I can be changed by what happens to me. But I refuse to be reduced by it.— Maya Angelou
It was just a little over three years ago when we received T’s prognosis. I remember foggy bits and pieces from that morning. But there are two moments that are still crystal clear in my mind – one that continues to haunt me and one that fuels me.
It was a late summer 2016 morning when we first visited Surrey Place to meet with a developmental pediatrician. I have never heard of this organization before, until we received a referral from our family doctor, who suggested that we get T looked at, because of what we know about his medical history after adopting him at 15 months.
I sat in the lobby and looked around at the other parents and children. There was an excited energy in the air. Dr. L arrived. He was accompanied by a colleague and I recall two medical students may have also been with them.
We were escorted into one of the many rooms in the building and I sat on a leather couch. T, then 18 months, had just become comfortable with walking. He explored the room and they then brought out toys for him to play with, while they observed him and simultaneously asked me questions.
I felt tremendously at ease with them. They were professional, friendly and so good with T. The conversation did not feel awkward and they asked me so many questions about what T was able to do and not do. I don’t remember a lot of the questions, but recall ones about his speech and how many words he could say and a question about how many blocks he could stack.
I had a copy of T’s file from the adoption agency and I disclosed as much detail as I could about his medical history. It was one specific detail that was of particular interest to them and why our family doctor referred us: T’s mother reported that she drank during the first three months of her pregnancy, as well as taking hard drugs, like crystal meth, throughout her pregnancy.
They also examined and scrutinized T’s face very closely, looking at his upper lip in particular. I would later learn this was because they were looking for specific facial features. They then measured his height, weight and head circumference and then plotted them onto a chart and quickly determined what percentile he measured at.
Then the prognosis arrived. Based on T’s medical history, what they observed, and the answers that I provided to their questionnaire, Dr. L. stated that T has a prognosis of at-risk fetal alcohol spectrum disorder (FASD, for short).
My husband and I did not know a whole lot about FASD at that time, other than that it was something we specifically said we’d avoid when we were going through the adoption process. My mind flashed back to a brief conversation I had with a former manager a few years earlier. She told me to avoid FASD, because she had friends who adopted children with FASD and it ruined their lives.
Those moments flashed through my head, while I stared at the two professionals looking at me. I smiled, because I wanted to stay strong. I nodded my head, because I wanted them to know that I was paying attention. But I did not understand what was going on. I had so many questions, but I did not know how to ask them. I felt like I was having an out-of-body experience and I just wanted to scoop T up and go back home.
I genuinely don’t remember a whole lot from that morning. I’m not sure if it’s because I blocked it out of my mind or if it’s because parenting T has worn down my memory. But I remember two specific moments from that discussion with Dr. L.
The first – A prognosis is just an outlook. He is too young to be properly assessed and diagnosed until he is older. At that moment, because T was still young, we would not notice a lot of difference between him and other children. But as he gets older, Dr. L cautioned that we may start to see a widening gap between his abilities and those of other children.
The second – Dr. L suggested that we enjoy T’s childhood, because it flies by very quickly.
The first words of caution have haunted me ever since that morning. The second words of wisdom have fueled me to focus on the positives.
My husband and I knew oh so little about what FASD was at that time. But from that morning on, we were going to learn a lot, experience highs and lows, and yes, we were going to enjoy T’s childhood.