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.

The Rhythm of Life

I watched her today as she held the jump rope, swung it over her head, jumped, and got herself tangled before her feet even hit the ground again.  I watched her as she repeated this process over and over without wavering.  She took a deep breath and with careful calculation tried her best to make even the smallest change that could bring about the positive outcome she was looking to achieve; that one small move that would correct her rhythm and make all her work worth it.  She never did jump over the rope and yet she succeeded still.

She has learned over time that life is not a black and white measure of one's success.   She has had to learn the hard way that we don't always physically see the equal outcomes of getting from something what you put into something, but with that she has also learned that mentally and emotionally she gets what she gives, and so she gives it her all.  She tries with all her might in everything she does, every single ounce of everything she has is poured into her cup of life.

When she was finished jumping rope she looked at me and smiled.

"You will get it.  Just keep practicing." I said gently.

"I know," she panted as she wiped the sweat from her brow.  "It will be quite easy really, I just have to get my feet off the ground at the right time."

"Such is life," I thought to myself.  The only danger is letting fear keep your feet planted on the ground.  We all just need to find our rhythm.

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."

Her Everything

He will do anything to make her laugh.  A smile simply will not do.  Forget the embarrassment that a child his age typically feels just walking around in their own skin, he does not care about that.  He is willing to; strike a pose, make a voice, contort his face, put on a show, going to great lengths to change her mood.  All he cares about is knowing she is happy, knowing whatever he is doing has put that "can't catch your breath" roar of laughter inside of her.  That is the kind of brother he is.

Their happiness is deeply intertwined within each other, as if it physically pains one to see the other sad.  In his world a smile is always a choice.  In her world sometimes a smile is just too difficult to muster up.  At times he has physically taken his hands and turned her mouth into a smile.  This in turn has created a real true smile, problem solved.

Every night he kisses her forehead in her sleep.  Somehow she knows it is him, a smile again.  Nobody buys more time with smiles like he does.  No one else lights up her face like he does.  If we could put some of his love in a bottle for her, we would surely have found the cure for any sadness this life could create.

He is her big brother, he is her everything.

My Kind of Moment

I love moments in life that are filled with beauty and simplicity.  The moments that break you from the clutter of worries in your mind and onto the purity of the immediacy that surrounds you. The kind that temporarily erase the "could have beens" and "what ifs" and solely let you see what is right in front of you.

***

Our oldest son found a praying mantis.  As the little ones all gathered to see the small creature who had been spied, trying it's best to blend in with the earth, our youngest son could barely contain himself.  He stood behind his siblings, trying his best to find the perfect place to get a peek at their newest friend.  "Let me hold hims, let me hold hims!"

"Just a minute, buddy," our oldest said quietly still carefully observing it himself.  Our youngest's excitement grew by the moment.  He was wriggling and writhing trying his best to not explode, not yet having earned his patience badge at only three years old.  He kept rubbing his own hands as if he was lathering them with soap, clearly trying to keep his fidgeting fingers from grabbing without permission.  For a second he would quiet, and then he would explode again not being able to contain it any longer.

"Let me see hims! Let me hold hims!"

"Just a minute." Our oldest tried again, knowing he could only put off the inevitable for so long.

"I need hims!" He grabbed his cheeks and squeezed dragging his eyes down exposing the pink of his inner eyelids. Clearly the pain of waiting had become far too much.  I worried that a creature as small as our new friend could live through such an excited, emotional handling, from a three year old who had been made to wait far too long; a three year old who is still mastering the fine art of "gentle touches."  I looked over at him.  He had this poor; melted cheeked, slumped shoulder, shoe scuffing, sad lump of a little boy look.  He wanted nothing more than to play with the magical creature that was lurking in our back yard.

"Let him see it," I said softly.  His face instantly shot up.  His excitement meter filled back to the brim and maybe over.  He jumped for joy, clapped, and jumped again.

"My turn?"

"Your turn." I winced as his big brother handed him the tiny creature.  I said a small prayer that it would not be it's last moments on Earth, premature death at the hand of a little boy who wanted nothing more than to just love it too much.  As it crawled into the palm of his hand the world stood as still as his ever moving baby hands had now found themselves.  He didn't make a noise, he didn't move his feet, he just stared.  Just him and what was unfolding right in front of him, tranquility, simplicity, perfection.

My kind of moment.

Forever Friends

She sat quietly enjoying a book.  He stood closely looking on, nudging her every few seconds, a constant reminder of his presence.  She found it quite easy to ignore him at first, having nearly four years of experience, but as time passed and his persistence only got stronger, she found it best to just give in.

She gently shifted over and motioned for him to join her.  He threw his leg up onto the chair as if he was climbing an obstacle course plopping heavily beside her.  As she began to read aloud he became entranced, enthralled, with every passing word that left her lips.  He shifted his gaze slightly from time to time only to see if the pictures on the pages matched the words she magically lifted from them, each time they did a little giggle would softly echo from deep inside him.

As the story drew on their connection drew closer, so intertwined that even their feet would adjust ever so slightly, at the same times, in the same manner.  When the story was finished, she closed the book.  She looked at her little brother, and he at her.  Their faces now told more of a story than the fairy tale she had read to him.

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."