I turned off “Jingle Bells”. “I don’t know if I can do this,” I said aloud.
“Yes, you can, old man,” Stinky Bear told me. “Yes, you can. Just hold on.”
“This is a big mistake. I don’t think I can do this.”
“You can do it. Just take the next step. You’ve been doing this for nineteen years, old man, nineteen years.”
*
Mary suspected that something was wrong with Ethan around nine months. He didn’t sit up, and he didn’t reach or grab for things. Absorbed in my job, teaching two AP English courses, finishing my book, and contending with two young daughters, initially I paid little attention to her concerns. It wasn’t until our pediatrician recommended some tests be taken, including the MRI, that I took notice.
The tests results surpassed our worst fears: global brain damage brought on by a rare chromosome disorder. His primary diagnosis was Trisomy 9 Mosaicism syndrome which meant the ninth chromosome appears three times rather than twice in some cells of the body. (Later he would later also be classified as mildly autistic.) At that time, specifics didn’t mean much to me. All I knew was that my only son, my youngest baby, would never be normal.
Instantly, our lives transformed into an exhaustive string of sleepless nights and stressful days, punctuated by an array of neurologists, therapists, and geneticist meetings. Mary was constantly doing research, constantly looking for information on his conditions, hoping for some good news, for some light. I, on the other hand, stumbled through, in denial, overwhelmed and disbelieving. Things like this happened to other people.
The first three years were probably the worst, since every missed milestone was cause for sadness and stress. He didn’t walk, he didn’t talk. He didn’t play with any toys. He just cried and stared at us with helpless, accusing eyes.
Ethan took his first steps when he was three and a half, a glorious day in the Nichols house. It was Valentine’s Day, but more important, an overachieving Illini team was beating a Bobby Knight–led Indiana at Indiana, when I glanced away from the TV to see Ethan smiling while he pulled himself up from the couch and then proceeded to let go.
“Daddy,” Karen whispered.
We were in the family room, and we all just stared in wonder as he took a few drunken steps. Finally, after he had managed a smooth landing, sitting softly down in the middle of the floor, Mindy broke the silence by saying, “Hey, Ethan, go get me a Coke.”
The War Years came next—years when the air raid sirens blared, when you grabbed a helmet and jumped into a trench the second you entered the house, when smiles and laughter were rationed like sugar and bits of chocolate. Really sucky years. This was when he was about five and six. This was when the mood swings began.
There was simply no predicting him. The smallest thing—an unclosed dresser drawer, an errant thread hanging from your sweater, a ringing phone—could send him into a rage. Bedtime became a terror; he never wanted to sleep. Consequently, we took to locking him in his room at night. When he broke the lock, we fixed it; when he broke it a third time, I held the door shut until he grew tired of pulling on it. This could take up to an hour every night.
When he was around six, things took a turn for the better when, after years of speech therapy, and years after we had given up hope, he defied all odds and started speaking. Not well and not often, but he eventually managed two-and occasionally three-word sentences, each utterance an achievement. “Leave. Now.” “I. Want. Milk.” Once he could articulate some of his needs, his behavior improved, and the tantrums became less frequent, less pronounced. After years as shut-ins, we could finally take him places: out to eat, shopping, to the pool. At restaurants in particular, he was, for the most part, well behaved, polite to the point of debonair. He would say thank you and please, pretend to study the menu, and hold the door open for other customers. Waitresses, waiters, hostesses, and even cooks took a liking to him, and as a result, we spent an inordinate amount of time and money eating out.