Saturday, March 29, 2008

Three Good Things

One -- Dinner: Chiles Rellenos with quinoa cooked in vegetable broth. Stupendous. Dessert: Chocolate Croissant Bread Pudding with homemade raspberry freezer jam. A fabulous reward for the efforts of the day.

Two -- Tonight a sweet and precious little guy, not yet three years old, came flying through his ninth surgery for Chiari issues. He may be allowed to leave ICU early, having come off his ventilator quickly and popping back more easily than expected. Sing with me -- Ha-lle-lu-jah.....

Three -- Q is asleep. G'night.

Thursday, March 27, 2008

Q's news

Q has been a busy boy. Sleep hasn't been so spectacularly awful in a week or so. Life has reflected that nicely. (Thank God.)

He's now using his head for buttons (switches) at therapy, his hands at home. His skills with the Boss Car (aka: Q's Jeep -- which he perks right up at the mention or sight of), are improving, including being able to push the button with his head and not jump out of his skin when it motates him quickly forward. He's more consistently and vocally making choices between two activities or objects. He sits more, more readily, less floppily, more consistently. He actually holds himself well enough now to not flop out of his car seat, Bingo chair or therapy seat while I'm buckling him in. This is a very big deal and has taken a really long time. Okay, it could probably have taken a lot longer than it has, but it was so gradual that I didn't notice it until he'd been quite good at it for about a week. That said, he doesn't do any of this by himself nor well enough to turn one's back for even a second. Still, progress is progress.

He's gotten better and better at the use of all buttons, which should lead directly to his very own Big Box of Words (a phrase lifted shamelessly from Rob who wrote an actual book about his daughter's PMG and their family -- which is selling, how cool is that?). Q's might very well be only a small box of words, and it might not happen for quite a while, because there are a million other things to overcome first. For example: he'll need to get those fingers out more and do so more predictably. This is tough because his motor planning delays are biting his little behind every time we turn around. He gets all excited when he's at the computer in therapy, looking for the durned cow, pig or horse, depending on which is his favorite for the day, but can only vocalize, not hit the button when the actual animal of choice is still in range for the picking. After a few seconds, the chance to hit that animal is gone and the next one comes up. Usually by then, all the neurons have aligned and are firing like mad, ready to go. So he gets the pig when he wanted the cow, or the horse when he wanted the pig. Thankfully, he's a very good-natured little guy and he just sighs and grins and gets ready for the next time around, while enjoying the E-I-E-I-O part. Or he'll be looking for a button with his fingers when it's right by is head and he's just used it many times successfully.

This week in speech, he played and joked with all of us (therapist, student, me). He had a plastic slinky which was new to him this week, with which he'd become quite fascinated. To the right of his head was the "all done" button, to the left "slinky." When he hits a button, he hears the words (recorded) and gets the action he's specified. This week, he went back and forth between the buttons in an apparent frenzy, too excited at the prospect of the slinky to get only the button he actually wanted, hitting both instead. It was clear he wasn't done because he just would have eaten the slinky to show it how much he loved it, if only it hadn't already been so incredibly cool looped on his arms, waving about. So after moving quickly between buttons the first time, he caught on that we thought he was funny, so he went back and did it some more, laughing, looking to see if we were noticing that he knew this game, now. When he finally slowed down enough to pause between the buttons, the student quickly disappeared the slinky beneath the tray so he had to ask for it again, making the "all done" button have some meaning, thank you very much. He appeared confused for a second as he realized the game was changing, then bonked the slinky button and became engrossed in it again.

We had the EI and vision ladies here this week. It's clear that his vision is coming along nicely (pardon the pun) -- he's exhibiting less and less signs of CVI (hooray!), more and more congruent use of both eyes (double hooray!!). Though, when tired or ill, that left one just wanders off to play in the periphery without asking permission and often doesn't come back when asked. It sounds as though the vision therapy lady might be able to come once a month for brainstorming purposes. She's an old hand at this business of getting kids to progress as far as they are able and will continue to be an invaluable resource for as long as the state lets us have her. This week we talked about how to include Q more regularly in all aspects of his life. We've already had him "coloring" at the table with us when we're doing school (his face looks nice in those slashes of orange and green washable pipsqueak marker), using (attempting to eat) play dough, pulling his favorite toys from table to floor so his sisters have to get them up for him again, or simply fiddling excitedly with the tablecloth (at these moments I believe him to be delightly planning insurrection). When we're all eating, I try to make sure he is too, though that can be tough because someone has to be feeding him, it's usually some degree of an unholy mess, and not all of what he eats is compatible with the moment. i.e.: Feeding him his supplement by syringe in his car seat while the rest of us enjoy a quick stop at Taco Bell? Not happening.

Speaking of vision, he's just in the last couple of weeks become completely fascinated by his shadow. He waves to it. Tries to grab it. Wants to nail that sucker down. I remember the older kids being fascinated with their shadows around 2 1/2 - 3. Funny, no? Also, we had about four inches of snow yesterday, most of it coming down while it was still light out. Q alternately stood up or sat or launched himself at the window for about an hour, watching the snow fall. Though changing positions, he managed to hold himself erect, chin up, and stay focused for nearly an hour. This was incredibly hard work for him, and it thoroughly wore him out, but he sustained it. I'm still hopping about with glee over this. His only pauses were momentary head turns to look at whomever was holding him up as if to ask, "You people knew about this and didn't tell me?" or "Holy cow! Did you know about this stuff?" or "You're still watching, right? I'm not making this stuff up, right?" and then he went right back to it.

Speaking of speaking, he's started calling "Gaaaa-aaah" when I call G. I don't know if this one will be sticking around or not, since most of his vocalizing/verbalizing is intermittent at best, at worst, transitory and unavailable to him when he clearly wants it. He's saying "geh" or " 'gain" for again, and this one has been pretty available to him for about three weeks now, in use most frequently when one of us is playing with him and he wants a quick repeat of some fantastic thing we've just done. "Hi" and "eye" are still in there, but not as frequently used (even wehn he relaly wants them) as they have been at other times. His turnover in reaction to questions posed has shrunk quite a bit over the last year -- going from one to three minutes down to immediate to several seconds. This is hopeful for his switch use, though perhaps not exactly applicable. He can cough on cue about 60% of the time -- a very big deal since the same motor planning things are in play there as in speech. Just thinking about this now, it's a flat out miracle that he manages to clear any "minor" aspiration in a matter of a couple of hours, six at the most, since he has to cough to do it. But perhaps that's the sympathetic nervous system and not reliant on him consciously connecting the dots in order to accomplish something.

His favorite (manual) toys are currently rattles which a.) resemble a phone and b.) resemble a curiously radioactive crab. Both are bright (red and wildly multi-colored, respectively) and just the right shape for him to hold tightly and wave about as though he's conducting a symphony. I'm guessing he'll be a telecommuting scuba diver. Or a cell-phone-using marine biologist. Or a shamelessly enthusiastic fan of talking on the phone to anyone, at anytime, and he'll own goldfish. He already has the phone-use thing down. What can I say? It makes him happy.

Now for the goldfish.

Wednesday, March 26, 2008


So I've read a little more about narcissism. Good news: you can too! And a little more, for kicks. Okay, one more. If you have a minute to spare, the reading of the above will at the very least make you feel shockingly normal (since I know narcissists don't read here -- they are, after all, only 5%-7% of the population), perhaps provide a few laughs (the person/s writing the second and third links is/are funny), and will likely help you to significantly increase the gratitude you feel for your circumstances.

Do not believe anything on the mere authority of teachers or priests. Accept as true and as the guide to your life only that which accords with your own reason and experience, after thorough investigation. Accept only that which contributes to the well-being of yourself and others.
~ Buddha

This turns out to be probably the best advice one can give to those dealing regularly with narcissists (which is why I lifted it from a site I was skimming), since such relationships often require reality checks from the "normal" world. If you know someone who calls around getting confirmation that she's not crazy (75% of narcissists are men), send her the info above. Because she's not crazy. And sometimes confirmation of one's sanity is all one really needs.

We all have some of the traits listed in those pages, so if you can laugh at yourself, you'll at least be entertained. And sometimes a good giggle is all one really needs. (cheesy grin)


Sunday, March 23, 2008

What say you?


Monday, March 17, 2008


When you've caught up on your Mensa reading (snort), head on over to Lab Rats and check this out. What a difference a day makes, for gifted kids becoming adults often find their feet. But it's super to have a well thought out, well-written reminder that often the issues aren't obvious for the children we love, that sometimes it's the later bloomers who take the day. Perhaps most especially in their satisfaction with their grown up lives?

Baby Jack

Prayers needed. And I'll stop complaining about being tired. I bet Jack's mom and dad would cheerfully take zero sleep forever if it would help him.


Cheek on clavicle,
Drool wet shirt beneath. He sleeps,
Breathing easily.

Q's been sick -- his waking early the morning of the last post was the beginnings of a cold. The snot has receded, the meds are again less in number, and he's out cold, minus the snufflies which were waking him every little bit, preventing real rest even for naps. Thank God it was just green snot, confined to his head, and our major complaint was loss of sleep, not pounds or nebulizer use.

I just love you people for thinking of me and walking the road, if not exactly with me, perhaps in parallel somewhere. I'm wishing you beau coup blessings, the embrace of your beloved, and lots 'n' lots of sleeeeep.

G'night and Happy St. Patty's Day/Monday.

Friday, March 14, 2008


What're you doing up at this hour of the night?

Me? Oh, nothing special. I'm thinking about tiling the entry. Or writing a thesis proposal. Maybe I'll write up the lesson plans for the rest of the school year.

Hey, have you read the issue of the Mensa Research Journal on Homeschooling for the Gifted? I haven't quite finished it. I took it to California with me and everything, but it's a research publication (thus, a little weighty, erm, not exactly a cliffhanging novel, okay, so it can be as dry as the Sahara) and I was pretty busy with Q the whole time, so I didn't get to finish it. Maybe I'll go attend to that.

Most of the time, if I'm out before 2 a.m., it doesn't matter how many times I have to get up with Q or whomever, or when I have to be up in the morning. As long as I can be asleep by two (10:30PM is better) and stay out long enough to get in a pinch or two of REM-ish sleep, I'm okay, even if I drag through the next day. For some reason, 2 is my witching hour. It's when everything goes haywire. If I'm awakened around that time, I turn into a slobbering mess. That is the point where I begin to speak of sleep as heroin addicts speak of their next hit. (Hat tip to Martha Beck for the apt analogy.)

Have you read Berkeley Breathed's comics? I can't remember the name of his new incarnation of Opus, et al, but you know the anxiety closet the characters have? Apparently I have one too. So. I'm up. Not because of the closet, but the door went wiiiide open nonetheless. And the piles of nonsense about how lackadaisical, inadequate, miserable, pathetic, pitiful, etc. I really am (don't I hide it well?) are floating around in my head. Ever wonder what it might feel like to be a pinata? I think I have a vague idea.

Sigh. I had such high hopes for this night. Everyone was out at a reasonable hour.......

Aw, geez. Now I need Kleenex. Sniff.

If you're reading this and it's 2 something in the morning, GO TO BED!

Wait! Do you need tucking in? 'Cause I'm up and don't have anything else to do. Wanna see my resume? I sing lullabies. I do voices in stories. I make sure everyone can see the pictures. I promise not to giggle audibly if you decide to sing your bedtime prayers like a show tune or say them like a robot. What, no takers?

Okay, then. Maybe there's a load of laundry to run...


P.S. Q got up at 5, snuffly and unhappy. I'm considering opening a vein for the day in order to more speedily deliver caffeine.

Thursday, March 13, 2008


Internal Exile

Richard Cecil

Although most people I know were condemned
years ago by Judge Necessity
to life in condos near a freeway exit
convenient to their twice-a-day commutes
through traffic jams to jobs that they dislike,
they didn't bury their heads in their hands
and cry "Oh, no!" when sentence was pronounced:
Forty years accounting in Duluth!
or Tenure at Southwest Missouri State!
Instead, they mumbled, not bad. It could be worse,
when the bailiff, Fate, led them away
to Personnel to fill out payroll forms
and have their smiling ID photos snapped.
And that's what they still mumble every morning
just before their snooze alarms go off
when Fluffy nuzzles them out of their dreams
of making out with movie stars on beaches.
They rise at five a.m. and feed their cats
and drive to work and work and drive back home
and feed their cats and eat and fall asleep
while watching Evening News's fresh disasters--
blown-up bodies littering a desert
fought over for the last three thousand years,
and smashed-to-pieces million-dollar houses
built on islands swept by hurricanes.
It's soothing to watch news about the places
where people literally will die to live
when you live someplace with no attractions--
mountains, coastline, history--like here,
where none aspire to live, though many do.
"A great place to work, with no distractions"
is how my interviewer first described it
nineteen years ago, when he hired me.
And, though he moved the day that he retired
to his dream house in the uplands with a vista,
he wasn't lying--working's better here
and easier than trying to have fun.
Is that the way it is where you're stuck, too?

From Good Poems for Hard Times
selected and introduced by Garrison Keillor

Monday, March 10, 2008


So this is going out on a limb a little bit, I guess. But... remember my friends that I asked y'all to pray for? They could use some more of the same. Their souls are weary and in need of respite. Their hearts are strong and keep pushing forward, despite feeling rather numb. As well as being agony to live, it's terribly difficult to watch -- especially the kids. These friends expressed the same when things were newly revealed with me and mine.

Here's the going out on a limb part: I'm recommending a couple of things on the subject. Why?


I'd say that by now it's pretty obvious that I'd give just about anything to have a do over with a certain someone. (You've noticed this here, yes?) So in case anyone else is standing on the verge of something, here are a couple of resources, things I wish I'd known. You might find them helpful.

First, anything by Dr. John Gottman. He lives and breathes the study of relationships and is funny to boot. He thoroughly knows whereof he speaks and grad students scramble to get in under his tutelage. Somewhere in my stack of parenting books I have his book Raising an Emotionally Intelligent Child. I haven't gotten too deeply into it (too much of life creeping in, I suppose), but it characterizes his reputation for good sense and successful relating. Since the planet at large is running short on time and rarely sits down to read anymore, you can get his marriage wisdom on CD here.

Also, this set. I realize that she's more controversial and people have their own distinct opinions of her and her affect. Whatever. If she turns you off, fine. Skip it. But her thoughts on cherishing each other in marriage are sturdy ones and will be indispensable for many.

If you're reading this and have any other suggestions, please share them in the comments section.

Know that wherever you are, if you're struggling, you are not alone. Yes, this is hard. But it's not the first nearly unbearable thing you've ever done. You will be okay. Better than okay. You are well made, suited for life, created to conquer its challenges. There are many great resources and folks everywhere are praying for you. Shoot, the universe itself is cheering as you make and remake this commitment to your family. Look around, the evidence for all of this is everywhere.

So that's pretty much it. I have to go repack my guts back into my belly now. (blushing)


Sunday, March 09, 2008

Did you know...

...That egg does not come off a van window or any other part in a car wash?

Me either. But I do now.

Oh -- and, guess what? Q is throwing off his blankies in the night. Again, this is one of those things that may not sound like much but the boy has been practically immobile in his sleep for the longest time. It's very cool indeed to have him doing things that lean heavily toward the neurotypical side of behaviors. C'mon, let's happy dance. A one and a two...

And now he's sobbing again. He must have had a nightmare during his nap because he got up just plain inconsolable. Food wasn't the answer. Random noises are ticking him off. Losing his grip on his toy is enough to bring the world to an end. I thought he'd be happier with a fresh diaper but even clean pants haven't mended his little heart. Well, he had a few minutes of pleasant conversation. Guess that was his limit for the day. Heh.

Wah. Off to rescue E -- who rescued Q. Sometimes I wonder about him. He's all snuggled up to her right now, shooting me sidelong glances that say, "See, mom, somebody cares. Somebody gave me what I wanted. Ha. All I wanted was to be snuggled/carried/nuzzled/carriedcarriedcarried. Sheesh, lady."

Thursday, March 06, 2008


Today we noticed the leggy foal in the middle of a field. She was too new to know that her mama would make a dandy windbreak and so stood, wobbling, blinking into the breeze, feeling the March turf under her barely steady hooves.

We spotted pussy willows, fuzzy catkins stretching out in cautious friendliness, looking for tender pets from fat little wondering fingers. There were red buds aimed skyward, barely restraining their unready selves from popping open too soon. Already there are a few cherry blossoms, waving and teasing from nooks in yards, anxious to get on with it, hesitant to be too quick.

The bunnies aren't out yet -- perhaps they're waiting for the lawn to show itself properly succulent. We've been preparing for their arrival by listening to The Velveteen Rabbit woven together with the loveliest backdrop of piano, and reading up on Peter Cottontail and Benjamin Bunny -- they're cousins you know. Somehow they all seem to wait for us out in the shrubbery, alternately loved into threadbareness and dressed in cunning little coats and shoes.

The frogs in the hollow are noisy, nearly a cacophony. The crocuses are up, crowded together and bobbing in a dense Happy to Be Here party. The daffodil buds are reaching longingly for their friends and neighbors, stretching their yellowgreen necks out to gently touch noses. Tulips and hyacinths edge out a little further every day, inquiring as to the weather.

Everywhere, fat tufts of moss fluoresce, pushing aside the dried grasses, those leftover winter widows, their dried sadness bowing them to the earth as the old cedes to the new. Pansies smile, blinking into the sunshine, their faces fresh and rain-flecked, waiting, persistently optimistic and expectant, for the family of buds beneath to join them up top.

The sun began the day in a pushy display, pouring itself in at the windows with dancing abandon, calling little girls to flit about and do magical rainbow chalk drawings on the driveway. Later, the clouds would flee ahead of changing winds, the horizon showing steely gray then brilliant blue then fading slowly into rosy apricot.

It's dark now. The kids are sleeping. The garbage is out. The lights are low. Of course there's the laundry and dishes, the tidying and organizing, all the wrapping up of the day that's done and the readying of us all for the one to come. But the house is quiet, save for the ticking of the clock and the rhythm of the keyboard underneath my fingers.

Well. I'm off then. Among other things, the spoils from the foray to the shampoo section at Target need putting away. There are books to pack up for the bigger kids to use during therapy time in the morning. And a bed with flannel sheets is calling my name.

Rest well. And remember to kiss someone goodnight. Maybe even an extra time or two, maybe a lingering, lusty, springy kiss. Smiles. What're you waiting for?


Sunday, March 02, 2008


I'll just say this: not even a picture can explain how incredibly cool this was. We kept trying to get Q to pick up his head (the kids were his biggest cheering section, of course), but the Big Red Button (6") was just too interesting. The best part of this nifty Jeep is that when he punches the button, he goes.

For a boy destined to be as much of an adrenaline junkie as we can help him to be, achieving motion on his own is huge. Have I mentioned that his favorite word is "go" followed closely by "'gain" (for again, of course). Sure, his motor planning issues keep him from saying what he wants when he wants to say it, often from doing what he wants in a similarly timely fashion, but who cares, man? The Big Red Button is here. to. stay.

Now I have to sneak off to do some long overdue rewriting of stuff that went poof when the old computer died. (It's coming, Kate. I promise I'm not ignoring you!)