Becoming a parent is one of the most bizarre things that happens in life, at least for me. I was never one of those girls who got excided at the thought of children, nor one who wanted one of my own. I couldn’t get why normally sane woman went to mush at the very sight of a child. Don’t get me wrong, kids are cute, but to go to that level of crazy was not something I could understand. I’m sure you can imagine how much of a surprise it was for me when my own little “gift” came a long. I’m still not sure who was more shocked, myself or my friends, I even had one of them tell me they thought I would eat a baby. Clearly that is quite far from the truth. I did have a bit of knowledge of what to do with a child, so I wasn’t a complete novice. I don’t think any amount of practice can really prepare anyone for a child of their own; it’s helpful but doesn’t quite get the point across.
Nothing about my little girl has been normal. The stress of pregnancy wasn’t really due to her, more all the other people around me. Having that many hormones racing through your body at anyone time is enough to make one crazy, but throw in a bunch of nosy people and an absent dad, and you got a party! When delivery came around, I was well passed ready to see her. Things didn’t go very smoothly for either of us; she wasn’t tolerating labor well, and I was panicking about her. It was a big mess. But the best moment in my life was looking into that utterly perfect face and knowing she was mine. From there things went as smooth as can be expected with a newborn around.
It wasn’t until Isabelle was two months old that the seizure, or bad guys as we call them, first really showed up. She had been known to do odd jerking movements, but everyone assured me this was perfectly normal. It took a bit of creativity on our part to show our doctor what was happening. At first, all I could do was explain them over and over, trying to convey the seriousness of these episodes, but with no success. Finally, my dad came up with the great idea to video tape them, as we couldn’t make her have one in front of those who needed to see them. It worked. We were able to bring the video in and say, “Look, this is what I’ve been telling you for months now. This is not normal.” Soon after that was the beginning of the test, which will always be a “normal” part of life now.
The first test she had to see what was going on was an EEG. An EEG or Electroencephalograph is the recording of electrical activity along the scalp from the firing of neutrons within the brain. The general experience was not a pleasant one. First the test was done at a hospital that had never done an EEG on a five month old. Second the guy administering the test had some of the worst bedside manner I’ve ever seen, telling us we couldn’t talk to her or moves around the room. Also the location of the Neuro area was in the psych ward, which surely didn’t invoke confidence for me. I felt like I was the world’s meanest mom as I held her to my chest so the tech could set all the electrodes. The cries and shrieks were heart breaking, but what could I do, this was what we needed done. The rest of the test passed in a slow silence, none of us knowing what to expect next.
A week later I received a call from our doctor, the result hand finally come in. Dr. Villavert always starts the conversation of the same way, “Hi Briana, how are?”
“Pretty good, how are you?” My heart slowly started to accelerate, I knew why she was calling and I couldn’t wait to get her talking.
“I’m good. So I just got the results from Dr. Miller,” she paused, which made me worried. This was not going to be what I wanted to hear. “Based on his notes here, everything is perfectly normal.” It took me a moment to actually hear what she had said. Normal, how in God’s name could this be normal?
“So what does that mean exactly?” I tried hard to keep the anger out of my voice, with little success.
“His notes state that there was nothing abnormal in the tests and that she should out grow these episodes by eighteen month.” She said it all like it was the best news, which in most cases it is.
“Did he say what would happen if she didn’t?” She wasn’t prepared for that question.
“Dr. Miller seems fairly confident that she should have no problem out growing these. Maybe he could answer that question better himself.” It was her way of finalizing the conversation, since I didn’t respond the way I should have.
“Ok, thanks Dr. V.” We said our goodbyes and after I hung up the phone I sat there for a moment thinking it all over. My heart was telling me they got it wrong, but how could I prove it. They did the best test they could to find out what was going on and nothing came up, so what now? I took my parents out back to talk it over with them. My mom showed relief at the words normal, until I told her my fears. The wonderful thing about my family is they never showed doubt in me. We agreed to wait it out, till she was at least a year old before doing anything further, unless something more came up.
We spent the next six months waiting for the other shoe to drop. I knew this battle wasn’t over yet, that we had a long way to go still, but all I could do is wait out the time. The week of her first birthday I made the call to the Children’s Hospital to set up another EEG. This one was worse in some ways but better in most. It turns out that as they get older you must sleep deprive them the night before. Making a one year old get only three hours of sleep is one of the cruelest things I’ve done, and adding the gluing of electrodes seemed like overkill. The EEG tech, Joseph, was one of the nicest and most helpful people I’ve met throughout this journey. He took the time to explain what he was doing and why, helping me feel a bit better about it all. Shortly before Christmas the call came with the results. The difference in our doctors’ voice from the first time was noticeable; there was a note of regret as she spoke that this time something was off. The relief I felt wasn’t as sweet as I thought it would be, instead I now had to worry of what came next. We got a neurologist lined up for two months out, but we still didn’t have a name for it. All I could say was that she had abnormal brain waves, like that really explains any of it.
When two months had past, we were sitting in the Children’s Hospital Neurology and Neuropsychology Department filling out paperwork and getting of feel for the way life would be from then on. The doctor was as I expected, he was tall and sort of willowy with graying hair and a nicely aged faced. He looked like some bodies favorite grandpa with the high waisted khaki slacks and worn out leather shoes. He gave off the sense of comfort and ease, something I deeply need by this point. The conversation that came wasn’t easy but it did bring the comfort of knowledge. I now hard a word for what Isabelle was dealing with, epilepsy. Most people never have seen a seizure in their lives, but my baby was living with them and having one almost daily. The appointment took over an hour and at the end he was pushing to put her on medication to control the seizures. I never wanted her on medication if it could be avoided, and at the time I thought it could. I didn’t want to add a chemical into her little body unless it was absolutely necessary. Dr. Levishon and I agreed to wait until after she had an MRI before talking about meds to give me a chance to think it through and read up on epilepsy.
By April of 2007 Isabelle had undergone two EEG and an MRI. Shortly before the MRI her seizures had changed to the point that only medication would help. We went through countless medications trying to find the right one for her; it took over a year to start seeing any changes in the seizure activity. Everything about this journey has been a rollercoaster ride. Its present us countless challenges, some of which we still face today. But through it all my little girl has shown that its up to you how you handle a situation, if you go in all doom and gloom, that’s exactly what you will get. Learn to simply be here and be grateful it’s not you being poked and prodded, or loosing complete control of your body. I’m still not the best at it but I have one hell of a teacher.