Chapter 1, Part 3

My daughter, before her first dance recital

Here is the third installment (you can catch up on one and two, here). After dealing with some emotion, we are buoyed by the immediate support we received, our first victory over expected delays, and our daughter gets named.

Crying was not something we did very much in my family. As a young boy, my eyes would well up when I would get angry and become frustrated at not being able to fire back with an equally biting insult to the teasing from my brothers or our friends. The tears would only add fuel to the name-calling, adding “sissy” and “baby” to it. Sometimes, the verbal sparring would escalate to actual physical scrapping. My mother, having been raised an only child after her older brother drowned at a young age, had no parenting precedence with young boys wrestling. She would defer to my father, whose mantra was “boys will be boys.” While trading insults and punches, crying never improved your situation. The notion of having a “good cry” was foreign to our household. There simply was no such thing.

This made what I later learned was the grieving of the child we thought we were going to have all the more painful. I lacked the emotional tools and would find myself embarrassed when reduced to blubbering while a loved one, like my older brother, tried to console me over the phone. When we returned home, I would feel the tears coming on, get up from wherever I was sitting, and go into a dark room so no one could see me and I couldn’t catch a glimpse of myself.

Amidst all these ugly tears shed during those first couple of weeks, the sadness should not overshadow the support and comfort we immediately received. It seems this is the nature of how our human brains evolved. While it is nice to remember good things, it can be a matter of survival to definitely remember bad things, e.g. a sunset may be pretty, but sabretooth tigers are not to be petted, particularly after seeing what one did to your cave mate. Political campaigns rely on this wiring of our brains. It’s why negative ads work. One media consultant explained: you may recall someone saying something nice about a certain restaurant, but you’re definitely more likely to not just remember a negative review of a restaurant, but also not to visit that restaurant, yourself.

The comfort and support began almost immediately. By chance, the seminarian who worked at our church was doing rounds at the hospital. She was the first person besides us and hospital staff to hold our daughter. Seeing how she cradled and cooed to her, was the first moment that our daughter was a baby first, and that we’d address what her having Down syndrome meant later.

I called my mom and asked her to tell our preacher, Ken Hockenberry. Ken had married April and I, as well as officiated both my brothers’ weddings. His wife, Judy, our church’s former co-pastor, had eulogized my grandmother and my father. Suffice it to say, Ken was tight with our family. My mom arrived at our hospital room, with Ken showing up almost immediately after her. Both talked of how cute our little girl was, and did so without trying to overcompensate or ignore the fact that we were still reeling from the suspected diagnosis.

Upon seeing my mom, having just moments before become a parent myself, I reverted to being her youngest child, seeking comfort in her arms, and weeping into her shoulder. Mama is about half-a-foot shorter than me, but is sturdy in temperament and stature. She took my weight and my sadness. My parents had lost their first son before I was born. Indeed, my twin and I exist because of their comforting of one another months after Dale died from an undiagnosed kink in his intestines that burst while he was napping, never to wake again. Her soothing words were informed by her own knowledge that worst things can happen to your child.

April’s family all lived out of state, having immigrated from England in the 1980’s, with most settling in Arizona and her mom having relocated with her stepfather to outside of Mobile, Alabama. How lonely of a time that could have been, and was to some extent, for April to not also have her own mom there to care for her. The phone calls with them were awkward. The distance and having lived mostly in a society where Down syndrome was rarer and less accepted, caused them to reach for the right words. Her father kept saying “I’m sorry.” Her grandmother expressed tremendous sadness, only making us sadder. Both would become two of our daughter’s greatest cheerleaders and fans as she got older. But, at the time of her birth, “Down syndrome” took priority over all other qualities they would cherish about her.

I mentioned the phone call from my older brother. At the time, it was one of the things that got me back on my feet. Pat and I definitely have a big brother-little brother dynamic. He would beat my twin and me when we would play him two-on-one in basketball on our driveway. In high school, Pat bulked up through disciplined weight training making him impossible to take down in our regular brawls. He was a senior when I entered as a freshman. He was dominant in every way. Which made his expression of empathy and support all the more meaningful. But, he said something at the time, meaning it in the best way that came to irritate me in hindsight.

Pat had gone to medical school and was a practicing orthopedic surgeon when our daughter was born. In his training, he mentioned how he had cared for some patients with Down syndrome. He talked of how sweet and even funny they were. These all buoyed my spirit. Then, again doing as best he could and meaning to love us as much as he could, said, “Well, and you know, you and April aren’t like me and Missy [his wife]. You all have always liked pets and caring for things. And, your daughter will always be there to be cared for.”

After we had left the delivery room, having stayed in there for probably only a few minutes, but would seem like a moment out of time from the crying we both did, we were taken to our hospital room. Before all the visitors showed up, the nursery staff brought our daughter to us for her to attempt to nurse for the first time. The lactation consulting nurse mentioned how some children with Down syndrome struggle with latching on and with sucking with enough force to draw the milk. Patiently, committedly, April cradled our girl, offering her breast, stimulating her mouth with the nipple and, after some coaxing and tips from the nurse, our baby latched on and began to nurse. This felt like our first victory over the associated delays with Down syndrome.

We had not decided on a name at the time of our daughter’s birth. Like all expectant parents, we had bandied about some options, but never settled on one. Had she been a boy, we knew we would’ve named our child after my departed father, my brothers having failed to “put the stem on the apple” themselves, having only daughters. But, being a girl, the only request I had was that she take my maternal grandmother’s name, Naomi, as her middle name. We did not intend to call her that, so our daughter’s name was still to be determined. Once in our hospital room, as we held her after she had nursed, the staff asked us what name should go on her birth certificate. Days before, April had suggested a name based on her background as an English major. Now, having definitive proof that we were, indeed, having a daughter, and having laid eyes on her, we both agreed that the name fit: Juliet.