Mitochondrial Disease; It Isn't All About Suffering

It is no secret that Mitochondrial Disease has brought a lot of trauma and suffering to our lives, the countless amounts of; hospital stays, ER visits, painful procedures, medications and side effects, interventions, adaptive equipment, medical supplies, doctor and therapy appointments, nursing visits, friends we have lost, the list goes on. 

What we don’t often talk about is the positivity that has resulted because of the hand we have been dealt that we cannot change.  The beautiful people who have entered our world that we would have never met otherwise.  The hand in hand comradery, the touch that says I know how you feel, without having to say a single word at all.  The close knit hearts, woven together, a stitch in time that began the moment the words were uttered “I have mitochondrial disease too.”

The strength and perseverance we must amount to in order to make it just one more day in this world.  The energy that it takes to lift your foot and take just one more step forward.  The close fellowship we have found with our Lord and Savior Jesus Christ who suffered most of all.    The power felt within when your knees hit the ground and you know He is the only one who can get you through to the other side.  The heavy weight lifting from your back, and the feeling of accomplishment when you take that deep breath and know you have made it through just one more trial. 

The closeness of a family who has learned to suffer well together, a family who has learned to pray together.  Though there is very little more heart wrenching then the cries of small children with tear streaked faces yelling “please don’t let her die,” there is also something extremely humbling about their heads bent in prayer, hands chained together praying over their sibling, knowing they can rely on God. 

This disease is cruel, it is destruction, it is heartache, but it is also the building blocks of positivity if you choose to find it.  Would I change it if I could? I would send it straight back to the maker, but the truth is I honestly believe for whatever reason we were meant to carry this burden we were also meant to find some peace with it.  I don’t know who we would be without it.  I do know we would be a family without physical suffering, but we might also be a family without the absolute blessing of the beauty that surrounds us because of this disease as well.

What Does Our Daughter's Autism Look Like?

She's at a movie theater, she is sitting next to me, legs folded "cris-cross-applesauce." She keeps her eyes peeled on the screen, pausing every few seconds to scrunch her tiny nose.  "What does despicable mean?"

"It means really bad, please whisper," I say "We are in a movie theater.  It is a quiet place."  She stares intently still, not removing her eyes from the screen.  She rhythmically pulls on the bracelet that surrounds her slender wrist.

"What does villain mean?"

"It means a bad person, remember," I say "We are in a quiet place." I shift in my seat.

She rocks gently back and forth in hers.



We are at the library, a gentleman is there to showcase snakes, a special viewing for children.  Around us are parents and small children of various ages.  Before us is the presenter and aquariums covered with sheets.  My daughter sits in front of me, surrounded by her siblings.  "Does anyone have any questions before I begin?" Several hands rise.

"When are you going to take the sheet off?" She yells.

"You can't shout out," I gently say "You must raise your hand."

"Are there snakes in there?" She hollers over me and the crowd.

I put my finger to my lip.  She looks through everyone as if she is the only one in the room.

Her brother's foot gently brushes the back of her leg. "Stop touching me!" She yells.  "You know I don't like it when you touch me!"

I can feel the stares sinking into the back of me.



We are at the ball field, an earned promise to our children, a game of baseball and a picnic on the field.  Her siblings are laughing and running despite the heat and sweat that is overcoming them; gloved hands, tightly gripped bats, soaring balls.  There are smiles everywhere.

Inside the dugout she sits, alone, book in hand.  Completely content to not participate.  She does not feel left out.  She is partially in her own world, and partially taking in the world around her, trying to grasp how it operates and what feels right to her.  She is learning what parts she wants to own and what parts she wants to discard.  She is figuring out how to be graceful in a setting  that was designed for those less unique than she was created.

It is not easy, it is not comfortable, but she is doing it day by day.  This, is our daughter's autism.

How this Special Needs Momma finds her Peace

They approach her bed, something is fiercely wrong.  Her alarms sound quicker and louder, sounds I have never heard before; noises I cannot connect with the reality that is vastly falling around me. 

I watch her lying there, nearly lifeless, although she must be living, the alarms tell me at least this much is true, so why isn’t she moving? Why isn’t she responding to their shaking, their vigorous rubbing, their claps, their yells.

I stand there completely still, as if I am not there at all.  I now know the truth and it isn’t safe with me.  I have no idea what to do.  I feel useless, afraid.  I close my eyes and try to find my peace.

It’s hard to imagine not having that one place your mind can always turn to; that one security, a place no one can harm you even in plain sight.  The world and all it’s unthinkables cannot touch you there.  The flesh wounds that each day inflicts are healed here.  In this place I am safe.  In this place I find my peace.

It’s 3 A.M. an ominous light peers through the window as I lie awake in a hospital bed.  It outlines everything unfamiliar that surrounds me, ending it’s design at the jarred door.  The hall lights are dimmed, like a drug store that has been closed for the night.  My family is tucked away elsewhere, my kids fast asleep.  I am alone.

 

I am here to rest and recover, but resting I cannot do.  Nothing here is familiar, or mine.  Even the pain inside my body feels foreign.  The blankets that are meant to keep me warm are brittle from years of being bleached and reused.

The IV pumps, forcefully, interrupting my thoughts.  This is not my place.  I close my eyes and try to find my peace.

As I finish my nightly routine making sure all of my children are tucked gently into bed I too find my way to my resting spot.  As I climb in my worries begin falling steadily to the floor.  I roll on my back, the softness of my mattress consumes me.  I exhale deeply, and inhale again.  In this place I am safe.  I close my eyes and try to find my peace. 

I take a look at my daughter.  She has more medical interventions than I have seen most people manage outside the walls of a hospital.  Some days I wonder just how we got here, and could we ever go back? It hurts to think about the choices we made and how different things may have been if we had just done “a” instead of “b” or the reverse.  Thinking like this does not help, it only leads to more pain, a heart that bleeds tears that sting the flesh.  I close my eyes and try to breathe.  My chest feels heavy.  I try again to find my peace.

Night:

You had a rough day.  You cannot go back in time.  Searching for reasons only brings more questions.  Searching for questions, never seems to bring answers.  You have made your choices.  The road you chose to take was a one way road.  It is too far gone now to turn back, just breathe.

Morning:

If you got through yesterday you can get through today.  Put one foot in front of the other.  You can only move forward.  Moving forward can never get you behind.  Go, move, and find your peace.

My day begins and ends with the only place I need to be, immersed in my faith.  It is the pacifying warmth that protects me from a world that is a little too flawed.  In my faith, This is where I move through the pain, despite the pain.  This is where I am safe, this is where I have peace.

When the Doctor Told Us We Would Outlive Our Daughter

There are few times in life that I can honestly say I nearly lost all faith; faith in everything, time, logic, even God.  Having no faith is like having no air in your lungs, no blood in your body, no place to go, no reason for anything, simply existing without purpose.  That is what it was like for me the moment a doctor told me in all reality despite some catastrophic accident, or miracle, we would outlive our daughter.

As the air began to refill the room a bit, I glanced over at our then five year old daughter.  She was sleeping on the examination table.  We had driven nearly a half days drive to get to see her specialist, and despite sleeping in the hotel for a full nights rest she was still simply exhausted.  She had ostomy collection bags hanging from different connections in her stomach collecting the drainage that her stomach and intestines could no longer process.  She had IV supplements pumping into her permanently tunneled central line to give her the nutrition her digestive tract could no longer maintain.  She was frail, her stomach was protruded, she was pale, and despite the life threatening sepsis she had just made it through, the chronic liver inflammation she was battling, the bone marrow suppression, the seizures, and difficult to treat infections we knew were ravishing her body and making her weak, it was truly the first time I saw her as ill as the doctor had just described her.  I wanted to be sick.

“How can you be sure?”

“When you have been doing this as long as I have, you just know.  No one's body is meant to carry on like this for the long haul.” she said as empathetically as she possibly could. 

I choked a little, my mouth without any saliva at all. “How long?”

“It’s hard to say.  If she continues down the path she is on now, as rapidly as she is, maybe one to two years at best.”  She looked at me for a moment longer, glanced again at my sweet sleeping girl, and then looked away.

“No, no,” I thought to myself, “There must be some mistake.  It just cannot be my little girl we are talking about.”  The entire conversation felt surreal.  Our doctor’s at home constantly tried to sugar coat everything.  They were always giving us the old “just give her some time,” speech.  I was so jumbled up I didn’t know what to believe.  Then it struck me.  It hit me so hard I nearly crumbled out of my seat; how quickly she had gone from a nearly asymptomatic little girl to a child who needed support for nearly every organ in the short matter of only 2 years.  How could this be happening?

I left that day not with a plan to treat or fix my child, but a paper full of suggestions and accommodations on how to best make her comfortable.  The shift in care left me feeling defeated.  She slept the whole way back to the hotel, while I cried.  The world isn’t supposed to work that way, you aren’t supposed to outlive your children.  You give birth, you raise them, you have grand kids, you help raise them, you get old, your kids help care for you, and sadly one day they bury you, and mourn for you, but that is the way this world is supposed to work.  It is the only fair and just way this world is supposed to work.  You aren’t supposed to bury your babies. 

It has been three years since that fateful appointment, and it took time, but I have regained my faith in; time, logic, and even God, not just because my daughter has lived, but because I need my faith to keep me sailing through this life we are leading.  I have watched too many friends of mine, whose children too have mitochondrial disease, bury their babies outside the proper order of time.  I have fought with the unfairness and illogic nature that comes with that tragedy.  It gouges out your heart and makes your soul bleed in a way I can never fully explain.  

 I can’t help at times to wonder when my little girl will no longer have the strength to fight, but I do my damndest not to think that way, not to live that way, because the only way to keep the life in her years is to allow her to live them, and that is what we intend to do.  Every morning when we wake, we give her life again, to the fullest, until the end. 

Our Little Miracle

We loved you long before we ever knew you.  From those early wishes and hopes for what your untold future would be, to the first beats of your heart and kicks of your feet.  We made plans for you, aspiring deeply to paint a picture hand-over-hand of the future you would have, one as beautiful as the love we felt for you.

We read to you every night as you nestled deep inside my womb, uncertain if you could even hear us, but believing that you could.  As we lifted the words off the page we let them be your story, written by another, but told by our hearts.  We allowed ourselves to think you owned them as if they were meant for you.

We engraved those words upon your baby blanket, so that when you made your entrance into this world we could wrap you in their warmth and familiarity.   We folded you tightly like a package, the visible corner underneath your Heaven-made face read;

           "Gaze at the stars,

             and watch the moon rise.

            Each day there are miracles,

            in front of our eyes.

            Dance to the music,

            and sing like the birds.

            Let stories and books,

            bring the magic of words.

            Enjoy friendship and laughter,

           your whole life through,

            and the love that we feel,

            as we welcome you.

        (My Little Miracle J. Beck and J, Croydon)

          We love you so much!
          Love,
          Mommy and Daddy"

We watched you grow and it was ever clear you marched to the beat of your own drummer.  You did things your own way, in your own time, and within your own expectations.  There was never a dull moment within your presence, lighting up each room you entered like the Fourth of July, all eyes on you, every one else taking a back seat.  There were days we feared you would fly so high you would never come back down.

We worried when they said that the you that was so special and yet so hard to "read" had autism. What would that mean for all the things we wished for you? Would all of our dreams for you now be just out of reach enough to make us ache?

We watch you grow now with this invisible label you wear upon your sleeve, always shedding your layers to reveal what is underneath, the raw, take-all-or-take-nothing you.  You are this amazing force inside a pint sized body, a constant tangle of knots we are trying to undo.  You refuse to be unwound.
 
We have overflowed with joy as you have checked off each of the dreams we had for you one by one without even knowing it.  You just love looking at the stars.  You take in everything like it is art, the sky to you is like a giant canvas, the stars small specks of paint.  Music moves you, your body constantly moving to a silent symphony that plays only for you.  You have loved books since you could hold one.  The first thing we learned you loved to do was count words and letters.  When you were four years old you told me there were twelve-thousand and fifty-two Z's in Daddy's chapter book.  You were so proud of yourself.  Words are definitely your magic, and boy do you love to laugh.  It echoes through our home and down the street.  It is impossible not to laugh with you when you are laughing.

We know you will always be uniquely you and that is just fine.  You have paved the way, so just continue to lead us behind you sweet love.  We didn't even know what we wanted until we got it.  It is funny how life works out that way.  Today I realized my heart couldn't be any more full when you approached me to give me a card you had made.  You told me that you had been reading your baby blanket every day and that you wanted to write me back a letter to tell me how you felt.  Before I even read it I felt my emotions take away my words, no matter what your feelings were, just knowing you were willing and able to share them with me was more than I could ask for.  What it said was far more than anything I could have expected:

"Dear Mommy,

I am really glad that you are my Mommy.

I love you so so much.

No matter where you are I will always love you.

Love,

Me"

Most importantly of all the things we wished for you, we know you feel loved. You my love are our "little miracle."

I Will See You When the Moon Goes Down and the Sun Comes Up

Every night since our son found the ability to speak to us he refused to let us leave his room with “goodnight, see you tomorrow.” He would swiftly shout back in his small sweet voice “no goodnight, not tomorrow.” Though to most it would seem like a defiant move to reject the idea of going to sleep that was not his reason, not one bit, not at all.

He simply needed the reassurance that closing his eyes meant nothing in his world would change.

I used to need that reassurance as well. For years our world was rocky, only barely remaining on it’s axis.  Our daughter and son’s health were in a near constant battle to stay stable keeping us in a revolving door of inpatient stays at the hospital. As the children continued to decline, so did my ability to stay faithful that they would stay with us long enough to see a cure for mitochondrial disease. Things have become a little calmer around here, but I would be lying if I said there were not days where that deep rooted fear did not climb to the surface of my mind. 

There were days he would wake up and find me gone. I hated that for him. So many; unexpected admissions with his sister, late night ambulance rides, middle of the night kisses goodbye, with no way to explain to a small-nonverbal-child that Mommy was coming back as soon as she could, wishing with all her heart that she could somehow be in two places at once. It was traumatizing for us both, the near constant separation that went on for well over a year. We all tried our best during those arduous times, but sometimes our best just wasn't good enough no matter how hard we tried. Only God knows how we came through, suffering only minimal scarring, on the other side. 

Not a day goes by where I do not count my blessings for that fact.

***********

I crawled into his bed, he lay on his side fidgeting with his flashlight. Placing his small hand in front of the light watching to see where it would fall, then glaring with fascination as it illuminated his hand when he interrupted the beam. I straightened out his covers and placed my head on his pillow. He rolled over turning off his flashlight, looking through me with his glassy grey eyes. 

“Are you sleepy yet?” I asked running my hands through his moppy-sand-colored curls. 

He smirked slightly curving only one side of his mouth, shrinking his eyes so that only his pupils were showing.  His thick eyelashes like blinds covering the small opening of his eye. “No, I not sleepy.”

“I think you are.” I stroked his baby soft cheek, his skin like satin.

He rolled over facing his top bunk, clicking his flashlight on and off, the light creating a perfect circle on the dull wood surface above. “Mommy, where does the moon go when the sun comes up?”

I laid still for a moment, unsure of what to think.  I was surprised by his sudden ability to formulate a question, the advanced thought process it must have taken, things he had struggled with since he had learned to speak. How long had he been thinking of this?

“Mommy?” He rolled back over pressing his small button nose to mine, so close I could smell his sweet baby breath.

“Well,” I paused for a moment to think “it is still there I guess, you just can’t really see it when the sun comes up.”

He sat up quickly, pulling the covers off of both of us, grappling for his flashlight, again shining it on the wall and then covering it with his hand, staring at it intently. “When the sun comes up the moon goes away? When the moon comes back the sun goes away?”

“Yes, but they don't really go away buddy. They are always there even when you can't see them.  Sometimes, when the sun is up, and you look really hard, you can still see the moon.” I sat up next to him gently taking the flashlight. I placed my hand on top of his letting the light shine through both of our fingers. He looked up and smiled, seeming to understand.

I finished tucking him in and started for his door. “Goodnight, sweet guy, Mommy will see you tomorrow.”

“No, no tomorrow, no goodnight.” He shot up and pouted.

“Mommy already tucked you in little man, it is time for me to go.” I turned around to leave.

“Say, I will see you when the moon goes down and the sun comes up, say that.” He was near tears, his chest rising and falling quickly, his face turning blotchy and red.

It was then that it hit me, he needed to know that just like the moon I wouldn't really go away, and just like the sun I would always come back. I walked back in and sat on the edge of his bed, placing my hand on his back.  He laid down, his mouth still in a downward curl.  His eyes turned towards his pillow. “I will see you when the moon goes down and the sun comes up.” 

He closed his eyes, smiling, and gently drifted off to sleep.