Six years ago on a a snowy February evening, I took the last deep breath I would take for a very long time. In fact I think I might have sucked all the air out of the room. My daughter, my first born child, had a seizure and it changed my world forever. Just thinking back on that night brings tears to my eyes and the feeling of fear to my heart.
My husband and I had been at a party, laughing and enjoying a night with friends. It was snowing hard and it took us a very long time to get home to our two kids and their babysitter. Our six year old daughter was awake when we arrived home very late. She was complaining of a stomach ache. I thought she was stalling. I got her put to bed and was reading in my room when I heard her wrestling around in her bed. I thought she was having trouble settling in...she is a night owl and it sometimes takes awhile before she falls asleep. This was not unusual. But I heard her moving around alot. I thought if I went in to check on her it would prolong the process of her falling asleep and it was so late. Thinking back on that night I believe that she might have had more than one seizure. I definitely heard her thrashing in her bed more than once. It kills me now that I didn't go in there to see how she was but I also know that I would have been horrified by what I would have seen. Soon after all the movement my husband and I both came running because we heard a terrible gurgling sound coming from our little girl's room. It was a mixture of snoring and gagging and nothing about it sounded right. She was laying face down in a puddle of drool. We quickly picked her up and she was completely unresponsive. We tried for several minutes which felt like much longer to get her to awaken and respond to us, before calling paramedics. We were both so scared for her and I have to admit I don't handle this kind of stress well. Who really does? Her whole life was flashing in front of me and I was thinking we would never have her, the real her, ever again. The first responders arrived in less than five minutes and six firefighters came into our home to check her out. She had her eyes open by then. We described what we had experienced and they tried to get her to talk to them. We asked her to tell us her name and how old she was. Everything she tried to say sounded garbled and we couldn't tell what she was saying. It had been about thirty minutes since we first found her and she still couldn't talk to us. They decided to take her to the ER.
Our two year old son was asleep in his bedroom. We made the difficult decision for me to stay home with him and my husband would ride to the hospital with her. I was also two months pregnant and thought that if they needed to do any type of x-ray I wouldn't be able to assist them with her. It was very hard to stay home. Even though it was now the middle of the night, I called my good friend Linda. She sent her husband to the hospital to meet the ambulance and she and her teenage daughter came to help me. We left her daughter with my sleeping son and she drove me to the hospital. By the time I arrived, she was sitting up and acting like nothing had ever happend. On the way out to the ambulance, she asked her daddy where they were going and she was back. She didn't remember anything about the last hour or so of her life. Sadly, the ER staff wasn't too helpful. They believed because of the way she was acting that she hadn't had a seizure at all. They tried to convince us that she was just in a deep sleep state, sort of like sleep walking, when we were trying to talk to her. They gave her a red popsicle and after about an hour of observing her, sent us home.
The next morning I made an appointment with our pediatrician to follow up and thankfully, he took a more agressive approach to her situation. The days and weeks that followed were difficult. I was convinced that she could have a seizure at any time. She slept with us so that we would be more aware of any movement that she had. She had her first EEG in the early part of March. That wasn't very fun for anyone. It showed abnormal temporal lobe activity in sleep. It was followed by an MRI that was pure torture for her and for us. I am so thankful for modern medicine that can find answers and rule out possible problems, but those procedures are difficult to handle. Serious medical conditions and the procedures that go with them are definitely not in the parent handbook
that they send the baby home with at birth. It was especially difficult to send her back for her MRI, knowing that they could come back with some terrible news that would set the course of our life for a long time. We waited and we prayed. What we got, thankfully was a normal report. But that also left us with further questions. Was this a one time event? What was the cause of her seizures? How do we handle this non-information? Is there something else wrong with our child? What do we do? Does our daughter have epilepsy? We saw her neurologist who had some theories but no real answers. We kept her with us all the time. I remember thinking that no one else would be able to deal with this and I certainly didn't want to leave her alone with friends or caregivers that wouldn't know what to do if she needed help. I wouldn't want to put that on anyone. As if I would know what to do myself.
Life began to return to normal, sort of. It was always in the back of my mind and she had some difficulty with school but we were pushing through. In the meantime we had a healthy baby girl born into our family and some of the joy returned. Then it happened again. It was early in the morning on an October day and I was feeding the baby. Our daughter had come into our room and fallen back to sleep next to me. I heard her lips making a smacking sound and as I turned to look at her, her eyes were rolling back in her head, her long lashes were flapping, and her lips continued to smack. I yelled for my husband, who was in another room, to come. We both watched in horror as her entire body began to seize. He kept asking me "what do we do?" I kept telling him to just hold her and make sure she doesn't get hurt. I watched the clock and waited and grieved. It lasted about three minutes that felt more like thirty and then she slept. I can't even begin to describe the feeling of powerlessness and defeat that I felt. There's nothing like a seizure (your own child's seizure) to make you accutely aware that life is crazy, unfair and temporary. We didn't call the paramedics this time. I thought that unless she had another one, there was nothing they could or would do for her. Again we saw the pediatrician later that day and then there were more tests and less answers. Finally the neurologist told us he didn't think he would need to see us again unless she had another incident. He told us she had a "tendency for seizures" which isn't really a diagnosis. She never had to take any medication but we did keep some rescue medicine with us everytime we went on a trip or sent her to a sleepover. You would think we would have some relief knowing that she was basically okay, but I never felt completely secure with it. Maybe that shows a lack of faith, mostly I think I was protecting myself from what I thought was waiting, like a monster under the bed, to jump out and grab me when I wasn't paying attention. All this time, so many people were praying for her to be healed. And I walked around in a haze of disbelief.
It has been almost six years since she first had that seizure. I don't think I have taken too many deep breaths since then, until yesterday. At her well check a few months ago, we decided that another EEG would be helpful to know if she still has "temporal lobe activity". She had that test last Monday and we saw a new neurologist yesterday. He told me the news that I was hoping to hear. The EEG was normal. And I got to see her through new eyes, not as a seizure survivor or someone who may have one at any time...but as my sweet daughter. I took a deep breath and smiled. Freed from fear. My God is bigger than seizures, even when it felt like I was alone, He was there walking with me and comforting my nerves and heart. The last six years have been hard. I won't lie, I needed to hear the word "Normal" so badly yesterday, for me as much as for her.
Now I need to retrain myself to breathe deeply. Shallow breathing is hard on the heart.
http://www.youtube.com/watch?v=e02UNZRsdSQ&feature=share
