Tuesday, September 1, 2009

In the Beginning

When my husband and I got married, we attended a Pre-Cana conference in the tradition of the Catholic Church. I remember that the odometer of our 1978 V-6 Mustang turned 100,000 miles on the way there. I remember that the facilitators were actually pretty good and they suggested that each couple save their answers and discuss them again one year after their weddings. And I remember that one of the issues we were asked to talk about that day was how many children we wanted. My answer was one; my then-fiance's response was zero to two.

We were married for about three years before the subject came up again. At that time, we were living in New York City, but we frequently spent weekends in the Berkshires, staying in a small apartment we owned in Lenox, Massachusetts. We used to say we could feel the stress of the City melt off our shoulders with each mile we put behind us on any Friday night. It was there, sometime in the summer or early fall of 1989, that we opened the discussion of children. At the onset, my husband asked how sure I was that I wanted children and I replied, "About 90-95%. How about you?" He said, "I don't really know; maybe 80%."

We talked about it for some time, and then he said, "You know, I think I'm about 95% sure we should do this." I responded, "I'm about 85% sure." Nevertheless, the journey began and the home pregnancy test I took on the following Valentine's Day was positive. We learned a lot about high-risk pregnancies (I would turn 37 that fall), amniocentesis (my age led to a considerably higher risk of Down's Syndrome) and genetic counseling (belatedly, we learned that my husband was a carrier of the Cystic Fibrosis gene and my genetic sample was inconclusive for CF). But our son was born with minimal trouble, an easy delivery. Our chosen pediatrician, an expert in the field of cystic fibrosis, looked at him on his first exam and was 99% sure he was fine. Six weeks later her hunch was confirmed by a negative test for CF.

Life was good for four perfect months... until he had his first seizure. With a diagnosis of "seizures of unknown origin," he returned from a four-day hospital stay on Phenobarbital. Over the next sixteen months, the dosage was raised and other anti-seizure medications were added; nothing fully controlled our toddler's "wiggling" as my husband and I had come to describe it -- as opposed to the all-out, eye-rolling, losing-consciousness seizures he had as an infant. We left New York when he was about 19 months old and moved to Portland, Maine. We achieved two triumphs during our four years in Portland. First, our son's new neurologist was able to more specifically diagnose his brain wave irregularity and switched him to a new medication, Tegretol. To this day, he remains on that, at about the same dosage, with very few breakthroughs. The second success story was our decision to have our son evaluated for speech and other relatively minor developmental delays. Through this initial assessment, we found the best possible day care center for him and all the services he might need. This proved to be the foundation for the extraordinarily effective Individualized Education Plan that was implemented and executed by his phenomenal grade school and high school teachers. Of course, at 18 and in college, he's pretty much got to fly solo now.

2 comments:

Sharon said...

Hi,

My name is Sharon Ray and I am the assistant editor of Cysticfibrosis.net. I am contacting you today in hopes of developing a relationship with your website; we have seen your site and think your content is great. Cysticfibrosis.net offer a free informational resource to both the general and professional public on this terrible disease.

I hope you show some interest in building relationship, please contact me at sharon.cysticfibrosis.net@gmail.com.

PatK said...

I am so glad that my son is "only" a carrier of CF. Although sometimes it is harder to deal with a hidden learnings disability than it is a physical disability. We are great supporters of Cystic Fibrosis organizations. I'll be in touch, Sharon!