She passed out at her party.
This would be reasonably acceptable behavior, of course, for a college sophomore who had one Red-Bull-and-Vodka too many while celebrating her birthday. However, it's much less so for somebody who's turning 5 at Gymboree.
The Young Daughter's having "episodes," as we call them. They look kind of like seizures, but we're pretty sure they're not. The usual progression: Young Daughter is playing at full speed, then she starts to look kind of out of it, then she goes all pale, then she wants to go to sleep right there, wherever "right there" is. Then, usually, she throws up.
Mercifully, that last part didn't happen Sunday. But the rest of it did, right up to falling asleep on her mom's shoulder while 20 screaming kids ran around jumping on things and throwing balls and dancing and stuff.
It's hard, really, to pin down what she does during these "episodes." The simplest way to put it would be that she's just not herself. Pretty much all of the behavior related to these incidents is 180 degrees out of character for her.
The hospital trip to diagnose these things was scheduled last week, before yesterday's occurrence. She'll stay until they can figure out what it is. So far, they've set aside five days. That's a long damn time, when you're 5 years old.
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This forum is almost exactly one year younger than the Young Daughter. The first post is dated Oct. 21, 2001, two days before her first birthday. It was at a "well-baby checkup" two days later that we found out that she might be somewhat less than well.
Up until the last few months, the impact of what I used to somewhat lightly call the dread disease was pretty minimal. She had some spots on her skin. She had to go to elongated doctor's appointments every few months. She had to undergo MRIs under general anesthesia. Turns out one of those, back in 2003, almost killed her. In the course of trying to track the neurofibromatosis, we discovered that she also has a condition known as malignant hyperthermia, where general anesthesia causes her to run fevers well into triple digits.
Even after that scare, we slipped back into something resembling a routine. In the back of my mind, though, ever since I learned how to spell neurofibromatosis, I thought that 2005 was going to be a rough ride. The disease flares up in tandem with hormonal activity -- it usually starts to get really bad around puberty, but you also start seeing effects around age 4.
My original fear was that she'd regress developmentally. That hasn't seemed to happen, at least not in the cognitive sense. She ALSO has a hormonal deficiency which has put her in the single-digiteth percentile on height and weight for her age. She's not a dwarf; she looks like a perfectly proportioned 3-year-old.
After the brain tumors (which sounds a whole lot more direct than "optic gliomas") were discovered, things changed a bit. We needed to do more tracking, because if those tumors -- which are otherwise benign -- start to grow in her head, there's a chance they'll get in the way of stuff that actually needs the room more. So, more MRIs. More eye exams.
Then, the "episodes." Rare at first, then more frequent, then noticeable to even the casual observer.
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Normalcy, now, is not an option. The Wife and the Young Daughter will spend the next several days in the hospital while people who spent lots and lots and lots of money on their educations rub their chins and squint a lot and say, in Doctor Voice, "Well, we don't know what's going on." The treatment could be chemotherapy; 18 months of hell punctuated by the occasional really bad day. The treatment could be surgery, where somebody opens the hood on my kid's head and rearranges some wires, which might or might not fix the problem. The treatment could be, "Well, these things are going to happen every once in a while; they're not causing any permanent damage and they're not really a sign of anything; you just have to keep a close eye, keep her comfortable and accept this as your new "normal."
All of those choices pretty much suck.
Meanwhile, the palms of my hands are scorched from the friction caused by my attempt to stop the world from turning for a few days. Everything's on hold right now. It's all on hold. The other two kids have to have Halloween tonight; you can't begin to guess the depths of my lack of enthusiasm for taking them around the neighborhood begging for candy while everyone asks "Where's your other one?" or, for those who know, "How's your other one?"
The Wife spent almost 40 minutes this morning rattling off the list of responsibilities for which I need to be responsible over the course of the coming week, while she sits in the incredibly uncomfortable accommodations offered by our local children's hospital. Her job is damn hard, much harder than mine, and requires greater organizational skill than I posess (and my organizational skills, frankly, are quite good.)
And oh, yeah, I need to figure out a way to hold down my job, too, to pretend to care that somebody's database is down or that the software is behaving funny or that they really wish their problem would move to the front of my line. I've been doing a pretty good job of feigning interest for the last month. One major project was completed last week, and another is starting to build steam. Several minor projects also are calling for my attention. For today, anyway, they're just hearing it ring, or hearing "please leave a message after the tone and I'll get back to you after I find out whether they're going to drill holes in my daughter's head."
For today, anyway. At some point, I pull my hands back and let it all start spinning again.
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I have no desire for anyone's sympathy. Neither does The Wife, nor the Young Daughter. Yeah, it's a crappy way to spend the day, in the hospital, but sympathy isn't going to help anything. Many are in far, far, far worse situations than we are.
I do care that you care. I appreciate the well wishes and the kind thoughts and all the people who are interrupting their lives to help us while ours are being interrupted. I appreciate it more than my facility with the language will allow me to express.
It's time now to spin the globe. Gotta jump back on.
Monday, October 31, 2005
Sunday, October 30, 2005
Where the path leads next
The Young Daughter has taken a turn. It hasn't been a good turn. A bunch of doctors tell us what they think it is. Nobody is willing to commit. Nobody is willing to offer a course of treatment.
The Young Daughter goes into the hospital on Monday, length of stay undetermined. The mission: Find out what it is that is going on, and get some answers.
The disease is neurofibromatosis type 1, for those of you just joining us. The Wife is recording events and news here. Just send up some good wishes. Right now, those help more than anything.
The Young Daughter goes into the hospital on Monday, length of stay undetermined. The mission: Find out what it is that is going on, and get some answers.
The disease is neurofibromatosis type 1, for those of you just joining us. The Wife is recording events and news here. Just send up some good wishes. Right now, those help more than anything.
Tuesday, October 25, 2005
Rosa Parks, 1913-2005
"I am leaving this legacy to all of you ... to bring peace, justice, equality, love and a fulfillment of what our lives should be. Without vision, the people will perish, and without courage and inspiration, dreams will die -- the dream of freedom and peace."
Others have gained more fame and fortune and notoriety during the struggle, but it all started that day in 1955, when that driver said, "I'm going to have you arrested," and she gently replied, "You may do that."
It had nothing to do with a seat on the bus, people. It had to do with teaching us how to be human beings, to treat each other with the respect all of us deserve -- and to stand up (or stay seated, in her case) for what is right.
The lesson hasn't been learned yet, but thanks to her, we're well on our way. Those of us born after 1964 will never know how much courage it took for her to say, "You may do that." We have Mrs. Parks to thank.
Others have gained more fame and fortune and notoriety during the struggle, but it all started that day in 1955, when that driver said, "I'm going to have you arrested," and she gently replied, "You may do that."
It had nothing to do with a seat on the bus, people. It had to do with teaching us how to be human beings, to treat each other with the respect all of us deserve -- and to stand up (or stay seated, in her case) for what is right.
The lesson hasn't been learned yet, but thanks to her, we're well on our way. Those of us born after 1964 will never know how much courage it took for her to say, "You may do that." We have Mrs. Parks to thank.
Thursday, October 06, 2005
Baa
Last night in Tampa, 22,120 sheep flocked to the St. Pete Times Forum (why is the arena in Tampa named after the newspaper in St. Petersburg? Do you think the City of Dallas would have allowed the Fort Worth Star-Telegram to swoop in and do such a thing? But I digress) ... anyway, 22,120 sheep flocked to the big arena in downtown Tampa to welcome back the NHL and their Stanley Cup Champion Lightning.
This, of course, being the same NHL that decided NOT TO PLAY AT ALL LAST YEAR rather than figure out an equitable way to divide its multi-billions among its members.
And no fans of the Stanley Cup Champion Lightning are even the slightest bit angry about this? That it was Oct. 5, 2005, and they were hoisting a banner that read "2004 STANLEY CUP CHAMPIONS"? Nobody thought it was the slightest bit ridiculous?
Sheep. Baa. This is why the professional sports moguls are the leading geniuses of the Western world. Nobody takes more money and gives back less. Wish I had thought of it first.
This, of course, being the same NHL that decided NOT TO PLAY AT ALL LAST YEAR rather than figure out an equitable way to divide its multi-billions among its members.
And no fans of the Stanley Cup Champion Lightning are even the slightest bit angry about this? That it was Oct. 5, 2005, and they were hoisting a banner that read "2004 STANLEY CUP CHAMPIONS"? Nobody thought it was the slightest bit ridiculous?
Sheep. Baa. This is why the professional sports moguls are the leading geniuses of the Western world. Nobody takes more money and gives back less. Wish I had thought of it first.
Saturday, October 01, 2005
It must stop. Now.
She is just another one of more than 1,900 so far, just another dead soldier. She's the first woman from Palm Beach County to die in Iraq. She was 21. Born in 1984, the year I got my driver's license.
I should insert a political comment about how f---ing stupid war is in general and this war is specifically. I'm not going to do that. I'm going to send up a wish for peace for this woman and all those who believed in her, and leave it, because that's all I can do.
I should insert a political comment about how f---ing stupid war is in general and this war is specifically. I'm not going to do that. I'm going to send up a wish for peace for this woman and all those who believed in her, and leave it, because that's all I can do.