We all know words are powerful things. My start to being a parent was strongly affected by the words, “Your daughter has Down syndrome.” When Annie was born and diagnosed with Down syndrome, my world felt as though it had been flipped upside down. I was overwhelmed with grief, fear, and insecurity. To top it off, I was thousands of miles away from “home.” We were living in Rome, Italy at the time and even before receiving a diagnosis, the language barrier had proven immensely challenging, especially when dealing with medical professionals throughout my pregnancy.
And so in those first hours, I cried and mourned over her diagnosis. Then those first hours turned into the first days, and I became terrified and immensely frightened of what this meant for her and for our family. Would I be able to give her everything she needed? Would she need heart surgery? Would she survive? Would she have a future? And how could I possibly even begin to face this in a country where I couldn’t even speak the language?
Then those days turned into the first week, and I did what anyone wanting to empower themselves in a difficult and challenging situation would do: I began to research. In the first two weeks of Annie’s life, I read five books about Down syndrome. I kept a yellow legal pad next to me at all times, and as I read the words on what caused concern or raised a question about something, I wrote it down. I became obsessed with research and completely determined that I would learn everything there is to know about Down syndrome. I would be aware of every risk, every illness she might get, and make sure I was prepared for every possible outcome.
We were not prepared when Annie was born a month earlier than expected, and we had not even chosen a pediatrician. After her birth, the hospital where she was born had called in both a pediatrician and a geneticist, both of whom spoke English to varying degrees (but with having an OB who didn’t speak a word of English, this was a great relief). When we found out the geneticist was also a pediatrician, we chose him thinking that he must be the closest to an expert on Down syndrome – who could also speak English – that we were going to get. And I was convinced he was going to have every answer to every question on my big yellow legal pad, which had already added up to four full pages.
So when Annie was just two weeks old, we bundled her up, grabbed the diaper bag and my big yellow list of questions, and headed for her first doctor’s appointment. The visit was as typical as I can imagine any first doctor’s visit would be for any newborn infant. He weighed her, measured her, and examined her tiny eyes and ears. We went over her feeding habits and he wrote a prescription for therapies. He told us he was very happy with her progress and then asked if we had any questions.
And so I reached into my enormous diaper bag and grabbed my big yellow notepad. As I lay the pad on his desk his eyes widened. My words of concerns, doubts, and questions came out in full force: “How often will we check her heart? When will we test for celiac disease?” But with extreme patience and professionalism, he began answering my long list of questions, but as he answered each question he kept glancing at my never-ending list.
When I got to the third question, “When do we test for leukemia?” Dr. Tarani took off his glasses and took my hand. He said in his broken English, “Signora, if you want I will stay with you all evening and answer every question on your list and then you can leave and find a new pediatrician for Anne. But if Annie is going to be my patient I have one rule: ‘We never say the words Down syndrome.’” At first I was taken aback and pretty confused by his comment. But then he continued and said, “This list you have researched of possible health issues – low muscle tone, leukemia, hypothyroidism, delayed development, and all 300 other possibilities – any of my ‘typical’ patients without Down syndrome could have each of these issues, too. Your daughter is not Down syndrome. It is only a small part of her, like her beautiful blue eyes. So we just say “Annie.” Not Annie with Down syndrome. We just look at ANNIE. And we deal with each health issue as it appears. She will never, nor will any individual with Down syndrome, ever have every single health issue on this list. She will maybe have four or five. And we will watch her and do all the necessary tests because she has Down syndrome when it is time for those tests. But we don’t have to make everything about Down syndrome, we don’t have to always say Down syndrome because she is Annie first. And she will be able to do so much, just like all children, in her own time. And that is what is the most important to focus on, not the challenges she will MAYBE someday face.” He went on to say that sometimes looking for all the things that MIGHT happen only add unneeded stress and worry. And that is not worth focusing on until there is something in front of us to worry about.
When Annie was two weeks old, her doctor lifted a huge weight I had been carrying since her birth. Because of his choice of words, because he saw Annie as Annie first and not a diagnosis, I was able to do the same. And since that first appointment, he gave us the incredible lesson to live life a day at a time; not to worry too much about what the future will bring. This has been so wonderful for our Annie and, more importantly, for myself as a parent. And now Annie is the one teaching me to slow down, to live in the moment, to take things one step at a time.
When we are faced with any health issue, we look to our medical professionals for guidance. We crave their words of wisdom, their answers, and their advice. This puts them in a powerful position! Doctors’ words can affect our outlook, our parenting choices, and our coping mechanisms. Since we have returned to the States, we have had many encounters with doctors that have been wonderful… and some that have not been so great and more focused on our daughter’s diagnosis. Anytime I can, I share the story of Dr. Tarani as a way to reframe the way we talk about Down syndrome. By using words like Dr. Tarani’s, we not only remind ourselves of the many blessings we have received by way of those people in our lives with Down syndrome, but we also educate those people we encounter that Down Syndrome is not always accurately portrayed in our culture.
I hope you will join me in this educational endeavor and that one day, every doctor will be able to focus more intently on the positive and encouraging words to share with families facing a diagnosis, whether prenatally or at birth. And mostly I am so grateful for our time with Dr. Tarani and all the medical professionals who worked with our Annie in Italy.