I am, at weak times, a creature seeking comfort, trolling the internet at all hours of the night, grasping facts and calling them truth, searching for someone who will tell it straight, hold me responsible, distribute blame. This November marks the ten-year anniversary of one such night for me, one of the nights of searching, submersing myself in every link, crying at the information, overwhelmed by what it contained.
That is true, but it’s not worth celebrating. I celebrate the anniversary of what happened before and after that, how my life and the flooded information stream were altered by new life and poetry, by God and Victoria Crawford, the true stranger to whom this is dedicated.
After an early Halloween party, my almost 10-year-old, dressed like a soccer player, said, “I thought I was going to make it. I thought I was going to make it a whole night without explaining my face.”
But you didn’t, I guessed.
The last minute, he said. Right at the last minute, a bunch of them, they asked me, all at once.
He handles it as we’ve always handled it. It’s a birthmark, he said. He said it to his peers, the children at the party. They moved on. For most children, giving it a name is enough.
His 3rd Halloween, he wanted to be Dora the Explorer’s cousin Diego. We outfitted him with safari clothes and a backpack. He wasn’t satisfied. He needed a mask, he said, or some way of covering his face. “Diego doesn’t have a birthmark,” he said, and who can argue with that. I bought a tube of green concealer and some foundation, and it was gone.
It made me a little nervous, to do this for him. Looking back on it, I don’t know why I felt that way. With or without the concealer, he was a beautiful preschooler.
Trick or Treating 2011 should find him dressed as the Phantom of the Opera. He saw a high school production of it last year, and a teenager he admires played the Phantom. He loved the music and the mystery.
Plus, he explained when he decided on this costume above all others, plus, it’ll be the first time where the birthmark will be an asset. It cuts across his face just like the Phantom’s mask.
On a nondescript morning in November 2001, my husband drove me to the hospital for the birth of our second child. Everything went well, until I saw him for the first time. From a distance, something looked wrong. He seemed more red than our first child. When they brought him to me, I realized that this redness only covered abut half of his face.
Misdiagnosed in the delivery room as a hemangioma, thought to be Sturge-Weber syndrome (SWS), it was explained to us that our son had a port wine stain (PWS) birthmark. We were encouraged, if I remember right, to give ourselves a little time, and then we could begin to explore his needs and treatment options.
Waiting to understand something has never been my strong suit. I like to know, I like to understand, and I like to be able to answer questions. And I had some big ones. I wanted to know what to expect. I wanted to know what to do. I wanted, or maybe didn’t want, to know why—what had I done to cause this.
This last one was on the minds of everyone who met our baby. Perhaps it was genetic, they said. A cousin had a birthmark. Other people waited when they asked, waited for some sort of confession, some sort of story, an explanation. All I had were the words handed to me by the doctor: in utero injury. What had my uterus done, exactly, to cause this?
So on one of those late November nights, after the toddler went to bed and the infant fell asleep, I decided to get to the bottom of it. Now was the time to understand everything about SWS and PWS, the past mistakes and realistic future.
I don’t know how many hours I searched and read. It was so hard to believe that no one had anything to say about real causes. No one knew. I realized that this would never satisfy anyone. It is little comfort, I thought, to stare at a baby who is different and say, no one knows. This means there is no planning, no prevention, no assurances, no guarantee and no blame. The past and the pregnancy would give me no clues. The PWS just is. It just has a name.
The voices of medicine and experience painted a picture of the future. Ongoing CAT scans, laser treatments, the possibilities of seizures and glaucoma and mental retardation, the social stigma: who wishes these things for a child?
Knowledge is not power, not always. I was drowning in it, awash in it, eroding from it, when I found this. Posted on birthmarks.com by Victoria Crawford, written in 1877 by Gerard Manley Hopkins, it’s a poem titled: “Pied Beauty”:
GLORY be to God for dappled things—
For skies of couple-colour as a brinded cow
For rose-moles all in stipple upon trout that swim;
Fresh-firecoal chestnut-falls; finches’ wings;
Landscape plotted and pieced—fold, fallow, and plough;
And áll trádes, their gear and tackle and trim.
All things counter, original, spare, strange;
Whatever is fickle, freckled (who knows how?)
With swift, slow; sweet, sour; adazzle, dim;
He fathers-forth whose beauty is past change:
Thanks be to God for those who echo the interests of the Creator: artists and poets like Gerard Manley Hopkins; reflectors of beauty, honesty, mystery, and joy like my son; and people that pull us out of the careening waters of information onto the dry land, people who care for the truth beyond facts, people like Victoria Crawford. You are named, and yet unknown, and today (who knows how?), that is good enough for me.