CHAPTER 1
March 12, 1992, or What to Expect When Your Baby Doesn't Smile
On March 12, 1992, Amanda was born. The subtitle, "What to Expect When Your Baby Doesn't Smile," was the working title of this book when I started it twenty years ago. I begin this journey with Amanda's birth because, in many ways, that singular event and its effect on all areas of my life and the lives of my family has shaped me more than any other. And since Amanda was always the inspiration for this book, it seems like a good place to jump off.
It was the first pregnancy for Amanda's mom. Only later, when she was pregnant with Emily and Max, did she realize that Amanda's movement in the womb was very limited. Perhaps if we had understood what a baby's movement should feel like, we might have sought medical help and considered terminating the pregnancy, as an amniocentesis would have revealed that Amanda had a deletion of bands 13–22 on chromosome 5. We did not learn about that deletion until Amanda was about four months old. Looking back, I'm glad we didn't know. Make one change in your history and it snowballs into all areas — like It's a Wonderful Life. I would not be the person and dad and friend I am today had I not been Amanda's father. I would not have learned that the only truly important thing is health. Everything else is secondary.
When Amanda was five months old, we received the diagnosis that she would likely be profoundly impaired for life. At that time, we learned that both our families had a relative in the distant past with some sort of special needs or impairment. In the 1950s and 1960s, a child such as Amanda probably would have been raised in an institution. [Children like her were warehoused and hidden, not to be seen or heard, as in the movie Rain Man.] In the 1970s, there was a shift to community-based care for children like Amanda, followed by a shift to homecare in the 1980s and 1990s. There was never any doubt that she would stay with us. But had we known about those "family secrets," we likely would have had an amnio and learned about Amanda's diagnosis. We did have all the testing done with Emily and Max in utero, and those pregnancies were treated as high risk. So although there were untold secrets in both families, I harbor no ill will for not being informed.
The big day came after the actual due date. We were so excited — or at least the one of us who did not have to pass a child through his body was excited — but Amanda refused to come out, and we later understood why. Her birth was induced, and the labor was long. Although I had been to all of the classes and seen the films, nothing could have prepared me for the fact that my daughter was born purplish blue. As soon as she was pulled out, things immediately became chaotic. She was whisked away quickly, with a high Apgar score (a method to quickly summarize the health of a newborn) of something like 9 out of 10. I was momentarily a proud dad, because I thought that seemed like a pretty high score. Since I was always pretty good at tests, I wanted to pass that on to my offspring. But I heard almost no sound from her, not even crying — nothing.
Amanda was taken to the neonatal intensive care unit, where she spent the first week of her life. No one said she would be impaired. In fact, no one at that time said there was anything seriously wrong with her. All they told us was that there was a pinprick-size hole in her lung that needed to heal. Months later, my mom told me that she knew right away something wasn't right with our baby. My mom had four kids of her own, and Amanda was the seventh of the eleven grandkids she would have. She could see it in Amanda's eyes. She couldn't tell us then, but I know her heart was breaking.
Shortly after Amanda was born, I went into a bathroom in the hospital, hit my knees, and through streaming tears and sobs asked God to please make Amanda okay. At this point, I had been clean and in recovery for nearly eight years and had developed a relationship with a higher power of my understanding. I had adapted the daily habit of dropping to my knees and praying to this undefined power. I asked for help to stay clean, to be a good person, to have a purpose, and to help others, and for nearly eight years my life had gone really well. I had gone back to law school and had been a lawyer for almost four years. I had met and relatively quickly married Amanda's mom. My life was moving in the right direction. Now I found myself on my knees in this hospital bathroom, asking for help. Eight days earlier, my younger brother, David, and his wife had a healthy baby boy, their first child. My first thought in that bathroom was Why me? Why us? It did not feel fair.
In a way, I got an answer — but not then, and not the one I wanted to hear.
The Diagnosis
After one week in the hospital, we took Amanda home. It was our first time as parents, and Amanda seemed to be doing all the things that babies do — very little other than sleeping, eating, pooping, and spitting up. She did have some reflux issues, and she was pretty fussy. I learned to calm her down by laying her on a folded blanket on top of the dryer — while holding on to her, of course. I think she loved the movement and the warmth. Right after I got clean and into recovery, I had a job at a daycare center at a local hospital. I helped care for the children of the hospital employees. But while I had some practical experience with toddlers and a few infants, I had no real frame of reference for understanding Amanda.
My mom had worked in a medical office for a group of neurologists, and after a few months, she suggested that we have Amanda examined by a neurologist who specialized in children. She knew one who had recently left the practice she worked for. We scheduled an appointment and took her in. In addition to some level of delay in her development, Amanda also had severely inverted feet that had to be reset, so she was in twin casts for a time. As my memory from that time is flawed, I can't recall whether I took her for vision and hearing tests before or after we saw the neurologist.
I learned early on that Amanda, despite her early positive Apgar score, and all my prodding to prepare her as much as possible, was just not a good test-taker, like her dad was. We never got a positive result...
