Sunday, September 21, 2014

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.


    "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.


     "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."


Monday, September 15, 2014

Weathering the Storm

She laid back on my lap, shirtless and limp.  Her torso pressed against mine.  Her skin warm under my hands as I rest them on her soft baby skin, trying to keep her from slipping off my lap.  We'd been at the doctor's office for hours at an appointment we had anticipated for well over a year.  Here we were now sitting inside a small cold office, no idea what to expect, no idea what was quietly waiting for us inside pandora's box.

The doctor, a small elderly woman, silently examined every part of my sweet girl.  She looked at her in ways I had never seen anyone look at my child, overturning every piece and part of her until her body was memorized as deeply as the medical records that sat before us.  When she was satisfied with her assessment she stood up and walked across the room.  She faced the wall for a few moments again silent.  I was still unsure what to expect, but the moment was starting to build within me.  It had been clear over the first three years of our daughter's life that something was simply not allowing her body to do what bodies should naturally do, but all of our paths to hopeful answers had only led to dead ends and more questions. My expectation upon arrival was for only more of the same.

A few moments passed before she returned to where we sat.  She placed her hand upon my daughter's unclothed thigh and gave it a gentle pat.  "Here it was," I thought to myself.  Another specialist with no idea, just a patronizing pat and a lollipop for the little one.    Just as I was about to dress my sweet girl and pack up our diaper bag, she placed her hand on my shoulder.  She looked me in the eye, sending an instant chill down my spine.

"I think your daughter might be suffering from something called mitochondrial disease."  She said, her gaze still burning into my eyes.  I stared for a moment, unsure of what was going on, unsure of what to say, unsure what it was she was even saying.

"I'm sorry what?" I turned my sweet baby around to face me, pressing her cheek to my shoulder, as if protecting her from hearing the words "disease" could somehow stop her from having one.  She began to whimper slightly from the sudden change of atmosphere that now filled the room.

"Mitochondrial disease.  It is a metabolic disease.  It is quite complicated in nature, difficult to test for, but your daughter has a lot of symptoms of the type of progression and organ system dysfunction we tend to see.  We will want to start running some panels of labs, I will give you a letter for the emergency room and..."

"How sure are you that she has this?" I cut in.

She paused, taking a moment to think, quieting her voice.  "As sure as I can be without the testing."

My mind trailed off.  I didn't understand what any of this meant.  I had never heard of this disease, ever. The last time I had heard the word mitochondria was in biology class in high school and I was too busy passing notes back and forth with my boyfriend to even color the cell diagram in correctly. What could this thing even be? If I hadn't heard of it by now how bad could it possibly be?

"Mommy, go, now!" My sweet girl began arching her back trying with all her might now to break the tension and silence, to go back from where we once came.

"Hang on baby," I said adjusting her again on my lap.  I was trying so hard to formulate some kind of question, to reason with myself to say something that would put together my thoughts and make sense of this, but how do you know where to begin when you have no idea where you are even going?

"It's genetic." She said cutting the silence.  "It is passed with a twenty-five to fifty percent rate, depending on the inheritance type." The air got even thicker.  I still didn't know what we were dealing with, but I knew a few things.  I knew my daughter was struggling and quite a bit.  I knew her doctors were worried.  I knew that her body systems were getting stressed more and more as she got older and that she was picking up more and more systemic problems every year, and I knew this doctor was saying it could happen again.  Then it hit me where she was going with this, and her words hit me so hard the wind knocked clear out of me.  "You told our genetic counselor that you are expecting again, and that you are in your first trimester.  We don't like telling parents these types of things, but we can get a rush on some of her testing so that you and your husband can consider aborting if she does have it."

I couldn't breathe.  I put my hand on my stomach and opened my mouth.  I tried to make words and couldn't, the air falling short of my lips.  I pulled my daughter a little tighter as my heart began to beat faster.  Her words emotionally threatened not only the life of my unborn baby, but also my sweet girl, because it was at that very moment I realized just how serious this unknown disease must truly be.  For a doctor to even consider suggesting that as parents we question the ethics of possibly bringing another child into this world who may have the same disease, I knew we were facing possible devastation with not only one, but two children.

The answer would come later that year for our daughter.  She did in fact have mitochondrial disease, so does our son who was born just seven months after we heard those words leave the doctors lips.  It is every bit as devastating a disease as we could have possibly imagined, only more.

There was a lot that doctor could have explained to us that day, but she never could have told us the truth of it.  She never could have told us that we would spend so many sleepless nights holding them in hospital rooms wondering how many more birthdays they would get, and that we would be bellowing from the rooftops when we indeed got to celebrate again.  She never could have told us that we would spend months working tirelessly on developing skills that other children would learn naturally, only to watch them lose them again after simple illnesses.  She never could have told us that we would have an even more tremendous hope and joy of seeing them achieve them again, and the overwhelming fear that they wouldn't.  She never could have told us how we would learn to renegotiate every single priority, expectation, appreciation until we would find ourselves discovering unimaginable joy in just the feeling of our child's skin, and that we would look at everything they experience like they are seeing the Ocean for the first time.  She never could have told us the sorrow we would feel as our friend's children were laid to rest, as we watched them weep with empty arms and broken hearts.  She never could have told us the fear we would have knowing that one day this beast would also likely claim the lives of our children. I suppose she could have told us, but we never would have understood.

Mitochondrial disease is a constant weathering of the storm.  It is roaring winds and weeping waters. It has a cruel and destructive path.  It has been dark and raining for far too long.  We are waiting for a ray of light, a glimpse of a rainbow, the sun peeking from behind the clouds.  We are standing here with an umbrella made of prayers and only hope to keep us floating, waiting desperately on a cure.

Thursday, September 4, 2014


She took his hand gently and whispered, "come with me," tugging him a little, his feet unmoving.

"Don't want to," he replied shyly, nervous-like, feet shifting, staring at the ground.

"Come on, don't be scared. There is nothing out there. Sissy is with you." She gave his chubby little hand a gentle tug again.

"Don't want to," he repeated.

She looked intensly into his big grey eyes. They were as deep as the sea and filled to the brim with emotion. Scanning back and forth from one eye to the other she tried to read him like a book. "Really buddy it will be just fine, I will hold your hand the whole time. I'm not going anywhere."

He paused and thought for a moment. He stared at the ground and waved his foot back and forth in the dry straw like grass. "Sissy stay?"


"Sissy stay, forever?"

She paused suddenly as if the word forever had struck her somehow. She stared over his head into the distance, as he stared into her eyes waiting for the reassurance he so desperately needed. When he could no longer take the time that was passing, he gave her shirt a gentle tug to remind her that he was there. She looked down at him and smiled. "Yes, sissy will always be with you, no matter what."

He smiled and reached out his hand. She tenderly took it. Together they walked off, hand in hand. with a new found reassurance that no matter what they would always have each other.