I’ve mentioned in previous posts that my petite has epilepsy, but I’ve never gone into too much detail about it. Part of the reason is that the more I talk about it the more it becomes real and part of me is still possibly in a sense of denial. You see I want to wrap her in my arms, much like I swaddled her as a baby and hold her close, close so I can protect her and keep her safe. Recently, I admitted out loud that maybe I am not okay. I’ve been trying to put on a brave face and advocate fiercely for my girl.
How in a single moment everything changed:
In October my girlie was home from school and taking a nap, she woke up and seemed a little bit out of it, she seemed like she was still really tired. She came down the stairs and just stood there, when I called her name she didn’t respond, her eyes were not focused. In the amount of time it took me to get to her from where I was sitting, the “episode” was over. She was back to her normal self. I assumed she was just tired, maybe had low blood sugar or needed a snack.
The next day she woke from her nap and came downstairs and tried to talk to me and couldn’t. She stuttered out mommy and was unable to focus her eyes and fidgeted with her dresses hem, her lips started smacking like she was chewing something that wasn’t there. She stood, just looking off into, well into nothing. Her father and I were panicked, we had never seen her doing anything like that before. We immediately called the pediatrician and were seen two hours later. We described what we had just seen and he checked her out and said she seemed fine now, but that it sounded like something neurological had taken place. We left with a referral to a pediatric neurologist the following week.
The neurologist told us she wanted to get an EEG before she saw us in her office. So we scheduled that. In the meantime we started taking videos of the behavior that we were seeing if we could capture it. We caught two seizures on video in less than one weeks time, both of them over 3 minutes long. We showed up to the EEG appointment, the petite was nervous, as were we. She was very confused because she had no memories of the seizures and in her mind only sick people go to the doctor and she wasn’t sick. We started the EEG and almost instantly the tech held up a note asking when we were to see the doc. We had no set apt, which we told him. Unbeknownst to us, the tech had paged the neurologist with a 911 and she came down immediately to watch the EGG as it was happening. Apparently, her EEG showed a multitude of disturbances. My husband had stepped out of the EGG room with the baby since she was starting to fuss (we had our other daughter with us who was only 12 weeks old). He had no idea the neurologist was out in the hall watching the EGG live. She matter-of-factly told my husband that our girl had epilepsy. I was laying in bed with the petite as she slept during the EEG trying to hold back the tears. Later after she woke, I walked out to see what was going on with the baby. When I walked out, my husband held my hand and told me that she has epilepsy. I sobbed. Before I even had time to process what epilepsy might mean the doctor was telling us about the medicine that she would be taking and what to do if the seizures turned into grand mal.
Epilepsy is a very scary word. It is a very scary diagnosis. It can mean so many different things depending on what type of seizures and the occurrences. Of course when you hear that your four-year old has something that could impact her in ways unknown it is terrifying. My heart ached. There are moments now, where I can barely breathe when I think about my sweet girl and what all this means. At the time, I had no way of knowing what was to come in the months in weeks ahead. Even as I write this I have no way of knowing what is to come in the weeks or months to come. What I do know is that I have an amazing daughter who is incredibly brave, smart, empathetic and hilarious, Yeah epilepsy is something she has, something that is still scary, but it doesn’t define who she is.