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I was sitting across the room
from my son Evan one day recently, instead of in
my usual place right
next to him. We were in the resource room at his school; the place
where Evan goes whenever he needs a break from the activities in
his classroom. On this particular day, I was struck, out of the blue,
with just how much Evan had grown and changed, especially in the
last 6 months or so. When you live with someone, particularly a child,
you don’t notice the subtle changes that are taking place with
them. At 10-1/2 years old, Evan is small for his age; he’s
only 4’1-1/2” and around 60 lbs, but for a child with
cerebral palsy and severe epilepsy, reaching this size is no small
feat! His long legs with feet strapped to the foot rests, clad in
fashionable black track pants with the zippers down the legs, looked
cramped. His torso, with his shoulders slightly slumped, and his
arms resting on the arm rests looked scrunched. So much so, it was
difficult to see the picture on his Disney Store sweatshirt. One
had to wonder how, or if, he was able to draw a deep breath. Apparently,
when we hadn’t been looking, he’d outgrown his wheelchair!
Now, how and when did that happen!
For me, Evan’s 10th year has been a time of reflection; a time
of giving thanks for the hidden blessings that I’ve found in
parenting and loving him, and for shaking my head in amazement at
the many challenges I’ve faced and met, sometimes
with grace,
other times with sheer, dig-my-heels-in stubbornness. Lately, I’ve
been finding myself wandering back in time, revisiting the years
that I’d mostly slept-waked through; my waking hours spent
looking through tears, my sleeping hours spent alternately cat napping
and caring for Evan. I may not be able to recall a specific date,
as each day has blended one into the next, into the next,
into the
next, but I can, however, clearly recall different events in Evan’s
short life. Somehow, through the haze of grief, fear, disappointment,
frustration, pride, and the recurring taste of bittersweet that has
dominated Evan’s early years, the history of Evan’s life
has become indelibly imprinted in my memory, in my soul, and in my
heart of hearts.
Certain memories are quickly recalled: birthday celebrations; the
smile of pure joy upon Evan’s first meeting of his brother,
Ian; tender moments with his peers; favorite nurses through the years;
hospitalizations – reasons for & lengths of stay; specific
diagnosis; the stress of passing his oral feeding tube; Evan’s
numerous ambulance rides; and as a newborn, how peaceful he had looked
in his isolette. This is only a small representation of what I remember.
His isolette. Evan’s first baby bed. A miniature space capsule,
complete with porthole windows that allowed us limited access to
a chubby little hand, a tender, translucent cheek, or a swollen little
foot, pierced by an intravenous needle. Picturing Evan at this period
in his life brings forth a flood of bittersweet
memories that involve
all of my senses.
I remember the distinctive smell of the neonatal intensive care
unit; the first time I saw babies, my baby, attached to machines
by wires
and cords; the taste of
blood in my mouth from continually
biting the insides of my cheeks to keep from breaking down in
hysterical
sobs; the roughness of the hospital laundered baby blankets;
and the constant beeping and intermittent screaming of monitors
throughout
the room. All memories that will never, ever leave the places
in my heart and head where they’re stored, to be taken out at
will, and at times, on their own.
For a long time after Evan’s birth, I’d go over and over
the details of his birth in my mind , tormenting myself with the “what
if’s” and “should’ve been done different’s”,
and the “why’s?!!”
I’m not exactly sure of exactly just it was that I stopped
obsessing about Evan’s birth, finally stopped torturing myself
with it. I suspect it must’ve been during his toddler years,
because I was receiving twice weekly therapy sessions at that time,
working toward making some sense of my situation and my life in general.
I still, occasionally, visit Evan’s birth, usually on or near
his birthday. I find that
in the days leading to his birthday each
year, I have a difficult time emotionally. I’m quick to succumb
to tears and I find myself frequently in reverie. My usually upbeat
demeanor is much more low-key, subdued, and my thoughts become distracted
and scattered. I refer to this as “My Autumn Called Evan,” and
I find that I need to let myself travel there. This year, however,
I would like to take you with me.
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