Tuesday, April 29, 2008


To expand on the notes from the previous post...

Q is needing something different for a bed. Or rather, I'm needing him to have something different for a bed. I have this old, lingering nonsense in my left arm, shoulder, back, neck, head which I've handily accumulated over the years as a result of a few car accidents. It's flaring up. Wah. Thus, I'm having trouble hefting the kiddo over the rail into his crib.

Since he can't yet get himself to a sitting position, the mattress is still in it's highest position. After discussion with the assistive tech guy, I have some ideas about how to proceed. He wouldn't qualify for a special needs twin bed, since the crib accommodates him just fine, it's just me that it's not working for. (Those beds are $5-7000, by the way.) So we need to figure something else out and we're on our way to that. I'm going to look at using a toddler rail so I wouldn't have to lift him up so high. If that doesn't work we'll go down the list until we find something that does.

Assistive/Augmentative Technology: The device in question allows Q to have toys plugged into it and to then turn them on himself with his switches (buttons). The buttons are different from what he has in that the "jelly bean" switches aren't recordable, are individual (as opposed to two on the same unit), and can be used with velcro as either head switches or be positioned for his hands. As I've mentioned before, his motor planning issues are the driving factor in trying to get anything to work for him. Some days his head works better, some days his hands. Sometimes he holds his head easily and can turn and nail those little buttons every time, sometimes he can turn his head but not reach the button because he just can't get his head up that high. Sometimes he needs the switches positioned out to the sides because he can't make his hands approach the midline -- they'll only move laterally, and sometimes they must be positioned individually, across from a hand because he needs to reach across the midline in order to make those hands work.

All the work with the little jeep ("boss car") and head switches is getting him ready for a motorized wheelchair -- which he'll have to prove he can drive before he can have one of his own. All the work with buttons, pictures on/in the buttons, voicing the toys or commands with the buttons, time in the computer lab with him showing choosing in games, hitting those switches to progress through animation or to show he's understanding color correlations (!), all these things are meant to prepare him to use a CheapTalk, or something like it. This too he has to show he can use and make progress with before he can have one. Ultimately, I'd love to think that he'll be requiring one of these lovely devices (another $7-10,000). For now, merely the prospect of the amount of time and sheer effort on his part to take him "just" to this level is daunting.

After I sat and waited about forty minutes while a nice man typed some stuff out this afternoon, it appears that we won't quite be twisting in the wind, resource-wise. Strange how dealing with certain entities can just suck the life out of a person. Maybe the exhaustion is more about hearing the sad, even desperate stories as one waits. By the time one is done, one finds oneself longing to get off the planet, already. If one had, say, superpowers and could fix some of that wretched poverty, loss, confusion, pain, then perhaps one wouldn't feel so powerless. You know?

I ran out of time today to call the pharmacy about the broken basket. Tomorrow is another day, with more coloring, math, reading, appointments, feeding, diapering, band-aids, snot, laundry, slurpy kisses, and phone calls to be made.

Q's still up, having a little spit-up. Off to find the tummy meds. That's it for today.

Sunday, April 27, 2008

Notes from Friday

(During Q's PT session, I consulted with the assistive tech guy who is da man for equipment and modifications.)

CRIB modifications:
raise w/ 2nd mattress
check out toddler rail fitting
modify "safety" feature on railing?
Bring in paperwork for crib

Aug. Com.:
SpEd writes the letter, Speech Endorses it. . . . .
--1st -- AbleNet & 2 buttons
--2nd -- CheapTalk -- late summer?
. . . . .or I write it. Cut and paste pics from AbleNetInc.com for PowerLink3 and 2 jellybean switches. Then email to Speech, OT, SpEd for approval then referral to FRC (Family Resource Coordinator) and DDD (Dept of Developmental Disability -- the folks who coordinate and pay for this).

Call Pharmacy re: broken chair basket and replacement.

Discuss further:
social affect vs. abilities -- emotional response can get in the way of motor skills -- limbic and motor cortex connections -- cortical damage is hard to disentangle.

Thursday, April 24, 2008


I did it! I did it! I made......

Pad Thai. Woohoo! I am now officially invincible. Because I can pull a pile of stuff out of a cupboard and toss it all together and come up with Pad Thai, that's why. And it's a good thing, too. This saves me having to move to Bangkok. Phew.

Can someone tell me -- what is the deal with spring?

We had four straight days of cloudbursts that brought hail and snow, punctuated by stretches of brilliant sunshine. The weather has been changing so dramatically that one can't count on it remaining the same for more than a few minutes at a time. A friend was shopping the other day and looked out the store windows to observe the drama, only to turn her head back a moment later and see the opposite thing presenting itself. It all makes one feel a smidge unbalanced. As if one needed any help.

I've got paperwork to wrangle again. We find ourselves in the unique (or not so) position of not qualifying for much in the way of help through state agencies, yet unable to cover the full extent of the issues at hand. Anyhoo, this combined with the Very Odd Weather and another string of bad sleep on Q's part is making me craaaaanky.

In other arenas: I think I have to sort and dump the rest of the household goods leftover from our previous lives. I've no prospects of being able to use it in my own home -- though who knows: as I type things out here it often seems to be something of an invitation to God to toss in something that is not at all what I was expecting. Anyway, there's no room here, storage is unbearably expensive, and the thought of getting rid of those physical things that are part of what/who I thought we were has me sorta reeling.

Worse, much of it we weren't even planning to keep. There's the once pretty dining set which he'd found new, at half price, before E was born, which the children and multiple moves rendered rickety, that he repaired faithfully, the chairs which I reupholstered (with his help) as a birthday present to myself. I wasn't so sad at the thought of leaving it (and most of the rest of our grad school era furniture) when we were to move off to his residency because we had, after all, the whole of our lives yet to make more memories with new stuff that would gather their own stories as we raised our family and so on, and so on.

In the hoopla, things like vases from the flowers he gave me were donated, pictures disappeared, stuff got rearranged. I would have been reluctant to let those things go had I known they would be really all that was left of, you know, us. I thought we were selectively sorting so we could move less bulky stuff with us as we crossed the continent.

I feel rather sheepish and dense about this. Why? Because I should somehow have known, I suppose. I guess that with all his kind words and endearments, it somehow never occurred to me that he'd leave. I mean, we had four kids and one on the way. I still have a little cognitive dissonance going on with this. Originally, back when the inside of my head felt all echo-y because of all this and the slowly unfurling news of Q, and it was pretty clear that the one-year mark was still going to completely suck eggs (what with all the seizures and aloneness and medication and sleep deprivation and unmitigated loss), I decided that I'd give myself two whole years before having any sort of expectation about my capabilities re: the broken heart. Two wasn't nearly enough. I read somewhere that one often needs as many years to completely exit a relationship as one has invested in it. So I have, it would seem, another few years to go. Or so.

Go ahead. Roll your eyes. I see you and I know you will anyway, with or without my permission. So let's just make it easier. Take a little break, get it out of your system, I'll wait right here.

(Tapping of fingers...)

It's just weird to be living this, you know? I had all kinds of plans and contingencies in mind for us, but this never made the list. In the first months and years after my little brother died I had these incredibly vivid dreams about how we were all sitting on my parents' bed, talking and laughing, or playing at the park, or just horsing around in the yard. Waking up from those dreams was always a jolt. This is sort of the same. Sort of.

The other night when we were celebrating two birthdays, I was coming around the corner into the kitchen and half expected to run smack into a certain someone. The oddness of that feeling still hanging around (especially when many folks seem a smidge invested in my just moving on, already*) is sort of like, say, driving home from some really sweet family event and being t-boned in an intersection while everyone is still laughing. The car is totalled, people are carted off in ambulances. There are protracted legal, insurance, health issues which need an exhausting amount of attention, but after the stitches have been removed and some have had intensive physical therapy, everyone's pretty much okay. It's just that there's a new normal, that you never quite get over wondering what might have been minus the head injuries, and the adrenaline of the impact lingers. The next time you leave a happy family event and approach an intersection, somehow your heart pounds out of your chest, your adrenaline pushes the limits. And you feel a little off, maybe for a long time. No real explaining it. It just is what it is. But all around you, none but the people who were in the car really get that sometimes, time itself still whirls and twists, stops cold, and you are back there, wondering if everyone is going to make it, if the ambulance has yet been summoned. And the feelings linger and linger and linger, though life goes on.

Then one finds oneself with a fistful of Jelly-Bellys, wondering whose idea it was to make the outside of the grapefruit ones taste like actual rind. What is the flavor involved in the lavender one supposed to be, anyway?

So the newsboys concert was awesome. We shrieked and danced, waved our arms and screamed like we were losing our minds. Well, us grown-ups did. We embarrassed some of our children nearly to death. Ha. I gave the kids Kleenex to stuff in their ears. Yup. I'm a geek. But someday? My children will be the audiologists. 'Nuff said.

The spirit of the place was amazing. The band was hilarious and the performance very cool. The most impressive thing, though (beside the conspicuous lack of the cult of personality which bands usually pack along with their sound equipment), is this, the charity which they started in order to extend their vision, giving their faith hands and feet, as it were. So much of their music translates easily to the thoughts that go 'round in my head. Spending that time being simultaneously buoyed up and thoroughly grounded was a singular thing. And S has some serious moves on her little self.

My favorite quote from the evening, from the lead singer: "When my time comes, I'm not gonna be thinking so much about the pearly gates or the streets paved with gold... I'm going for the dancing."

Yeah, baby.

Since it's taking me now at least a week to write one silly post, let's just keep rolling, shall we? Tuesday, Q got to meet his new speech therapist and we worked a little on feeding and discussed the idea of an augmentative communication device. He demonstrated both his love for water (a fish, this boy is, just like his daddy), and his ability to aspirate when drinking while seated perfectly upright in a supportive chair. I've thought of these events as something that isn't aspiration. His choking on saliva has improved, only rarely progressing to red, watery eyes as he's strapped in his car seat and we're flying down the freeway. Reading this post and yesterday's observation from the speech/feeding therapy lady has me rethinking everything.

The swallow study Q had done when he was an itty-bitty guy was, in my not so humble opinion, inconclusive. The radiologist was young, uncertain, a smidge rattled at all the crying. He said he'd seen enough to be able to tell that Q wasn't aspirating, but I'm not convinced that much of the contrast formula made it down the boy's throat. A nursed baby having to swallow cold formula while swaddled onto a board and held still? He struggled, not much left the bottle, there was a lot all over the blankets.

I'm wondering if it's time to have another study done, or if we should just let it go. He's got dimples in his hands, he's not emaciated, his daddy's side of the family runs long and lean... I dunno. For now, I suppose I'll just keep poking Just For Kids into him and stirring coconut milk, etc. into everything I can.

You know, sometimes when typing this stuff out it sort of hits me how different Q's path is from his sibs. You know how you always wished your babies could be little for just a wee bit longer? Q is physically sort of like a seven month old with poor trunk control. A seven month old who wears toddler clothes. Who wears toddler clothes, has a few words, which work intermittently, kind of like his limbs, and seems to be fairly age-appropriate emotionally (which is so huge in the scheme of things that there's not room here to go into it). His whole life is sort of Q vs. his motor-planning abilities. Of course this description doesn't begin to encompass his story or experience, but maybe it helps convey some of the particulars.

If you don't mind, I have some prayer requests. (I knew you'd say that -- thank you.) First, that whatever it is that needs to move for Q to get whatever appropriate equipment he requires will do so. I don't know what's holding up the lending of the fun little Jeep. Probably the therapy unit could use a few more to loan out? The other requests for switches, timing boxes, electronics, aug. com., and etc. have time limits on them. Q will age out of this program in under a year and there's no way I'll be able to afford to meet these needs. The wheels turn slowly in these programs, bless them, so divine urging would be useful.

Second, that Q continue to make really solid progress with whatever new therapy things he needs to do. There's a lot for him to do when it comes to getting these new devices nailed down and it's important that those motor skills line up so he can be consistent with his efforts. If I could figure out how to predictably influence this, I'd probably be up for a Nobel prize in medicine. It's tough work, frustrating for all of us. The therapy people, bless them, keep confirming for me that there's a kid in there, all right. We just have to figure out how to help him let himself out. I swear I'd be beating my head against the wall if it weren't for his punkinhead smile. Speech therapy is especially fun with him -- it's hard to do anything at all with your mouth when you're grinning like that.

Third, there's a lot going on around here these days. Piano recital comes up next week, the tumbling home show in a few weeks, the usual hectic schedule is firmly in it's place, and there's the stuff from our former home to attend to. There are a bazillion very good things afoot for folks working on charitable efforts, people going way out of their way to show kindness and tenderness, and the paperwork wrangling. It's just a lot. Thrilling, fulfilling, and a LOT.

Fourth, about those children. They could use being remembered in prayer, too. The going back and forth between two worlds is hard for them, as it is for about a million other children in this country. The realities involved in having a fun/vacation place to visit contrasted with a place that represents the more regular stuff of life (schoolwork, chores, schedules, etc.) are tough. And Q misses them terribly when they're gone. It's horrid, really (see above discussion re: his abilities).

Thanks for your thoughts and prayers. Lending good will to each other and interceding on another's behalf is such an act of grace. It is deeply appreciated.

About the music -- I think you know why I picked the first song in the playlist. Last night, I nearly woke the boy, nibbling his cheek and nuzzling his neck as I carried him to his crib. Slurp. I hope you enjoy it (the music). I do. Any excuse to dance like a loon these days (big grins). Aaaall the way down the page, there's a pause button on the upper left corner of the box, if you can't stand it (more grins). You can also click on and skip through the titles, sampling as you go.

If you haven't already, do go look at the Global Tribe page. The music is very good, yes. The purpose, though, is even better.

So ends the week-long Writing of the Post.


*P.S. If you think I'm talking about/to you, that's a sure sign that I'm not -- and you know who you are. (hee) For further clarification on the matter above, let's just say that for me to be "interested" in "pursuing" "anything" it would have to look sort of like this: the "candidate" would have to show up on my doorstep with, say, a note from God explaining things (big, small, intermediate pictures) and granting the bearer of the note His blessing, as well as the okay from my kidlets. It may well be akin to running a gauntlet and frankly, far more than I'd expect of any mortal.

Open letter

Dear Toyota (et al.),

I don't have much time so I'll just keep this brief. Why, oh why, have you not yet seen fit to sell the hybrid version of the Sienna in the U.S.? Remember, back in your business classes when they talked about how to keep customers happy? You know, just by giving us what we want? And remember how there's that generally accepted marketing maxim that the voice of one represents at least a thousand others who feel the same way but haven't made themselves known?

Here's the deal: the economy is tanking, fruits, veggies and gas prices are through the ever-loving roof, and I know personally of several families who would be thrilled to have the option of driving a mini-van that seats eight, has a fabulous arrangement for cargo space, is safe, and gets about 40 mpg. Look, by now most of us have figured out that China owns us. CEOs make headlines with "competitive" salaries whilst food banks suffer less supplies, more clients. Things are a little tense around here these days.

I'd like to suggest that you do your part and start selling the hybrid mini-van. Like yesterday would've been fine. It's either that or someone can start dumping Ativan into the water supply. I prefer your kind of van.

Thanks so much for your time and for letting me get that out -- it's been keeping me up. G'night.

me (and a few thousand of my closest friends)

Thursday, April 17, 2008


They're all tucked in, with a few tears wiped, plenty of snuggles given. Q's finally down too -- this makes two nights in a row that he's been unable to be laid down 'til sometime in the wee hours. Last night it was nearly three, so tonight was decidedly an improvement.

Daybreak sees us back in the proverbial saddle: rescheduled piano lessons (recital is coming up first week of May) -- we could only squeeze in half their regular times for tomorrow; Q's SpEd teacher will visit while the kids are starting back to their schoolwork; there's tumbling in the afternoon; and, thanks to monetary miracles both at Christmas and last month, we're going to see The Newsboys tomorrow evening. We're very excited. Actually, that's something of an understatement. We're hopping up and down with excitement. When we got out from the baggage claim to the van earlier in the evening and were piling in luggage, "Something Beautiful" was playing on the radio. It made us a little giddy.

I'm going to bed since the boy is out, for at least a little while. It's so good to have them home...

G'night all.

Wednesday, April 16, 2008

Starbucks cup quote #282

Childhood is a strange country. It's a place you come from or go to -- at least in your mind. For me it has an endless, spellbound something in it that feels remote. It's like a little sealed-vault country of cake breath and grass stains where what you do instead of work is spin until you're dizzy.

--Lyall Bush
Executive director of Richard hugo House, a center for writers and readers.

(The kids are on their plane.)

Tuesday, April 15, 2008

The Shaking

Dear Oregonians and Californians, how's your earthquake preparedness coming along?

Shudder. (Pardon the pun.)

For that matter, how's anyone's disaster preparedness coming along? Good checklists can be found at the Red Cross, with lots of good help from your local chapter.

My personal addition is this: when putting together your kit, bear in mind that many folks are likely to be fairly unprepared. If you're able to, add items with this fact in mind. Perhaps first aid materials, water purification tablets (or bottles of water), a few extra cans of food, some toilet paper. Remember to rotate your supplies so they're nice and fresh. Put something fun in there, too. Card games are good. Extra Easter candy comes to mind. Think of it -- the world's in the midst of meltdown and only you have enough chocolate to buy off the officials who control the bridge! It's the last obstacle to freedom from the ruthless guards which now control and imprison us!

Wait. That was a movie, wasn't it?

Monday, April 14, 2008

A rare and beautiful thing...

So if you haven't seen this already, you must. Right now. Get a glass of water, sit down with some Kleenex. If you're interested in other things he has to share, go here. What are you waiting for? A cosmic kick in the hiney? Trust me, you don't want to wait around for that particular piece of fun to materialize, in any of it's sundry delightful guises: consider yourself gently booted. Go.


Now what? What will you do that you might not have done today? Is there anyone who needs an apology from you? Perhaps you need to give someone a few minutes of your undivided attention? Perhaps you're needed to just be where you are.

What will you do?

Friday, April 11, 2008

Three More

One -- The oldest four of my children are having fun with their daddy.

Two -- Remember my friends who've been pulling with all their might to keep their family together? He moved home last week. Home.

Three -- Today, a new charity was born. The papers are filed and soon someone will have her not-for-profit status.