I’ve started and deleted this first blog entry a number of
times. After each deletion I stand up, walk into the kitchen, open the snack
drawer, and break off a piece of chocolate. It’s not even good chocolate; not
the bittersweet dark chocolate I crave, but a generic waxy chocolate bar that
should have been tossed months ago. I keep it for emergencies, like this one—the
initial post of my ClubMom blog.
I sit here at the computer with glee in one pocket and fear in the other. Excited to have a public forum for my words. Terrified to have a public forum for my words. How do I begin? What if I have nothing to say? What if I can’t write down my feelings and thoughts? What if no one cares about our story? What if ….
You see, this blog is about my son, Elias; but since I am the one writing, it is also about me, his mama. It is about my hope and fear for this uncertain life of ours. It is about living far from family and friends in the Great White North with a child who may, or may not, have life long disabilities. It is about the miracle of my son’s survival and progress. It is about the loss of the healthy child I expected
This is not the story I wanted to write; but now that it is mine, now that I’m two years into it, I can’t imagine an alternative plot.
If you haven’t already been following our story, let me catch you up with the shortened version. My son Elias arrived four months early by emergency c-section with an Apgar score of 0. No heart beat. No breath. He weighed one pound twelve ounces and underwent heart and brain surgery before he weighed two pounds.
What our first family photo doesn’t show is the worry lines around our eyes as we lay our hands on our tiny son. It doesn’t show how much we ached to hold him. Or our desire to somehow go back in time, to fly around the earth until we reversed its rotation, so we could save our son from relying on machines, doctors, and nurses to keep him alive.
Fast forward twenty seven months and here I am sitting at the computer hoping for a few more moments alone to finish this initial post before Elias crawls backwards out of his room and says, “Mama, up…up… MAMA UP.” Those lines around my eyes have deepened but so has my love for my son; so much so that I wouldn’t trade him in for a healthy child—unless of course that healthy child was him.
But to Elias every doctor’s office is just a playground with tables to climb under and chairs to pull up on, just another place to explore. We live in a land of bitter sweet extremes, from long winter nights to endless summer days. There are days when I stand shivering in the shadows of the mountains with no energy to climb. And there are days when the view from the peak is too beautiful too describe. But I promise to try.