Monday, March 30, 2009


I'm sick and so not yet coming to post Part Deux, but wanted to make sure that those who land here looking for info on Polymicrogyria, Lissencephaly, or Microcephaly get to this link: Children with Micro. There's going to be a very cool conference in Costa Mesa this summer. We're not going, but if you are able to, the speakers and docs are going to be incredible. The social aspect promises to be great as well.

Back to the Kleenex box, hot drinks and school papers...

Saturday, March 28, 2009

The week, part un

Q's asleep, finally, I think. I have a new toy -- a nasal aspirator. It freaks him out, what with all the vibrating, but it makes music, so it has to be also worth tolerating. What a conundrum for a little punkinhead. Thanks, Melanie, for the tip. He's breathing softly in his chair and I'm hoping to move him to his crib in a couple of minutes here.

There's just a ton to tell about this last week, the most trivial thing (and yet not so) being that I got organic milk for half off. Eight gallons of it. Yup. I'm terribly proud of myself. If we get too close to the expiration date on that last one, we'll have ourselves a vat of homemade chocolate pudding. From scratch. It's a win, however you look at it.

But other than the finding of the cheap organic milk (I do rock, thanks), I'm just going to share a couple of quick funnies from the week. Everything else is bigger and has further explanations and possible follow-up scenarios to report. I'm not thinking well enough to drag us through all those details, so here's the fun stuff.

On Wednesday, S and I were discussing the definition of a verb. (A verb is a word that does an action, shows a state of being, links two words together, or helps another verb.) It was her job to link names with verbs. She reeled off several and then came to me. "Hmmmmm... Mommy spends most of her time telling us all what to do and helping us get the things done we need to... I know! Mommy commands." So I'm grinning, trying not to be led off-topic by the little sprite, and it's time to list off action verbs before moving on to the next thing. She reels off walk, talk, hop, skip, and all their many friends. I ask her if she can say just one more before we move on. "Sure!" she says. "Pregnant."

Um. "What?"

"Yes. Pregnant." She declined my requests for explanation. It wasn't until the scenario below commenced that it hit me -- Duh! It's a state of being. Pregnant is a state of being. So of course it's a verb. What was I thinking? I'm still a little puzzled about her trying to connect it to an action verb, though.

I never did laugh until she was out of the room. And then only after I put on my Mommy Commander hat.

G was taking an English test Thursday. The first question was: What parts of speech does an adjective modify? Now. It is not unusual for a brain to freeze when presented with a test, so as he was sitting, making muddled and frustrated noises, I reminded him to go on with the test and come back to that question and that this process would do what it usually does -- unlock that brain so it can access the answer that was in there not an hour earlier.

He found himself unable to do this. "Mom. Are nouns and pronouns parts of speech?"

Me (staring at him blankly): "This is a test. Are nouns and pronouns parts of speech?"

G: "Well, I don't know! Are they? I haven't studied parts of speech yet!"

Oh right. Only for the last, what, seven years? I sat, unable to form a logical response to the boy. Eventually, he moved on -- just about the time I started to think that if he was fussing about this, the following pages of adjective clauses and their friends were going to fry his not so little head right there.

Fast forward to him writing in the correct answer after his brain came out of vapor lock and me snorting (just a little, after he was out of the room) while grading the durned thing.

It's so nice that they're cute, isn't it?

Friday, March 27, 2009


When you see crazy comin'...
...cross the street.

Tuesday, March 24, 2009


By now you've surely heard of the plane crash near the Butte, Montana airport?

There's not much to say, is there? It's heartbreaking that three families were just wiped out, now gone. Three homes, left for family vacations, that wait, empty now. One set of grandparents lost not only a beloved son, but their daughter-in-law and all of their grandbabies, another very nearly so -- along with two of their daughters, another a son who was becoming known as a surgeon -- as stellar in his field as his dad. I don't know how a person goes on drawing breath him or herself when suffering through the aftermath of such a thing. It seems too much to bear.

One of the dads who died was a freshman med student when I was pregnant with E on the same campus where we were. Seems like one of the moms was involved in the same mom's group I was when we lived there the second time. Heavens. I can't think about any part of this without welling up.

I hope the remaining members of the extended families can lean on each other and continue to draw on their faith as they grieve and move through the next parts -- funerals, memorials, investigations, press coverage.

Prayers for the families as we all squeeze those beloved littles and their mama/daddy just a bit tighter.

Sunday, March 22, 2009

Check your volume

Quick! We're having a wee Eric Johnson concert. Adjust your sound accordingly -- up if you like guitar, down if you don't. Here we go...


Decisions, decisions (there's video).

Friday, March 20, 2009


Good info.

We're up. Q's watching Spirit. The horses, the whinnying, the music seem somewhat hypnotic for him this evening. He's quiet. Just had a big yawn, so I'm typing as softly as I can. I've folded about three loads of laundry, found dirty dishes stashed behind pillows (ew!), done a general tidying of the living room and am now having a hard time holding my eyes open while I wait for him to wear out.

Let's take this opportunity to catch up a little. Q has had his first couple of appointments with his new Speech Path friend. She came into his PT session for the first half hour yesterday. Co-treating is cool, but hard to pull off, given the peculiarities of scheduling. She and Q's PT discussed and fitted Q into a specialized feeding chair. They're looking for one in their cache of loaners -- this would thrill me. The one that seemed to have worked for him was the giraffe chair, related to his monkey stander. Which I have to remember to take with us in the morning. Q is growing again and needs the sides adjusted for hip width. I've made most of the adjustments for him, but this one appears to require at least genes of an octopus, and since I'm not currently in possession of six extra arms and hands...

Following Q's second Speech visit, Tuesday afternoon, he had his AAC eval. Very interesting stuff. He recognizes more pictures than we thought previously. He seems to know his colors. He seems to be able to pick out A and B when given a choice of two letters. This. blows. my. mind. I had no idea! I mean, I suspected something was up, the way he flings himself toward the TV if Word World is coming on (S and K love it and schedule their mornings around it, but he's now the show's biggest fan). Those letters are huge, he gets the auditory and visual together, plus context. I've been reading Dr. Seuss's ABCs to him because he has suddenly developed a thing for turning real pages, as opposed to just board books. (I had that book memorized for years, starting when G was about 14 months old. "Big A, little a, what begins with a? Aunt Annie's alligator... Many mice making music in the moonlight. Mighty nice." "Silly Sammy Slick drank six sodas and got sick, sick, sick." We used to recite it to him when we were driving.) Q's dived toward the hymnal as I'm playing piano with him on my lap, switching from playing with his hands on mine to making his move toward those pages so he can pick the next song. E had him on her lap as she was finishing an English worksheet last week -- he went for her textbook, flipping pages like mad.

We talk about colors and things, but I always think I should be doing more. He's noticing shapes, repetition in lines and shapes, and is enjoying patterns. So why wouldn't he be learning his letters? I've resorted to singing the ABC song to him ad nauseum when he's eating something he doesn't much like, just to get him to swallow while he's distracted. It works pretty well, thankfully. Maybe it's working as both distraction and education? It was almost two years ago that he started mimicking S and K when they were reciting vowel sounds. He'd yell "Aaaa!" from his car seat while we were doing reading lessons/piano lessons. Always as if he was trying to get our attention so we could be sure that he too knew the names and the sounds of the vowels. He's always loved Latin chants and DVDs. I've had G and E reading their math out loud to him since he was just weeks old. I figured it helped them concentrate and he needs all the help he can get with vocabulary building. As G heads firmly into Algebra it should be more and more fun -- he starts quadratic equations next week. Maybe Q will notice the similarity in the word "quadratic" and his own name. How does one teach a kid when one can't be sure of comprehension or retention? Conundrums.

Can you believe that he has color recognition? It was amazing. The eval guy held up first one ball, moving it in a small circle to make sure Q was looking at it, then a second, with another small circle. After Q had truly seen both, the eval guy asked him which one was, say, green. Bam. His head turned and his eyes were on it. Same with blue. He hesitated with yellow, looking back at the eval guy, quizzically, "Could you please repeat?" Eval guy (who totally rocks), repeated his question and Q's eyes slammed the yellow ball. When he was asking Q whether he wanted bubbles or helicopter, based on his picking one of the pics he had stuck to his knees, Q went nuts trying to get to the picture of the helicopter. So nice eval guy shot off the helicopter (lightweight flying ring thingy), which obliged Q's fascination by glancing off the top of his fuzzy head. He loved it. Lucky for him, we're going back for another half hour. Apparently, there were some things we didn't get covered.

In the meantime, I'd made notes for the OT about new goals, including perhaps some pre-reading skills/time on the computer. We talked about how maybe pre-reading would be too much, but maybe pre-pre-reading would be more useful. Like shape recognition, better/faster color matching. He plays a color matching game, but has been out of the computer lab for so long (scheduling difficulties) that his response time has slowed and maybe he's frustrated that after all this time, we're still coming back to those monkeys in their primary colored pajamas? Who knows. But then, to have him throw this skill set at us. Wow.

Eval guy talked about helping him to further understand that things have meaning: stop signs, other road signs, store emblems. Because. Since he's really not going to be verbal, per se (barring an outright miracle -- stranger things have happened), he needs to be able to tell us and the general public what he's thinking, what he needs, what he wants next. In order to do this, he's going to need to push buttons that have voice recording attached. In order to really communicate, he's going to need to identify which button is which. So now he needs to know pictures, symbols, and perhaps letters. Perhaps he'll read. Shoot -- maybe he's all busy in his head, getting ready for quadratic equations or working on his upcoming dissertation. Who knows? As adamant as he became about getting to that picture stuck to his knee, I'd be surprised if he didn't fight for every millimeter he can gain.

But then that's who he is. He pushes on when most kids are crumping, flattened by tough therapy sessions. He's almost always ready for more of whatever he's been doing. And he's probably smiling, even if he's just getting cleaned up from having puked. He seems to be an adrenaline junkie trapped in an uncooperative body. What a thing, huh?

Now if I can just get him to sleep. Spirit hath returned to the DVD menu. Perhaps the silent boy is sleeping? (Please, God...)

He's out! Shhh. Please. Pray that he stays out for the night. I need good sleep for the next few hours so I can avoid this horrid migrainey cold that's been going around.

(whispering) Later. XO.

Thursday, March 19, 2009

Bedtime prayers

K: "...and thank you that we have places to go and things to do so we don't have to be bored... as cows. I mean, all they do all day is eat grass and poop. How boring is that. I mean... unless there's a bull in there."

Me: Praying that she can't hear me choking. Praying that I can keep my voice level long enough to finish prayers and guffaw elsewhere.

Monday, March 16, 2009


Now there's a title. It's accurate and metaphoric, all at once. I used to have pages of ads, pictures that I'd torn out of Shape Magazine and others, shots of women running: on the beach, down the boardwalk, around a lake. I had them stuck to the back of our bedroom door, sort of a "vision board," to borrow from The Secret's lingo. Anyway, I've thought about it over the years. Had dreams, literally and more figuratively, of doing sprint distance triathlons, but I've never known how to rearrange everything (kids, hubster, house, and etc.) to make training of any kind show up on the radar. Plus there's this ridiculous knee of mine. I truly can't afford to mess with it. If I'm lucky and careful and all that, according to the orthopedist, I should have about five more years before I have to figure out how to finance another knee surgery. Instead of running, we biked on the weekends and used to walk after supper, taking the family around the neighborhood, littles in the bike trailer/stroller or later up on shoulders when the little legs ran themselves tired. It was awesome.

So. Fast forward to now. I still have a bazillion legitimate reasons not to run, but the idea won't leave me alone. In my experience, this urging is best listened to. And quick, before it has to swell to epic proportions to get my attention and I end up learning to run by, say, having to relearn things like standing and walking in some intensive PT program somewhere. Guess I'd better get creative with the schedule, then.

Over the last few weeks, I've tried, pushed in fact, to make sleep a priority for me. I've made it to bed before midnight a few times. But even on the nights where Q sleeps for several hours all in a row, I'm often startling awake, feeling that things are somehow amiss, just as I used to when Someone was on call. Getting better sleep always equals better everything else for me, including just basic ability to keep up. Perhaps if I go back to just focusing on the sleep issue, other things will again feel a little easier.

(Brace yourself for the inevitable whine which follows right... now.) I believe I can now provide hard evidence that whatever happens, no matter how fast I run (pun intended), I will never, ever, not even one time, get it done. Not all of it, maybe not even most of it. Given that, it seems like an important thing right now to know whether or not I'm tired or depleted, you know? Because tired, dog tired, is to be expected. A droopy immune system may also be expected but it is not even a little bit acceptable. It would cut into my ability to push through, as do certain more chronic pain issues. Those things have to be handled, now, and gotten past, ASAP. The ones that refuse to go away just suck the life right out of a person. That's usually the time that a persistent track pops up in my head: "You're just one person. What makes you think you can do this? You can't do this! You're only one person!"

It's taken me too long to shut that stoopid voice down, let me tell ya. (Rolling eyes at self.) The big problem with that voice is that it's right. And also dead wrong. I can choose to buy into the truth that it's all on my head here, all these needs and plans and schedules to keep, or I can go with a slightly less panicky version. It has occurred to me, in sometimes emphatically illustrated ways, that I haven't a moment to spare on this sort of thing. Every last thing needs to be constructive, useful, a building up instead of tearing down. I mean, we all know about the tearing down of muscle in order to build it up (great reference to the same here), and that certainly applies in holding oneself together: the holding together is often best done in the context of new skills, often gained in a tearing down portion of the cycle. Perhaps especially so when one has dependents who, well, depend on one.

Steven Covey says in his tape "How to Write a Family Mission Statement" that when pilots fly, they're off their stated plan as much as 90% of the time. Ninety percent!? And yet, they make course corrections, consulting with their instruments, with their flight plans, with towers. They almost always arrive on time and at the correct destination, even when they've spent ninety percent of their time in the air pointed in a direction other than the one they wanted to be headed. The take away point, for me, is the willingness to course-correct.

I wonder sometimes how the kids will remember these years. That's pretty much what keeps me flying along at a high rate of speed. Vacuums get filled up you know, so best to have a full stock nearby of truly Good Things with which to fill them. So. Rather than being focused on the vacancies, it's vitally important to put all ounces of energy into making good memories, pulling material from every direction, talking when words barely come, listening when sleep is calling, reading and researching and praying, and staying in the moment and loving on 'em even when they're just plain horrid. Wish that last one were easier.

We're in a very different stage of life these days. G has applied for a summer volunteer position at the zoo/aquarium*. He's excited and a little fearful about it, laughing self-consciously when I asked him whether he was hoping they'd call or hoping they wouldn't. E wants to dive in right after him -- she's been trying to figure out how to go rock drug-addicted babies or help therapists where Q is every week. Those places won't take volunteers under 14, so she's been pretty disappointed. I'm trying to think of how to maybe go, the two of us, to do this. K, for all her current frustration with certain sibs, loves on Mr. Q like nobody's business. She is all about how to make him laugh, and does she ever. S is navigating new ground too: how to be responsible and grown-up when no one recognizes your mad butter knife skillz (food prep) or that you're jolly well just as capable of just about everything as any of the other kids. Q is busy -- he's decided that food is mostly passe, unless it's dessert (hmmm, sounds like he's three). He's getting ready for an AAC eval because his new Speech Path is all about getting things done, and she likes PRC. (Hand clapping, happy dancing) And? She knows the rep. She'd be happy to call Mia up and ask her what they can do for us in the way of a loaner. Something to play with so Q can see what he really needs.

So I have five on the verge. They're setting up the pins and knocking them down. By contrast, I'm feeling too often like I'm just about keeping up, when the most useful place for me to be is out ahead. The therapy bags, diaper bags, purses, duffels, music bags, church/quiet bags, and their ilk, all need sorting, laundering, repacking. Q's toy/therapy shelves need sorting. The girls closet needs reorganizing according to size and season. I got a thorough job done while they were gone at Christmas, but it seems like no matter how much a person does in there, clothing and miscellaneous detritus just keep popping up. The laundry room could use an emptying of everything that isn't nailed down and then a thorough cleaning (detergent droplets make a horrible goo). We might be up some pairs of socks at the end of that effort.

While all the above is true, it's also just as true that the kids are 56 days into their goal of 100 consecutive days of violin practice (piano hasn't fared quite as well, but close). It's also true that the dishes keep getting done, the cupboards wiped down, the floor swept and mopped. It's true that the kids keep reorganizing their school cubbies, putting away their violins, sorting laundry. Bags of unused or no longer needed items continue to leave the house, headed for Goodwill or ARC. Things that must be kept are put into their memory boxes. And everyone gets fed really good stuff (my interpretation) and then washed up. Every day. Learning happens, conversation happens. Every day.

"Beyond a wholesome discipline, be gentle with yourself." (The Desiderata) It's hard to resign oneself from being open to the judgements and qualifiers of the rat race. But it's worth it. Or so I hear. I'll let you know when I reach the mountain top. Right after I have a nap.

We'll consider it a course correction.

*This process made me grin. It was very like the mad dash made for the proper postmark date, nearly an hour from where we were going to school, me driving pell mell through the dark while someone was writing his personal statement for his John's Hopkins application. "Discuss, discuss. Scribble. What?" Repeat. G was far more collected than either of us were, much to his credit, and no writing was done en route, but still. He sounds more like his dad all the time, the whole process brought back such strong memories, all while I'm feeling a little out of body about my eldest filling out applications for anything. Seems like he was a toddler in my arms, first asleep over my pregnant belly, then carried by his dad, all of us at the Monterey Bay Aquarium, just moments ago.

Friday, March 06, 2009

More Shhhhh.....

That last post was wildly optimistic, as it turned out. That night seemed like it was going to go well, but turned out to be one of the worst we've had in the last few weeks. At least it didn't require me to rearrange the living room furniture at 3 am so I could catch mere minutes of sleep between his kahfitzing episodes. No joke. He was fine for around twenty minutes at a time, then needed holding, a drink, walking, snuggling (but no sitting down, thankyouverymuch), rearranging. Eventually, around 5:30, he slept for about an hour and a half before getting up for the day. He did have a nice nap that afternoon, though. I can say confidently that I could totally pass on a repeat of that night (the rearranging of furniture night).

Last night was good -- the boy slept in his own bed from about 11:45-ish to about 8 am. That's about as good as it gets here. He went down a little while ago, fell asleep on grampa's shoulder, all warm and snuggly in the rocking chair. So I'd better get to bed too. If I were to stay up and try to Get Things Done, it would inevitably result in his awakening at about the same time as I was falling asleep.

Anyone needing a thesis topic, there's gold in the study of that phenomenon. Parents everywhere would like to know how little ones know and act up or wake up when the mamas and/or the daddies sit down to read, want to go potty alone, try to mop the kitchen floor without interruption, or even engage in, ahem, "alone time".

Cover your eyes (or skip this paragraph) if you have tender sensibilities. One very good solution to that last scenario: two cookies + a video = "two cookie quickie". I read about that in a parent to parent advice column when the first two were very small indeed. I hadn't been much into keeping cookies in the house before, but we had 'em more often after that. And other treats. A small paper cup full of raisins and chocolate chips will do in a pinch. Or you might just set the bag of chocolate chips in the middle of the floor with a spoon. Between that and the movie, you'd be set. What? How do you think we got the other three?

Before I push my sleeping kidlet luck, I'm heading to bed. Here's to good sleep, less sinus weirdness for all, and cookies.

Happy Sabbath. Hope to be back soon with updates about the Q-meister.