The ****** household caught that awful flu/cold/bug AGAIN and I am behind in my writing, so please forgive me ..... this is long again ...
The last 4 1/2 years have flown by!!!
I would have NEVER said that WHILE we were IN the moment. Ya know? When Ethan was first diagnosed, my world and everything around me seemed to move so slow. VERY SLOW!
Ethan's seizures increased, he began falling with each seizure, his meds changed, he had a week long hospital stay to chart his seizure activity, his grades began to slip, he gained weight, his started having memory loss, he didn't know how to tie his shoes, he wanted to sleep ALL THE TIME, he started moving slower, he lost interest in cars, video games, movies, and LAUGHING, he forgot words and started using his own version of sign language, he needed to be watched every minute except when he was sleeping, his speech was altered, his writing became illegible, he didn't want to play, his friends didn't understand why he wanted to watch Barney while they were watching power rangers, he couldn't swim, he couldn't play football and on and on and on ... we had to rearrange the house, we couldn't have a coffee table, we tried to make everything in the house soft and anticipate seizures so we would be ready.
D and I were very tired and often speechless.
We had to do almost everything for Ethan. EVERYTHING! Of course, we didn't mind, he IS OUR son, but I don't think it dawned on me how much we WEREN'T doing. Ethan was NOT living the life of a normal 6 year old. We would drive around on Saturdays and see all the parents at the soccer fields near our house or hear about my co-workers having to take their kids to baseball or football practice and games over the weekend and silently think .. when can Ethan play? The spelling bees and speech meets .. we did not do that either. Ethan did not sing in the children's choir at church ... there was no way I would have him sing and have a seizure in the middle of a song. D and I began to shelter him ... perhaps too much ...
Ethan learned to read at 3. I remember like it was yesterday. He was in Awana and the instructor told them NOT to go ahead in the book, but Ethan LOVED Awana. One Tuesday night while we were looking at the book together, I remember thinking, this boy has memorized this book. OOOO, that is sooo cute. The next night was Awana night and when D and I went to pick Ethan up, one of my friends who was helping in the class told me how excited everyone was because Ethan had been reading, really reading the book. I was like .. uh huh .. then they showed me and I was floored!
The learning continued throughout his preschool and kindergarten years. Ethan excelled at most everything he did. He could name ANY and EVERY car or truck on the road. Can you imagine a 3 year old saying Dodge Viper, Lamborghini, yellow corvette? It was wonderful and scary at the same time. He loved school and soon was invited into the Talented and Gifted class for 1st grade.
Then the seizures started and Ethan went from T&G to Special Education within 2 years. He also had to leave his private school and go to public school. His doctors wanted him to have all the services he needed to improve his quality of life. We were scared .. but we prayed.
Fear and Faith CANNOT live in the same space.
The transition was not easy, but smooth. God gave Ethan some wonderful teachers and staff at his new school. This year will be his last year at this school and if all goes well, Ethan will enter junior high next year and a new journey will begin. JUNIOR HIGH .. eeeshhh
One thing I learned is that I needed to be an advocate for Ethan at school. I needed to know how to be the best advocate for him and how to advocate WELL for him, NOT tick everyone off in the process. I wanted him to learn at his pace, but I also wanted him to have the regular schoolwork sent home as well... even if that meant we did double work. Many times I would be told, he can't learn this, this IS above his abilities and each time .. Ethan, no God would prove Ethan's critics wrong. I also wanted a safe environment for him. His new school provided a "buddy" for him and the whole school would wrap their arms around him. I have never heard so many people whisper ... we are praying for him .. we are praying for him. The whole school knew who Ethan was before he ever set foot in the building and MANY had said God does "DO" miracles and He is up to something big for Ethan.
I totally agree ....