Utterly Destroyed (Seizures No More – Part 2)
After a few months had passed in the Orlando house, we started to identify issues with this property as well. Another neglected HVAC unit, which the landlord refused to fix, amongst other things, led to several new health challenges, including my husband’s battle with pneumonia and other respiratory and skin-related anomalies. We found ourselves stuck in another year-long lease in a substandard environment, having to make the most of our stay.
Once our lease had completed, we were finally in the position for an upgrade. We were able to find a beautiful new construction for rent with no previous tenants in May of 2021. To us, this meant a fresh, clean environment free of potential mold or excessive dust. They accepted our application, and we couldn’t be more thrilled for this new season to begin. Another chance to have a fresh start and really begin detoxing from the past several years. We were truly looking forward to a season of peace and to relishing in our increased blessings.
There were four particular events that unfolded that validated our suspicions with our daughter’s health. One day as we were preparing the kids for bed, Justice had what we would now identify as a very quick focal seizure. It was small enough to miss but strange enough to catch my husband’s attention and then share it with me moments after it took place. It was very hard to describe for him as he had never seen anything like it before. It lasted about 2 and a half seconds and it happened mid-conversation as she was explaining something she found exciting with her brother and sister. He explained that during her conversation, she became excited and then just seemed to get stuck out of nowhere, causing her to hold a facial expression longer than normal. It was as if she had very briefly frozen or glitched at the height of her emotion. After my husband shared this with me, we saw it as strange but eventually chalked it up as another interesting quirk.
About a month later, as my husband was up working late one night, he heard a noise outside of his office and assumed it was one of the kids struggling to make their way to the toilet half-asleep. When he opened his office door, he was surprised to find Justice walking away from her bedroom toward one of the other rooms in the house and when called would not respond. She was sleepwalking and completely out of it. She did not need to use the toilet and could not provide an explanation as to why she was up walking. As he guided her back to bed, he found it odd, but the dots were not being connected, perhaps due to the time that had elapsed between these events.
A few days later, in the middle of the night, I awoke to check on the kids and noticed that Justice had wet the bed during her sleep and had not even bothered to wake up and inform us. As I was changing her, I woke her up to ask what might have happened. She wasn’t able to tell me anything, as she had no recollection of urinating or what could have caused her not to get up and use the toilet as usual. Justice had been potty trained for years and never had an accident, especially at 7 years old.
As days passed, we noticed Justice had managed to find a spot in our new home to fixate on and would just plant herself on the floor and stare. At times, in frustration, my husband would purposely try to move her or block what she was staring at, and she would get extremely bothered and angry that he was obstructing whatever it was. She began to yell and scream and beg for him to move. Justice’s ability to focus was now dwindling, and that was something we would never experience with her.
On July 31st, around 4 pm, we experienced a fourth and painfully obvious instance that something was wrong. As we were enjoying pizza as a family and just as Justice began taking her first bites, she snapped into a state which almost looked like she was choking. Her face became flushed, and her excitement to be eating one of her favorite foods quickly transitioned into a temporary grimace. It was as if she had instantly become full of fear and overtaken by something. We called her name several times, and she was unresponsive. I ran behind her in an attempt to clear whatever it was obstructing her breathing, only to realize she was not choking, and just as quickly as she had snapped into whatever it was, she had snapped right out. My husband and I were so confused. We immediately started asking her questions. I was asking her if she heard us calling her, and she said no. Repeatedly I asked her if she remembered anything that had just happened in those last minutes, and she said no. She had no recollection of my husband and me frantically calling out to her in a state of panic. This was the confirmation for us. This day everything had changed. After some very brief research, we had concluded with near certainty that our precious Justice had experienced a focal seizure. As certain things began to become more clear, we found ourselves flooded with the deepest sorrow we had ever felt. I remember my husband and I weeping deeply for hours at a time on a daily basis. Because of the state of things, my husband let go of several new clients and was about to walk away from his new job opportunity as it was simply too hard to focus, let alone button up for Zoom interviews.
The thought that something was actually wrong with our baby tore us to shreds. Confusion and despair set in, and the feelings of depression only grew deeper by the day. What was happening to our little girl? And whatever it was, could we make it never happen again? Was it even a possibility? What did we do? What could we have done? What should we start to do? A slow panic set in for us, and as time went on, the worry and side effects of stress began to manifest in our health. Nathaniel developed Alopecia Areata and rapidly lost complete patches of hair down to the scalp, while my stress induced multiple chalazions to form on my eyelids, with one almost the size of a pea.
As reality began to set in, our expectations of a worry-free season came to a grinding halt. Her fixation on objects was now completely uncontrollable, and her emotions were extremely erratic. She became unreasonably moody and aggressive, demonstrating behavior similar to that of children with ADHD and Autism. Most notably, she exhibited sensitivity to loud noises and an inability to focus or make eye contact for very long, and the seizures became much more frequent and pronounced.
We didn’t know what we were in for. All we knew was that we had to fully depend on God for our next move. We were in a very dark and unknown valley, and Nathaniel and I knew that every decision we made going forward, as it related to her condition, could affect Justice’s life forever.
At some point during our grieving process, my husband and I began to fully shift our focus to the arduous task of researching and getting to the bottom of things. As research and the internet can go, it presents you with all types of information that can validate and accentuate your worst fears. Our 6-year-old daughter (at the time) was not acting herself; this wasn’t the little girl we had been raising for the past 6 years.
Night after night was full of weeping as we were trapped in a state of depression. Full-out lamenting and groaning with boogers everywhere were common to us. The cries that my husband let out shook me to my core. I’ll never forget the sounds of his despair in that season. We were scared, confused, and utterly destroyed. We had no idea of our next steps, yet we knew something was wrong, and we would not stop until we figured it out.
