Our Little Miracle

We loved you long before we ever knew you.  From those early wishes and hopes for what your untold future would be, to the first beats of your heart and kicks of your feet.  We made plans for you, aspiring deeply to paint a picture hand-over-hand of the future you would have, one as beautiful as the love we felt for you.

We read to you every night as you nestled deep inside my womb, uncertain if you could even hear us, but believing that you could.  As we lifted the words off the page we let them be your story, written by another, but told by our hearts.  We allowed ourselves to think you owned them as if they were meant for you.

We engraved those words upon your baby blanket, so that when you made your entrance into this world we could wrap you in their warmth and familiarity.   We folded you tightly like a package, the visible corner underneath your Heaven-made face read;

           "Gaze at the stars,

             and watch the moon rise.

            Each day there are miracles,

            in front of our eyes.

            Dance to the music,

            and sing like the birds.

            Let stories and books,

            bring the magic of words.

            Enjoy friendship and laughter,

           your whole life through,

            and the love that we feel,

            as we welcome you.

        (My Little Miracle J. Beck and J, Croydon)

          We love you so much!
          Love,
          Mommy and Daddy"

We watched you grow and it was ever clear you marched to the beat of your own drummer.  You did things your own way, in your own time, and within your own expectations.  There was never a dull moment within your presence, lighting up each room you entered like the Fourth of July, all eyes on you, every one else taking a back seat.  There were days we feared you would fly so high you would never come back down.

We worried when they said that the you that was so special and yet so hard to "read" had autism. What would that mean for all the things we wished for you? Would all of our dreams for you now be just out of reach enough to make us ache?

We watch you grow now with this invisible label you wear upon your sleeve, always shedding your layers to reveal what is underneath, the raw, take-all-or-take-nothing you.  You are this amazing force inside a pint sized body, a constant tangle of knots we are trying to undo.  You refuse to be unwound.
 
We have overflowed with joy as you have checked off each of the dreams we had for you one by one without even knowing it.  You just love looking at the stars.  You take in everything like it is art, the sky to you is like a giant canvas, the stars small specks of paint.  Music moves you, your body constantly moving to a silent symphony that plays only for you.  You have loved books since you could hold one.  The first thing we learned you loved to do was count words and letters.  When you were four years old you told me there were twelve-thousand and fifty-two Z's in Daddy's chapter book.  You were so proud of yourself.  Words are definitely your magic, and boy do you love to laugh.  It echoes through our home and down the street.  It is impossible not to laugh with you when you are laughing.

We know you will always be uniquely you and that is just fine.  You have paved the way, so just continue to lead us behind you sweet love.  We didn't even know what we wanted until we got it.  It is funny how life works out that way.  Today I realized my heart couldn't be any more full when you approached me to give me a card you had made.  You told me that you had been reading your baby blanket every day and that you wanted to write me back a letter to tell me how you felt.  Before I even read it I felt my emotions take away my words, no matter what your feelings were, just knowing you were willing and able to share them with me was more than I could ask for.  What it said was far more than anything I could have expected:

"Dear Mommy,

I am really glad that you are my Mommy.

I love you so so much.

No matter where you are I will always love you.

Love,

Me"

Most importantly of all the things we wished for you, we know you feel loved. You my love are our "little miracle."

I Will See You When the Moon Goes Down and the Sun Comes Up

Every night since our son found the ability to speak to us he refused to let us leave his room with “goodnight, see you tomorrow.” He would swiftly shout back in his small sweet voice “no goodnight, not tomorrow.” Though to most it would seem like a defiant move to reject the idea of going to sleep that was not his reason, not one bit, not at all.

He simply needed the reassurance that closing his eyes meant nothing in his world would change.

I used to need that reassurance as well. For years our world was rocky, only barely remaining on it’s axis.  Our daughter and son’s health were in a near constant battle to stay stable keeping us in a revolving door of inpatient stays at the hospital. As the children continued to decline, so did my ability to stay faithful that they would stay with us long enough to see a cure for mitochondrial disease. Things have become a little calmer around here, but I would be lying if I said there were not days where that deep rooted fear did not climb to the surface of my mind. 

There were days he would wake up and find me gone. I hated that for him. So many; unexpected admissions with his sister, late night ambulance rides, middle of the night kisses goodbye, with no way to explain to a small-nonverbal-child that Mommy was coming back as soon as she could, wishing with all her heart that she could somehow be in two places at once. It was traumatizing for us both, the near constant separation that went on for well over a year. We all tried our best during those arduous times, but sometimes our best just wasn't good enough no matter how hard we tried. Only God knows how we came through, suffering only minimal scarring, on the other side. 

Not a day goes by where I do not count my blessings for that fact.

***********

I crawled into his bed, he lay on his side fidgeting with his flashlight. Placing his small hand in front of the light watching to see where it would fall, then glaring with fascination as it illuminated his hand when he interrupted the beam. I straightened out his covers and placed my head on his pillow. He rolled over turning off his flashlight, looking through me with his glassy grey eyes. 

“Are you sleepy yet?” I asked running my hands through his moppy-sand-colored curls. 

He smirked slightly curving only one side of his mouth, shrinking his eyes so that only his pupils were showing.  His thick eyelashes like blinds covering the small opening of his eye. “No, I not sleepy.”

“I think you are.” I stroked his baby soft cheek, his skin like satin.

He rolled over facing his top bunk, clicking his flashlight on and off, the light creating a perfect circle on the dull wood surface above. “Mommy, where does the moon go when the sun comes up?”

I laid still for a moment, unsure of what to think.  I was surprised by his sudden ability to formulate a question, the advanced thought process it must have taken, things he had struggled with since he had learned to speak. How long had he been thinking of this?

“Mommy?” He rolled back over pressing his small button nose to mine, so close I could smell his sweet baby breath.

“Well,” I paused for a moment to think “it is still there I guess, you just can’t really see it when the sun comes up.”

He sat up quickly, pulling the covers off of both of us, grappling for his flashlight, again shining it on the wall and then covering it with his hand, staring at it intently. “When the sun comes up the moon goes away? When the moon comes back the sun goes away?”

“Yes, but they don't really go away buddy. They are always there even when you can't see them.  Sometimes, when the sun is up, and you look really hard, you can still see the moon.” I sat up next to him gently taking the flashlight. I placed my hand on top of his letting the light shine through both of our fingers. He looked up and smiled, seeming to understand.

I finished tucking him in and started for his door. “Goodnight, sweet guy, Mommy will see you tomorrow.”

“No, no tomorrow, no goodnight.” He shot up and pouted.

“Mommy already tucked you in little man, it is time for me to go.” I turned around to leave.

“Say, I will see you when the moon goes down and the sun comes up, say that.” He was near tears, his chest rising and falling quickly, his face turning blotchy and red.

It was then that it hit me, he needed to know that just like the moon I wouldn't really go away, and just like the sun I would always come back. I walked back in and sat on the edge of his bed, placing my hand on his back.  He laid down, his mouth still in a downward curl.  His eyes turned towards his pillow. “I will see you when the moon goes down and the sun comes up.” 

He closed his eyes, smiling, and gently drifted off to sleep.

Desires of the Heart

"You can have anything of his you would like," my grandmother said as we stood in the doorway of her bedroom.  It had been a month since my grandfather had passed away and yet I still expected him to be there.  Everything looked the same.  Not even the air had been disturbed and still, it was disturbing.

I sat down on my grandfather's side of the bed.  The covers were pulled up and tucked under his pillow, crisp, military style.  It was as if the bed had never been lived in, just the way they liked to keep it.  His reading glasses were carefully atop of the newspaper he had been reading the night of his stroke.  I shivered slightly, feeling the lump within my throat beginning to develop.  My grandmother sat next to me, placing her hand on my lap.

"Go ahead," she repeated.

I closed my eyes and tried to imagine the things that I would want of his.  The things I wanted, I knew I could never have.  I wanted the last can of beer that ever touched his lips, the motor oil that stained all of his undershirts.  I wanted to have the first robin that he saw every spring, the one that told him summer was soon to come.  I wanted the handprints of flour he left on his navy blue work pants, every time he baked.  I wanted the last pink chocolate he had eaten and the box it came in.  I wanted the very last breath he took on this side of Heaven.  I wanted him.

I cried the same single tear that I wiped off my grandfather's cheek the day he finally let go, letting it linger, a reflection of the pain that resonated so deep inside of me.

"Don't cry sweetheart." She kissed the top of my head.

I leaned into her, absorbing the warmth of her I so desperately needed to feel.  "This is so hard. There is so much of him that I want, but if I can't have him I am not sure any of it means anything."

"It means everything," she said softly.  "There is a little piece of him in everything still here.  There is not one thing in this room that does not make me think of him." Her strong soothing voice began to waiver.  "You just have to find the thing that speaks to you in that way." She gave me a gentle squeeze before leaving the room, shutting the door behind her.

I thought deeply about what she said.  I got up slowly and walked to his dresser.  With conviction I opened his top drawer.  Carefully folded in the corner was a stack of white-cotton handkerchiefs.  Right away I knew this was my heart's prize.  I took one out and shut the drawer.  I rubbed it against my cheek.  I wanted to feel what he felt everytime he touched his "hanky" to his skin.  It brushed me softly, like a feather in the wind.

I thought about how he always had one with him, accompanying him in his back pocket.  I thought about how it contained every bead of sweat from his forehead, the echo of all the hard work he had done for his family.  Not only was it a part of him, but he was a part of it.

In my hands was the link between; him and I, now and than, life and death.