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 from any test she took. The neurologist picked her up, gave her a little shake, shined a light, and rang a bell. Several days later, we received a letter from him explaining that Amanda would be substantially impaired physically and mentally for her lifetime. I could not believe he could make such a diagnosis from such limited examination and interaction with Amanda. I was quite angry with him, and I let him know it. A few years later, when it became clear that his diagnosis had been spot on, I wrote him a letter to make amends for my initial reaction. He was obviously good at his job. Because I could not handle the message at that time, I became angry with the messenger.
We eventually ended up in a geneticist's office for some chromosome mapping and testing so we could figure out what had happened and where it had come from. Those tests revealed that Amanda was missing those few numbered bands on one of her number 5 chromosomes, and it had nothing to do with me or her mom passing anything on to her. The geneticist explained that while these types of chromosome deletions often cause miscarriage (God's way of handling things), some kids sneak through. It was not surprising to me that I might have a sneaky kid. I went to the university medical school library and looked for any information about this particular deletion. This was before the widespread use of smart phones and computers and Google searches. I was able to locate only sixteen references to similar cases worldwide — and in all those cases, the outlook was grim. Most of those people had serious issues with vision, kidney function, development, and more. It seemed we were in for a long and difficult ride.
I Will Keep My Shoes
One day, as I was getting into an elevator in my office building, two young mothers were bitching loudly about how difficult it was to have a toddler and how tired they were from chasing their children around and how exhausting it was. I couldn't take it. I blurted, "Be grateful that your child can walk and talk and run ... I have one that can't" as I exited the elevator. I have always felt bad about saying that to those women. I was feeling negative about my situation and projected it onto them. Everyone is entitled to their own "stuff," whatever that "stuff" turns out to be. One of those things I heard in recovery is that if a group of people form a circle and put their shoes in the middle — and those shoes represent the issues and problems and challenges in their lives — and each person was given the opportunity to retrieve any pair of shoes — most would take back their own pair. The lesson there is that we all grow comfortable with our own "stuff," no matter how difficult it is, and we fear the unknown that would come with taking on someone else's "stuff." That was the one and only time I lashed out at someone I did not know in that manner. In recovery, one of the steps instructs us to make amends to people we have harmed. I make amends to those two strangers by committing to never repeat that kind of behavior.
One of the smartest choices we made was refusing to make Amanda's disability the focus of our family's existence. I did get to know a number of families where it seemed that everything those families did centered on the special needs child. In truth, at times we did decide to exclude Amanda from activities, because it was just easier. We also felt it was unfair to our other children for Amanda to always be the focus. When we went on vacation, sometimes Amanda came with us, and sometimes she stayed behind at home with a caregiver. Bringing Amanda on a plane was no easy chore. I would have to bring her bulky wheelchair/car seat and arrange it in a seat on the plane and then bring Amanda on the flight.
There is one place, though, where there was an advantage to having a wheelchair-bound child — the happiest place on earth, Disney World. They are welcoming and accommodating to special needs families. On most rides, we were able to enter through the exit as a family and not wait in line. On many of the rides, I would have to take Amanda out of her chair and hold her in my lap. It was disheartening, however, to see how many people faked an injury or a disability to secure the use of a wheelchair in order to take advantage of this special arrangement for children like Amanda and their families. I was disgusted, just as I am when I see an able-bodied person get out of a car in a handicapped parking spot with a special parking placard. On those few occasions when I have opened my mouth to ask what the person's disability was, I have usually been called some choice name or another or hit with a string of profanities. I have stopped confronting people, but I have, from time to time, left a note on a windshield chiding a person for using a spot that someone else might need. I usually ended those notes with "Karma is a bitch."
It is unfortunate how easy it is (at least in Florida) to get a doctor to sign the form allowing someone to get a handicapped parking sticker. When Amanda was really young, we had the right to and did use handicapped parking spots. I found myself acting like a hypocrite however, when I was in a rush and I would use a handicapped parking spot without having Amanda in the vehicle. When Amanda was four or five, I decided not to use those spots anymore ... and I never did again (except maybe at Disney World). The truth is that no matter where I parked, it was no more or less difficult for Amanda, because she was not walking anyway. It would have been helpful at times to use the special parking spots, not because of the closer proximity to wherever we were going but because the width of those spots made it easier to maneuver special seats or wheelchairs in or out of the vehicle. But I learned to manage just fine without them.
I had been a recovering person for over eight years when we learned that Amanda would be significantly mentally and physically impaired for her lifetime, and at that point I had forged some amazing relationships with other people in recovery. Among the many things that I learned from working the "twelve steps" with a sponsor was how to be a real friend — honest, loyal, and supportive. I thought I had formed some really great friendships, but I learned that while I had become a good friend to others, not all of them turned out to be a great friend to me. A number of us had gotten married and were starting families. Perhaps it was partly because Hurricane Andrew had scattered everyone, but a number of those "friends" were nowhere to be found in my time of need. It seemed that some of these "friends" were just like the uninformed people I ran into in public in the early years, who thought their precious children could catch something from Amanda.
Heaven's Very Special Child
So here we were: our special family.
There are so many obstacles that a special family has to face. One of the hardest, at least early on, is going out in public with your child. Others quickly recognize when a child has special needs. I found it most interesting when a younger child would look in the baby stroller and take in Amanda, who had casts on her feet and was staring off into the distance. That child would invariably (and understandably) start firing off questions. I believe that children have a natural curiosity that should be nurtured and not stifled. So I found it both heartbreaking and frustrating that the mom or dad of that child would invariably grab the kid's arm and yank him or her away. I know that some of those parents did not want their children to disturb us, but at times it seemed that some of these "adults" thought that if their children got too close, they might somehow "catch" whatever Amanda had. Of course, it is ridiculous to have to point out that developmental delay and physical impairment cannot be spread to others. If moms and dads could just allow their curious kids to ask whatever they were wondering about when they saw a special child, special families like ours would have no issue patiently answering the questions (I know I wanted to), and those children, thanks to that early education and exposure, would likely become more caring and empathic young people and adults.
It was not all negative, though. I also met so many kind, caring, and wonderful people. Often a person I met would disclose that they also had a family member with some level of special needs. One thing I learned from being both a recovering person and a member of a special needs family was that nearly everyone is either related to or knows both a recovering person (or a person who likely needs recovery) and a person with special needs of some kind.
The events of those early years with Amanda remain blurry. I know that at one point she was hospitalized (maybe even twice) with a urinary tract infection. It was during one of those hospitalizations that we realized the highly recommended pediatrician we were using was probably good for relatively healthy kids, but his approach with Amanda, and our situation, was off-putting. We switched to another pediatric practice with warm, caring, and knowledgeable doctors and nurses, and we stayed with them for all our kids. I also recall that Amanda had kidney reflux, which was caused by a backup of some kind, resulting from a missing flap on one of her kidneys. She had surgery to build a new flap, which fixed that problem. Amanda had a series of special chairs and wheelchairs and seats, none of which really suited her needs, because Amanda was hypotonic, meaning she had extremely reduced tone, especially in her upper torso and neck. When trying to sit up, her head would always flop to the left or right. In order to feed her in those early years, we needed to hold her head up with one hand and spoon feed her with the other. Most of Amanda's time at home was spent lying in a padded area on the floor. Over time, she figured out how to move around, and on more than a few occasions she was not where he had left her. Her favorite toy was a metallic gold pompom. Amanda would put a death grip on those shiny long strands, and at times it was difficult to take the pompom away from her. Because of her limited vision, the shimmering likely attracted her. In many ways we lived from one difficulty to the next, never really knowing what was around the corner. It was hectic and scary, but there were also events that filled us with hope and love.
