It’s raining outside. I can’t remember a recent February 16
or August 12 when it hasn’t which is fine because it reflects the mood inside
our home. Yesterday it snowed here in
North Carolina, or I should say the weather gave its NC rendition of solid white
precipitate. That is to say a ‘dusting’ for those North of the Mason-Dixon
line; but a reason to close all the schools, massive wrecks and shortages of
bread and milk here in the Triangle of NC.
So last night when I walked outside, the fog of
transitioning weather took me back 17 years to what had been a crisp, clean and
moments of anticipatory joy. The date was February 16, 1999 and not two weeks
prior our family of three was gathered in an ultrasound room looking at images
of the soon to be fourth member of Team Coleman.
There we three stared at grainy gray scale images of head,
belly, arms and legs wriggling in a sea of love only a mother can provide. As the technician pointed things out there
were increasing levels of joy, wonder and love – there were ten fingers and ten
toes, an appropriately developed brain, a heart with four working chambers. Our little boy was going to be born perfect
and without complication. Well we were
right on one hand and so wrong on the other.
Evan MacGilvary Jenkins Coleman joined our family at around
9:00 am on a cold, crisp and clear blue morning via emergency C-section because
he got caught in the jump rope of his umbilical cord and wrapped it around his
neck twice. Over the last 24 hours this moment in time has been represented by
the cold unrelenting sleet and ice that signaled the impending treachery and
trouble that life can throw our way.
The Giant Congenital Melanocytic Nevus that was a birthmark
of biblical proportions cover his back from his neck to the cleft of his
glutes, and wrapped around both sides of his body to almost meet and join over
his belly button. The colors and textures
were a physical representation of every known natural color of skin possible in
the human race.
He was wearing his very own coat of many colors like Joseph
of early biblical fame. As we each saw this beautiful baby boy and his birthmark
we were thrown into a deep and dark fog with our only beacons being ‘experts’.
What had been a moment of anticipatory joy had turned cold, cruel and painful
as hospital staff, doctors and nurses approached us with carrying degrees of
pity, sadness, remorse, fear and the glassy eyes of the unknown. Last night as the fog settled in and the only
light was cast by sodium vapor lamps glistening in a fog so thick you could
barely make out the edges of the road; it was this pea soup that threw me back
seventeen years to the beginning of a personal fog.
Over the next thirteen and a half years the fog ebbed and
flowed as we experienced all the events and emotions of building and being a
family. There were house moves and vacation
trips of lifetimes. There were school plays and favorite teachers, and then
after eight of those years were done; the fog was met with the darkness of
night as the shadow of the word melanoma hung heavy over our heads and lives.
Until the rain of this morning brought back the events three
and a half years ago as a sadness enveloped our lives like a cold North Carolina
rain, Evan died. No matter how hard we
had tried to get over, through or around the fog we saw no light or way out. The empty space in our hearts has not been
filled, the edges are a little less sharp, almost softened by time, but the
dark black hole of dread and despair looms waiting for these days of remembrance.
This year in a testament to the power of ideas and legacy I
will graduate school as a Physician Assistant capable of taking histories,
performing physical exams, developing differential lists of diagnosis, ordering
and assessing labs; and ultimately prescribing and following patients and their
plans. This is legacy of inspiration and
fulfillment of a promise made to Evan as he lay dying in our bed. That I would help
as many people as I could with the breath left in my body.
The rain pours outside both literally and figuratively for
the pain and sadness of loss are real I can see a glimmer of light in the future,
the memories will not stop coming, but the future is a brighter place. I know
that my research efforts, inspired by Evan’s perseverance through the fog, are
making a difference both in the labs of the world, in the clinical lives of
patients and in the power of the sun rolling back the fog that envelopes the
lives of many families.
Today our little family of three will gather again, not in
an ultrasound office but a restaurant; and we will look into a grainy gray
scale image of the future and we will not see perfection, we will not get
sucked in by a false hope. We will
instead see the joy in opportunities and hard work to be shared in building a
life in this world.
Today is yet another celebration of love, life and joy. It is a day of remembering great times and
amazing people, and it is an opportunity to be inspired to do something great,
like climbing Kilimanjaro and taking a T-Shirt to show the world your inspiration
to do and to act was a sick little boy in a wheelchair who denied death the
victory of destroying any dream while he still had breath to give.
On the eve of Evan’s death in 2012, he demanded to stay with
me as much as possible and to participate in living with winners. He saw the college and the team that I coached
as winners and they saw his courage as inspirational. On his last day at
practice the team took a photo, had it put on T-Shirts and wore them as a
tribute to Evan after he had died. After
they had showed up to his funeral in the most respectful gesture, and wore
black armbands for the season, and even worked in the Evan’s Garden, I hope
they will forgive me in thinking that would be the last they would think of
Evan.
In January of this year I received this photo via Facebook.
A true Yorkshire lad, our Danny Stirland, had climbed Mount Kilimanjaro in support
of a Hospice House in the UK. I cannot
think of a greater honor or lasting impression and inspiration than that of
Evan on Danny. If you look closely at this
picture of triumph, the T-Shirt Danny is wearing is the one honoring Evan on a
soccer field in North Carolina.
Do not yield to the cold. Do not get lost in the fog. Do not
get drowned in the rain. Feel the light.
Be inspired by the light. Be the light.
As I finish the note, the sun is trying to break through,
the birds are singing their morning songs and my heart is a little lighter as I
say – Happy Birthday Evan!
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