When I was a junior in high school, I went on a college visit with my mom. As soon as we got there, we could feel it wasn’t the right fit, but we resolved to do the whole tour anyway — after all, we had flown there. We rarely spent time just the two of us — much less just the two of us on a longer trip — and so I remember the experience fondly, despite the fruitless college visit.
It came time to head home, and we went to the airport. With time to kill, we strolled along the terminal. Suddenly, at the exact same moment, we stopped each other. We had been walking about ten feet behind two women. They were walking, arms linked. I could immediately feel that they were mother and daughter — the daughter was perhaps in her forties. What had stopped us cold was that the daughter’s gait was identical to my own sister’s.
My sister was born with Angelman Syndrome, a rare neuro-genetic disorder characterized by developmental delay, lack of speech, seizures, and movement and balance disorders. It also includes:
Behavioral uniqueness: Any combination of frequent laughter/smiling; apparent happy demeanor; easily excitable personality, often with uplifted hand-flapping or waving movements. — Source
We had no doubt that the daughter had Angelman Syndrome. We had never randomly encountered someone else with the condition before. We wanted to do something. To connect, talk. We stepped to the side of the walkway and discussed — Do we say something? Is it intrusive? Welcome? How would we feel if someone approached us? I don’t recall why, or how we decided to start the conversation, but we did approach them. I do remember that the mother was happy we did. Her daughter had never been diagnosed, and she had never heard of Angelman Syndrome — she was just who she was.
Although I was young at the time my sister was diagnosed, and don’t personally recall, I understand it was a revelation and a relief to have a diagnosis. It illuminated some of the unknowns. It provided some sort of roadmap.
We wrote down everything we thought might be helpful to this woman, and gave it to her. She seemed amazed at the prospect of a genetic test. We never got their names or contact information.
I can’t fully explain why, but for me this moment was, and remains, imbued with a sense of wonder.
Today, after leaving work, I ran some errands. I stopped at Hobby Lobby for Christmas miscellany. Arms full, I stood in line to check out. A father and daughter were checking out ahead of me. The girl turned around, and her father gently touched her shoulder — a reminder to stay close, or just absently checking where she was. I could see, without question, that this girl, too, was an angel. My mind raced and my throat caught. They’re busy paying. Do I say something? Does he just want to get his errand done and get out of the store? Will he consider it an intrusion, or welcome conversation? Does he know? Before I could decide, they finished paying and left — She walked out with that same unmistakable walk, arms raised.
When I got outside, they were gone. I got in my car, shut the door, and sat. What if he didn’t know? I’m sure the testing is much better now, right? Easier to diagnose? I sat in a fog, then collected myself and headed home.
As I drove, my phone rang. My mom had just picked up my sister. “Sissy wanted to call and say hi,” Mom said. “Hello!” came the voice from my sister’s iPad (her “words”).
When is it intruding, and when is it a welcome outreach? Around ten years later, today I made a different decision, and in the hours since, I have been preoccupied trying to understand why.