Stepping into and out of the Dark

Winter 1999/2000

Remember that skit “Hey, Mon” on In Living Color? It was about a Jamaican family, where everyone had a minimum of 3 or 4 jobs at any one given time. Yeah, that was me in college. I always had several jobs at once. My husband will still laugh at me when, to this day, I mention some other random job I had that he didn’t know about. Since I couldn’t drive for a month while my car was being repaired, I got a job at the O’Connell Center/Ben Hill Griffin Stadium on campus. This job was great because it was really flexible. I set my schedule and worked at the events I actually wanted to attend. I was an usher, so I just told people to sit in their seats during games and concerts. I got to see George Carlin, the Goo Goo Dolls, swimming events, and lots of basketball games (much better than football). I learned how to build and take down scaffolding and sound equipment. After events, we got leftover hot dogs and pretzels (they were kinda cold and slimy, but what did I care? I was a college kid and this was free food). I remember actually taking a Vivarin because I wouldn’t get home until 1 or 2 am sometimes, and I had classes early in the morning.

This is also the semester I got my first teaching-related job (once my car was fixed). I responded for an ad to help a middle-schooler who was gifted (but not so motivated to do his homework) by tutoring him afterschool. I interviewed and got the job. His mother taught me something very important that I still keep in mind when interviewing. I was the only person who asked about her son. I wanted to know what he was into – interests, hobbies, etc. That’s still something that I recognize to be very important. In order to teach, you have to know what motivates that child to try his/her best, whether that child is in a gifted program or has a disability. The family was great. They lived in a beautiful home in a really nice area of Gainesville, and they had two fat orange cats. The boy’s grandmother cooked delicious crepes with Nutella. I still use her recipe! I worked at their house for two years, and we actually re-met on Facebook not too long ago.  Pretty cool!

Then the holidays were approaching… The things I remember about this particular time in my life are not the most positive things, and they are somewhat random. I always used to keep a diary/journal, so when I went back to find this holiday season, I didn’t write about it. So what did I do this winter break? I was living with a man who suffered from depression. This began to wear on me. I remember going to an all-ages gothic club in Miami called The Kitchen with a few people. I sat most of the night while 18 year-olds in fishnet stockings and knee-high Doc Maartens danced as if the music they heard was something far different from what I was hearing. I remember going to a sushi buffet with my family, but we were all having some issues then. I don’t remember what we actually did to celebrate the holidays. I don’t remember celebrating the new year. This is quite odd because I generally have an insanely-detailed memory…which is probably why all of this feels dark. 

However, January brought about the spring semester. I looked forward to my core educational classes, new faces, and new experiences.

Winter 1999/2000

One term the doctors threw around a lot was "failure to thrive." That made it sound like everyone was just giving up. Like Abi had no chance at a future. Unwilling to let that shake her up, she interpreted it to mean “unable to live independently” which made it a lot more palatable.

After seeing another neurologist, they were told that Abi was developmentally delayed (no news to them). She was not demonstrating the milestones of a typically-developing 8-month old…or even a child half her age. She struggled with head control, which develops by 3 to 4 months. She wasn’t babbling or showing an interest in her surroundings. But Abi was able to do one thing, and that was smile! Everyone loved her smile – it was quite contagious!

They visited a geneticist, who finally, after 8 months of testing, fear, and uncertainty, gave them an answer. Abi had a genetic disorder – an unbalanced chromosomal translocation. That means that some genetic material flip-flopped with other genetic material, but it was not an even exchange. However, the geneticist was uncertain if this was the cause of all of her delays because Abi was actually the first person to ever be diagnosed with this exact translocation.

They decided to visit another neurologist. After driving a long distance and waiting to see him, the doctor sat them down and told them that Abi was microcephalic. No one had used this term before. This meant that the circumference of her head was significantly smaller than other babies her age. Microcephaly generally results in seizures and developmental delays. They then mistakenly asked what this meant for their daughter long-term, when they were told something that is simply shocking from a well-educated medical professional. He said that Abi would be like a monkey, unable to have logical thinking or reasoning.  This was a very dark moment for them, but instead of acting irrationally themselves, they simply left. Instead of giving up and allowing a diagnosis to control their dreams for their daughter, they began to research every treatment, every therapy, every behavioral and educational intervention they could possibly provide to their beautiful little girl to reach her potential.  Nothing would stop them!