In those early, dark days right after Kerian died, the glare
of my grief was so bright I was blind, and the buzzing in my ears blared so loudly
I could hear nothing else besides Mister 10,000 Volts (Mr. 10Kv), Kerian’s then
three-year-old brother who still needed his mama. The ferocity of those
sensations was heightened by the weather—it was the last day of August, and here
in Virginia, even in early September, the heat and humidity are still intense. When
we left the hospital the evening he died, the summer sun still loomed high
above us as Pierre-Francois (PF) and I staggered out from the overly-cold PICU
unit into the suffocating heat. My empty arms felt leaden at my sides as my
arms and legs often do in my nightmares, and I wanted to fill them with Kerian
so badly I could swear my muscles burned.
The first book I read after Kerian died was called Waiting
with Gabriel, by Amy Kuebelbeck. In that excruciating, beautiful book, she
wrote about her discovery during pregnancy that her baby boy (Gabriel) had a
congenital heart defect called hypoplastic left heart syndrome (HLHS). She
recovered her composure well enough after the diagnosis to decide to carry him
to term, deliver him, and to lovingly live his precious little lifetime
alongside him in comfort care. In a paragraph of the delivery scene, she used a
term that burned itself into my mind with the bright light of truth: “sweet
heft.” That’s how she describes the feeling of having the sweet heft her
beloved Gabriel, clean and swaddled after delivery, placed gently into her arms
by a nurse. And if you have held your own beloved infant in your arms, you understand
like I do what she means by that sweet heft of a newborn’s weight.
As I wrote this draft, it was Saturday, February 25, 2012,
and spring was already making its gentle approach. I could hear birdsong
outside my living room window, a melodious reminder of the coming of the season
of resurrection. And yet, for me, for my family, during this particular spring,
we have these painful truths to reconcile: the earth goes on turning, the
seasons go on changing, and life without Kerian continues. Father Time drags me
into the future while I dig my fingernails into the drywall to try to prevent
it, because I am desperate to remember. My memories, some photographs, and one
video are all that I have left of Kerian.
On that morning of February 25th, I awoke thinking
of Kerian, and wishing that I could go into the bedroom he was to have shared
with his big brother, Mr. 10Kv, and pick him up out of his crib and snuggle him
to my chest. In my dawn-of-dreams-inspired imagining, Kerian was plump,
crimson-cheeked, and whole—a perfect Gerber baby at six and-a-half months. This
“vision” happened without trying, a natural phantom inspired by my proximity to
sleep. It came to me—I did not purposely paint it in my mind’s eye. Before and
since that time, no matter how hard I try, I cannot conjure up any face other
than that of his thirteen day old self. I am frustrated by my lack of
imagination and my inability to create for myself in my mind’s eye the chubby,
happy, cooing baby boy that Kerian would surely be had he been born whole, and survived.
My frustration is amplified by my fear that I will forget—forget details of
Kerian’s short life. I want always to remember the sweet smell of his hair, the
warmth of his cheeks beneath my lips when I kissed him, every nuance of his
sweet face. But memory falls victim to the cruelty of time my friends; like a
miser’s riches stored under the mattress, it dwindles into rations rather than
growing while stored safely in a bank.
On February 25th, when I started this post, it
was six months to the day that PF and I still had optimism that our Kerian
would rally, that the tangled mass of his poorly-developed heart could be
repaired by medical alchemy. We were innocent child-parents who believed in
magic, in miracles, in doctors, and in resurrection. We had so many encouraging
signs in the first few days of Kerian’s week-long stay in the PICU that we were
able to hold on to hope while we longed to hold him in our arms. Alas, you know
the end of Kerian’s earthly story—his survival was not to be. Notice that I did
not say it was not meant to be—because it’s not that it wasn’t “meant” to be. He
simply did not survive, but surely he was meant to have lived on, safely with
his loving family. And it did not take me very long after his death to
reconcile the subtle difference between the two statements, “was not to be,”
and “was not meant to be.”
It was not to be that Kerian would ascend like the
proverbial phoenix from the ashes. Instead, I, his mother, must day after day,
step after step, continue my slow climb out of the punishing hole of grief,
despite my now jaded beliefs about rising again, and despite the weight of what
I carry with me. So tonight, one day after Kerian’s seven month birthday, as I
write about these emotional stones on my back, I realize that I am living with
my fear of forgetting what I still remember, agonizing over my guilt for
forgetting what I already have, and missing his sweet heft.
