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."

Dream Land

     "Momma will you rub my back until I fall asleep," I asked as she was about to leave the room.  Every night it was the same question, and never had she denied me the pacifying pleasure of her touch.  She turned out the light and returned to my side. The bed sunk slightly as she made herself comfortable.

     "Only until the count of one hundred," she said.  This was the rule.  I turned to lay flat on my belly.  She pushed the wisps of hair away from my face and kissed me gently.  The moisture on my cheek evaporated slowly, like a puddle on a sunny day.  The smell of her perfume wrapped around me keeping me warmer than the blanket she had tucked me in.  The visible corner of my mouth curled slowly into a smile.  "Close your eyes," she whispered gently. The sound of her voice tiptoed within my ears.  I pressed my eyes together, expressing an eagerness of the earning for her touch.  She straightened out my shirt, ridding it of all it's creases.  When everything was perfect, she placed the warmth of her hand upon my back.

     "One, two, three..." I relaxed my eyes.  The circles she made on my back were in perfect rhythm with her counting.  Her voice the sweetest symphony of lullaby.  As I began to fade into a world of slumber, her voice and touch faded too.  The higher the number, the further I traveled from reality.  I wanted nothing more than to take her with me, to hold her hand and run across the clouds, to slide down the biggest rainbow and land in a giant pot of gold.  I wanted to take her to a place where we could play all night without disruption, a world made of chocolate, where animals were our friends, and ate straight from our hands.  "98, 99, 100."  She spoke softly as to not disturb my journey.  "Meet you in Dream Land."

                                                               **************

    "Can you hold my hand Momma," she asked as she writhed slightly, obviously uncomfortable.

    "Sure sweetheart." I had spent the better half of our month in the hospital sleeping beside her.  She had been quite ill and wanted to be held and coddled.  When she wasn't having seizures or outbreaks of pain and nausea, she was simply fearing the time when those things would come again.  I wrapped my arms around her and pulled her tight to my body.  "Close your eyes baby girl."

     "I'm afraid," she said her bottom lip quivering, tears brimming, magnifying the flecks of stormy grey within her sky blue eyes.

    "Mommy is here, there is nothing to be afraid of."  A statement, I only wished could have been true.

    "What if when I go to sleep, I don't wake up again?" She looked me straight into my eyes, penetrating them deeply as if she was trying to read my thoughts.

    "What would make you think such..."

    "I heard what the doctor said this morning."  The tears that had built a barrier within her came flooding down all at once.  I pulled her tighter.  I wanted so desperately to protect her from all of this, to take it from her and put it on myself, but I knew I couldn't, because if I had been able to, I already would have.  We talked for a while about the unfortunate conversation she never should have heard.  We talked about how I wished I could erase it from her mind, so that she could go on being a kid and do kid things, without the fear of mortality, or anything else that does not belong to the mind of a child.  Unfortunately that would be the first of many moments that would take part of that privilege of childhood away and replace it with the untimely wisdom and understanding that this world is not always what we want it to be, what we hope it to be.

    "Do you want to meet in Dream Land," I asked, drying her eyes.  She looked up, gently sniffing, wiping her nose with her sleeve.

    "Where?"

    "It is a special place that we can only meet when we are asleep.  We have to pick a place, close our eyes and try real hard to imagine it.  It is very special and only few people know about it.  I used to meet my mother there when I was little, and maybe if you try real hard, we could meet there tonight?"  I brushed the freshly fallen hair from her damp eyes.  She looked stunned to not have known that such a place existed.

     "Can it be anything I like?"

     "Of course."

     "Can I bring others there," she asked scooching up slightly in her bed.

     "Only if they keep it secret of course."

     "Is there sickness there?"

     "No, of course not.  Only what you want, nothing else.  If something else tries to follow, you just tell it to go away, and it will have to listen, because it is your land." She smiled and lied back on the bed.  She liked the idea of being in charge, of not hurting, of not being sick.  She rolled in to snuggle as she often did as she was falling asleep.

     "Mommy?"

     "Yes, love," I said, as I rubbed the wrinkles out of the back of her shirt.

     "When I do go, you know, forever.  Can I stay there, in Dream Land, so you know where to find me?"  I pulled her in tighter, tears now filling my eyes.

     "Come on now love, lets go to Dream Land and see what adventures we can find."

     

A Letter to my Daughter

Dear Daughter,

How quickly these years have passed since you went from a whispered prayer, to a tender soul burrowed beneath my heart, to a small being tenderly emerging into this world taking your own first breaths. You were always quiet; observing, wide eyed, and unsure.  You never cried, cooed, or whimpered.  We had to learn the early you from only the fervent emotion that radiated from your eyes.  As the time passed on the silence of your demeanor created both a peaceful tenance, but also overwhelmed us at times; like any parent would desire, we needed some indication that you knew we were there. We needed to know we somehow stood out from the rest of the world that seemed to overwhelm you into silence.  Little did we know you were just measuring the world, calculating the perfect time to make yourself known; silently rehearsing for the opening night of your Broadway debut, a one act show starring you.

Finding your voice was a struggle, but when you did, boy you did.  We watched in a mirrored reflection of your own frustration as you discovered an audible shriek that was to define every expression you had. Your emotion filled eyes were the only help to us then too, like a beacon to your soul, a sure blessing from God, for without the light inside of them we would surely have been lost trying to find you.

I will never forget the day you discovered the words you had been absorbing from the moment you broke into this world.  With a courageous roar we watched the gates that held back the expression of your discoveries fall to the ground as you pressed your eyes together, accentuated your larger than life heart-shaped lips, and angrily shouted "bubbles," fearing that your Speech Pathologist would leave without letting you see them if you did not show her you could indeed use spoken language.  From that day forward we never had to fear again that you would reserve the words you kept locked away. Your quota for spoken words on a daily basis is now far above what I can keep track.

You love to ask us what we know and tell us what you have discovered.  Your speech is constantly overflowing with data and lessons that are both academically and spiritually infused.  When reminded that sometimes there are places in this world where it is best not to speak, you often tell me you only talk when it is most important and that there should be no such place where verbal sharing is inappropriate.

Even as your vocabulary grows to an unrecordable measure I find I can still reach you better through communicating with your eyes.  Perhaps it is because this is where I first found you all those years ago, or perhaps it is because, somewhere, lost behind all of the knowledge and theories your words so often speak, is something more important your soul has left to tell; something still lost inside looking to find it's way out.  In your quietest of moments is when I hear your eyes speak the loudest.  Your gaze cuts me like no other, sometimes painful, as if you are literally trying to etch the imprint of all your unspoken fears and desires into the depths of me.   Like putting together a jigsaw puzzle and being handed one piece at a time, so is the road map to your being.  I know in time I will find you there, one piece at a time, and when I do our souls will embrace for they have been together all along, from the very first whispered prayer to the moment you burrowed beneath my heart.

Your Eyes

Her head hung over a bucket.

She had felt fine most of the day, but you never know where the moment will bring you with a disease like mitochondrial disease.  Tonight, it brought her straight to the comforts of her bed grasping tightly to a bucket hoping for some relief from the sudden wave of nausea and stomach pain that had just come over her.

Her eyes began to water slightly, causing the surface of them to become glasslike; opening up like a window to the heart of her pain, but also mirroring what it was like to watch her be in it.  I tucked her hair gingerly behind her ear.  "How are you feeling?"

"Good." She writhed in her bed a little, wincing.

"Are you sure?"

She took a moment, swallowed hard and took a deep breath, "yes."

I rubbed her back smoothing out the wrinkles in her cotton shirt and again tucked the hair behind her ear that had slipped into her face.  Buying time while trying to choose my next set of words, I carefully adjusted her nasal cannula and fluffed her pillow.  "You know," I said, softly rubbing the top of her foot, "we can tell when you aren't well.  It is ok to admit how cruddy you feel.  No one is expecting you to be a superhero."

She looked up for a moment.  "How can you tell?"

"I can feel it in my heart, but I can also see it in your eyes."

She sighed gently.  After a few moments she lied down, keeping her bucket close to her side.  I pulled the covers up to her chin and gently kissed her forehead, readjusting all of the things I had already adjusted just one last time.  I turned out her light and walked slowly away.

"Mom?"

"Yes?" I whispered.

"That's how I can tell too, you know, how sick I am.  I can see it in your eyes."

Our Travels

A small pendant hangs around her neck...  

The image of St. Christopher molded into it's surface.  His back hunched over burdened by the weight of a small child he carries upon it. He treads the deep and dangerous waters that lie ahead with this small child in toe, trying his best to protect him, unaware of who he is. With each passing moment, each step, the child, who was said to be carrying the weight of the world on his shoulders, becomes heavier; the river turbulence becomes more powerful.  Legend has it the small child was Jesus.

The pendant captures my glance daily, the way it lays over her heart, the way she softly rubs her thumb over the top of it when she is deep in thought.  She has become quite attached to it, having received it, in a small jewelry box with a few of her late Great Grandmother's earthly possessions.  Why she chose this piece, I'm unsure, but the legend drew me in, just as the piece seems to have spoken to her. 

Though the weight we bear together is heavy, I will continue to walk with her upon my back, just as the legend of St. Christopher so boldly did carrying both our king and the weight of the world. For I know what we carry together can be survived, but bearing the weight of a world without her would surely sink me deep below the water's surface.

***

My child is not Jesus and the weight she carries is not that of the world that she made, but the weight of the world that was made for her. At times each step we take feels heavier, the waters ahead more treacherous.  I try each day to carry those burdens for her, but with progressive disease being her heavy weight, there is only so much I can physically lift from her.  

The bank of our river was unclear as we crossed into it.  As time has passed we become more and more aware there is no other side to our raging river. There is only time when the water we tread is still, allowing us to gasp for air, catch our breath, and times when it seems as though we will surely be swept away.

"Carry me safely to my destined place just as you carried Christ in your strong embrace."