The Wyvern’s 50 Shades of Gray

By Robbie Sproule from Montreal, Canada (Flickr) [CC-BY-2.0 (], via Wikimedia Commons

In Heart Warriors I stated that we heart moms have to reach into a bag and draw out a marble each day that our children are with us.  Everyday, some mother somewhere draws the black marble and loses her child.  Every day in the world and every day in the USA children with CHD die.  They just do.  Often they’re newborn babies, but sometimes they’re 3 or 6 or 9 or 15. Sometimes they’re 26 or 42, but every single one lost is some mother’s child. And the Wyvern is also a CF or MDA mom.  We all draw marbles.

I pulled that black marble reference from a memory of a miniseries I watched once – Stephen King’s Storm of the Century, and his reference was actually a black stone, which was a send-up from Shirley Jackson’s The Lottery where it was a slip of paper with a black mark.   But the metaphor holds.

Sometimes CHD survivors die suddenly with the black marble.  Sometimes, they don’t die on the day the marble is drawn, they just get pulled very quickly back into battling for their lives, and the victor is yet to be determined.  The marble drawn on those days is a shady gray that develops one way or the other like a Polaroid picture.

Those of us holding our white marbles today, keeping our kids stable today, hold our breaths and pray for those children whose mothers hold gray marbles.  We beg God to turn it white, to let them redraw, before it turns black and they stop playing this game altogether.  This is a vicious, painful game, but we live for the pain of playing in it because the pain of losing in unimaginable.  No one wins, we either lose or we keep playing.  This is our masochism that stems from the deepest, purest love.

We all wait, and hope, and pray that today’s child and his family will get a Mulligan.  That the doctors and surgeons and nurses will beat back death yet again.  We pray, and we pray, and we pray for them, and in between our sobs for them we pray for ourselves too.

You see, none of us knows.  Not one of us knows which of our friends, our comrades in arms, will be drawing that black marble tomorrow, or the gray marble  Not one of us knows that it won’t be us holding uncertainty or utter loss.  It can always be us tomorrow, even when today it is them.    There is no comfort in seeing our friends negotiate the black.  There is deep gratitude but small comfort to be taken in today’s white marble, knowing we draw a new one tomorrow.  You see, that’s all we have, today’s white marble.

That, my friends, is the nature of anticipatory grief.  That is the reality of every Wyvern Mother and Father.  And tonight, I have two  friends holding very shady gray marbles.  And tonight, the whole world is praying for them to turn white, to let my friends redraw.  Please pray for them too.

Today, I thank God for my daughter whose heart beats entirely on its own volition.  I thank God for my son, his inch of growth, and his passion for dinosaurs in the same breath I beg Him to spare my friends’ children, and then I pray for an endless supply of white marbles.  This is where the Wyvern dwells, welcome to our slippery nests of marbles.

1 Comment »

  1. Praying with you Amanda……. I can’t tell you……..OF course I can tell you, how MUCH I hate this Disease and every single other Disease or condition that rob us of our precious babies/children…… Nicki

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