I've neglected my blog a bit lately because we've been so busy around here. The last week of May and the first week of June were packed full of end-of-school events, soccer stuff, work-related travel, travel to see family, and houseguests. Whew!
In the midst of all that, our two boys each had friends sleep over one Saturday night. I was trying to help out their parents, one of whom has been very sick (most likely Lyme disease) and another one who broke his foot. Besides, our kids love to have their friends sleep over, just like any other kids. Sleep-overs at our house are a bit different, though, because both boys have CFIDS and will crash if they don't have enough sleep.
So, on this particular Saturday night, my husband came up from the basement after shushing the boys for the tenth time. He was completely frustrated - by the impossible task of trying to get four boys to settle down but also because we're in the position of having to interrupt sleep-over fun to make sure our boys will be able to get to school on Monday morning. He said to me, "When will we be able to just let kids be kids?"
We both recognize how fortunate we are, that Florinef has worked so well for our boys. We know of many kids with CFIDS who are too sick to even get up off the couch (and we went through that with our own sons). They really are able to do a lot of what healthy kids can do now. But, we still have to be constantly on alert - take your medicines, drink more Gatorade, don't stay up too late, take a nap so you won't feel bad later...
So, now it's summer vacation. What a relief! We still have to be vigilant about many things, but we can loosen up a little bit without worrying about missing days of school. Already, the boys have had several sleep-overs (we still can't let them stay up past 11), have had friends over almost every day, have enjoyed our community pool, and have spent wonderful hours playing in creeks and building dams. Summer is a wonderful time for us, without the constant specters of homework, make-up work, and counting days absent. Now is when we can let our kids just be kids.
I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on improving our conditions and enjoying our lives in spite of these challenges.
1 comment:
We just had a sleep-over talk at the lunch table today. Our daughter is having a couple girls sleep-over next week. The older one has stayed with us quite a bit, but this time her younger sister is coming along. She might not get the whole "go to sleep by 11:00" so hence, the discussion.
Have you been upbraided by anyone to have the kids do more chores? We get this from our parents a bit - but our kids are still at a point where they can do so very little that when they can do something we try to help them "just be kids" for awhile. I keep swearing I will not be made to feel like a bad parent about this.
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