There is no joy as great, nor terror as deep, as having children. I once believed that after you counted ten fingers and ten toes, it would be downhill from there. The entire cultural machine of childbirth was so focused on delivery as the ultimate outcome that we were woefully unprepared for what would happen next. I remember the first night at home with our newborn baby; once we got the little slugger to sleep I thought, “What have we done?” The reality slowly crept in that the big event was not over; rather, it was just beginning.
By every conceivable yardstick, our son was a phenomenon. He was beautiful—from his platinum hair to his deep sapphire eyes to the perfect little toes on his adorable feet. (Alert: baby feet fetish!) He was physically active, crawling almost immediately, and running by the age of eight months. He spoke early and in full sentences. At the age of four my son’s preschool teacher asked me if I knew he could read. By five he was reading aloud from young “chapter books” like Goosebumps.
Despite all of these indicators, or perhaps because of them, I knew that something was not quite right. Because my son was so verbal at such a young age, I could detect occasional hesitations in his speech patterns. Sporadically, he would stop midsentence and roll his eyes, a gesture that went undetected by his teachers. When I sat beside him in the middle of the night, he seemed to be a light sleeper, opening his eyes in the dark at the lightest touch.
For close to a year I made mental notes of these patterns, afraid to verbalize what I thought I was seeing. Eventually, I shared my observations with my husband. He had not detected any of these affects and assured me that everything was fine. Nonetheless, we tightened the scrutiny of our parental vigil until one day our son nearly dropped his head into his dinner plate. At that point my husband surrendered; our son, we believed, was having seizures.
When I called the pediatrician he laughed it off. He had been seeing our son regularly for years. Certainly he would have noticed if the child was having seizures. Regardless, I insisted that he take a look. I brought in my son well before regular office hours so the doctor could spend focused time with him. After nearly half an hour he shook his head. “I’m not seeing anything, but if you are that concerned you can go see a pediatric neurologist.” He called himself and set up the appointment.
When the day came to see the specialist, I was in Israel on a business trip so my husband took our son to the neurologist. Doctor and four-year-old played together for close to an hour, tossing balls, reading, running, and completing other neurological examinations disguised as games. The neurologist gave him a clean bill of health. “This is a perfectly healthy child,” he concluded.
Long distance from downtown Jerusalem I insisted that my son needed an EEG. The doctor gave my husband a patronizing lecture about hysterical mothers. My husband explained that the doctor answered to a higher authority; he had better rethink his response to “she who must be obeyed.” Thus, the EEG was scheduled for the following Monday. For the procedure, our son would need to be sleep deprived, which meant that he could sleep no more than four hours the night before the examination.
Unfortunately, the day of the EEG happened to be the day after I returned from Israel. Already running on empty and suffering with jet lag, I found myself charged with keeping my four-year-old up all night. At first it was fun, watching inane Disney movies well past bedtime, but by eleven-thirty, my son kept trying to curl up in my lap and go to sleep. That’s when I scooped him up and said, “Let’s go shopping!” Thanks to the 24-hour supermarket, we found a middle-of-the-night playground right in our own neighborhood.
I put my son in a grocery cart and began a slow and painstaking excursion through the market, stopping many times in each aisle to pick up jars or cans for an assortment of ad hoc games. We played “Which food starts with the letter B?” “Which is heavier?” “What color is this?” “Which one is yummy and which one is icky?” “What do Power Rangers eat?” “Is it breakfast or is it supper?” It began as fun, but by the end of two hours both he and I could barely see straight. I began to worry whether I could drive home safely. To make matters worse, I was being attacked by eye daggers from nearly every other person in the store, each condemning me with an expression of righteous indignation for bringing a small child out well past midnight. Raisin that! (see February 17th blog)
Despite public ridicule, I managed to escape any charges of reckless endangerment. We complied with medical instructions, arriving at the hospital the following day suitably sleep-deprived. But there was something about the austerity of the hospital procedure room that set off all of my son’s danger instincts. An EEG is non-invasive, but it requires a scary looking machine and the attachment (with paste) of dozens of electrodes all over the scalp. The clueless tech attempted to take my son from me into the room; it was only after my insistence that she allowed me, against policy, to hold him. Getting down to business, she then tried to attach the many leads, but he was too terrified to let her touch him. Noting her growing impatience, I suggested that she put an electrode on Nana, my son’s stuffed gorilla (see January 31st blog). She gave me one of those “you’ve got to be kidding me” looks. “If you want to get this done,” I said, “you’ll have to think more like a mom.”
Reluctantly, she sacrificed an electrode to the stuffed animal, taping it to his head. My son looked at it curiously. I asked him if Nana was scared. He shook his head silently We explained that we needed to do the same thing to him. It wouldn’t hurt, but the paste might tickle a little. To prove the point, I touched it to his hand. He then sat still like a trooper while she parted his short hair and mapped the electrodes across his scalp. Again, she tried to make me leave the room, saying that he had to go to sleep now. I looked around the room and at the hard examining table with paper pulled across it. I assured her this would never work; instead, I offered to lie with him in my arms on the table. “I guess,” she relented. She was beginning to give in to our quirky demands, but she warned me that if he did not go right to sleep she would kick me out. He was asleep before the lights went out.
Instantly, the electrodes began to dance in unison—all except the one taped to Nana’s head, which flat-lined across the page. “He’s having a seizure,” she said. A few seconds later, the electrodes again traced their telltale three-peaked spikes. After only a few minutes, well short of the typical forty-five minute examination, she flipped on the lights. “We’re done,” she said, explaining that he had had enough seizures within ten minutes to confirm a diagnosis.
That evening the pediatric neurologist called. “Your son has epilepsy,” he said, confirming what I had suspected for a couple of years. “But,” he continued, “I want to know how YOU knew.” He explained that he spent close to an hour interacting with my son and had been unable to detect anything upon physical exam. “I would have bet money against his having seizures,” he said.
“When it comes to children, I said, "never bet against a mother. Moms know far more about their kids intuitively than you will ever know by the book.”
Today my son is in his twenties. As a parent, I wish so much that I could fix this for him. Instead, he has taught me a lesson in resilience and courage. He is incredibly compliant with his health rituals. He counsels and mentors young kids with epilepsy, showing them by example that it is possible to transition to college life, to play sports, to travel, and to be independent. Although he hates having epilepsy, he has come to accept that everyone has a burden they carry through life. His is a demon he knows.
Tomorrow's blog: Evolution and Intelligent Design
Tomorrow's blog: Evolution and Intelligent Design
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