Sunday, November 3, 2013

One Day at a Time

November 3, 2013

As I look back to Maddy's high school days, they are mostly a blur. It was mostly the same routine day after day, with small variations determined by her health. In many ways, it felt good, because there was a system in place that allowed her to succeed, though sometimes with extraordinary effort. It was mostly predictable: get up, go to 1/2 day of school, I pick her up, go see Grandma in the nursing home, come home, eat lunch, Maddy naps for 3 or 4 hours, gets up, does homework, repeat, repeat, repeat. I had no real idea of what the long term view of chronic fatigue, and then fibro, meant for her. I didn't know what to expect for her after high school. All the people I knew that had chronic fatigue were adults, and most of them were quite limited in what they were able to do. The one teenager we knew of was the daughter of Mrs. I, the counselor in the middle school where Maddy attended. And her path included a full school schedule and medication to increase her energy so she could keep up the pace. We later found out this girl did not do well long term with this approach.

So I coped by not looking too far ahead. The 'one day at a time' approach helped me to just deal with reality. It was late in Maddy's senior year that I got a great 'birds eye view' of what was going on. It was when she got a full tuition scholarship to the local community college. They liked her grades and test scores, and just assumed that she was graduating! That really opened my eyes to possibilities for her! I was very excited for her! What a wonderful boost to her self esteem. It confirmed to her that all the hard work she had done in high school was worth it.

I was pleased that the scholarship was to a local college. At that point, I didn't know if Maddy would be able to have the physical energy to live away at college. This seemed to be a great way to test the water and let her get into the college rhythm, and see how she did. I am really grateful that she could do this transition in stages, both for her sake and for mine. Since so little is known about chronic fatigue, her doctor really couldn't give much practical advice. And I tended to be quite cautious in my approach to new situations. Maddy was a bit more adventurous, but still took things slowly.

That senior year was rough in several ways. When she started having fibromyalgia, the constant pain really wore her down. And it took away something that she had enjoyed: soccer. Amazingly, she had been able to play recreational soccer through most of her chronic fatigue. She had to adapt her playing style, as she had to do with most things. She became a defender and relied more on strategy than speed. She was able to block balls and really contribute. It also exhausted her for a couple of days afterward, but the mental high made it worth it to her. But when fibro struck, all of a sudden soccer was not fun. It was excruciating when a ball hit her. She reluctantly had to drop this sport and she really mourned the loss of it.

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