A Penguin in the Orchard

18

I didn’t know if I was going to write about this, or even if I should. But, there’s a big deal in my house today, and it’s a story I need to tell.

My daughter turns 18 today. Parents and children reach that milestone every day. Our experience with parenthood has been a bit different than most, though to us, it’s the only experience we’ve known. I think it’s safe to say that it’s a bigger milestone in our family than almost any other I’ve known.

Our daughter has Aicardi Syndrome. It was almost 19 years ago, during the course of a routine pre-natal sonogram, that an OB/Gyn in Arlington, Texas grew very quiet. I’ll never forget that silence, or his valiant attempts to downlplay what he’d seen - a large accumulation of fluid in the left lateral ventricle of our daughter’s brain. He referred us to the University of Texas at Dallas for further assessment and a higher-resolution sonogram.

While his silence and serious mood was unnverving, it didn’t compare to the nine words a week later in Dallas.

“It’s unlikely that this child will live two weeks.”

Or the follow-on to that horrific phrase.

“You’re at twenty-two weeks. You have two weeks by the laws of the State of Texas to terminate this pregnancy. Given the prognosis, you should consider it.” I can still hear the hum of the flourescent lights in the silence of that sterile office.

On June 20, 1988, there were less than 200 documented cases of Aicardi Syndrome worldwide. My daughter’s diagnosis wasn’t officially made until nearly a week after she was born. During that week, doctors used the best of the 1980s pre-Internet computer technology to search for a diagnosis. By then, she’d already undergone six hours of surgery at two days old to remove a cyst from the choroid plexus region of her brain. She was seventeen days old before she finally came home.

Less than a year later, doctors inserted a ventricular peritoneal shunt to relieve a sudden and life-threatening buildup of fluid in her brain. Little more than a year after that, the shunt failed, requiring an immediate replacement. A few weeks later, that shunt, too, failed, requiring yet more surgery. We’d moved to St. Louis by then, and the procedure was done at Barnes-Jewish Children’s Hospital. The first few years were, to say the least, touch and go.

In the intervening years, she’s endured orthopedic surgery to correct the problems that arise when children don’t run and play and bear weight while growing up. Seven weeks in a lower body cast after her hips were realigned. Six weeks in a leg cast after a procedure to lengthen an achilles tendon. And, the day last summer when she “coded” in the middle of dental surgery, the result of anaphylactic shock from a previously unknown latex allergy.

Through the years, it’s been my role to keep food on the table. In some ways, it’s been a much more traditional family than we ever expected. My wife, with a degree in Journalism and Mass Communication from the University of Iowa, has dedicated every second of her life to our daughter’s comfort. The fact that, today, our daughter is seventeen years and fifty weeks older than any medical professional expected her to live is entirely to my wife’s credit. I’ve been able to keep a roof over our heads and a full table, with varying degrees of success. Within that shelter, my wife has single-handedly created the environment that’s allowed our daughter to live and, as best she can, thrive. That’s the important job, and I take no credit for it.

In many ways, the life we live today can be credited directly to our daughter. I was twenty-seven when she was born, but a young, young twenty-seven. I thought I understood responsibility and took some measure of pleasure in scoffing at it. I accurately fancied myself a rebel, bent on blazing my own trail in the least conventional way possible. Conventionality was fine for some, but it wasn’t for me.

Like many parents, my life changed entirely in the few short minutes it took to deliver our daughter. The truth is, I was so deeply irresponsible that it probably took a situation of the magnitude of our daughter’s to jolt me from my path. In some ways, I still scorn conventionality - I am a longtime Linux user, after all. But, from the moment I saw her face in the delivery room, I understood that there are far more important things in the world than my view of it. I’ve trod a much more conventional road since than I ever imagined I would. Left to my own devices - without the responsibility to our daughter - I’m certain the quality of our life would have been much lower.

We’re no different than many parents in many, many ways. Those who are focused on the health and well-being of their children know better than to take things more than one day at a time. As those twenty-four-hour chunks turn into months and years, the value of the individual days tends to blur. At times, our days have done the same. We just have many more reasons to hold them precious. We don’t have to assume their value. We’ve been shown.

We’ll celebrate with family this weekend. I know exactly the celebration that will take place today. She’ll spend some time in summer school, then return home to sit with her mom through the evening, as she’s done for eighteen years.

Proud parents sometimes call their children angels. We understand.

[tags]Aicardi Syndrome, children[/tags]