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!

Temporary or Permanent?

Late Summer/Fall 1999
 I was supposed to start my core Education classes this semester at UF, but because I failed that Anatomy & Physiology course (along with dropping another education pre-requisite), I had to postpone my plans one semester. Instead, I took Teaching Diverse Populations, Western Civilization in the Middle Ages, General Anthropology, and Age of the Dinosaurs (yes, this was actually a real college science class). I was probably somewhat bitter about having to wait an entire semester to take my education courses, so I didn’t put forth too much effort this semester – 3 B’s, 1 B+.

When I first moved to Gainesville, I instantly had a big group of friends. My childhood best friend graduated high school a year before me (she was c/o 1996), and she had made a big group of friends who lived in her dorm freshman year. I moved to Gainesville in August 1997, and I felt so welcomed and surrounded by interesting people who were fun to be around. But two years later, my best friend moved back home, and I grew apart from her friends. This semester, I made two new friends named Kelly. I don’t think I would’ve remembered their names had they not had the same name. One of them was in my Middle Ages course, and the other was in my education course. They were very different, but both were native Gators. Kelly from Middle Ages had piercings and tattoos…and drove like an absolute maniac in the most beat-up car I had ever driven in. I swear to you, she’d drive through intersections with cars about two feet away from hitting my passenger side. It was so scary, yet so thrilling. Kelly from my Education course was the daughter of a doctor. Even though her parents lived nearby, they got her her own apartment, equipped with a big screen TV. She drove a brand new SUV and had enough money to go where she wanted, when she wanted, without ever having to work. I used to envy people like that when I was in college. People who didn’t have to work or whose parents bought them clothing and televisions and new cars. But I lived in Gatorwood Apartments (if you are not familiar, that’s where the infamous Gainesville murders took place, so the rent was only $470/month), had to work, shopped from the JCPenney clearance racks, and I drove a used ’95 Nissan Sentra…oh, wait…just remembered another story from this semester!

Okay, so since I didn’t want to return to my Mexican fast food restaurant job, I had to find a new one. I decided to be a sales person at Gatorland Toyota-Kia. Only they put me in the used car area across the street. And I didn’t do sales. I did some job where I had to ask people their names when they entered the building, and then I had to give their info to a sales person, who then had to give the info back to me in order for me to get paid. I guess I was some type of glorified Wal-mart greeter. All I really remember about the job was that I had to answer the phone “It’s a great day at Gatorland Toyota-Kia.” Why was that all I remembered? Because on my first day at work, I threw up repeatedly in the bathroom, until I had to ask to leave. I drove home hastily, and a car hit me (T-ed me, and I spun around at a MAJOR intersection). Yeah, had to quit that job. No transportation – and the $1000 I had saved waitressing over the summer to spend on furniture for my apartment? Now spent on car repairs.


Late Summer/Fall 1999
So finally the gastroenterologist discovered what he thought was the problem – Abi was diagnosed with delayed gastric emptying, which meant the milk she ingested was actually sitting in her stomach so long that it was curdling. She was given a drug that finally helped her reflux and gastric emptying, but shortly after, the drug was taken off the market. She was given another medication instead, but that drug didn’t work like the other, and Abi was suffering from dehydration, stuffy sinuses, and a sore throat. She would get so backed up, that when the mucous and milk finally drained, it drained everywhere – on her parents, bedding, the floors – everywhere!

In September, Abi completely shut down. She wouldn’t breastfeed or drink from a bottle. Her parents begged her to eat, fed her drop by drop, but after two weeks of this, Abi was back in the hospital. She had been given so many IVs already that her poor little body could not handle one more. The only place they were able to get a vein was in her head, so that is where they placed her IV. This would hydrate her, but it did not nourish her.

This led to one of the first big decisions they would have to make for Abi. If she wouldn’t suck from a breast or a bottle, they would have to insert a feeding tube. Just five months earlier, they were thinking about cute baby clothing and toys and nursery decorations… and now they had to decide whether they wanted a temporary tube in their daughter’s nose, a permanent tube in her stomach, or a permanent tube in her intestines. This was almost too much to handle, but a decision had to be made. Additionally, they had to determine if they would tie off her stomach so that she couldn’t throw up because they constantly feared she’d aspirate on all the fluid she was throwing up.

Still clueless about what was actually going on with Abi, they opted to place a feeding tube in her nose temporarily and transfer her to a new hospital in Miami. They spent a total of two months in the hospital this time, determined to remain there until they had answers. They met with every geneticist, gastroenterologist, neurologist, medical student, nurse, etc. until they found an answer. They drew blood, swallow tests, EEG, MRI, seizure workup, etc. Time was passing, data collected, but no one knew what was actually happening. One term they 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. But they couldn't give up on their daughter. They had to believe they would get answers - real answers. What was wrong with their beautiful little girl? When would they figure things out? How long must they remain in the hospital? When would they get to take Abi home?

A New Life

Late Spring/Summer 1999
It was time to pack up my dorm, quit my Mexican fast food restaurant job, and find a summer job back in South Florida. The past 3 years, I had worked at summer camps, but the pay was minimal and the hours were long. I was ready for something new and exciting. I applied for a job as a server in a local restaurant, had an interview that day, and was hired. Working as a server is an experience like no other. It put me in close contact with a very diverse group of people. As a 19-year old, I never really had any jobs that allowed me to interact with people of all ages on a daily basis. Most of my jobs involved kids, and working in a college town, you really only deal with people your age.

I think this was the summer when I determined that I could have a life. A real life. Prior to this, I still tried to follow my parents’ wishes and live somewhat conservatively, despite my passion for rock music and dyed black hair. But these new people energized me, with stories of Hungary and life in a band, living in public housing and baby daddies in jail, broken engagements and private affairs…Oh, and lots of bowling and beer drinking. I guess you can say I found my adult freedom this summer, and embraced every sleepless, wild moment of it. Life was about trying new things, making new (temporary) friends, and lots of partying! I guess that’s probably why, for the first time in my life, I failed a class – Anatomy & Physiology at FAU. Clearly I was not in the right frame of mind to study for that. Although I did manage to get a B in statistics!

Although some of my choices at that time may not have been the best ones for a relationship… my relationship with my boyfriend of one year somehow became more serious, and as the summer died down, we packed our belongings, loaded up two cars, and drove back to Gainesville to begin our apartment life together.

Late Spring/Summer 1999
The first seven days of Abigail’s life were perfect. Her parents loved bringing her into their home, holding her in their arms, and welcoming her to the family. Her seventh night at home was different, though. Abigail began to fuss in her sleep, so her mother put her to her breast. She began to tremble rhythmically, briefly, and then fell asleep again. Her mother, trying not to worry too much, went back to bed and called the doctor in the morning. She told the doctor that she thought it may have been a seizure, but he did not agree. He told her not to worry and that it was probably just a startle reflex. But there’s just something about a mother’s intuition that would not allow her to believe that it was normal. Something just didn’t feel right.

A few days later (and several occurrences of this supposed ‘startle reflex’ later), they went to the emergency room, where Abi’s doctor performed a spinal tap. One of the nurses observed what they had seen many times over – and their brief ER visit became a two-week trip to the neonatal intensive care unit. As they went through Abi’s medical records together, she came across something alarming – unbeknownst to her parents, Abi had been diagnosed with intrauterine growth retardation. Additionally, her APGAR score was low due to “poor coloring, blue limbs.” So the little baby girl they had given birth to, the one who left the hospital just days after being born, was not a healthy, typical child as they were initially told. Why was the doctor so dishonest? How did this happen?

In the NICU, they ran every test imaginable to try to find out what was going on with Abi’s little body. She was given medication to control her seizures… but she was awake every night, throwing up, suffering from dehydration, and had to go to the ER every few weeks to rehydrate her. Unable to nurse, this beautiful little baby tried every formula on the market to try to reduce the vomiting. At just a few months old, she was already taking three different medications, but still doctors could not figure out why any of this was happening. Life as parents was not at all what they had expected.

A Change of Pace

Spring 1999
Spring semester was filled with balancing my long-distance relationship and trips home with a boring biology class, an awesome writing course, a fun (yes, I did say 'fun') math course, and a very enlightening philosophy course. I also spent a lot of time trying to find an apartment to live in next year as I was done with the dorms. My roommate this semester was from abroad, and the only way she could communicate with her family and friends back home was to chat with them online - all night long. She'd leave this huge desk lamp turned on, eat bags of chips, and type away - all night long. Apartment-living sounded quite inviting, as long as I could manage to earn enough money to actually afford my rent. 


Spring 1999
The pregnancy was somewhat uneventful, but during a routine ultrasound at 8 months, something changed that would set the pace for so many unforeseen doctors’ visits, hospital visits, and a complete lifestyle change.  The baby was not developing properly, so labor had to be induced several weeks early. Twenty-five hours later, a baby girl was born. Her black hair was striking against her porcelain skin. She was small at just under six pounds, with thin arms and legs. But she was beautiful and ‘healthy’ and was able to go home just a few days later as any typical baby would be.

The Beginning

I’ve learned that sometimes, when you can’t organize your thoughts well enough to begin writing, you can just start in the middle somewhere and write. I’ve always enjoyed writing. I don’t think I was ever particularly good at it until I started working on my doctorate. In high school and college, I wrote angst-filled, woe-is-me teen poetry. Thoughts like daggers, cutting new wounds…that sorta thing. I found it to be very cathartic, and in that moment of creation, I almost convinced myself that what I had written was special and unique. Turn on any early 90s grunge song, and I’d learn differently. But I think what I’m about to write is different. What I hope to accomplish is to discover a sense of purpose for my life through the retelling of others’ stories (accompanied by my own).

If who we are is defined by what we are, I can safely say that parenting has changed my ‘who’ to the core. So while my experiences differ greatly from those of the families I will illustrate to my readers, my journey has brought me here, too – as an educator and now as a mother.

Fall 1998

I was walking down 13^th street after class one day. Time for my afternoon splurge. The creamy guacamole with a sprinkle of cheddar cheese, accompanied by crispy corn chips. I saw the sign outside that said  “Now Hiring.” I did not leave Broward Hall that morning thinking I’d be applying for a job that afternoon, but here I stood, filling out an application. I handed it off to someone who I can guarantee was either covered in tattoos, piercings, or wore those black-framed glasses. And so there I worked that entire school year, usually three nine-hour shifts a week. I was able to put down like one taco, one massive burrito, a bag of chips, and several cups of lemonade each shift, and I weighed in at about 110 pounds. Ah, how easy it was being 19 years old.

Fall 1998

The news of a baby girl arriving was beyond exciting, especially since they weren’t even sure they could get pregnant after her various procedures and a miscarriage. But to their surprise, it happened without any medical interventions or fertility treatments. She announced the news that it was a girl to her husband by purchasing a little girl’s outfit and sticking it in their closet. Together, they shed tears of joy to celebrate how genuinely happy they were.