Guest blog by Oger (Grandpa Roger)

TWO FIVE LETTER WORDS

About twelve years ago, a credit card application came in the mail addressed to “Oger Rapp.” Emily happened to be home with us in Cheyenne, Wyoming on that day, noticed the computer error in my name, and after about five minutes of laughter, awarded me with my first and only nickname, “Oger.”

So with this note of self-deprecating humor, I, “Oger,” dip my toe cautiously into the “blog” where the Little Seal swims freely in the profound and deeply reflective waters created by his talented mother and her universe of creative, thoughtful, and incredibly intelligent friends from around the world.

When Emily entered the world on that hot muggy night of July 12, 1974 at St. Francis Hospital, Grand Island, Nebraska, I was a little relieved that she missed Friday, July 13 by about 20 minutes. Mary wanted to name her “Emma” after her grandma Slagell, but I thought Emma was too old fashioned, so we compromised with Emily, avoiding the popular names at the time (i.e. Jennifer, Amy), not knowing that years later, Emily would for a time become the most popular name of choice for infant females born in the U.S.A.

But on July 13, 1974, after picking up my mother at the Grand Island airport, Mary met us in the lobby of the hospital. I beheld the barely concealed terror in her face as I heard her say, “There is a problem.” Moments later, looking at the x-rays of Emily’s  infant body, a cloud of despair, like the opening scene of Brigadoon, fell around me as I saw her left leg unmistakably about one quarter shorter than the right one.

Emily recounts the scene that occurred later in her memoir “Poster Child”:

“As Grandma cried, Dad stayed silent. Mom looked at him. The room

full of unasked and unanswered questions: Will she live with us

forever? Will she die young? Will she walk, run, skip, play, read, and

write? What will she be? When she speaks, what will she tell us, what

will she say?

And also the other questions that would never be answered. Why

us? Why her?

A partial answer came just a few months into Emily’s life, through the words of Dr. Marshall, her pediatrician in Grand Island, constantly reassuring her mother with each check up, each visit. She is going to be a very bright child. I can see it in her eyes.

“Oh no” were the first words erupting from the mouth of the pediatric opthamologist in Albuquerque on January 10, 2011, as he looked into Ronan’s eyes, viewing the bright red cherry spot on each retina, the signature symptom of Tay- Sachs disease. The second, and perhaps last time he would see these symptoms in his practice. Hours later, through tears of unspeakable despair, Mary and I heard Emily’s voice mouthing two words over the phone: Why? Then the second word: How? Once again I stayed silent. No answer to why this happened to Ronan. No answer to why she has to deal with it.

Later that day, after hastily packing some clothes, Mary and I headed south into the night, headed for Santa Fe. Outside temperature displayed on the rear view mirror of our Saturn Vue hovering between -10 and -15 degrees. Once again, a cloud of despair descending like the opening scene of Brigadoon. Only this time like driving into a dark cold tunnel, an oncoming train coming toward us with its shrill, piercing whistle.

For the first few days after Ronan’s diagnosis, I could hardly look at his beautiful face and his disarming smile without fighting back tears of sadness and despair. I had no words. No insight. No answers. No hope. Nothing.

Then one day, perhaps a week or so into our January visit, I was sitting with Ronan on my left thigh, the music of Tolkien’s Lord of the Rings coming from Rick’s computer speakers, filling the room with glory; suddenly, surprisingly, the Brigadoon-like cloud of despair gave way to an indescribable sensation of peace. It was as if Ronan and I were floating into a glorious universe of light. For a moment, time seemed suspended. The past evaporated. The future was absent. Suddenly I remembered five words from a sermon, sitting in the pew of the old German American Lutheran church of my youth. I don’t remember anything except the words:

THERE’S NO TIME LIKE NOW

Now I am looking over Emily’s MacBook computer. On the bookshelf below the window are pictures of Rick and Emily on the beach prior to their marriage in September 2008. To the left is a photo of Rick and Emily in New York City, with Rick’s mother Frances in the middle.

There is happiness, joy, and hopefulness in all of their faces, in all of the photos.

Every time I open the blog of the Little Seal, the disarming, penetrating, and comforting smile on the photo of Ronan, taken by his father, greets me with peace, with joy, with the innocence of an infant, welcoming, responding, transmitting light.

On this day, March 20^th, 2011, I woke at four in the morning, according to the digital clock next to the bed in Eldorado, in the guest home of two generous friends of Emily, allowing Mary and I a quiet and tranquil place for this visit. Suddenly, two five letter words emerged: Ronan. Light.  For a moment, it all came together. Ronan and Light.  Swimming through his blog, almost daily, Ronan is manifesting light. It is the light each infant brings to the world, before the forces of darkness seek to wipe it off their faces. The light that my friend Bill Harman calls the “friendly center of the   universe,” a light that flickers and teases us, melting away our sadness, filling us with peace, beckoning us to love, rejoicing in the world into which we have been placed by our Creator.

The insightful preacher Barbara Brown Taylor defines faith as not so much believing, but beholding.

Ronan invites. Behold the Light….