School Days - May 4th, 2009

I’m writing this on the twelve week anniversary of Joshua’s death. It’s still unbelievable that he’s gone. He was our only one. This time last year he was planning prom and graduation. He was getting ready for electrical school in the fall. His opportunities were wide open, we thought.

Joshua was born with a rare liver disease called Glycogen Storage Disease or GSD. We were warned that it could possibly be fatal, but after being diagnosed at nine months, he thrived. At least we thought he was. His real issues started in the fifth grade. It was a county middle school. Even though he was eleven, he still wasn’t mature enough to take his medicine, raw corn starch mixed with water once at school. We were spoiled by his elementary school which was so small even the principal mixed it for him on occasion. We’d had a meeting with his new teacher and she assured us he would be watched.

The first day of fifth grade the teacher handed him his corn starch and told him it was his responsibility. He began coming home with it in his book bag. Sometimes he’d have low blood sugar sometimes not. But this was the beginning of our nightmare. In sixth grade he was lucky enough to have his old preschool teacher and she at least supervised his corn starch. But then in seventh grade and on he resented his disease and the corn starch and constant blood sugar lows. By the time he was fifteen the sweats and lows were really getting worse.

Joshua had developed a severe eating disorder when put on the corn starch. It filled him up and he had no appetite. The doctors said, “He’s growing, don’t worry about it.” As first time parents we trusted his doctor. As he grew, his body demanded nutrition that it wasn’t getting. His own body took the nutrients out of itself. The corn starch caused excessive weight gain and his self-esteem got lower and lower.

He truly struggled through high school and barely graduated because of being so sick and missing so much school. When he got excited or nervous he got bad belly cramps, nausea, and sweats from the lows. So of course, for prom and graduation he felt awful. But he was determined to go. I just didn’t realize how much he was suffering. I never wanted to face the fact that he’d be gone someday. Never in my wildest dreams did I imagine losing him.

So, here we are missing him so deeply it hurts to even get out of bed in the mornings. It hurts to smell his favorite foods. It hurts to feel the warm sunshine and hear the frogs in my pond because he isn’t here with me.

I vow his death will not be in vain. With his GSD specialist and his team, along with the GSD family and our friends and family we’ve started a foundation in his name for research. I know he’d be so proud. If he could help just one child from going through what he did, he would say it’s worth it.

During the summer, he seemed to gain even more weight. His sugar lows were getting unendurable. He dragged himself to school three evenings a week to his electrical school. He loved the class and the teacher. For the first time he felt good about being in a class where he felt equal and not inferior. Even though, he hated missing, there were days he just couldn’t get out of bed.

Mom and Cody visit preschool	First Grade
Pencil Pose	Play Ball!
Four Wheeling	Gone Fishing
basketball practice age 9	more basketball 3rd grade
Senior	senior class picture 2007-2008
Josh the Graduate

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