Saturday, July 17, 2010

Life with epilepsy

About a week ago, we passed the one year anniversary of Ethan's diagnosis with Rolandic epilepsy. Thoughts of the past year have been on my mind this week.

When we went to have his tests, he had only had two seizure-like episodes that were about a year apart. I was convinced when we went to Children's Hospital for testing they were not going to find anything. I was sure that they were going to tell us they couldn't find anything wrong and that he was perfectly fine.

I still felt this way when they took us into the small room and started hooking him up to all the leads for his EEG. I was a little embarrassed that they would feel we were wasting their time. He did great with the beginning of the test. Nothing out of the ordinary. At one point, they were flashing a strobe light type thing in his face and then she made him take quick, deep breaths for three minutes. It was during this time that all of a sudden his body seemed to take over and what I was watching was not normal. I knew at that moment that I had been wrong and that I was not walking out of that hospital with the answer that I thought I was going to get. That he was fine. That they weren't sure what we saw but it was nothing to worry about. They had him fall asleep then for 30 minutes and I sat with hem in a dark, quiet room with these
thoughts spinning around in my head. I just prayed at that point that God would give us something that we could handle and that He would walk us through it.

When Ethan woke up, they had us meet with the
nuerologist. His diagnosis? Rolandic epilepsy, a childhood form of epilepsy that he should outgrow with puberty. While I was shocked by the diagnosis, I was ecstatic that it was something he would outgrow. The doctor agreed to let us try to go without meds and suggested a firm schedule and lots of sleep. One of the triggers for seizures is fatigue, so keeping Ethan well rested is high on the list of priorities.

Fast forward a year. He has had between 25-30 seizures. I can't begin to explain how awful it is to watch your child like this and not be able to do anything. What has been incredible is how present God has been in this process. Ethan seems to have a pattern of going around two months with out having any seizures and then having a week of them. I have had to rely on the Lord to hold me up during these weeks. I have developed a thought that I use when I feel like I am drowning. I pray to God, "Lord, you already know how this day will end. I know that no matter what happens, you are already aware and have taken care of it all." Knowing that God is aware and will take care of it
relieves me of that burden.

Ethan is doing so great. He is active and played soccer, basketball, and softball this year. His teacher raved about the insight he offered into the discussions they had at school. He has had the opportunity to hear his mother pray over him and trust God for him. He has had opportunity to pray himself and place his day in God's hands. He is normal! He just has
epilespy. He is such a blessing to our family and I am so thankful to God for him!


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