Beyond Loss

David and Goliath: The Story of How My Kid Fought Life’s Battles…and Won

Everyone knows the story of David and Goliath, right?  David is weak.  A small fry.  He is the inconsequential youth who triumphs over his giant foe, Goliath, with only a small sling and a stone (oh, yeah, and also God), only to later emerge as the greatest king of Israel.  (Well, besides that other greatest king of Israel.)  But this is not a religious story – except that the grace of God granted the gift of my child to me, to those he touched, and to anyone who may trudge through this life an underdog.  This is the story of what it truly means to never give up.  To look the colossus of life straight in the face without flinching.  To keep going.  And to be grateful about it, too.

Throughout this past year, since David’s passing, I have struggled with the physical task of saying goodbye, of truly acknowledging everyone’s kindness, and assimilating this horrific loss into some form of hope for the future.  It has been next to impossible on some days.  I don’t want to say goodbye.  I don’t want to move on.  I want to spend every minute holding on to the objective presence of my child in my life – his clothes, his belongings, even his medical equipment – to somehow keep him in this world, and not some other world where I can’t be with him.  Perhaps I have failed at realizing the loss, accepting the goodbye.  Perhaps.  But I have excelled at recognizing what’s important.

To keep going.  With thanks and appreciation.

Even before he was born, David – MY greatest hero, toughest fighter, and the king of MY heart – was already bombarded with unfair challenges.  He barely eked into this life, it’s true.  But he rebounded with such admirable force and downright stamina, he couldn’t help but inspire anyone who knew him.  After all, he wasn’t even breathing when he was born.  He needed everything the NICU had to offer to keep him alive just to keep going.

But he did.  Keep going.  Not alone, but with the assistance of many others.  Many of you.

He kept going.  Despite every awful reality this life meted out to his little soul.  Severe brain damage.  Pneumonia.  Unexplained fevers.  Gastric reflux.  Spasticity.  Dystonia.  Epilepsy.  No problem.  Throw anything at that kid, and he smiled.  He left everyone else better for having known him, even as he fought the battles of his life, at times with every moment he lived.  And you saw the appreciation in his eyes.

His name was David, and that was no accident.

By nature, I have always been a procrastinator.  Sometimes a bit lazy.  Sometimes even a whiner.  But David taught me to suck it up.  Be grateful for every moment.  Take full advantage of every moment given me.  To keep going.  Even when I don’t feel like it – which is much of the time.  And to always try to be better.  Stronger.  Just like him.  Thankful.

So, as this first year without his physical presence here on earth is now approaching its close, I want to say thank you, again, to all of you who’ve been on this journey with me.  It’s a tough journey.  Some days, it’s a journey I truly, truly despise – which is maybe why I seem cranky on occasion.  I apologize.  On those days, I’ve lost the battle with despondency, let go of the lessons David taught me, and am being selfish, wallowing in my own loss and self-pity.

But I keep going.  I try to wake up the next day thankful.  Grateful.  With hope.  And with a genuine desire to share what being David’s mother has taught me in this Goliath-filled life we all lead.  What’s important is each other.  Acknowledging the role we play in each others’ lives every day – whether small or large – as cheerleaders offering encouragement, arms open with comfort and support, and smiles gilded with love and sincere friendship.

Maybe some would see David’s passing as a lost battle.  I don’t. I choose to believe he moved on to a greater place – an existence I cannot even fathom with my infinitesimal understanding of the universe.  A place where he no longer needs to battle at all – while we remain here on earth.  Where almost everything is a struggle.  And where we are often not kind to one another.  We are selfish, petty, angry, ungrateful – even mean.

Yes, we all feel downtrodden some days.  We all feel put upon.  We are all fighting our own battles against our own Goliaths.  We are all at different points on the journey.  In some instances, our meager pile of rocks is laughable in the face of what’s against us.  But, for now, we’re all still here.  Still in the thick of it.

Like David, we keep going.  Hopefully, we do so with grace, gratitude, and appreciating the gift it is just to keep going at all.  And in doing so, we triumph.

Why It’s Necessary to Keep Going

Sometimes, as a grieving mother, the cacophony of conversation around me at any given time is like a Jackson Pollock painting.  An unrelated stream of words, linked together only by proximity, with no real meaning to them.  On these occasions, my head pounds with pain, and I want to retreat from everything, everyone.

I imagine it might be this way, also, for someone with a sensory processing disorder, no matter what the cause.  I’m sure it was this way for Maggie, a patient I once cared for when I worked as a nurse, who had end-stage HIV, full-blown AIDS.  She was a young mother, emaciated, hospitalized, confused, and thought she was still in seventh grade at Broadway Elementary School in Newark.  She had completely abandoned her personal wrestling match with reality.  She quietly polished her nails sparkly green, while gazing bemusedly at the somber nurses who steadily barged into her room, occasionally knocking her bed table as she begged, “Hey, watch my desk!”

“Is it career day?” she asked, as her two preteen sons sat to her right on oversized, visibly worn recliners, breathless, having taken 3 buses after school just to visit her.  Their own mother.  Who now believed them to be classmates in her imaginary past youth.  Had the seventh grade been this way for her?  Who knows.

But I watched her carefully painting her nails, half jealous she was able to check out so effectively from the heartrending reality of her life.  That she would leave these two young boys very soon – motherless.  Alone.  I didn’t blame her for shutting this certainty down as she had, whether she had done so purposefully or because her diseased brain could no longer organically wrap itself around the concept of such despair.  Either way.  She was devoid of concern.  And I envied her freedom.

Except when I looked at those two boys.  The intense pain in their slightly glazed, pink eyes.  They were not devoid of the brutal future just ahead of them, right outside that room – which happened to be only a few days away, as it turned out – even as they half-smiled at her delusion.  They were suffering incomprehensibly at the loss before them, and I still shudder ten years later as I recall them.  Especially now.  Because I have my own young son whose brush with incomprehensible loss is so poignant to me.

He is the reason I can’t check out.  Can’t retreat to another place.  My own well-crafted seventh grade world, full of sparkly nail polish and Duran Duran.  I’d like to go there.  To neatly dispose of all the pain in a locker, or a LeSportsac, and rush to second period in my Capezios.  This isn’t an option, though.  My own occasionally sullen child – whose eyes are often a little watery, a little red – needs me.

He needs me to reinforce why moving forward is important.  Why continuing on means anything at all.

Yes.  Maybe it is career day, after all.

My career is to do everything possible to ensure that my living son, who has suffered more than any child should, can still appreciate the value of living, of working hard, of doing his best, and of honoring his brother’s memory by doing so.

Isn’t this why any of us parents remain in the trenches with our children?  To set the example.  To lead the way.  To show them that our behavior as adults is important.  That how we react to life matters.  They’re watching us.  Even when we get it wrong sometimes.  Which we do.  We’re not perfect.

But we can’t sit down on the job.