Wednesday, February 27, 2008

Good news

Just a quick update. My husband is home from the hospital. There was no surgery, heart attack, tumor, hemorrhage, or (new) blood clots, all of which I've gone through before with him. Still, being my husband, he can't just have a simple diagnosis. It turns out that he has a rare blood disorder called polycythemia. His bone marrow produces too much hemoglobin, so his blood is sludgy with iron, doesn't circulate well, and leaves deposits of iron in veins throughout his body, further blocking circulation.

The treatment for this rare condition is one of the oldest medical procedures known to man, practiced by the ancient Greeks and Aztecs - bloodletting! They call it phlebotomy now, and use tidy syringes and tubing and bags. But it's still basically the same thing people did for hundreds of years to rid the body of its "bad humors" - letting gravity drain blood out of a person's arm.

And this simple procedure could, possibly, completely resolve all the health problems that have been plaguing him for years. So I'm very happy. Also very worn out. Thanks for all your kind messages and good wishes.

Monday, February 25, 2008

worried, distracted, and probably MIA for a while

I may be MIA for a a bit. My beloved husband is in the hospital. He had an episode of chest pain today, which of course makes us all worry about heart problems and is, in and of itself, bad enough. But he also has a rare blood clotting disorder which has already led to clots around his liver, spleen, and stomach and a six-hour life-saving surgery. So, for right now, we're in an uncertain situation. They're running tests and, who knows? Maybe they'll say it's nothing and send him home. But, then again, five years ago I took him to the hospital with what he thought was an ulcer and he went straight to the ICU and was hospitalized for weeks. So send us good thoughts.

Thursday, February 21, 2008

Another Kennedy, another dress

Doralong's fabulous post about a truly fabulous moment and meeting, inspires me to write about my own little, though very different brush with greatness. When I was five years old, my grandmother - who was big in the Democratic party and campaigned for Kennedy in the South - was appointed by President Kennedy to the U.N. Now, I've had some issues with my Grandmother, but she was spunky, I'll give her that. So, when they asked her if she wanted to bring any guests to watch her get officially appointed in the Oval office, she said, "Why, yes. I do!" And she proceeded to invite all her children, their spouses and children, and any other stray relative who wanted to come along - about 16 or 20 people, ages three and up. The Whitehouse was, apparently, flustered but said, "Well...OK."

Now, when an upper-crust Southern woman has any stress or excitement in her life, she either drinks or shops (I'm betting my Grandmother did both at the same time, on occasion). But since I was only in kindergarten, my mother and expressed our excitement by working hard on what to wear. So, girls, gather round and I'll tell you in gory detail about my dress. It was forest green, had a fitted top with a Peter-pan collar, a full skirt and a sash that tied into a big bow in the back. But the very special thing, the thing I adored about this dress, was that it had a saucy little pattern of hats on it, and some of the hats were....(wait for it ladies)... padded so as to be three-dimensional! I know, sounds weird, and it probably was, but to my five-year-old mind it was unimaginable couture wizardry. Mother, if memory serves, wore a simple sheath dress.

On the big day, we all crowded in to the Oval office to watch my grandmother get sworn in. I have absolutely no memory of the main event. I was five, after all, and wearing very shiny Mary Janes and a fabulous green dress with little puffy hats on it. Who could concentrate on all the mumbo jumbo grown up words? But I do vividly remember, after the swearing in, a very tall President Kennedy bending WAY down toward me, then reaching out gravely, and shaking my hand.

Of course, I still have the dress.

(P.S. - I have a picture of that day and all of us swarming in the Oval office. I'll try and scan it soon and post it here.)

Tuesday, February 19, 2008

(Berkeley) California dreamin'

I lived in Berkeley for fifteen years, and if I could, I'd be living there still. There were so many things I loved about living in there - the blue sky and golden hills, the Asia/Pacific rim culture, the bookstores. But one of the things I liked the best about it, was that everywhere you went, there were people of all abilities and disabilities mixing together with ease and naturalness. There were quadriplegics in the cafes, paraplegics zipping down the sidewalks in their electric wheelchairs, deaf people and their sign interpreters in class with me. There was a Center for Independent Living in Berkely, that allowed every make and model of the human form to make lives for themselves there.

So now I live in a different city and I'm the mother of a special needs child. When i pick her up from her wonderful school each day, I get a bit of that Berkeley feeling. I see kids with flippers instead of arms, kids using walkers or wheelchairs, or kids like mine, who have all their body parts in functioning order, but whose neural pathways are mysteriously tangled. And in this zone of the school, it's a tiny Berkeley-like rainbow republic, where these kids are seen for the lovely, brave little beings that they are. My daughter's autistic hand flaps are just one aspect of her, and don't make the rest of her - her high-spirited giggles, her pretty brown eyes - disappear.

But once we drive out of the parking lot, it's a whole different world. All those other kids disappear, and it's just us - our weird rainbow-coalition family with kids that are differently colored as well as differently abled - out there. And people do stare or ask stupid questions. And there are days I get worn out being the shield and sword for my darling girl, and decide I just can't cope, so we stay home. But mostly we're out and about, getting in the world's face, saying 'We're here, and it's our world too." And I can tell that sometimes, People look on us with pity, and sometimes they hold their own typically developing kid a little closer in sudden gratitude that they're not like my sweetie. Which is fine, even great. Anything that makes people appreciate the gifts they have in their own lives, even if it's me and my special girl, is a good thing.

But here's what I'm wondering (and if any of you have first-hand knowledge, please share); are other families with special-needs kids, perhaps kids with more obvious physical disabilities than my kid has, choosing to stay home, or stay in safe zones? Is it just too tiring to go out and be constantly fending off rude stares? And if so, what would it take to get more of these kids out and about? Special hours at museums, pools, etc. for only special kids and their families? Because I do think that if we go out more, the world will get used to us more. How wonderful it would be if we could all make our own little corners of the world places, like my beloved Berkeley, where all forms and expressions of the human body, of human abilities, could live out in the open, under the sun, which shines on us all, and judges no one.

Sunday, February 17, 2008

Hello, again

A few weeks ago, in Hello in there, I wrote about seeing a woman in full chador and being so surprised that all I could do was look away. I was disappointed in myself. So today I got a do over. I was at my neon-lit, antiseptic grocery store, full of pasty faced heartlanders, pushing my shopping cart down the aisle. As I turned the corner, there was a woman draped head-to-toe in black, with only her eyes peering out. She stood out like a raven in a yard full of sparrows. Again, I was surprised, but this time - having thought it through out loud here, in front all of you - I was able to glance at her, as I would anyone else, and smile, as I would with anyone else, and walk on.

This matters a lot to me because I know what it's like to be stared at, and I have to deal with people staring at my special needs daughter. So today I did better. Yay me, until the next time I stumble over something entirely different and unexpected, which, no doubt, you'll hear all about.

Wednesday, February 13, 2008

Elizabeth and the terrible, no good, horrible dates

As Miss Janey reminds us, Saint Valentine wasn't made a saint and given his own day because he was so good at warm-fuzzy snuggles and gift giving. On her blog (which you should visit for her many reasons including her masterful use of the third person, her wit, and her fierce author picture!) she says:

"Here is a short reminder of what the Valentine's Day actually celebrates. St. Valentine of Rome was killed by Emperor Claudius in 269 AD for helping Christians and refusing to give up his Christian faith. In 469 AD Pope Gelasius established February 14 as a day to honor poor, slain Valentine. Originally, St. Valentine was the patron saint of epilepsy, since he suffered from it. Later, when the church assimilated the fertility festival Lupercalia into their calendar, St. Valentine also became the patron saint of lovers."

So Valentine's day is really about martyrdom and sex. Which naturally makes me think of dating. So, in honor of those of you still out there in the fray, and because, though I've been happily married for a while now, I've paid some serious dating dues, I am going to share with you some of my worst ever dates. If you feel like it, share yours!

Once upon a time, in a kingdom so left-leaning that it had almost leaned right off the continental US, there was a young woman named me. Now, after I split up with the LyingCheatingScumbag, my heart was broken into so many tiny sharp fragments that I thought I might never be able to put it back together again. During that period I retreated into the magical neon forest to live among the Gays, where I had many lovely times there, dancing and dining with my boys. But eventually, the boys began to nag me, "Honey, you've got to get OUT there if you ever want to have sex again!" And so, heeding their wise words, I decided to date. Furthermore, for reasons that aren't clear even to me, I decided I would date, at least once, anyone who asked me. The dear boys again urged me on, saying, "Why not? You'll get a free dinner out of it anyway, and maybe more!"

Many men asked me out, and also many trolls. So, for your amusement, here are some of the low points on my road to true love. First, let me introduce you to the long-time friend, a seemingly nice guy, who invited me out to dinner one day. I assumed we’d split the bill, as friends do. But he said,"No, don't worry about it. I'll pay. I'm making good money these days." Which I wasn't. So fine. After dinner, when I was ready to go home, the "friend" got angry, saying that I should go home with him because I "owed" him. After all, he'd paid for dinner. I was appalled and we were friends no more.

Then there was the college professor who hit on me during our conference about my essay topic for the required-for-my-major-so-I-couldn't-drop-it class. That was tricky!

But last, and also worst, was my date with a young man from the People's Republic of China. He asked me to go to the symphony with him. The symphony part, when he couldn't speak to me, sadly, was the high point of the date. During the intermission, he was able to speak, and boy did he! As we stood on the crowded balcony looking out over San Francisco, that beloved kingdom of fruits and nuts, he proceeded to tell me that he thought that Hitler was right, that Jews were awful, and that black people were even worse. So I knew he was a complete and utter psycho. Nevertheless, I pointed out to him that Hitler would have gotten rid of Chinese people too. He angrily rejected this idea. Chinese people were a pure and superior race too, like white people. After the symphony, I made a quick escape, and decided not to date any and all askers anymore. And even my beloved gay boys supported me in this decision saying, "Oh my God! He probably would have abducted you and made you his white sex slave! Hmmm... what did you say his number was?"

No real advice here. No great wisdom. But tomorrow, the Valentine's Day happy ending.

If music be the food of love, then is this the food of music?

I LOVE the carrot flute. I'm getting out my drill and making one! And when I'm done, I'll eat it with dip. Yay.

Monday, February 11, 2008

For all of you

My husband showed me this cartoon. Made me laugh. That's me on the divan (ours is sage green), except without the beard and mustache!

Friday, February 8, 2008

Save it, kid. For therapy.

I'm back in the land of the functioning, though I haven't yet made it to clear-headedness yet. Still some fog between the ears. Thanks for all your nice notes. So early last week, while I was lying on the sofa completely viral and miserable, my oldest daughter (Thing 1) comes over to me. She looks around at the hurricane-like devastation caused by mom being sick for a week or so, and says, "When I grow up I'm going to keep my house very, very neat." I rolled my eyes and said, "Well, good for you. Now why don't you help out by picking up some of this mess!" But I really, really wish I'd had one of these to give her.

I could have added, "This will help you on your road to recovering from growing up in a loving but less than perfectly tidy home!"
Teens. Can't live with 'em, can't legally murder them. Anyway, I really love these banks. They're available at fredflare.

Monday, February 4, 2008

Sick again

Laid low by kid germs.........slept all day.........not one functioning brain cell. That is all.

Friday, February 1, 2008


I have two kids home sick, and not much time or energy for my own thoughts. So here are some rules I found that seem to apply well to more than just school. As #9 says, enjoy yourself. It's lighter than you think.

Immaculate Heart College art department rules, (by Sister Corita Kent)

1.Find a place you trust and then try trusting it for a while.
2.General duties of a student: pull everything out of your teacher, pull everything out of your fellow students.
3.General duties of a teacher: pull everything out of your students.
4.Consider everything an experiment.
5.Be self-disciplined. This means finding someone wise or smart and choosing to follow them. To be disciplined is to follow in a good way. To be self-disciplined is to follow in a better way.
6.Nothing is a mistake. There is no win and no fail. There is only make.
7.The only rule is work. If you work it will lead to something. It’s the people who do all of the work all the time who eventually catch on to things.
8.Don’t try to create and analyse at the same time. They’re different processes.
9.Be happy whenever you can manage it. Enjoy yourself. It’s lighter than you think.
10.“We’re breaking all of the rules. Even our own rules. And how do we do that? By leaving plenty of room for X quantities.” - John Cage.
Helpful hints: Always be around. Come or go to everything always. Go to classes. Read anything you can get your hands on. Look at movies carefully and often. Save everything, it might come in handy later.

(from mike.tczno)