I Missed Some Work, but My Kid is Forever
Charles Wasilewski
I work in corporate communications. It’s my job to let people know about the many good things my company does. So, on a professional level, I was familiar with my employer’s work-life program. Of course, I never expected to need such a thing personally -- that is, not until my son, Michael Christopher, was born. (His name is Christopher Michael now, but that’s a different story.)
We got our first surprise when the obstetrician called out, "It’s a boy." Kathy and I had felt so certain that our baby would be a girl -- parents’ instinct, you know. We hadn’t even chosen a boy’s name.
The second surprise came when the pediatrician ushered me out of the delivery room and said, in his foreign accent, "Baby has webbed hand. We have called geneticist." Another jolt -- an x-ray of Michael’s arm and hand showed that his heart was shifted to the middle of his chest.
Within two weeks, we got our next stunner: Despite a regular breast-feeding schedule, Michael had gone from nine pounds, 10 ounces, to six pounds, 12 ounces, losing a third of his body weight. On a Friday afternoon, the pediatrician told us, "If you don’t make baby gain weight, I will put him back in hospital."
In tears, Kathy went straight to the store and bought formula and bottles. We began feeding him formula with an eyedropper, into his mouth, drop by drop, again and again. By Sunday, I couldn’t wait for Monday morning so I could go to work to escape the pressure. Kathy took Michael to the doctor; she called me at the office to say he had gained 14 ounces in three days. I call it a "miracle" -- that’s a technical terms some of you other parents may be familiar with.
It took only 35 or 40 doctor visits before we had a diagnosis: Michael couldn’t suck, or close his mouth, or blink, or smile or move his eyes laterally because he had Moebius Syndrome, a rare disorder characterized by paralysis of the sixth and seventh cranial nerves. His webbed hand and shifted heart were caused by a related limb and muscle disorder.
We also learned that kids with Moebius Syndrome usually have a lot of trouble forming "bilabial" sounds such as "M," "N," "P," and "B." Kathy and I looked at one another in dismay -- what if he can’t pronounce his own name? That’s when we changed his name to Christopher Michael.
We started him in early intervention. We lived from bottle to bottle, from therapy session to therapy session. Dirty diapers were a joy; they meant he was getting plenty of formula. We listened, we watched, we learned and we played with our son. We had to miss work to do it.
I never would have seen Chris learn to talk, crawl, walk, eat or drink without my employer’s work-life program and my bosses’ understanding. My company let me miss two half-days of work each month for two years. And through the aid of her employer, my wife shifted her work schedule so she was able to bring Christopher to his daytime therapy sessions twice a week.
Christopher was below the lowest percentile range in weight at six months; now, at three and a half, he’s in the 90th percentile. His speech therapy is working; he has no trouble expressing his opinions. Oh, and he can pronounce his bilablial consonants just fine. So not to worry about him saying "Michael" -- we just got the joy of naming our child twice!
I’m grateful for what my company did for my family. They understood that a family problem may last only a short time but a kid is forever.
Charles Wasilewski
Basking Ridge, New Jersey
Charles Wasilewski lives in Basking Ridge, New Jersey, with his wife, Kathy, and son, Christopher Michael, 3 1/2. Charles work in Manhattan for Mutual of New York, where he is director of media relations. Kathy works at ADP (Automatic Data Processing) in Roseland, New Jersey. Christopher attends the Millicent Fenwick Day Care Center at the Somerset Hills YMCA.
For more information on Moebius Syndrome, contact the Moebius Syndrome Support Group, 39521 Rowen Ct., Palmdale, CA 93551; (914) 834-6008.
Published in "Fathers Voices," Exceptional Parent magazine, July, 1996
