This past week has been one of the most exciting times in my family’s life. My oldest daughter, Mallorie gave birth to a beautiful, healthy baby girl! While the birth of a new child is a happy and exciting time, the big old purple elephant (epilepsy) in our house was lingering in the back of my mind. I try not to let it in, and invade the good times, but it seems to always be present. I would like to use this place to share a little bit of what bounces around in my head, even during the good times.
When Mallorie sent a selfie of her and her husband in a group text asking if anyone had plans for dinner last Sunday, all of us immediately realized it was “time,” and they were headed to the hospital. As any mother/soon-to-be grandmother would do, I became super excited and nervous, and I started quickly grabbing our things to make our way to the hospital. The daily seizure meds were already in my purse, awaiting this big day. Bella picked up on my nervousness, and she began swiping her VNS magnet over and over to help calm herself down. I knew she was picking up on my anxiety, so I took a deep breath. I slowed my pace. I figured that this baby would not be here too quickly, and bringing on seizures would not do anyone any good. I explained to Bella that we would be in the hospital for quite a while. I told her she had time to eat in the car, and I would pack up some chicken and veggies for her. She immediately calmed down, and seizures were avoided.
Like many first time pregnancies, my daughter’s labor was long. As the minutes turned into hours, and the daylight turned into darkness, I could not rest. My husband and other two daughters took naps, but Bella stayed awake with me. I tried to get her to close her eyes. Sleep deprivation can bring on seizures. Again, my mind was bouncing back and forth between excitement for the arrival of my granddaughter, normal nervousness for the whole labor and delivery process, and added worries about the possibility of breakthrough seizures. I really wanted her to sleep, but I couldn’t sleep, so she mimicked me.
After a long night of labor, my granddaughter was finally born around 5am. The delivery was a tough one, but my daughter and baby are both perfectly healthy. As everyone breathed a sigh of relief, and after we all got to meet our new little princess, I was looking forward to resting my head on a pillow all day long. When we got home, Bella informed me that she had plans with our neighbor to deliver some meals for Meals on Wheels! I was surprised and exhausted. I tried to convince her that she really needed to sleep, but she dug her heels in the ground. She was committed to going, and my exhaustion took over. I shrugged my shoulders, and I let her go. After sleeping less than two hours, I awoke. I couldn’t go back to sleep. I was worried that Bella could have a seizure (and anxious to get back to the hospital to hold my granddaughter!).
To my surprise, Bella still didn’t nap when she got home from her volunteer work. Her stubbornness carried her through the entire day. She did sleep well Monday night. On Wednesday night, however, while Bella was getting her medicine from her weekly pill box, she noticed that one of her phenobarbs was still in the Tuesday morning compartment. She takes two every morning and every night. If one was still there, she only had half a dose on Tuesday morning. I felt it was too late to have an extra one on Wednesday night, so I told her she would be fine. I did my best not to let her notice the muscles in my neck tense up as I worried about her. One of the most common triggers for breakthrough seizures is missed medications. I tossed and turned the next few nights. She missed a full night’s sleep on Sunday, and then she missed part of her normal medications on Tuesday. This is a recipe for disaster.
It was very easy to keep things positive. We have a new baby girl to drool over. Bella loves children, and she is a very proud aunt. I have seen her play with and hold many babies and toddlers, but none have made her smile like this new little blessing in our lives does. While the anxiety of her arrival, the lack of sleep, and the missed medicine increased the likelihood of breakthrough seizures, love seems to have conquered the epilepsy beast this week. I am feeling thankful and blessed. This new parenthood thing is going very well for my daughter and son-in-law. I am hopeful that the pure joy of being an aunt will be enough to keep Bella relaxed, and we can keep epilepsy at bay for a very long time. Maybe the added title will promote a higher sense of responsibility so that medications will be taken on time, and overall health, like getting enough sleep, will be a greater concern for her. A mom can dream, right?
I love to stop and smell the roses. I try to take time to appreciate good days. Sometimes the bad days creep in and take over. I refuse to go through life being paranoid, but I need to be realistic. I believe in being prepared. All of my posts on social media this week have been those of a proud and happy grandmother. I am very proud. I am very happy. In the back of my head, though, I continue to carry this constant worry of breakthrough seizures. I do not let it control my life, but it does not ever go away. I will sit here tonight, sip my tea, embrace the love of holding my new grandbaby, and I will say many thankful prayers as we waltzed through this week without any catastrophes. My smile may seem full of peace, but it is also filled with the knowledge that we sidestepped a cluster of seizures. Understanding pure devastation makes me appreciate the blissful days even more.