I don't know how to begin or what exactly I should say ... Holy Spirit help me ...
2003 - We had just moved into our new home, found out we were pregnant and getting ready for the summer. Ethan had just completed his kindergarten year with a 4.0 (Private school) and was invited to be in the talented and gifted program for his first grade year. God created this boy "gifted."
One weekend in June while I was at work, my husband called and said do you notice how Ethan is not completing his tasks lists? Have you seen him stare into the air? Have you called him and he did not answer and is looking you right in the face? I stopped my work and sat down and said, "yes, I have noticed that if I give him a list of things to do, he does one or two things on the list and then starts doing something else. I have also noticed that when I call his name, he does not answer, but I thought he was playing a trick on me. (Something he used to do quite often) Did something happen? "
Yes, my husband said. We went to the grocery store and when we were walking to the car, Ethan stopped dead in his tracks in the middle of the parking lot and when I called his name, screamed his name, he did NOT answer. He was staring into space. When he stopped staring , he said, "dad, why are screaming at me?"
I sat further back in my chair and started crying. I do not know why, I just did. A sadness came over me, because deep in the back of my mind, I knew something was wrong. The rest of the weekend would bringing even more tears.
Sunday while at my sister's church Ethan had 3 more episodes where he would stop doing whatever he was doing and stare into the air. My sister's godmother, who we call "godmother" saw one of his episodes and said, Jai, Ethan is having a seizure. She went on to explain that she had seen this one other time before with one of her students and while everyone else thought he was daydreaming, the child was having seizures. She said Ethan looked just like that little boy. I cried all --- the way --- home. I cried out to the Lord, with NO words, but cries!!!!!
The rest of day brought more of these episodes, but we didn't know what to do. He WASN'T have gran mal seizures, he wasn't falling, he wasn't stuttering, none of that .. he was staring into the air, but he kept on doing it. We called the pediatrician who unfortunately was NO HELP. I am shocked and dismayed. My doctor was NO HELP. We told them what we thought was happening and they suggested we go to the ER because they didn't deal with seizures. OOOOOkkkkk. Scared, frightened on a Monday morning, after a few phone calls to our insurance company, we set out for the ER.
We got to the hospital around 9:30am and there was no one else in the waiting room and they were able to see us right away. We were seen by nurses and techs and waited and waited some more. Ethan did NOT have any more episodes on his own. At one point we were sent to the neurology unit, they did an EEG and made Ethan have a seizure while wearing a lot of tubes on his head and chest so they could see where these "episodes" were coming from in his brain. We went back to the emergency room and waited some more. We were there ALL DAY long. At 5:00, a team of doctors came in and told us Ethan has epilepsy. I hear you and I read your lips, but I know you did not just tell me my son has epilepsy. They also told us, they do not know why.
After giving us this news AND answering our questions, they tell us that the hospital neurology team cannot work with us because of our insurance, so they gave us some recommendations for some other doctors, but before we leave they give us RXs for Ethan and say these medicines have NOT been tested on children. These meds are created for adults, but we will write the prescription based his height and weight. They tell us there are MANY meds to treat seizures, but we just to have to see what works best for him. His new doctors would assess and make a recommendation. The good news, they said, was that is it not hereditary (because they saw my belly) and that we should not worry and concentrate on helping Ethan.
No one could have prepared us for what was in store for the rest of summmer and fall of 2003.
Please forgive my typos, spell check is NOT working ...