After ten loooooong days in the hospital, they finally let Ken go home. Now the plan was to do another round of chemotherapy while Ken's body was recovering from the surgery. After that, we could look at the possibility of radiation at the place where Dr. Valle removed his stomach and attached his esophagus to his intestines. We went home and fell back into the routine of night-time tube feedings and trips to the chemo lab. These chemo treatments only lasted about two hours each, so that was better. It also didn't make Ken lose hair, so he started getting pretty fuzzy again. He eventually got all of his hair back, but it wasn't as pretty and curly as it had been before he got sick.
In reading back over many of these entries, It seems like we spent every waking minute fighting that terrible disease. And while it did take up the biggest majority of our lives, there were other things going on too. I guess one of the most important things we were dealing with, other than the cancer, had to do with Jesse. He was having a particularly hard time with his Dad being sick. He wouldn't talk to us about it, so it had begun manifesting itself physically. He had started complaining with frequent headaches and stomach aches. In fact, the day Ken and I were at the hospital trying to get his pre-op testing prior to the stomach resection, Jesse's school called and said he needed to come home because he had a severe headache. I remember my feelings of complete helplessness that day. I couldn't leave Ken--he had to have all of that testing done. I couldn't get in touch with any of Ken's family. I finally ended up calling Joan, our pastor's wife and she went and got Jesse and let him stay at her house until we got home from the hospital. That was one of many days that I felt like a failure as a mother. I was doing all I could to keep Ken healthy. My poor boys kept getting short-changed over and over again. I just never felt like I was "enough" for everybody.
Jesse was our first-born. He was the only, much loved, much petted child for four and a half years before Benjamin was born. But, oh, how he loved that little brother when he arrived. Jesse would tell people that Benjamin was "his baby". Started calling him "Bro" before Benjamin could even walk. It was a precious bond between them. As Jesse got old enough for school, we started noticing that he was having difficulty getting along and making friends. He had a disastrous kindergarten year, so we asked the school to let him have a "do-over". The next year in kindergarten was better, but Jesse still just never seemed to mesh with the other kids. He had few friends, was easily frustrated and had frequent angry outbursts. He was a completely different little guy at school than he was at home. We didn't know why things were suddenly so hard for Jesse.
Jesse's difficulties continued as he got older. School just NEVER seemed to get easier for him. Academically he did great. He was a great reader and had a precocious grasp of the English language. But social skills continued to plague him. He just didn't seem to "get" the group dynamic. His reactions to social situations were often inappropriate and his classmates begin to consider him "weird", and many of them began to shun him. It broke my heart, but any parent-teacher conferences we had usually left me more upset than I had been before I went. Teacher after teacher would simply say things like, "he's spoiled", or "he needs more limits"... always laying the reason for his difficulties squarely in our laps with no helpful suggestions and no offers of assistance. We just resigned ourselves that Jesse was "different", and consequently, would continue having a hard time in school.
Then, when Jesse was in fifth grade, about half-way through Ken's illness, a teacher FINALLY suggested that there might be something going on besides Jesse being an "ornery kid". She saw me in the hallway one day and asked me to stop by her room during her break. I went in, full of dread, wondering what Jesse had done now. She was very pleasant and said, "Mrs. Lunsford, I've been watching Jesse and I think that maybe he has Asperger's Syndrome". I blinked and said, "Okay, what's that?" She went on to explain that it was in the autism spectrum, but was on the high-functioning end. I was still trying to get past the word "autism" when she handed me an article from a magazine. My eyes fell on a list of characteristics of children with Asperger's Syndrome, and as I read, I found Jesse in those pages. It was as if the article had been written with Jesse in mind. I was STUNNED! There WAS a reason for the way Jesse behaved and it had a name!!!! The teacher asked if it would be alright for her to start the process to have Jesse tested by the school psychometrist so that a determination could be made as to special education services. I nodded, signed the release form, and headed to the car. I remember crying all the way home. I cried from sorrow that my child could have a real disability. I cried from relief that there really was something wrong, but it could be treated. None of it EVER had been Jesse's fault!
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