My son

My son has Adolescent Chronic Fatigue Syndrome.

There are a lot of people who don't believe Chronic Fatigue actually exists. They generally are people who have not been around someone suffering from it.

My son is nearly thirteen, and has been dealing with this issue for nearly three years. He usually needs a minimum of fourteen hours of sleep per night, and will still often wake up exhausted. When he is in the grips of brain fog he is both unable to concentrate (sometimes not even to the point of being able to follow a TV show) and is emotionally quite fragile (bursting into tears with virtually no provocation). His joints hurt. He has developed major food allergies that leave us scrambling through ingredient lists on labels, because missing even trace amounts of some items can have him waking up multiple times in the night with stomach cramps.

He is physically able to attend school, on average, three half days a week.

When he's up he appears and acts and feels completely normal. This usually occurs for about 5-6 hours per day, usually late afternoon and early evening. Then the fatigue sets in like a descending cloud.

We get to deal with many of the usual prejudices people have about disabilities they cannot see: he's just lazy, if he were my kid he'd be getting up on time, if you made him go to bed every day at 6pm he could go to school...

There's a term for these people--a technical term: assholes.

We are lucky that my son is exceptionally bright. In seventh grade he is reading on a junior college level, and despite missing most of last year at school he excelled on the DSTP. But he wants to go to school. He wants to play soccer for his Y team (although he can only play in the Saturday games that start after 1pm, and usually only for 10-15 minutes at full speed).

We are lucky that my wife is an administrator in the school district and can pave the way with teachers and principals, that he has a twin sister who faitfully brings back his homework every day, that my oldest daughter has an equally invisible handicap (dyslexia) so that we knew going in what we would have to deal with.

We are lucky--very lucky--that we are in the upper middle class and could afford to make the calls and the connections to get him diagnosed. Both my wife and I wonder almost every day how many poor kids out there are being written off as lazy or un-motivated because they can't get out of bed at 6 am and don't know why.

We are blessed with a son who has shown good humor and good grace throughout this, and who tries as hard as he can not to ask for special favors. But it's hard when you can't eat what the other kids eat.

We are doubly blessed with neighbors whose children (having grown up next to ours for years as pseudo-siblings) also deal with invisible handicaps.

We are also tired much of the time. Emotionally as well as physically, and those of you with children disabled in any way know why and how, and all about the long nights of wondering, "What if?" What if something happens to us? What if he gets worse? What if he doesn't grow out of it? What am I not doing?

(worst of all, that insidious thought): When can I get a break from dealing with this every day? (you hate yourself for that thought, even though you know every parent who has ever been in your situation has it)

Tonight we're leaving for upstate New York, where one of America's only specialists in Adolescent CF hands out his shingle. It took six months to get an appointment that was four months off when we got it. He wasn't taking new patients. My wife was like water, wearing away a stone.

Unless you've been there, you have no idea how much hope and fear we have invested in the appointment we'll have on Monday. If I have to explain to you why the fear goes along with the hope, you'll never get it.

We're staying at my in-laws house, where the good news is that they sort of believe Chronic Fatigue exists, and we can stay for free (which helps, because the specialist appointment is neither cheap nor covered by insurance since virtually everything he does is considered experimental). The bad news is that they don't have wireless net access, and I suspect that between now and late Monday night or Tuesday my posts here will be few and far between.

Sorry about that; but then again, not really. If God appeared tomorrow and said, "I'll cure your son if you agree never to do any of the things [like blogging] that you enjoy again," I'd shake hands on the deal without a second thought. God hasn't offered, and I'm not blaming Her. This is our life: we chose to have these children and agreed to deal with the consequences.

My daughters and my son [and my grandson] have so enriched our lives that it hardly seems fair that we sometimes wake in the still of the night and wonder where the rest of our lives went.

At any rate--if you check in here with any regularity and note a decline in traffic, that's why.

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