November is Epilepsy Awareness month. I decided to share things I have learned in my family’s journey since my daughter, Tinkerbell, had her first seizure that was made known to me.
I was teaching fifth grade science when my cell phone rang. I noticed it was my daughter’s school, and I thought a message would be left. No message was left. My classroom phone rang, and the school receptionist said that I needed to call the school nurse at my daughter’s school. I called and heard “Mrs. Xxxxx, Tinkerbell passed out and she may have had a seizure.” I asked the nurse to repeat it a couple of times to make certain I heard her correctly. I immediately hung up the phone, grabbed my purse and ran to my teaching partners’ rooms to tell them I had to leave. I went to the front office and told the principal. She asked me if I was okay to drive, and I said I was. The 15 minute drive to my daughter’s school felt like it was going on forever. I spoke with my husband, and he was going to meet me at her school.
I arrived at her school first. The school counselor was waiting for me to arrive and immediately took me to the nurse’s office. My Tinkerbell looked okay–shaken and nervous but okay; I hugged her tight. I started asking questions and her teacher and nurse answered them. My daughter told her teacher her “feet felt heavy” and immediately slid down her teacher’s leg, eyes wide open, to the floor. Her teacher said she had a “blank stare on her face.” After this was explained to me, my husband walked through the door. Tinkerbell immediately went to him, jumped in his arms, and held on tightly; it was like she was hoping Daddy could make it all go away.
We go to the ER at Texas Childrens Hospital and wait about 5 hours to be seen (swine flu was the raging fear back then). The ER doctor did and EKG and it was normal. The doctor said she was “probably overheated” when the episode happened. I kept thinking that wasn’t correct; it was 85 and cloudy outside. The doctor did write on the discharge paper that if there was a second episode, Tinkerbell should have an EEG. We arrived home at midnight; Tinkerbell slept while Daddy and I were watching her all night long.
The next morning, we went to visit her pediatrician. He said he would order an EEG, but more than likely, it would be normal. He said if that happened then we would never know what caused her episode at school. I was okay with that. The brain is a unique organ that does not always follow “normal.” He said the EEG was not an emergency, but we should get it done as soon as we could. Since there was only one week of school left, I scheduled it for the week after.
Tinkerbell had her EEG, and we waited for the results. We did have fun waiting for the results as we went on our scheduled vacation to Florida as planned. When we returned home, there was a message to call the pediatrician for test results. I called as soon as I could and received the news that “Tinkerbell’s EEG is not normal. She did show seizure activity. Come into the office immediately so we can discuss this further.”
I did not fall apart in front of her or my older daughter. Momma has to remain strong and have hope. However, I did cry at night while everyone was sleeping; it was my way of coping and not losing it during the day. I was lost; my husband was lost. How did she all of a sudden show seizure activity? Isn’t epilepsy something your born with or caused by brain injuries? How is her life going to change? How is our family’s life going to change? I had no idea what to think or what to do. All I wanted to do was hold her and make everything all better–which I could not do. I felt so helpless; I was supposed to protect her and I felt like I somehow failed her.