard on a marriage," they said, as if maybe we hadn't already thought of that.  But they hadn't read our real life storybook either. They didn't know that our hearts would grow ever closer as we witnessed our own pain reflected in the other's eyes.  They didn't know about the endless nights when our tears would blend together in one unending stream as we shared our wretched, mutual pain. During this time we thought we'd never smile or laugh or feel joy again.  But we did. And we grew. I can't begin to explain it but our marriage bond grew deeper through all the agony. My need for the man whose heart was equally as shattered as my own, grew exponentially through all the rubble and brokenness of grief.

If we'd written our own story it would have looked dramatically different.  It would have been free of trials and pain and rivers of tears. Because we didn't know.  We didn't know that real growth comes from poor choices and failures and being stripped of all that we thought we were.  As I look back over the years, the very good times and the very bad times, I can't thing of a single time when we grew because everything went exactly as planned.  I wonder, if we met that young couple today, the ones who vowed to do life together 25 years ago, would we even recognize them?  Would we be able to see through the gray hairs and chiseled edges to the idealistic youth that thought they had it figured out?

I am grateful for this man, with whom I've spent more than half my life.   I can't wait to grow through the other half of life with him, even though I know it's never going to be a fairy tale and we're not writing the story.

Therefore what God has joined togehter, let no man seperate.
Matthew 19:6

God is good, all the time.

Sunday, September 6, 2015

Not This Weekend

I opened my eyes this morning as the sun was just beginning to filter through the shades. I felt it immediately-- the tightness in my throat and chest, the heavy weight of my arms, the writhing in my spirit, tears stinging the back of my eyes, a sense of disconnect from the world around me. The human body is an amazing thing.  Even before my mind could brush away the cobwebs of sleep and form a coherent thought, my senses knew, it's Labor Day weekend.

Six years ago we were in the midst of a beautiful weekend. That Sunday was spent hiking and climbing the cliffs of Giant City State Park with my parents.

We had a picnic lunch under a pavilion as we waited for a rain shower to end. The kids thought it funny when grandma tried her first taste of Pepper Jack cheese and immediately dubbed it "evil cheese." We ate ice cream in a joint that could have been the setting of an old western movie.

It was hot and humid, just like today, but grandpa toted Laynee on his arm all day long. Grandpa and his youngest granddaughter formed a bond that weekend. He was her newest hero and she added Papaw to her vocabulary. We all laughed at her sweet little girl antics.  We loved her.  We adored her.

Six years ago today, life was so good, so happy, so free of grief and trauma.........and then it wasn't.

I wasn't taken off guard by the feelings that greeted me this morning.  They are a familiar part of grief and loss.  I know them well and have come to expect them. What does come as a surprise is the intensity of the feelings.  How can it be that, six years later, the wounds can still be bleeding?  How can it be so raw, so fresh?

Labor Day weekend will forever mark the anniversary of the last time we held her. It hurts, it always will.  I've long ago given up the ridiculous notion of "getting over it," as society would like for us to do.  My heart, my life has moved on but I'll never be "over it."

After six years, I have come to understand and expect that somewhere around the middle of August, around the time that school starts, my senses begin preparing my heart for this weekend.  There comes a day, each year, when I step out my door and I know it's that time. Something seems to change in the atmosphere. The air feels different, hot and dry. The morning dew is thicker. It smells like a combination dry leaves and corn ripening for harvest, a smell forever stamped in my mind as the "smell of Laynee's death."  It's the smell that permeated the air as our horror unfolded and we fought to bring back life.  Bright colorful dahlias and mums begin to make their appearance and my mind knows those are the flowers of Laynee's funeral.  I hear the sound of a hunter's gunshot somewhere in the distance, another reminder that it's that time of year.  All of the senses come together bringing memories of our last days with her.

A couple days ago a photo came up on a my facebook timeline.  "You posted this 4 years ago," it said.  Four years ago, three years ago, every year since 2009, this weekend has been painful.  We've remembered and we will continue to remember.

Last week a friend ask me, "will it be better the day after Labor Day?" It won't.  There will be foggy memories of her funeral, of putting her in the ground,, of broken hearts, wounded children, and trying to go on when our world had crashed.  It won't be better right away, but it will get better.  We've been here before.  The pain will not go away but neither will it remain in the fore-front of our hearts. 

 Good things will come again.  We'll laugh again.  We'll know peace and happiness and joy.  But not today, not this weekend.  

He heals the brokenhearted and binds up their wounds. 
Psalms 147:3

God is good, all the time. 

Wednesday, August 19, 2015

Does Heaven Have A Yellow Bus?

The first day of another year of school.  Momma's all over the world experience that bittersweet emotion as they send their children off to the world of learning.  My own stomach was a pit of nervous and excited tension as I packed lunches and book bags and, one by one, sent my children off.

Moise was smiling and happy as we wheeled him to the bus.  My heart tugged a little as my over active mind imagined his confusion when he finds that school is not the same beloved halls he knows.  There will be no familiar faces, or secretaries who hand him candy when he delivers the lunch money.  His Aunt Gail won't be there to see him in the cafeteria at lunch time and all the kids at the new school won't know to give him "knuckles."  But I'm trusting in the knowledge that God has this under control, that he knows Miose's needs better than I do.  I'm going back to the calm, peaceful assurance that we felt when we made the decision to transfer him to a different school.

Kruz exuded sweetness as he marched out to the bus in his walker, sporting  new duds and Spider Man on his back.  His world is expanding on this first day of school.  He's gaining friends and teachers, new toys and exciting adventures.  He'll learn from and teach those with whom he comes in contact.  Before he even begins, I know that he'll spread his infectious joy to all.

His bus ride entertainment is covered by the strap he found the minute he got on the bus.  

I felt my chest tighten as the bright yellow bus pulled away with two of my boy's in it. Tears clogged my throat and pain knifed through me.  As I tried, unsuccessfully, to keep all of the emotion in check, I had to be honest with myself.  The pain that I felt was not about Moise going to a new school or being separated from Kruz.  It was about Laynee.

Laynee desperately wanted to ride the school bus.  Every morning, as our other five left for school, Laynee would dissolve into tears over being left behind by her siblings.  She pointed and reached and begged to get on the school bus.  Our beloved bus driver, Danny, would sometimes intercept her as she made a mad dash for it.  And every day, as I carried her back in the house, I would wipe her tears and promise her "pretty soon. You're not quite big enough, but pretty soon you can ride the yellow bus." Pretty soon was just a couple months away.  It was almost in our reach, but it never came.  I couldn't keep my promise.  Laynee never got to ride the yellow bus.

The deep pain that I felt this morning was a fresh wave of grief that collided and tangled with bittersweet emotion of back to school.  In the early hours of this crisp August morning, Kruz lived out Laynee's dream, the promise that I was never able to deliver to her. Even though I know that heaven is better than I can comprehend, I want her here today, waving at me from her school bus.  But since she's not, I hope there's a yellow bus in heaven.

God is good, all the time.

Saturday, August 15, 2015

Summer's End

"Summer's almost over" has been the back drop for everything I've done or thought this week. Summer's end, marked, for as long as I have memory, by the first day of school, looms before us, coming a day closer with every sunrise.

There's a bright yellow sign in the periphery of my mind.  It's flashing and warning:  CAUTION: BIG CHANGES AHEAD.  Brock, last child of my womb, is a senior in high school.  Moise is going to a new school, one which presents much newness and uncertainty.  A fact which guarantees a few bumps in the road.  Kruz, my baby, child of heart healing, is going to school.  Another bumpy guarantee. 

And my heart? It's working to prepare itself.  I remind myself, like a broken record (does anyone remember what a broken record sounds like?)  that change is good, that Moise and Kruz will be fine. No problem. God's got this. 

Meanwhile, we're sucking every last drop of fun from this summer.

We snuck in one last camping trip with friends.  I've always thought of camping as something that we did for our kids.  With kids it's a lot of work for mom and dad but they loved it so much and so many memories were made at the campground.  Now, with Kruz being the only little camper, we're finding that it's not work at all. I find myself asking "what's wrong?  Why is the refrigerator not stuffed full? Why are we not dragging umpteen bags around?  Why is the door not slamming eleventy hundred times? Why are we actually getting to sit on our big ol' Bass Pro camping chairs? It's marvelous and bittersweet.  While we enjoy the quiet, we miss telling Grant to "quit messing with the fire."  I miss squirting blobs of shampoo on four little heads and telling them to head for the shower.  I'm certain we'll adapt to these camping changes quite nicely. While the memories are the sweetest, I'm certainly not opposed to making memories of a different kind.

Baby doll gets drug all over the place, typically by the arm.  She is going to need many baths in her lifetime.  Here's to hoping her stuffed body can withstand the many washings.  I have my doubts. 

I've had the pleasure of spending extra time with my sweet nieces this summer.  When they're around, the place rings with the sweet sound of little girl voices once again.  Although this summer's temperatures, by comparison, have been mild, we've sought water every chance we could.

It's been several years since Moise has been in need of the typical back to school supplies but this year found us venturing back into the school supply aisles with Kruz's  list in hand. It was euphoric. There's so much color and excitement in those aisles.  I opened a box of crayons and wanted to cry over the sheer perfection and organization nestled inside that yellow and green box.  I hope Crayola never feels a need to change their box.  

I grabbed a box of markers and marveled over the reality that standard, primary colors are hard to come by.  What happened to red, green, yellow and blue? But then there they were, all of the primary colors carefully molded and unblemished in the oval slots of the water color paints.  Kruz didn't need a pencil bag but I grabbed a plastic one anyway, just to sniff it.  It smelled so schooly.  My mind took me back to my own school days and my annual resolve to be more organized.  I always knew, as I sat with all my crisp new school supplies spread out around me, that I would be  less messy.  I carefully penned my name... Karol Glueck.... as if there were a hundred other "Karol's" in my classroom, onto every item and determined that  I wouldn't doodle on all my notebooks this year.  It was a resolve that lasted all of two days.

Then I came upon the "Trapper Keeper." In our house, the excitement over being old enough to need a "trapper," was nearly palpable.  Our children searched those aisles painstakingly for just the right one. And once we found the right one?  The scritch of velcro being opened was all we heard for days, until they finally boarded the bus, trapper in hand and the world by the tail.  The trapper was a right of passage into middle school.

The quest for a backpack was an interesting one.  Kruz is not big.  At three years old, he measures on the growth chart of an eighteen month old.  Backpacks, apparently, are not typically made for eighteen month old.  I went store to store, my euphoria quickly morphing into irritation over the size of backpacks. "Why are they all so huge?!?!?!  Don't they know that there are little kids in the world who need a backpack?!?!?"  School supply shopping is only fun when you find what you need. A standard child sized pack nearly drug the ground and knocked him flat on his rear.  I finally found one that was a bit smaller, and in primary colors too.  But once I put it on him, this too seemed like a great big backpack fail.

Perhaps more concerning, even than the size of the bag, was Kruz's lack of interest in the bag itself.  He was far more interested in the straps.   This is going to be a problem. Straps are one of his quirky obsessions, which in many situations is a beautiful thing.  Waiting endlessly at a doctor's office?  No worries, we've got this. Just hand the boy a purse strap.  But in school this distraction will need to be reckoned with.  Bring out the strap eliminators!!!! He'll find straps in places they never knew existed.

But Grandma G saved the backpack day.  Exit primary color, strappy, too big backpack. Enter Spider Man.  It's just the right size.  It doesn't pull him over.  And there are no straps.  Oh......and it's Spider Man.  Enough said.

Come Wednesday morning, ready or not, I'll be sending three boys off to school.  Bring on the changes.

Until then, we've a few more mornings of long snuggles and we're not missing out on a single one.

Happy back to school days.

God is good, all the time.