THE BLOG
06/08/2010 03:45 pm ET | Updated May 25, 2011

Epilepsy: A Family Love Story

It's One Big Happy Family season here at This Writer's Life. In celebration of the book's paperback release I have asked a number of the writers from "One Big Happy Family: 18 Writers Talk About Open Adoption, Mixed Marriage, Polyamory, Househusbandry, Single Motherhood, and Other Realities of Truly Modern Love," to reflect upon how things have changed (or remained the same) in their own lives since they wrote their essays over a year ago. Further, I've also asked various writers I admire to discuss their wild, messy, loving, non-traditional families as well.

Below, an excerpt from Elvina Scott's Epilepsy: A Family Love Story:

April 5
I've been thinking about angels. Let me back up. I was thinking about the early days of realizing something was terribly wrong in the wiring of Colby's brain. I was wracked, pinned down, frozen with panic, my mind stopped up with shock. Shock: a suspension of the mind, a resistance against crossing over into a new reality. Colby Rose was seven months old and having violent seizures. I watched her little body, her face twisting, her fingernails going blue, her fitful, exhausted sleep afterwards.

Up with her in the middle of the night, I held her small ribcage and her head in the broad cup of my hands. I felt her sleeping breath and trained mine to match. An image came to my mind of two enormous angels side by side, their wings overlapping and making a nest, and in the nest of their feathers I saw Colby Rose peacefully sleeping. It was immensely calming to picture her rocking softly, their serene, majestic presence keeping her safe. I could even imagine the warm musty smell of feathers: sun, dust, stars.

As the shock loosened, the worry took the form of relentless research and medical advocacy. Long hours on the computer and with books. There could not be too much information because we had no real answers for why any of this was happening. I kept on googling, following threads, looking for answers. There, through the portal of cyberspace I read endlessly about families with special needs children.

The writing by the families all referred to their children as "their angels." There were a lot of quotes from the Bible, computer icons of angels, frantic wings beating, white robes with gold belts. I was incredibly annoyed by this. Angels? It seemed like a narrowing of these kids' reality, a highly selective view that did not honor the depth and complexity of what they, and we their families, were going through.

Another long night, I was imagining again Colby in her angel nest. Angels. The words of parents repeated in the quiet night, "my angel." Why was I so comforted by the image of angels around Colby, but irritated by the idea of that as a much-used label, a description? Alright, I considered, so she is an angel, what could that possibly mean? What would it actually be like if you were given an angel to take care of and raise as best you could?

An angel may or may not speak your language. They would grow to be enormous, or maybe really tiny. They might not learn to use the toilet. It would be difficult to find them the right doctors, the right schools. It would be hard to get them dressed, and there would always be things breaking and huge messes from those enormous wings crashing around, and us trying all we can to adjust our square house to the angel's huge, rounded shape.

An angel symbolizes to me rescue, grace, pure understanding, acceptance, beauty, mystery, and love. Maybe all these parents are on to something, because that description sounds a lot like Colby Rose, and what she brings to our life every day. Maybe it is not a cloying, over simplified label: it is a complex and beautiful reality, our life with an angel.

July 1
At the lake there was a family with a special needs son, a teenager. His parents waded out with him, one on either side. The young man had language and a lot of his physical capacities. His sentences were simple, observant and descriptive. It was a hot Saturday afternoon and the lake was crowded. I watched people watch them and I watched the parents' heightened, guarded awareness of the people around them. His grandparents and other family members looked on from the shore with tentative smiles. Suddenly he yelled, "Here I go!" and dove under the water and started swimming. His parents stayed close, always inches from him. He was so happy in the water and cheered when his parents also dunked all the way under and emerged drenched and smiling.

I could feel how major a presence this child is for each of them. The parents wore their worry, fatigue and expertise very close to the skin. The grandparents on the shore watched with an attentiveness that felt trained on leaping to action often. They looked like their stress was long, and not episodic, and like injuries and accidents happen frequently. They also had the strength and love to give their child what he needs and loves, which today was clearly the water.

I wanted to wade over to them and ask, how do you do it? I mean exactly, how do you handle the produce aisle? How do you sleep? How do you fly? How do you pick him up? Where does he go to school? What are your hopes for the future? How do you decide what movies are ok? Do you ever get to be alone and have a nice date? What about babysitters, how do you find babysitters?

I did not ask anything. I came up against a wall in my mind. This young man was talking, he was a sentient being, what conversation is appropriate right in front of him? Is it ok to really get into details in front of your kids? Is there a time and a place for really talking about your kids? Is it ok to say things that you would not want to say in front of them?

In the end I think I did not ask my novice questions because there is not a moment of their day that is not defined by their son and his unique existence. At the lake, buoyed and free in the water, shining in the sun, he was a child more alike than unlike all the other children there. Moments of joy with your child are precious, a dream to savor, so I watched from my distance and learned, again, the vital lesson: be in the moment, find what your child loves and bring them to that as often and as joyfully as you can.

Elvina Scott is a writer and photographer. This essay is an excerpt from "Epilepsy: A Family Love Story," The full story is available at www.elvinascott.com. Her current project is available to read at: recipestosaveamarriageby.blogspot.com. She is a graduate of Smith College. She lives in upstate New York.