Embracing our Path to Homeschooling

Our daughter started off her kindergarten year just like every other eager five year old.  She counted down the days until she could get her oh so grown self onto the bus, make new friends, meet her very first teacher, learn to read, and gain that little bit of fly-from-the-nest independence that many children desperately urn for by their fifth birthday.  Sadly, due to her declining health, she could not have all her heart's desires, not in the way most children her age could at least.

We tried our best to make it work.  Though it was not the picture she had imagined from witnessing so many before her enjoy the simple pleasures of attending elementary school, we did all we could to assure that she was able to have as many of the same experiences as possible.  There were still some unavoidable differences; she got dropped off and picked up each morning/afternoon curbside so that we could carefully unload her wheelchair to be sure she had the energy to make it through the day, we had to hire a private nurse to attend with her so that she could manage her vast medical equipment and health care needs, her backpack contained more medical supplies than books, and countless other subtle to large differences that set her apart from the typical kindergartener.  Even with a special plan in place to help our daughter succeed educationally despite the effects of her mitochondrial disease, our local elementary school only had the pleasure of knowing our daughter for two months before those options were no longer enough to maintain proper education in a safe environment for her.   She simply became too sick to attend school.

At that point it was clear the only choice for her was to be homeschooled, so that is the choice we had to make.

The benefits have been clear, but it has been a very difficult road to acceptance.  Homeschooling our daughter was not something that had ever crossed our radar.  Not only had my husband and I both gone through the public school system to achieve our educations, my husband also spent years obtaining a postgraduate degree so that he could teach within the public schools.  It was very far outside the boundaries of our comfort zone, and something that we just had never chosen to put much thought into.  We had no problem with the concept of homeschooling itself or others who had chosen it as their children's educational path, it was just not something we expected, and because it was not something our daughter initially understood or wanted for herself it made it all the harder to embrace.

There were a lot of days in the beginning that made the choice we came to even harder to accept. When too many days would pass where I did not have her next to me wide eyed and ready to learn it made me feel like I was failing her in some way.   Though I knew that it was her body that was failing to support her and not me, I often lacked the courage to assure myself I was good enough to make it work.  I eventually realized that was my main fear when it came to the decision of homeschooling all along; feeling solely responsible for the possible downfall or success of our daughter's education.  We would no longer be the supportive educational role, but the single players in such an important part of our daughter's life, and while that might be some family's reason for choosing to homeschool, that was the one thing that was keeping me from being able to fully embracing it, fear.

Our little girl is now in third grade.  The decision we made, with the gentle guidance of our daughter's physicians, to teach her at home was one of the hardest we have had to make for her.  What has made it easier over the years is seeing all of the; educational, physical, and emotional benefits unfold for her as a result of it. She has made academic progress we were unable to attain while she was simply too exhausted in a classroom setting with teachers who were unable to give her that one on one attention she needed to learn. While I had no original desires to become a teacher, I had to, for her.  It has been both an exhausting and very rewarding journey to say the least.

I will admit there are days when I still grieve over what feels, at times, like the loss of a dream. The ebbs and flows of emotion are like waves upon the shore; sometimes silent and gentle, other times roaring loudly and knocking me clear off of my feet.  It often comes on strongest when she is too sick to homeschool. She will sleep the day away curled up in a ball; her curriculum opened and ready, untouched on my desktop.  I never know what kind of day it will be, always hopeful we will be able to complete another necessary day of learning.  There are days where I find myself reading chapter books out loud from the foot of her bed, stroking her delicate skin, hoping that maybe, just maybe she can hear my words and process even the smallest bit from her much needed sleep. Sometimes I question if I am really doing that for her, or for my own reassurance that we are doing all we can.

Today as I sat there again at the foot of her bed,  reading chapters to her softly drawn eyelids I paused a moment just to take her in.  Before I could even begin to start questioning myself, or our choices I gave her hand a gentle squeeze.  I know we are doing the best we can, and I know we are doing right by her.  The little girl who struggled to recognize the letters in her own name, can now read, she can write, and though she had the unfortunate circumstance of inheriting her grandmother's math phobia, I know we will get through that together too.  When you look at where we came from and where we are now I know we are already responsible for her success, together.

Just like Me

"I hope you have one just like you," my mother yelled as I stomped off slamming my door behind me. 

"Me too," I shouted back, sliding my back down the closed door, placing my hands over my tear stained face.  "Maybe then I will have someone to talk to who actually makes sense!" 

The echoes of her devious laughter bellowed down the hallway and off every inch of my mind.  At eight years old, I could not even begin to imagine what could possibly be so funny about that.   

*****

 

"Get back in bed, Chloe," I said without having to look up to see who the small footsteps coming down the stairs belonged to.

"But, my tummy hurts, Mommy."  She peeked her head around the corner flashing her tremendously large grey eyes.  Her lips pressed gently out into an over exaggerated pout.  It was enough to melt anyone's heart immediately, if only I had not seen it a million times before.

"You have already had; a sip of water, an extra hug, five more minutes, snuggles, and your tummy medicine, there is nothing else I can do.  You need to go to sleep."

 

Hysterical sobs began to flood the staircase as she threw herself to the floor.  "But I can't sleep when my tummy hurts, and my room is too dark, and my blankie just isn't warm enough, and and and..."

"That is enough, now go to bed!"

The sounds of her wails grew louder as she pounded up the stairs and slammed her door.  "You just don't love me, that's all!"

I leaned back on the couch, sighing deeply.  My body molding into the cushion below.  Every cell in my body was exhausted to the bone.  As I tried to mentally recuperate from the emotional toils of the past twelve hours the sounds of satisfied snickering came from the right side of the room.  I turned my head to see my father, who was visiting at the time, grinning from ear to ear glaring at me with a crazed look in his eyes, completely satisfied.

"She is just like you, you know."  He leaned back, placing his hands behind his head, enjoying the relaxation I was trying to accomplish.

"She is not.  I was no where near that difficult as a child.  Sure, I had my moments, but I," who was I trying to kid? The more I tried to talk myself out of believing that I had been anything like my daughter, the more I realized she was me, I was her.  As the light bulb went off my father's smile grew even wider, but it hit a sore spot with me somehow, not because there was anything wrong with her, but because I realized I had broken a promise that I had made to myself all those years ago.  I had not tried to make her life any easier than my parents had made mine.  I felt that I was failing her in every way I had promised I wouldn't when my mother cursedly blessed me, all those years ago, with a child just like me.   

 

The thing is the little girl who promised to understand and make easy the life of her future child knew nothing about being a parent.  Eight year olds know a lot about how to be good friends, but know very little about the vast responsibility and time it takes to enrich and shape the life of another person.  I was not looking to become my friends with my little girl, I needed to be her mother, whether or not she was a "gift" bestowed upon me to mirror my own personality. 

There were things I could do for her though.  I could more readily help her find her strengths and teach her to use her weaknesses to her advantage.  I could teach her how to use that pint sized emotional bomb of a personality for good instead of the manipulative road I took with it for many years.  I could remind myself to let her be quirky, because as painful as that awkwardness can be to watch, it doesn't last forever.   I could listen to her talk until my ears bleed, knowing how much she needs to just get her thoughts out of her head.  I could gently lead her to the water time and time again knowing it might be ages before she is comfortable enough to drink from it.  I could cut her sandwiches into funny shapes and play her songs on my guitar knowing those will likely be among her favorite memories when she grows up.  I could give her slack when she makes mistakes knowing she probably already feels way worse about them than I could ever make her feel with a guilt trip.  I could brush her hair, count her freckles, and remind her that every single day I love her more than the day before, so much so that when we touch my heart feels as though it might explode. 

 

Of course given all of those things, the little girl who is just like me, would most likely grow up to be the mother just like me.  I know, because I had parents who did things just like that.  Although I swore I would never say this, I hope when she grows up, she is blessed with a daughter just like her.



 

He Was Supposed to Play Football

Our youngest son was placed on continuous oxygen at five months old after struggling with a difficult respiratory infection that he just could not bounce back from.  What was supposed to be a treatment that remained within the confines of the hospital ended up following us home.  Weeks turned into months as we were promised he just needed a bit more time to recover.  The tiny cannula that nested inside of his button nose was a constant reminder that the life we had just brought into this world, our solid healthy looking baby boy, was far more fragile than we had thought.

Those weeks that became months soon became a year and as we met more hospitalizations and appointments with his doctors it became more and more clear that his little lungs were weaker than we had first hoped.  It became more clear that the life we had anticipated for him was going to be far from anything we could have considered fair.

As his first birthday approached and after all of my expectations for his quick healing had passed, I pointedly asked, during a rather difficult appointment, if they thought our son would ever be able to thrive off of his oxygen.  His doctor looked at me, patted my leg, and said "not all little boys are made to play football mom." The words that were meant to soothingly skirt around the truth struck me sharp like a dagger.  I was quiet for the rest of the appointment.  A large lump stood in my throat working as a flood gate to hold back the tears.  The drive home was long and somber, the humming of his oxygen concentrator drowning out all of my rational emotional thought.

He was supposed to play football.

I didn't speak about it for days.  In fact I barely spoke for days.  I was lost within my own thoughts, ones that I could barely sort out.  I should have known better; nothing in this life is guaranteed.  We already had to learn through our daughter's illness just how fragile life can be.  Certainly in the grand scheme of things sports were not important.  Perhaps sports wouldn't even be his thing anyway, maybe he would be the next stand up comedian, or an artist.  I was obviously being silly.

Then the guilt started to eat away at me for having these thoughts at all.  Shouldn't I just be grateful that I was blessed to have him?  What kind of mother worries about a future of sports when her son can barely even breathe and eat at the same time? I knew every single moment with him was a gift and here I was wasting that time worrying about something that simply should not have mattered. My mind was a battlefield, and I was quickly losing ground.

When I finally could not stand the sound of my own internal bashing anymore I picked up the phone. I dialed one of the only people I knew who could listen to me try and spit out the emotional wrecking ball that banged around somewhere between my two ears.  Before my dear friend could even say hello, I broke down into a sob that only too much coffee and days inside my head could buy me.  Quickly and without regard for what she might be doing I blurted out "he was supposed to play football!"  It took a few moments and stifled sobs for me to realize the other end of the phone was uncomfortably quiet.  "Hello," I sniffed."

"You know this isn't about football," she said, in pointed school teacher voice.

"What?"

"This whole thing.  It isn't about football, or any other sport.  You already know that.  It is about you grieving over the life you thought he would have and fearing the outcome of his future, and that's ok. Nobody anticipates that they are going to give birth to a child that is sick, it is ok to be sad about that. It is ok to grieve for the things you thought he would have.  That is only natural.  Take your moment, your moments, trust me there will be more, own them, and move on."

She was right, in every way really, it was not about football.  I was grieving for him, the baby who had a medical supply bag instead of a diaper bag, who had an apnea monitor instead of a baby monitor, the baby who had more medical supplies and wires than binkies and bottles, and the future that had become so unclear. It was about the loss of a dream.  It was about my concern over his ability to thrive in a world that he did not seem compatible with, and the doctors who could not fix him.  It was a love so strong my heart could literally explode, and the fear of what might happen to me, if something happened to him.


Years have passed since that dreary day and our son has grown into an amazing four year old boy.  His lungs still stink at being lungs, his mitochondrial disease has made sure of that, but he has found his pace in this world.  Today he grabbed a football and my heartstrings as he asked me and his big brother to go out and play.  Memories I had hidden deep inside bubbled up to the surface as I watched my rosey cheeked boy wobble around with a wide eyed grin on his face trying to play keep away from his brother, happily failing, as they both plummeted to the ground.  His laughter echoing in my ears still now hours after he has been tucked into bed for the night.

You see none of this was about football, not even a little bit, but watching him today, having that moment just filled me with so much joy and hope.  It reminded me that his life was never ours to plan from the start, but right now I have faith that that's okay.

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.

A Letter to my Son

Dear Son,

You came into this world content and aware, as if you were armed with a secret we did not know. I think back to the first moments of your arrival and the weeks that followed and often wonder if this somehow is the truth.  You came out so calm, peaceful, eyes glaring into mine, as if you knew exactly who it was you were looking for.  You took right to the breast as if you had done it before, as if this world was not new to you at all.  It was almost as if you knew I needed those moments of peace, those days of normalcy, instances of total perfection, before the truth about your life would rapidly be revealed to us.

As the days unfolded the layers that masked the hidden truth underneath your sweet perfection began to give away.  Deep below the surface of everything we ever dreamed your life would be, lied a story that had already been written for you, the words so deeply etched into the pages they could never be erased.  The reality so painful it shook the very ground we stood on, splitting it at the seams, a mirror image of the damage within our hearts.

You were only five days old when you first started to show signs of trouble.  We wanted so badly to wish it all away, but it is hard to ignore a burp cloth stained with blood, and a baby whose lips are tinged with blue.  Your breathing would become more and more difficult as the year went on, but the thing about you is that no matter how little air there seemed to be in the room, you always seemed to find my eyes.  You knew I needed you to, so I could find my breath as well.

I have watched you overcome with more determination than anyone I have ever come across.  Your quiet fighting spirit has brought you back from the brink of many disasters.  Your huge heart keeps me grounded and fills up even the cracks of the broken pieces within mine.

I lost a small piece of my heart every time we thought mitochondrial disease might touch your life.  Your were just a small being within my body the day we found out your sister might have it, which would mean you could too.  You were not even a month old and had already spent nights struggling within the hospital the night we found out your sister did in fact have it.  You were just a year old laying floppy on my lap wrapping your unclothed toes around your oxygen tubing slowly kicking it back and forth, the moment we finally heard the words we dreaded hearing for so long, "your son also has mitochondrial disease."  Each time, a piece of my heart forever broken.

Although we feared the worst of what this might mean you have continuously proven that you will simply refuse to read your story as written.  You simply refuse to let your disease define you.  I can not explain the tremendous joy I have felt in watching you accomplish things that people have thought might be an impossible.  You my son make the impossible, possible.  You create hope from hopeless situations.  You make every single dream worth living.

You have taught me so incredibly much just about how life should be lived.  I have seen you get up and brush off the dirt refusing to give up and give in more times than I can even count.  Even when the world has told you it is ok to stop trying you tell them it's not.  And maybe, maybe that is the secret you came into this world with, my love.  Maybe that is the tremendous gift you were given that most of us do not have, the perseverance it takes to navigate a world as big as this one with challenges that just do not seem compatible with life here.

To the world you may not be a superhero, but to me my sweet son, you are and always will be mine.

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."

     

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.

Forever

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?"

"Yes."

"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.  

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."

 

Our Foyer

Our foyer tells a story far beyond clutter, like a page torn straight from an Eye Spy book depicting the unfortunate necessities scattered among normal every day life . It is the picture of tragedy and the aim for normalcy crammed into one small space, one small lifetime. 

It is; the magical moments, the triumphs, the wars, the adventures, the milestones. It is the let downs, the set backs, the moments of weakness, the heart cries, the knees hitting the floor, and heads hung in sorrow. It is standing back up, brushing off the dirt, the holding of hands, the coming of forces, feeling stronger than ever. It is knowing right now whatever we face we are doing it together. 

We are doing our best, as one, to combine; love, truth, pain, and normalcy. Every single item in that foyer holds more memories than the space they take up on the tile floor. Sometimes our spaces just aren't big enough to hold all they must hold, and that's okay.

The Plunge

I am doing it, a little something for me. I am taking the plunge.  I am swinging the bat and hoping for a home run, or even just the glory of hitting my own personal goal.  I have found my niche, the place where my creative writing meets my love for photography; the place where my life meets my need for willful expression. I want to bring you on a journey, if you will come, to a place where only my heart can speak; from every day miracles to the captured mundane, where piece by piece we learn to let go of what we planned for ourselves and embrace the life we were meant to live.

~Kate