Then and Now . . .

I scrapbooked this photo along with a message for my Luke back in 2009.  As I read it, I couldn’t help but notice how similar my feelings still are, seven years later.  The poem was written today.  The caption I wrote when the photo was taken, back in 2009.  The feelings behind both are written in my heart forever.

Luke Easter
May 7, 2009  I love this picture of you because it looks like you are asking for help with your eyes, and that is how I feel you communicate with me.  You are my beautiful perfect little boy.  You may have stopped speaking words, but your eyes still speak for you.  It has been hard for me to accept that you might have special needs, but I know that our Heavenly Father loves you so much, and He is helping us to find ways to teach you.  You have already made so much progress in the month since we discovered that you may be autistic.  We changed your diet, and started really trying to talk with you and help you learn to talk again.  Today, you brought me your shoes and said, “Go . . . Gaaas!”  We went to Grandma’s  It is wonderful to hear you speak words, and I pray that you will remember all the words that you learn.  They are so beautiful to hear!  It’s funny that sometimes we complain about how much our kids talk, but I would give anything to hear you talk to me and tell me what you are feeling and what you need.  I love playing with you and getting to know you other ways though.  And, no matter what happens, I will LOVE you Forever!

March 15, 2016

Sweetest baby boy,
Look up to me innocently.
Your words are taken ‘way from me.
Your eyes, now window to your heart.

Dearest baby boy.
I long to hear, “I love you, too.”
Sweet words, in voice, now gone to you.
But eyes can speak for you, in part.

Where’s the boy I dreamed you’d be?
Where’s the love you have for me?
Give me eyes, dear Lord, that I might see
My tender baby boy.

Gentle baby boy,
Soft hands that once reached out to me,
Spoke words of where you want to be,
Now speak a story undefined.

Oh, my baby boy,
The pain you feel inside you grows.
Those hands now speak in angry blows –
Raw emotions, unrefined.

Where’s the boy I dreamed you’d be?
Where’s the love you have for me?
Give me hands, dear Lord, that I may touch
Little boy, I love so much.

 

 

 

 

 

 

 

The Haunting

The fiery autumn leaves and cool crisp air ignite a conflict of emotions.  Joy and wonder with fear and frustration fill the kettle of my heart to overflowing.  My bubbling desire to relive the happy days of childhood through the smiles and laughter of my children is tempered by the constant threat of explosion to an unfamiliar playing field where the rules are written in a language understood only by one and subject to change according to the whims of emotion.  A world where tradition has no place and restrictions of social propriety give way to impulses with the ease of a spider’s silken thread to the warrior’s blade.

9942[1]For his own protection, we vainly attempt to restrict his exposure to the increasing presence of an enemy that forever taunts him by its simple existence.  The carefree days of innocent trick-or-treating followed by hours of wheeling and dealing with for the best candies are a thing of the past.  The days of stealth parenting have arrived.  We strategically plan our pathways through the school, the store, even the house.  An edict has been officially declared: The party found guilty of exposing our warrior to the enemy, or even the remains of the enemy, will be sentenced to tending to the warrior’s recovery for whatever period of time necessary.

8726[1]
Dressing up is one part of Halloween that I do love. Here he is clowning around with his friend, Kiana. He just loves her and will do lots of fun things with her that Mom just doesn’t have the patience to try.
A light sentence it may seem to the untrained, unexposed mind.  But you, my dear friend, have likely not experienced the agony of caring for a warrior unable to control even the most basic impulses.  Emotions flicker like a 2 year-old who just discovered the function of a light switch. Anger and rage launch anything in his path into flight; then, heart-breaking tears of sadness well up in his innocent blue eyes; just as quickly, frustration takes hold in the form of a butcher knife carving in the wall.  Depending on the degree of enemy exposure, the emotional control may malfunction for days to weeks. And that is not the worst punishment inflicted by the enemy.  Amid the physical and emotional storm, our warrior will exhibit constant, gut-wrenching flatulence.  Yes, it is possible to experience a week-long fart.  And, believe me, it is not a pretty picture for any party involved.

And so it is we prepare for battle, armed with nothing more than dodging strategies and potentially lethal threats.  Let the NIGHTMARES (uh, I mean Holidays) BEGIN!!

Rose Colored Glasses & Stained Glass Windows

When we become parents, we see our sweet babies through rose-colored glasses.  So perfect, so innocent, so full of potential.  Their world is happy and welcoming.   Of course, we know that everything will not always be rosy and perfect.  As they grow, those rose-colored glasses crack, allowing the light of reality to filter in.  Although surrounded individually by outlines of blackness, the colors of life emerge in stunning variety and contrast.  The vision of their reality develops slowly, one color at a time, one failure, one success, one joy and one sorrow.  As they grow, we have the unique and blessed opportunity to watch the picture of their lives morph and become ever more detailed and perfect, until one day we see the whole picture.  The beauty of a life story completed in a stained glass window.  No two ever the same, but no one more beautiful than the other.

When Luke was born, we were like every other pair of loving, doting parents.  We sported those rose glasses with the best of them.  We knew from the get go he would be a fighter.  He battled back from trauma with amazing tenacity of spirit.  And our glasses became all the thicker for it.  Of course, we also knew that his life must be colored with experience and expected to see cracks in the glass as he grew.  But God had in mind a different method for creating Luke’s window.

Our rose colored glasses were shattered in one fail swoop, broken into shards of brilliant color, leaving only a background of blackness to build upon.   Those colors are no less capable of creating a beautiful window of life, but lack the outlines to guide their placement.  And so, by trial and error, one shard at a time, we help him piece together his view.  Sometimes the fit is easy, but most often it is not.  The process is filled with blood, sweat and tears.  It is a painfully slow and often random placement that lacks vision for our limited capacity to see.   Though difficult to maintain, we are given fleeting glimpses of the stunning vista being created by his life and sustained by the ever more beautiful window he is creating in ours.

My Boy

My Boy
Flaps his arms,
Bites his hands,
Bangs fists against his ears.
I don’t know why.

My Boy
Puts boots in the oven,
Cars in the microwave,
Poor kitties in the grill.
I don’t know why.

My Boy
Belts random songs,
Screams crazy noises,
Cares nothing for timing.
I don’t know why.

My Boy
Hoards orange gum.
Runs naked in the snow.
Licks metal trash cans.
I don’t know why.

My Boy
Laughs at my face,
Screeches with joy
When he sees my tears fall.
I don’t know why.

Then My Boy
Tugs on my hands,
To say, “Please, come with me.”
He snuggles up tight.
I know why.

God
Sent me My Boy.
I know why.