Completely Unsuspecting (Seizures No More – Part 1)
This is the beginning of a series of blog posts documenting an extremely difficult season which my family endured. Never in a million years did I think we would have to go through something so devastating, but we did. I am sharing all of this with fear and trembling, and with the hope that doing so will help anyone who may find themselves in a similar situation and in desperate need of hope in their search for answers.
In the most wonderful birthday surprise, Justice was not born on her due date but arrived a week ‘late,’ delivering the absolute greatest present I could ever have received. God heard me and demonstrated care even for my ‘silly’ little petition, seeing fit that we share a birthday. Justice, my birthday twin and my best little friend, is my beloved firstborn child who is incredibly special to me. She has made me a mother and continues to teach me so much about life and myself.
As a baby, Justice was the most joyful and brilliant baby this mama could have ever hoped for. She constantly blew me away with her infectious joy, antics, and intelligence. She was sitting at 5 months, crawling at 6 1/2 months, and totally didn’t care to walk until 17 months. Some people might think that is delayed, but Justice, in her brilliance, instinctively knew crawling was best for her growing brain. Now, as a 30-year-old woman, I find myself crawling on the floor, trying to rewire my own brain and form new pathways. But I won’t get into neuroplasticity right now.
As a toddler, Justice continued to excel. By the age of 2, she knew the entire alphabet and could identify the difference between upper case and lower case. She knew the phonetic sounds, counted to 20, and even did basic addition. Additionally, she could identify many colors, including shades like Cyan. I clearly remember that one because of her playfully correcting me a few times. She also knew all the flat shapes and was very interested in learning solid shapes, eventually mastering those as well. Learning was fun for Justice; she loved it, and it came naturally to her. Wherever her curiosity led, I followed, and she continued to excel.
Justice was reading by age 4 and never went through a formal ‘this is how you learn to read’ kind of lesson. She loved sight words and always had an affinity for books. Through play and exploration, she learned so much.
In 2018, my family decided to leave Chicago, the only place we’d ever known, and move to North Carolina. However, this move turned out to be short-lived. Three months into our move, we discovered that the house we were living in was riddled with black mold and had a completely neglected HVAC system. In those three short months, the health of my family dramatically deteriorated, with my two daughters, Justice and Victory, evidently being the most affected. As soon as we discovered the cause, we left the house and the state altogether and set our sails for The Sunshine State in hopes of a new beginning.
When we arrived in Florida, we had no idea how challenging finding a home free of potential health hazards would be, especially after being forced to break our previous lease in North Carolina. Because of these challenges, our temporary hotel accommodations turned into a full 2-year journey of hotel hopping and complicated living. We stayed in every Orlando/Kissimmee hotel you could think of, all the while being exposed to more mold and experiencing tons of other bizarre incidents, including the pandemic of 2020-22 and all the inconveniences it brought along.
During this time, I was 6 1/2 months pregnant with my fourth child and was completely over hotel living, in desperate need of a home to call my own, and to prepare for the birth of my new baby. In an interesting turn of events, we settled for a house for rent in Orlando one day before the shutdown and restrictions began. We were so relieved.
In March of 2021, my husband and I began to notice that our eldest child, Justice, started exhibiting some slightly odd behavior—infrequent moments of continuous staring at things for no obvious reason (floor, wall, siblings’ faces, grout between tiles, and other objects), as well as sporadically heightened emotions. I remember watching my daughter stare at the floor and thinking that it was strange at first. At times, I would ask questions because I wanted to understand why she was doing what she was doing, but she didn’t really provide a clear reason, or at least one that would help us understand. She just said that she liked it.
Perhaps we were in denial, but up until this point, Justice’s behavior wasn’t alarming enough for us to believe something was actually wrong. Little did we know, a perfect storm was brewing on the inside of our precious Justice, and that it would be the start of the most traumatic and difficult season of our lives as parents.