“I remember the phone call like it was yesterday. My daughter’s best friend Abby called me around 8:30 a.m. on November 14, 2015, to tell me that my daughter Kiersten had a seizure. My response to her, ‘Abby, quit playing around!’ She passed the phone to her mother Tracie who proceeded to tell me that Kiersten did, in fact, have a seizure and that they had called for an ambulance and could I come quickly. I am a single mother of three children, so I gathered my two sons and we rushed to their home to find Kiersten loaded into an ambulance.
The boys stayed with John (Tracie’s husband) while she and Abby followed us in the ambulance. I remember talking with the paramedics and telling them that nothing like this had ever happened. (To be quite honest with you, since I had not seen the seizure and could not reconcile in my mind what that could have even looked like in my daughter, who up until this point was fine. Clumsy sure, but fine.) I told him to test her for drugs and alcohol. Not because I thought poorly of her, but because I was once a teen and I was not in the mood to play ‘my child is perfect’ games and just tell me what is wrong with her so we can go home and continue our semi-normal lives.
Her tests all returned normal. No one could explain to me what happened. The ER doctor said it was probably because she stayed up too late and it was a fluke. I liked that answer. I wanted this to be a one and done event. I still didn’t even understand what really had occurred. I have never seen a seizure so having someone tell me my child had one did not have as much of an effect on me as you might think.
I spent the next several weeks following up with Neurologists and Pediatricians and reading anything that might explain what had happened. I blamed myself for the dissolution of my marriage the year prior, thinking that maybe she was overwhelmed by that loss. I thought it was from her time on Color Guard and maybe she hit herself in the head too hard during one of her many practices. I was grasping and finding nothing to hold onto.
Early one morning in January 2016, she and I were getting ready for school/work and while in my bathroom she kept having these bizarre arm jerks. She would be brushing her hair one moment and the next her arms would be jerking up and out. I remember her saying she could not control them as I stepped into the shower. Moments later, I heard a thud. I threw open the shower curtain to my 15-year-old daughter convulsing on the floor and I lost my mind. I grabbed a towel and dropped onto the floor next to her. I was screaming out to her, begging her to stop. I wept as I held her. I screamed out to God. I screamed and I cried and I begged her to find my voice and come to me. My son, Clark, then only 10-years-old, came running from his room where only moments earlier he was sleeping. I looked up to see him with my cell phone calling 911. I can remember his tiny voice so calm as he told the operator that something was wrong with his sister and his momma was crying. He paused and then looked at me and said, ‘Momma, the lady said to calm down and help is coming.’ I was anything but calm. When the ambulance came, I collapsed. My mind could not reconcile what my eyes had seen. The way my precious daughter looked on that floor. Her face frozen with the look of fear, as if it were her last emotion as she fell backwards.
Again, all of her tests came back normal. No one could explain to me how my seemingly perfect 15-year-old daughter was now suddenly having seizures. I was angry. I was desperate. I was determined. I learned that when they have no definitive answers for ‘why’ you are awarded the diagnosis of Epilepsy and prescribed a drug to prevent future ones from occurring. The drug they prescribed her essentially took my daughter from me. I can remember telling my sister that ‘except for seeing her body and knowing she is alive, I feel as if my daughter has died.’ She was no longer who she was. Rather, she was a shell of herself. She would wake up, drag herself to school, come home and go to sleep. During moments of wakefulness she would rage and terrify me with her sentiments of grief and depression. Her grades started to drop and she had to give up Color Guard.
It was the longest year watching her slip away from me. It was not until one day during that summer when she sat down with me and said, ‘Mom, I just wish I could go to sleep and never wake up,’ that I resolved within myself to stop at nothing to find the why. I was told about Dr. Daniel Amen by my friend Kristy who encouraged me to look into his research on SPECT Scans and the human brain. I reached out to them and made her an appointment. So, in December of 2016 we spent three days in Atlanta, Georgia, at the AMEN Clinic having her brain scanned in hopes that it would show something, anything! At the end of our time there, the psychologist sat us down and explained that based on her brain images, my daughter had a Generalized Anxiety Disorder and PTSD. I sat and wept as I thought of all the ways I was unable to protect my daughter from this much pain. The grief was suffocating. From there we met with her Neurologist who was now working in tandem with the AMEN Clinic to treat what was actually causing the seizures, or as they explained to me, panic attacks that look like a seizure. They took her off of the Epilepsy meds and started her on anti-anxiety medication. They explained to me she needed to work on cognitive behavioral therapy in order to learn to manage her panic attacks. She started counseling and was doing well.
In June of 2017, she went on her first Missions trip with our church to Peru. She became sick and while she was there, she had a seizure. Thousands of miles away and in the middle of the night I received a FaceTime phone call from her phone where her friend Tyler explained to me she was fine, but she was upset and wanted to talk to me. I told them to give her some medicine and then, hold her. Just hold her and tell her she is safe and she is going to be ok. Once hanging up the phone I laid in my bed and wept again. I wanted so badly for my daughter to be ok and to have the life of normalcy that she should be having.
Over the course of the past year we had gone through all of the protocols with the State and gotten statements from all of her treating physicians explaining her condition so that when she returned from her trip to Peru, she was able to obtain her driver’s license. It was an amazing time for her. In July of 2017, her father came down and took her car shopping. One week after getting her ‘new to her’ car, she hit a stop sign. She put the car in park and upon exiting the vehicle, she had a panic attack/seizure and fell into the road. A passing nurse stopped and rendered care and I was called to meet them at the hospital. She had broken her nose when she fell and would require surgery to repair the damages.
In October of 2017, while I was downstairs doing dishes, Kiersten was upstairs and started have feelings of panic and what we refer to as arm twitches. These are our signs that a possible attack is coming and she is to lay down and work on her breathing. She wanted me. I bring her a sense of calm and as she descended the stairs, she had a seizure. She fell half way down and into the front door of our home. When I heard the noise, I knew. Only when I got to her, I thought she was dead. I collapsed on the floor beside her and struggled to catch a breath. I called 911 and after being disconnected, took her picture. Half so I could show her and half so I could show the doctor how she landed. Once at the hospital we learned she had rebroken her nose. It was all so very painful.
I had been spending time working with her by taking a class offered by Jason and Dena Hobbs, ‘Calming the Storm,’ on breathing meditation and how to find your center of calm. I was still struggling with how to help her obtain her goals to attend Georgia College and State University after graduation. I was trying to help her brothers, Clark and Zac with the fear and worry they were expressing over their sister. They too struggled with the pain of watching her during her convulsions. We cried many times together. Late at night when everyone was asleep and it was just me and my thoughts, it was all I could do to be strong and keep our little party of four afloat. I decided we would get away and do something none of us had ever done before. So, during that last week of October the four of us drove down to Disney to experience the most magical place on earth. It was everything we needed. We rested and laughed. We ate and swam. It was truly magical.
Months went by without incident. She was doing so well. Her meditation and breathing exercises were helping her work through the fear and anxiety of everyday life. Some friends gifted us with tickets to see our favorite football team, Auburn University, play in a bowl game. She would have days when the arm twitches would come, but she would go back to bed and then no seizure would follow.
I started to notice that her arm twitching came more consistently around times that she would eat certain foods. I can remember telling her not to eat something she had brought home from a fast food restaurant. I told her, ‘If you eat that you are going to have a seizure.’ She had a seizure the next day. It was April 5, 2018.
I decided then that I would have her doctor test her for food allergies. On April 16th they did the skin test. Kiersten reacted badly to that test and was given medicine and ice packs to cool her body down. She jokingly asked if her back was going to look that bad for a while because she had prom coming up and was wearing an open back dress. Turns out she is allergic to eggs, wheat, dairy, and nuts. She felt bad all week after the skin test.
On Thursday, April 19, she went to have her nails done and started prepping and planning with her group of friends when pictures would be made and where they would eat before prom. It was an exciting time for them as this was their senior year and her last prom ever.
The morning of April 20th she called out to me from the bathroom where she was very sick. She had been up for some time with stomach issues. We thought perhaps the allergy testing and/or a previous nights’ dinner was to blame. She was so afraid. She was having arm twitches. Bad ones. They were coming so fast and I was talking to her, trying to calm her down. At the same time, I was grabbing towels and placing them on the floor, explaining to her she would have to lay down before the seizure came. As I grabbed the last towel and turned towards her she went rigid, her body throwing itself upwards and then forwards, crashing down hard, face first onto the tile floor. It was the sound that stopped my breathing. I froze. My mind imagined every bone in her face was crushed. She was not moving and I could not tell if she was breathing. It seemed like a lifetime and I was terrified. I came to my senses, documented the time and then called 911 and tried to remain calm as I listened to her finally start breathing and then convulsing. She was undressed, covered in blood, covered in vomit and feces when the paramedics arrived. I was trying to calm my son down and reassure him it was not his fault for wanting chicken nuggets for dinner the night before. It was surreal as they took her to the hospital without me, while I worked to secure places for my sweet boys to go.
I arrived at the hospital saw her swollen face and then her teeth, OH GOD, her teeth! Her teeth had shifted, one had broken, and her gums were split open. I fell back into the chair and wept. It was too much. The next several hours were spent with her amazing Dentist who worked to reset her teeth and numb her gums so she could rest.
On April 21st when she was supposed to be getting ready and taking pictures and going to her senior prom, she was on the couch recovering from yet another seizure. Grieving yet another loss. She and I both cried a lot that weekend. We shared anger and frustrations as we talked about her future.
On April 25th her friend Emily Johnson contacted me via Instagram and explained to me ‘that she felt terrible Kiersten had missed her senior prom and how she wanted to put together a surprise Prom for her with all of their friends.’ She asked if that would be ok with me. I was overwhelmed with emotion. I could not believe this precious girl would think to do something so very thoughtful and selfless for my daughter. Of course, it was ok with me! Over the next few weeks, Emily and her mother, Wendy, planned and arranged all of the details. It was all so well done and organized.
On May 12th me, my son Clark, my friend Michelle, Emily and her mom Wendy met to decorate. Wendy and her husband provided everything from décor to food and drink.
You can see the look of shock on her face and the amount of love shown to Kiersten. It was a moment and an expression of her friends’ love she and I will certainly never forget.
Posted by Margie Johnson on Saturday, May 12, 2018
As I thought about all it meant that a friend had stepped up to do this for my Kiersten, I recalled many conversations with her about her anxiety and insecurities. I knew of her struggles with feeling like she didn’t belong, anywhere. I knew of her fears of being judged for being the girl with seizures. I sat with her as she cried out for answers. I held her as she sobbed through her shouts of anger over her circumstances and how unfair life seemed. I cried with her when she asked why it seems our family keeps losing. I reassured her that God wasn’t angry when she questioned him. I read her the book of Job and told her God hears her cries.
I then stood there and watched her walk through those doors and see with her own eyes what people did for her, because they love her. I acknowledged that even in our darkest days, we have so much light surrounding us. My momma heart was overcome. I cried as I watched those precious children shower her with encouragement, support, and love. I caught a glimpse of peace on her face after she had spent hours laughing with those who stayed, and those who stopped by, if even for a moment. I grieved what she lost when she missed her prom, and then rejoiced with her when she got her own personal prom!”
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