Thursday, September 18, 2008

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.

17 comments:

Brian Miller said...

Steve:

You and your family will be in my thoughts. Hang in there.

ElfNinosMom said...

Elf had similar difficulties at that age, so I have an idea what you are going through. The important thing, as you correctly noted, is that your son gets the help he needs. I'll keep you all in my thoughts.

Jim Fryar said...

Steve; I don't know anything about the Chronic fatigue syndrome, but an old boss of mine had four sons with dyslexia.

With specialist teaching they were OK and have all done very well in life.

All the best with it.

Tyler Nixon said...

We (your friends and family) are always with you, in person and spirit.

Bless you for the strength and compassion you share in all you do, especially how much you give of yourself to your children.

LiberalGeek said...

Steve - My wife has Chronic Fatigue. Before we met, she was just as bad (perhaps worse) than your son now. She has good months and bad months now, but mostly good months. If we can help, let me know.

It will get better.

Shirley Vandever said...

Steve, you and your family are in my thoughts and prayers. All I can say is that old and tired saying, "Good luck".

It sounds like you have a totally awesome family. Everyone in the Newton clan is one lucky summabeech. How lucky they are to have you and your wife as parents !

As we say in the biker world:

RAGE ON.

Chainsaw said...

Wishing ya'll positive results and more insight into this.

I am hip to the Doctors, the diagnosis', and get the correct and competent help, scene.

George Donnelly said...

Good luck with this Steve, hang in there!

rc said...

Steve at first my wife was diagnosed with CFS, then they added Fibromyalgia and Mieners disease and now Lupus. As you noted, not many understand these esoteric diseases and some in the medical profession dismiss them.

I myself have my own infirmities that many who do not experience them can grasp. In fact I was given up for an early death years ago (though I'm quite sure I have lost a few years).

My wife and I though suffering different infirmities are convinced that we face a daily reprieve based on our spiritual conditioning.

To add frosting to the cake we have a two year old dog that they have been telling us since birth won't live another 6 months (they still tell us that).

I tube feed it daily. It has heart and doesn't understand Dr. talk.

In short we have learned to not give up before the miracle happens.

So long ago my prayers progressed from Lord fix me to just, hey I will accept your will just give me the strength to deal with it.

Well maybe "progressed" isn't the right word. We still have a few knock down drag outs about it. Damned if I don't believe he/she likes a good fight.

Prayers be with you and yours.

Sam said...

Steve, my heart goes out to you. It is never easy to accept that one of your children is not completely healthy. My daughter had an emergency appendectomy while at college and it was nearly my undoing. I also am dealing with a life-threatening illness that thus far has not totally affected my day-to-day living, but has scared the bejesus out of me anyway. I've not posted on my blog since. I just can't seem to think of witty things to say, and therefore it has no appeal to me right now. It seems so trivial to me, over and above what I am going through, and my daily talks with the Lord are the most I speak to anyone, other than those I must interact with at work. God has always looked out for me (for surely otherwise I'd be 6 feet under by now). And He knows what's best for me. After my short stint of panic, I'm good now. I pray that He will bring you the calm you need to get through this also. When you're ready, we'll all be here waiting for you.

Waldo said...

Besides your own eloquent account, one need only look to the poet Floyd Skloot, and pianist Keith Jarrett, both of whom have grappled with CFS for years. Best wishes, old friend.

Brian Shields said...

My best wishes go out to you and your family. We hope the doctor finding something significant to help your son out, and be able to move on with his life.

Delaware Watch said...

I'm sorry Steve for your son, you and your family. Having a child w/ a lifelong disability is my fate and his as well. It's awful, indescribably awful at times.

I hope your trip is successful. You have all my best wishes.

Steve Newton said...

Thank you all.

I promise to report back in on this topic by Tuesday.

Pandora said...

Steve, my thoughts are with you and your family. Please, let me know if there's anything I can do.

heather said...

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Thanks,
Heather

AnonymousOpinion said...

Steve, I have a good friend who has CFS and neurally mediated hypotension and possibly fibromyalgia. He also had brain surgery before I met him for a Chiari I malformation, that helped, but did not cure him.

Apparently all the problems he has now began after a bout of mono when he was a teen.

His usual CFS doctor is Dr. Rowe at Hopkins.

He has reached out to others with CFS, and one person I met made it back to normality with something called Limu - a seaweed extract. I wouldn't have believed it if I hadn't seen it myself.

Also, my friend has found this website useful for explaining his condition for well-meaning individuals who don't understand what it means to have a chronic illness. I have another friend with chronic pain who, when we meet, I ask her how many spoons she has today.

I wish your son and your whole family all the best, and I hope the doctor can find an effective treatment.