Just when my feeble mind thought there was no way it could get worse, it did. MUCH WORSE.
February 6, 2008, Kylee had the worst seizure she's had yet. She was at school, pretty much typical seizure except this time she had leg involvement.
She was sitting in class in front of everybody. Her leg was jerking bad. It scared her teacher, but it scared those other students, too. Kylee, was unaware this was happening, at least at the time. She was MORTIFIED once she found out.
She slept a long time after this one. She had seized hard according to reports.
She was tired of being a trooper. I didn't blame her. I was tired of being a trooper, too.
She was embarassed. About a lot of things. The diagnosis. The seizures. The spacing out. The leg jerking. The being unable to stay awake afterward. The not being able to spend the night with her friends. The not being able to go to the bathroom or for that matter anywhere else by herself as well as all the other changes that had taken place.
After the 3rd seizure, she was calling me almost everyday from school. She was so afraid she was going to have another seizure. I was mad I couldn't guarantee her she wouldn't. If she felt a twinge of anything in her head, she would call me to come get her from school. Her voice sounded so frail and fragile over the phone. This is in stark contrast to her normal, in your face (like her Mom) personality.
When I say she was calling me everyday from school, I mean, literally, everyday. I thought I was going to lose my mind. I understood why she was calling. I knew she was afraid and embarassed. I knew that if she was going to have a seizure she wanted to have it in the privacy of our home and not in front of other students but I also knew she had to go to school. It was terrible. Not knowing if I should make her stay at school or not. I didn't make her. I just couldn't. I left work everyday when she called and went right over to that school and got my baby. Every single time.
For the first time in 18 years, I was torn between work and home. I had never felt like that before. It was a terrible feeling. I didn't like it. Remember, my place of employment was more than just a job to me. It's part of me. However, it would NEVER be more important than my daughter. EVER.
Even though they never once complained and remained totally supportive, I knew it wasn't fair to my job either. I was leaving everyday. My "Daddy"/Boss never said a word. He was wonderful. God couldn't have blessed me with a better place to work during this time than "Where Love and Care Make a Difference".
After MUCH praying, and many, many tears, I made one of the hardest decisions of my life. I resigned. From my job of 18 years, I resigned.
I just couldn't do it anymore. Physically and emotionally, I couldn't do it anymore. I was torn between the two. Kylee needed me. As mch as I knew that, I'll never forget having to force those words of resignation out of my mouth.
When I say my the owner of our company/my boss is like my Daddy, I really mean it. He introduces me as, "His daughter". He was stunned to say the least at my resignation. I cried, more like sobbed, while talking to him. He understood totally that my baby needed me. He said without hesitation I didn't need to worry about work and with her is where I needed to be.
He refused my resignation.
He told me to take a leave of abcense. Take as much time as I needed off. 1 month. 3 months. 6 months. It didn't matter. Whatever I needed, take it, and when I was ready to come back, my job would be waiting for me.
I didn't have the energy to fight with him. I said ok. I left that day with the intention of not going back. My baby needed me.
I was scheduled to go to Honduras March 24th-31st on a medical mission trip. There was NO WAY I could go out of the country with her so unstable. I was totally at peace with that decision.
I was at the school often helping with the PTO, doing whatever, so she would see me near, without me hovering. She and I knew why I was there, but the other students had no clue it was because she was scared and wanted her Mom there. We kept it that way.
With each day that passed without a seizure, her confidence grew. Her fear lessened. Her sassy, playful, outspoken personality started to return slowly, but very slowly.
I gradually reduced my days at the school. I was trying to wean her off of me. Finally, May came and then the last day of school. I have never been so glad to finish a school year. It had been so difficult in so many ways.
Part 4, Soon.