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.