Recently, two of my most beloved teachers came to our continuity clinic as Mrs. Melendez brought in her daughter, Maria, for her annual physical (not real names). I have known the Melendez family for nearly the entire 18+ years I have been at this clinic, at first taking care of their four older children who were at that time in early middle school through high school. At one of the children’s visits, the parents stated that they had an announcement: they were expecting again. I, of course, started to congratulate them but felt that something was awry. “Due to my age, I am at a higher risk, you know … and our baby has trisomy 21 …” I wasn’t sure how to respond, so mom continued: “I know she will be imperfect, but she is a gift that we have gotten. We will love our little Maria.”
Shortly thereafter, Maria entered the world and, as expected, had her fair share of complications related to her genetic disorder. I remember visiting her after she had heart surgery and again after her G-tube placement due to poor weight gain and feeding issues. We also saw her often in the clinic (having an open-door policy and seeing her whenever there were concerns … as we do for all of our more unstable patients), and I got to personally see the struggles the parents were going through: the nights with little sleep, the stays with her at our hospital, and the struggles to teach her how to eat well. Yet despite all this, Mrs. Melendez always displayed a strong underlying peace and joy that was hard to describe. “I know she is not perfect, but we will get through this. She is our little Maria.” This was life lesson #1 I learned from this family: “Never underestimate the love of a parent for their child.”
During her toddler and early school years, Maria was in various therapies such as speech and occupational, and at home, her parents, and especially her older siblings, spent time with her working on her skills development. With time, you could see real progress, and she quickly changed to a happy, bouncy, feisty little kid who would greet everyone in the clinic with her big toothy smile. We became particularly close, and I always got a “Hi Doc” followed by a surprisingly strong bear hug each time. Maria wanted to do things with her peers, and between a sports team that her dad coached and after-school activities that her older sisters ran, she was quite active. All this despite being the shortest in the group and definitely looking different. I worried about how Maria was doing with these activities and wondered if she was being teased or excluded by classmates or teammates, but Mrs. Melendez repeatedly stated, “it doesn’t seem to faze her, and the kids who are her friends love her as is.” She was particularly loved by her new nieces and nephews as well. This was life lesson #2 that I learned: “Never underestimate the resilience of a child.” This applies to all children. When you are routinely the smallest person in the room, such as a 2-foot-tall toddler tends to be, you best be feisty and resilient!
As Maria got older, her parents realized that she had a knack for art but, with her fine motor issues, needed to develop skills with more gross motor techniques, such as using sponges and blocks to draw. The family wanted her to share this talent, and she gladly volunteered with her parents at a local nursing home. With similar fine motor issues as Maria, the seniors seemed to bond with her and gladly joined her block/sponge art projects. This led to volunteering at Special Olympics events, where she shared her talents with the participants waiting to compete. She also brought several of her creations to the clinic, and they were quite good. (I still have one in my office.)
As importantly, Maria was changing, as all children do, becoming a unique human being with her own talents and personality. While at prior visits, I found myself focusing on the growth curves or discussing the therapies she was enrolled in, during the middle school years, I became focused on just enjoying time with Maria and watching the interaction between her and her amazing parents.
I realized that over the years, in my mind, she went from being “that Downs kid” to “that child who has trisomy 21” to “Maria who has trisomy 21” to “that cool kid who I love to see in the clinic who is named Maria.” I learned this life lesson #3: “Every person is unique and has a dignity that needs to be afforded them because of who they are and not because of who I want them to be or expect them to be.” She was living proof that someone who didn’t match up with many/most of the items that the world considers “perfect” was still amazing by just being herself.
At this most recent visit, she lit up the clinic with her personality, as usual. After the resident presented her case to me, I went to the room with the after-visit summary, eager to see my friends all the while also preparing my rib cage for the soon-to-be-delivered powerful bear hug. As I entered, Maria jumped off the table. “Hi Doc,” quickly followed by the expected hug that literally took my breath away. After taking a few moments to get my wind back, I did the usual sticker exchange with her. As she bounded out of the room into the exit hallway, I looked at mom. Now older and less energetic (like me!) but still with that inner joy that I truly admire. “You have quite the daughter, Mrs. Melendez,” I stated. She teared up and replied: “I know. She’s perfect.”
Alexander Rakowsky is a pediatrician.
