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.

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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.

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.

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.