Ben and Me_ From Temperance to Humility - Cameron Gunn [79]
All I can say to my past self is: “Watch out what you say.”
The next few months were filled with long nights at the hospital (one of us would always be there while Kelsey stayed in neonatal intensive care), unanswered questions for the doctors (we were awaiting the results of genetic testing), and hope—hope that our very little girl (4 pounds at birth) with the fused toes, crooked fingers, and curly hair would be okay.
Kelsey came home the day before my first Christmas exam. She and I began a pattern of sleeping sitting up (me sitting up, Kelsey lying on my chest) because she couldn’t keep her formula down while lying prone. It made for an interesting exam period and a different first Christmas than we had envisioned.
Finally, the month after Christmas, the pediatrician’s office called to schedule an appointment. The genetic tests were back.
After giving our daughter a quick physical exam, the doctor suggested we sit down (never a good sign) and told us that Kelsey had a rare genetic problem. Her second chromosome was missing a section. The medical term is an interstitial deletion of chromosome 2q. The layman’s explanation was that she had a problem so rare it had no name, was shared (at the time) by only seventeen people in the medical literature, and was likely a death sentence within the first year of life. In that year, he told us, her development would be profoundly delayed, and should she survive, she would likely never advance past one year intellectually.
I remember staring out the window of the doctor’s exam room at the traffic flowing past on the busy street below and thinking, “Look at all those people with nice normal lives, and here I am with a special needs child who will die in a year. It’s not fair.”
I believe that was the one and only time I felt sorry for myself.
Kelsey did survive, though she kept us holding our breath on a few occasions. She developed epilepsy shortly after we moved for my first job after law school, and had her first seizure while friends visited from home. She spent nearly six months in a children’s hospital an hour from the town in which we lived. Michelle lived at the hospital with her during the week, I would drive to visit them at night, then drive home late in the evening to be ready for work the next morning. On weekends we would trade roles. Ultimately, we decided we would have more support back in the city where we had both gone to college. Michelle and Kelsey made the move one week before I did.
On the day before my final bar admission exams, I got a call from Michelle in tears. Kelsey had reacted to one of her anticonvulsants, she was having trouble clotting, and the doctor was asking whether we wanted them to take heroic measures if she were to stop breathing. She wanted me to decide, as she was too upset. As I spoke to the doctor, he suggested I get there as quickly as I could.
For the entire four-hour drive, I expected to be too late. As I pulled into the hospital parking lot, I braced myself for what was to come. But then, through the windows of the entrance of the hospital, I could see my father sitting next to my close friend Stephen. They were talking, and more important, they were laughing. I knew that Kelsey was okay.
And she has been okay for more than sixteen years. There have been health crises, and as the doctors predicted, her intellectual development peaked at the level of a one-year-old. She can’t walk or speak, and she is fed almost exclusively by a tube that goes directly into her stomach. But she is our daughter, she brings us joy, and she is okay.
Life, lemons, and lemonade—Tranquillity is a state of mind.
Every crisis with Kelsey has been like a link in a suit of chain mail for me. When things get tough, I think of what Michelle and I have been through. When I feel down, I remember how hard things have been and how much harder they could have been. Kelsey is my armor. Even when Michelle and I lost our second child less than an hour after her birth, I knew we would survive. Kelsey is my Tranquillity.
If I was ever confident