Sunday, January 27, 2008

When Justin began his junior year of high school, life quickly became chaotic. Starting with the first week of school he was sick at least once or twice a week. His stomach ached, he seldon vommited but felt nauseous. He would just ache, back, gut, shoulders - it depended on the day.
I could tell by looking at his eyes that he truly was sick. I had no idea what to do for him. I began to dread waking him up, afraid he would tell me he didn't feel good. Calling the school so often was excrutiating. Have you ever had to tell the school secretary at least once a week that your child was sick? Not fun.
One day I asked the secretary if there was a certain number of days a student could miss. She said as long as he was getting his work done. Well, that was a problem, he was getting it done but by the end of the first nine weeks was barely passing most of his classes.
This puzzled me. He'd always been a good student, seldom had homework but still got As & Bs with very little effort. Now, he seemed to be studying but was not keeping his grades up. Our school had an internet program in use for parents to keep track of their students daily grades and assignments. At first I tracked his progress, but that became painful. I talked with him and he always assured me that it would improve.
I'm sure he thought it would. But he kept falling farther behind, assignments were late. I finally decided to talk to the school counselor. Until I made that initial visit, I'd always assumed the counselor was there to help in situations like this. I'm not quite sure what I thought they would do - but, well, SOMETHING.
Surely there was somehow they could help Justin get back on track. I did explain to the counselor that Justin was sick alot and I thought that was a large part of the problem. The counselor thought we should call him down and all have a visit. That sounded like a good idea. If I'd known how all this would play out I think I would of gotten up and walked out.
Justin was called down to the office. I'm sure he was surprised to walk into Doug's office and see me sitting there. Doug started scrolling through his grades on the computer and talking about how they needed to be brought up to a better level. So far so good. He then said to Justin that he understood he'd been sick alot. In fact he looked up his attendance record.
For some reason I really thought at this point was when things would start to fall into place. How naieve I was, but I was sure that Doug had dealt with something like this before and would magically know what needed to be done. Nothing like that happened.
Doug looked at Justin and said "But this isn't because you're sick, right? It's because you just aren't applying yourself, right?" At that age Justin always deferred to adults whether he agreed with them or not. So he dutifully nodded his head and agreed. End of visit, go back to class. Doug told me he would keep an eye on things. I believed him.
Looking back on this visit, my heart breaks for Justin. He was blindsided by Doug who started out as the concerned counselor and then pretty much turned the tables and discounted Justin being sick and just implied that he was lazy. I had not yet developed the backbone I was to get later. I never tried to tell Doug, in front of Justin, that being sick was the problem. I feel as if I really let him down and I regret that.
Things continued to go downhill with school. In October Justin got a job at Dillon's bagging groceries. He seemed to like the job pretty well. In fact he even talked about it sometimes - told me who he'd seen there, if they'd told him anything interesting. This was a little unusaul for him, as he was usuall pretty quiet.
I thought the job was going pretty well. He didn't miss alot of work because of illness. In fact sometimes I wondered what was really going on. Alot of times when he was sick he would feel better by afternoon and by evening he seemed pretty normal. Odd, but I still knew that he'd been sick earlier in the day, I could see it in his eyes. If you've ever looked at the eyes of a really sick person, they look dead. I recognized that look, I seen it for years in the mirror everytime I had a Crohn's flareup.

Saturday, January 26, 2008

As I begin to put my thoughts to paper (I guess that's just an expression, since this happens to be a computer!) I wonder what anyone else reading this would think. At first I worried about word usage and not writing anything that made our family look bad.
Then I realized, it does not matter what an outsider thinks of our family and our ways. They are ours and we dealt with everything the best way we knew how.
I once was given a wonderful quote by Maya Angelou - "you did what you knew to do at the time. when you knew better, you did better." That became the thought I held onto as I began my search to find out the source of my son's illness.
But I'm getting ahead of myself. I haven't yet begun to tell you that he was actually sick the summer he started his mowing business.

The downfall

The summer before Justin was a junior in high school he bought a mowing business from a friend. He'd mowed lawns for a couple of summers. But this summer he was in charge. It would be a big change.
Probably the biggest change was having to set his work hours and make sure the lawns got mowed in a timely manner. I learned that summer that many people prefer their lawn mowed once a week at exactly the same time. This was news to me as our mowing had always been a bit haphazard.
Justin was never an easy child to get out of bed but the summer of 2005 it seemed he wanted to sleep the day away, and many days he did. He quite often was just getting around to his mowing when I was getting home from work in the late afternoon.
He seemed impossible to get along with and was very often angry upon waking. I was feeling the stress of him not living up to his obligations as he should.
The mowing always got done, but quite often late. By late evening his mood seemed to be pretty normal. Justin never was much of a talker, usually on the quiet side.

The begining

This is a story of our familys' survival through the trials of living with and diagnosing a "rare" disease, one that not many doctors believe exists in the general population. It is a story of fear and mistrust and excruciating sadness for the family.
Mostly mistrust of doctors and alot of the medical community. When you live with a silent illness (as in no one else seems to see it) it sometimes feels like no one really believes that the illness exists - could all be in the head, looking for attention, etc. After awhile one really begins to wonder who to trust and who will turn against them. Not a whole lot of fun.

I used to feel like I had a life outside of my family, or at least one that included hobbies and such. Now, I feel like if it doesn't pertain to Cushing's, I have no interest.