Wednesday, February 22, 2006

One Day At a Time

We constantly remind ourselves that we just have to take each day as it comes, one at a time. Some days, like today, it's more like one hour at a time.

I woke feeling horrible, thinking I could not possibly get out of bed...but I had to. I had to help get our sons off to school, had to help our older son catch up on math lessons he'd missed and drive him to the middle school. He was only able to handle two classes today, but we were quite happy with that. He went snowboarding with a friend on Monday. It was a difficult decision, but we let him go since it was so important to him, fully expecting him to crash. He handled it surprisingly well - very sore, achy, and tired for a couple of days but still able to get to a few classes. His stamina is greatly improved since getting the dosage right on his Florinef (a medication that helps to increase blood volume, to treat orthostatic intolerance). I was in much worse shape today and crawled back into bed three times for naps.

Besides my normal trips back and forth to the middle school, today included a much bigger challenge. My husband and I had to meet with the principal of our younger son's elementary school (he's in second grade). The principal and his teacher wanted to discuss our son's extensive absences this year. This was a very difficult meeting for us. We explained that our son has had chronic, recurrent sinus infections, but we also told them about CFIDS. We've been noticing possible symptoms in our younger son for over a year now, not wanting to admit, even to ourselves, that he could also be developing CFIDS. To discuss our fears and suspicions with other people today suddenly made the possibility seem more real. We're still hopeful he won't develop it full-blown; Dr. Bell told us of cases he's seen where kids showed early signs but it never fully manifested. So, we're hoping for the best but need to be prepared for the worst.

It feels like a never-ending nightmare sometimes. How could we possibly bear another child becoming ill? You think you couldn't handle it, but, of course, you do what you have to do, one day at a time.


"You can only see as far as your headlights, but you can make the whole trip that way."
(I don't know where this quote originated, but it's one of my favorites these days)

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