Sunday, October 26, 2014

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.


"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.

Saturday, October 4, 2014

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.

Wednesday, October 1, 2014

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.