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!