When I was a child, there was a family that attended the 5:00 Saturday night service at St. John’s The Baptist, Catholic Church. The dad, a Naval Captain, was very sophisticated and proper, his wife as well. Because I viewed her through the lens of being a teenager, I quickly labeled her, “the blue haired lady,” due to the slight, shimmering tint in her gray hair. I don’t recall ever having a conversation with her, or looking her straight in the eye, but I thought deeply about her. I pondered her life. You see, seated next to these two distinguished parents was their less than sophisticated son, Paul. Paul was gregarious, flirtatious, and full of life. He also had Down Syndrome. I noticed his physical abnormalities as well as his social exuberance. He possessed the flat facial features, small abnormally shaped ears, and an upward slant to his eyes. Paul was the life of the party, a perfect balance to what appeared to be a very stayed family. I mused over how things in their home must run. Not at all your typical All-American family.
In recent years, I have functioned primarily as a VE (Varying Exceptionalities) teacher. As such, my special needs students are mainstreamed. I take them to my office for short periods usually for rewards, or to work intently on isolated skills. My bulletin board displays random pictures of my three beautiful daughters. Within days of each other, I had two students communicate essentially the same message, “Your baby looks funny.” Most likely they were noticing some of her physical attributes: Carly’s malformed ears, the strabismus of her left eye, the noticeable veins that graced her face. I responded to both of them, “You are correct. She does look funny. That’s what makes her so special!”
The siblings are the unsung heroes in every special needs family. We kept Kathryn and Janae active in sports and social events as much as possible. Carly was often toted to soccer practices and games. One picturesque Florida dusk, the sky filled with dark blues and pale oranges and yellows that reflected off puffy clouds, I was pushing Carly to Janae’s soccer tryouts. I spied the face of a player I had never met. I noticed how she noticed Carly…not fondly, not poorly, but like a brisk wind had just disrupted her equilibrium for a moment. I have spied similar looks from adults across crowded rooms.
I thought about the comments of my two students and the reaction of this young, innocent stranger. I thought about the people that might have noticed me from afar. They may never have had a conversation with me, or looked me in the eye. They might have pondered about how things unfold in my home as I pushed my medical stroller to and fro. My family was not your typical All-American family. I concluded, “Oh my! I have now officially become, “the blue haired lady!” What I know now, that I couldn’t have imagined as I contemplated sitting in my church pew is this: it is a high honor to have been deemed worthy of stewarding the life of a special child.
Broken but Beautiful 