Friday, November 30, 2007

The good, the cranky, the tired.

I was eavesdropping today on a bunch of women who were listing their favorite things about their husbands. One lady was very sad, as this topic brought up painful memories for her. I have to admit it made me a little twitchy.

But (and it's a big one), I have so many very good memories. Like Halloween '96 when we had set out our three little carved pumpkins, one for mama, one for daddy, one for little G, and I said, "Wait just a second! I have just the thing to make this perfect." I popped back inside and grabbed the perfect thing. When I held out the tiny punkin to add to the tableau next to our front door, the little stem of it tied with pink and blue ribbons, and his face showed the slow, spreading realization that I was making an announcement, well, it still makes my tummy all wobbly.

Or how about the time that a guy, oh, about 60 years old, at the church potluck went all through the room asking the hospitality ladies who had made that casserole. Why? So he could track me down and tell me that it was "the worst thing I've eaten at a church potluck since I was twelve." A certain someone hied himself off to demand, albeit courteously, that the man apologize to me. Even then, I found the man's actions bizarre enough to be silly. But the fact that a certain someone would go tell him he daren't speak to a certain someone's beloved like that? Color me speechless, baby. Talk about a white knight. I felt like the adoring girl who stands on the sidelines, hands clasped beneath her chin, head cocked, batting her eyelashes, and swishing her cheerleader skirt at the star basketball player. Boy oh boy, was I doing all that and more in my head. (It's tough to actually swish your skirt at someone when you're chasing after four little children.) And you know, every single person I knew heard that story and how a certain someone stalked off after that ill-spoken man. What a guy.

(Funny thing, the man did apologize, profusely, and the three pans of the casserole completely disappeared. Folks even asked for the recipe. Ha. I credited a certain someone with all that.)

Then there were all the times we took him lunch and dinner in hospital parking lots when he was on call. Sometimes we ate together, sometimes I read bedtime stories to the already bathed and pajama-clad kids while he ate, so we could enjoy being together as a family. Having family goodnight prayers together after. Saying our "three good things" for the day. Man, that was precious stuff. And the lingering, soul-searing kisses through my open driver's side window as I was taking the littles home to bed and he was returning to his patients were, um, memorable, to say the least. We kidded about the possibility of an attending spotting him making out with his wife in the dark. With a mini-van full of kids. Heh.

(dot, dot, dot)

You bet it's equal parts sweetness and agony to recall those things. But the memories keep their strength. They make me smile. I don't know what the sad lady's history is. God forbid it is violence or abuse of any kind. Perhaps she, like many others, feels keenly the absence of what she once had. Perhaps she longs to be included in the club which cheerily lists their husband's best qualities, even if they have to think for a second as they refocus amid their daily responsibilities. Whatever it is, I wish her peace. It's never any fun standing on the outside looking in, is it?

What a day it's been.

Getting out the door to Q's neuro appointment, I was so frazzled that I left my wallet sitting here. I'd even come back into the house for it, but in the goodbyes to the kids, I left it anyway. My checkbook had no checks. I found a dollar in the diaper bag. (Why do I have a solitary dollar in the diaper bag? Maybe S put it there...) Well, no big thing. I'm just going to the neurologist, right? Okay. No need for funds here. So how does one get out of the parking garage without any money? Turns out they write down your license plate number and give you an envelope in which to mail a check. You may think I'm reaching over the top for this, but I'm telling you, it jolly well felt like a miracle.

I got home after all that, went to run some more laundry, and the washing machine was leaking. Wah. It's been one thing after the next all day long.

On the bright side, the neurologist smiled all over Q again. He talked about his tone and reflexes improving a bit. Q's neck and truncal responses are a bit steadier. He works harder to right himself when tilted. When the neurologist asked how Q was doing, I related that Q says "hi" and "go" and vocalizes appropriately--all those about a third of the time, maybe more often, when he's asked to speak as a part of his therapy or play. He often giggles madly when he does, so proud of himself for nailing it. About another third of the time, he gets the vowel sounds. And perhaps another third, maybe less, he changes his position, looks at the person asking something of him, or changes his breathing to answer what's been asked. His level of response seems tied to meds, illness, and some other mysterious piece of the equation that no one has yet revealed. The neurologist talked about augmentative communication devices, or "Aug Com" devices and therapies. He talked about switches, of which Q uses some already, and assistive technologies, such as the computer, which Q got to try out for the first time two weeks ago. He had to hit a button to make the monkeys dance on the bed and sing their song. He thought it was pretty cool.

I asked about meds adjustments. We're going to try going without the morning dose of clonazepam to see if Q would be more awake during the day and perhaps better able to moderate and make good use of his tone. It should be fairly non-eventful, since the dose is tiny and Q hasn't had such exaggerated startles when falling asleep. We'll see soon enough. As for the trileptal? If Q remains apparently seizure free for two years, then we'd do a repeat EEG and perhaps remove him from the drug on a trial basis. Two years began in February. So we're closing in on a year without anything that looks like a real seizure. Can you believe it's been that long? And yet it feels like a millenia, give or take a century.

I keep wondering if he really had seizures or if it was just some funky startle thing... Who knows. The EEG certainly supported the idea that seizures were plausible, likely even. And most kids with diffuse Polymicrogyria would definitely have seizures.

At this point, I just want him to be sitting on his own for extended periods. He's made it a whole twelve seconds so far. Happy dance! I heard somewhere that the rule of thumb is that if a child sits by the age of two, he'll likely walk on his own. If a child does not sit by the age of five, it's unlikely that he'll ever walk unaided. I've no idea as to the veracity of such statements, but there they are.

Regarding Q's motor skills, he went after a couple of pencils that were in his range today and succeeded in knocking one to the floor. He tries to roll, most of the time anyway. He played tonight with this favorite toy. It's tissue paper. It makes a nice crackly sound, it's not completely opaque, and it's lightweight enough that he can easily move it around to play peek-a-boo with himself. I'll have to write more later about Q's visit this week with the EI/SpEd vision therapy lady and the new EI/SpEd teacher.

And about meds: I'm still waiting, what, ten days now? To hear about "prior authorization" for antacid meds for Q. I talked to the pharmacy, the doc, the pharmacy, the MA, the pharmacy, the pharmacist, the various locations fax back and forth, and then I find out that we're right back where we started. I have a whole post right there.

I'm just tired. I'm tired of everything being off because someone's missing. I'm tired of having to figure everything out and execute it by myself. I'm tired of cranky people. My whole life is full of blessings, yes. They are innumerable and we are fortunate beyond comprehension to have so many wonderful, dedicated, loving people working so hard for good things to come about for Q, for G, for the girls. Truly. It's incredible. Miracles show up on a regular basis, people offer things out of the clear blue sky, we have what we need as well as a completely inexplicable extra measure.

And yet... Sometimes the enormity of it all sort of creeps up on me and bashes me over the head.

Meh. I'm just tired. I'm sure it will all be better in the morning. It always is.

Peace and rest to you. I'm off to grab the same.

Thursday, November 29, 2007

From the weekend

It was cold outside, but our hearts were warm.

Le fromage! Yes. But just because it's cheesy doesn't make it any less true. So there.

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Wednesday, November 28, 2007


Nothing to tell about court except that I hope the kids will be seeing their daddy soon.

Smiles and hugs.


Monday, November 26, 2007


Happy post-turkey-coma week! Following our feasts, some of us are now officially layered up and ready for hibernation. I wish I were kidding. Q's been sick and easily wakened so I'm making this short--I'll need to be "sleeping fast" tonight, as S says. Just wanted to say that we're back in one piece, everyone had a blast (even snuffly Q), and to ask for prayers for Tuesday, 11/27. Yup, it's another court date. I don't even know what to say, really. I'm just hoping and literally praying that things go as well as they possibly can for the kids, and that there are clear, cool heads all around.

Hope your Monday is lovely--and perhaps somewhat calorie reduced in honor of the late festivities? (snort) Thanks for thinking of me and my brood. Now, go get some lovin' from those precious ones. 'night.

Thursday, November 22, 2007

For every day of living

Dear Mommy,
I won't be wanting purees anymore, thank you. They've been neat, but they're for babies. And Mom, I'm a toddler now. I'd like more of those little fruit bits, some mashed rice, oatmeal with my fruit and yogurt. I know it's hard for you to hear, but I'm growing up and it's all about the texture now. Thanks, dear. And you could sit and entertain me all day, too, that would be lovely. Because you know, my brain is growing and I'd like to be getting into stuff, but I need someone to help me so I can join the rest of the entropy team. Yes, I know what that means. Sheesh. Even if my very best verbal skill is vowel sounds, ya shouldn't think I'm not listening in and collecting all your secrets to share just as soon as I can.

Slobber slobber, kiss kiss. Love you!!

Ruh-roh. (big grins)

We're outta here. Besides Thanksgiving, this weekend we're celebrating my parent's 40th anniversary with a nice dinner, over a pebbly beach, and there's chilly, crispy, brilliant sunshine awaiting the lot of us. Blessings, people. May your hearts be more full than your tummies.

...For every breath, for every day of living
This is my Thanksgiving
Now the trouble with you and me, my friend
Is the trouble with this nation
Too many blessings, too little appreciation
And I know that kind of notion—well, it just ain't cool
So send me back to Sunday school
Because I'm tired of waiting for reason to arrive
It's too long we've been living
These unexamined lives
I've got great expectations
I've got family and friends
I've got satisfying work
I've got a back that bends
For every breath, for every day of living
This is my Thanksgiving...

Don Henley, Stan Lynch, Jai Winding
from Inside Job

Wednesday, November 21, 2007

Funny, inspiring, silly, tra la

HA! It's nice to know that children are so, um, what? Predictable in their roles as darling little entropy machines? Or just that they're much the same wherever they may be, whatever they're doing, and that when I find things just like this, I'm not crazy.

More with M-Mv. I really like hearing others' opinions on these things. "Eavesdropping" on discussions which provide me with material for further mental mastication plain ol' rocks. But it's her last lines in this post which, for reasons better left unsaid, made me truly laugh out loud.

This one makes my heart sing. I'm posting this in case you don't read the above and then go on to follow her last link. I see a bit of her descriptions in my own offspring: parts of their darling daddy, parts of me, that meld so satisfyingly. It makes me proud. I am privileged indeed to be here, mothering them.

Sometimes, lost in the volume of paperwork, meds, therapies, and sheer busy-ness of life, I slip in my focus. Tonight, while doing dishes and fixing dinner, I spent time on the phone with a pharmacy, then doctor's office, then pharmacy again. When I got off the line, I heaved a sigh. Once in awhile, little blips in the rhythm of things around here remind me that not much about our configuration is what one could call "usual."

And yet. I have those children who will notice things. The ones who will of their own accord spend long periods of time watching people making bobbin lace, spinning wool, throwing pots. Who will spend all afternoon with their hands in the "petting aquarium"--their favorite place at the zoo. Who will ask intelligent questions and wait politely for the answers--which often bring more, equally relevant questions. I have children who pounce gleefully on science books, indeed upon the whole science section of the library, and who are sad when we must leave books on the shelf for others (some of them are little yet, still learning about this). This delights me no end.

Sometimes, when I get just under eight hours of sleep in two days, it's a little tougher. It doesn't matter how tired, or sick (I'm not sick, just sinusy and sneezing and feverish and not sick, thank you), or mystified one might become. There is always a call to dig deeper into the material and myself, to want more, be more, to understand and inspire the punkinheads and love the place where I am.

And then, see: I have these children who notice things.


...I'd written all of the above last night and when I went to post it, the internet connection was gone. I took is as a sign from God and went to bed. Q went down after midnight and I followed as quickly as I could. A very good thing too, because of course he started waking up every 20-30 minutes at four. Did I mention how I'm not sick? Because I'm not, you know. Never mind that my favorite part of the week was when I was waiting for the basket to be installed on Q's chair at the big supplier/pharmacy place. I went to grab some more Thick-It and ran across mentholated Kleenex. Oh. my. heavens. This is one of those times I'd like to swoon in appreciation, but sadly, it seems I'm just not that kind of girl. Sigh.

Anyhoo, the boy is down so I'm going to bed right now and I'll finish packing in the morning. Wheee. Pray that he stays down, please? I neeeeed to sleeeeeep. Wah.

Sweet dreams.

Monday, November 19, 2007

Tra la la

S sits up in bed after being tucked thoroughly in for the night and shouts in a stage whisper, "Mom."


Pause. Hoarsely, "I'm a tattle-tale."

"Okay." I sit still, on the edge of K's bed, waiting for the confession.

She thuds back on to her pillow, yanks up the covers, rolls toward the wall, done for the night. Alrighty then.

I've been moving furniture, striving for a configuration that will allow a better use of space in various rooms. This process always involves a welcome de-junking that somehow didn't seem like it needed to be done until the bazillion single socks that hid so deviously under the couches are again in the light of day. Or rather, in the light of incandescent bulbs.

I can't do anymore now because I should already be asleep, but mostly because the rest of the stuff to move has attachments. That are noisy. Like bells and wind chimes and crackly paper and stuff. Q's toys and therapy things now take up about twenty square feet in the living room. That's probably a conservative estimate, actually. He has 1 1/4 bookcases plus space in front of the windows. That space is taken up by his old Tiger 2000 height adjustable chair (one parking space) and (second parking space) a sort of nesting stack of, from the ground up: his monkey stander, his "little room" which just fits over the top of the stander like a shelter of some sort, and perched on top like whipped cream on a sundae, the Baby Einstein caterpillar toy. Note that the "sundae" lacks a cherry for it's whipped cream. Not to worry. I'm sure by the end of the day tomorrow the same girls that tried to cover every shelf in the then empty bookcases with the single socks (regurgitated couch rejects plus the laundry--clean, thank you very much) will gladly take on the task of topping off the tower. Can't wait to see what item(s) they'll pick.

I've moved the dining room around a little too. Tuesday, Q's will-by-then-be-modified, very gently used (in astonishing shape for being ten whole years old), free (thank you so much--you know who you are) Prima Pappa highchair will roll into it's place of honor. I've had him in it already and he likes it very much. The modifications are necessary to keep him from curling up into crunches and then tipping over sideways. He's silly like that. He likes to be active, busy, but has a hard time with head control, keeping himself at the midline/midpoint when sitting, so he'll get a little help with velcro and straps threaded through crotch buckle and up over his shoulders.

So things are shifting a bit here. It feels a little more roomy in the living room now. More exposure to the gas fireplace, more room on the pretty red rug, larger spaces in which to walk. The goal here is to make all pathways easily wheelchair accessible while still allowing the rest of us to enjoy being here. As one might assume, this takes a little effort. Redoing one's mindset about ambulation is no small thing. Ah, well. Q will very likely do some type of walking at some point, or at least that's what I'm telling myself. But in the meantime, he's getting bigger and I can't carry him everywhere, so he needs wheels. The boy has gotten so long that in PT Friday we raised his stander five inches. His little boot orthotics have been modified four times since he got them in September (same time as the stander), and where he once had over an inch of space to stretch out those toes, it's now down to about 1/4". I snuck the PT's tape measure and checked the punkinhead out, lengthwise.

I just went and looked that number up. I'll have to check again, because if my measurement is right, it places him at about the 95th percentile for length. Holy cow! No wonder he's looked so skinny all of a sudden! If this is right maybe it explains his sleep patterns (or lack thereof) and eating habits. About three, maybe four weeks ago, he doubled his food intake. Just like that. So who knows? Maybe we're busting out of the 25th-50th section once and for all. Not so great for my back, mind you, but if he's exhibiting what one would consider to be basically normal growth patterns compared to his siblings', this means he's pushing the limits of his raw material--really burning new pathways in order to get accomplished what he needs to.

This is just awesome, isn't it? I mean it's not just me, right? His OT wondered last week if maybe his brain is growing. Some things just seem very different with him again--like an intellectual growth spurt is happening, only he doesn't exhibit it the same as one might expect in a kid this age so it's hard to tell.

Wow. Well, I'm just going to wander off to bed now, happy as can be that we're making progress. Let's focus intently on that. I love progress.

'night. Sleep tight.

Friday, November 16, 2007

Notes to self:

Be where you are.

Do what you can. The rest is simply fodder for torture.

Be kind to self and others.

Wear shoes when kicking things.

Read. Think. Learn. (and buy her awesome stuff)

Know whereof you pontificate. And pray, staple your lips shut if you do not. (I know I'll be packing a pocket stapler for just this purpose.)

Say yes. Say yes. Say yes. As often as humanly possible.

Work hard, play harder.

Love like you'll never have another chance. You very well may not.

Take notes for later. When thinking will really happen.

Set your sights a little higher, your aspirations a little grander. Better to risk failing big than to be sure in succeeding small.

Be careful when playing soccer with big mean boys.

Tell the truth. Bear in mind that it may not be well received. Tell it anyway, but be as kind as you can without selling your soul.

Avoid battles of wits with wounded people. It can only engender further agony.
At your earliest convenience, get a mind-wipe.

Go skipping with the children. It helps burn cortisol and adrenaline and always ends in gales of giggles.

Say thank you. Thank you. And thank you.

Thursday, November 15, 2007


Heh, heh, heh. Funny even if one isn't remotely bitter. Or brittle. Or sarcastic. Well, maybe it helps if you at least get sarcasm.

What a fascinating series of interactions I've had today. While the older three were finishing up their group practice for the piano recital, S and I were in the van. I was helping Q "drive"--he loves to sit sort of on my lap, sort of between my knees, to grab the steering wheel and vocalize at it. S was pulling her school books out of the book basket. We were listening to some familiar song on the radio and I was singing harmony with the back-up choir as it ended. S looks intently at me, cocks her head and says, smiling, "Mommy, did you used to be a good singer?"

On our way following lessons, we crossed over a low spot in the topography. There's a sizeable pond plus waterfowl off to one side. Both sides of the road are replete with rushes and miscellaneous wetland foliage. S, in the very back, sits bolt upright in her seat as we pass the pond and gasping, says, "Did we just cross the Nile?" G explained patiently that the Nile is in Egypt, we are not in Egypt, that Egypt is in fact on another continent (what's a continent?), and that was just a pond. But perhaps one day, if we're very lucky, we'll get to see the Nile delta in flood (what's a delta?).

We were subsequently stuck behind a slow, slow, agonizingly slow truck, were pulled over for speeding, and then stuck driving ten or more miles below the speed limit in order to stay on the road through wind gusts. All in under 45 minutes. (You think I'm kidding? I am never, never bored.) The nice State Patrol lady has the same birthday as me--funny, no? I've no idea why she let me off with a warning when she said she clocked me at 16 miles over the speed limit (what?), but I wished her a happy birthday in advance. I think she may have confused us with the zippy little black SUV that crested the hill at the same time. Or perhaps there was a mighty gust and it gave us a push as I let up on the gas, coming up over that hill and all. I'm driving a minivan that's nearly ten years old, full of children and their stuff, for goodness sakes. The poor thing isn't really capable of behaving like a little race car. I've no idea what happened there. All in all, perhaps it's best not to question things too terribly closely. All's well that ends well?

I got to slap the living daylights out of a batch of bread dough today. I haven't done anything with dough since I baked, frequently, for a certain someone. As a matter of fact, I don't do nearly as much cooking as I used to, for mostly the same reasons. Huh. Well, perhaps I'll have a chance to resurrect my Kitchen-Aid one day. There are lots and lots of fond memories there, even though the mere sight of the flour, yeasty sponge, oil, etc. combining in the bowl when I was first pregnant with Q was enough to pitch me over the edge. Funny, the way trains of thought go: now I'm thinking about how very sick I was with him, so much more than with the other kids. Huh. Again. (shaking head)

Thanks for your prayers for all of us here and for the various friends I've mentioned repeatedly.

Wishing you a big old warm bed filled with a lifetime of snuggles and giggles and (ahem) all the rest. Including kiddoes bouncing you awake in the light of dawn, happy to be where they are.


Tuesday, November 13, 2007

...Amamus, Amatis, Amant

If you have some time to spare, please pray. Dear friends of mine are flailing. There are health issues, infidelity, general unhappiness, big time loss and altogether more pain than people can walk around under. At risk are people's lives, the whole future and functionality of the next generation, sweet people who just need things to be less awful for a little while so they can recover, recognize their souls as their own, dance again in the light of grace, thankful for what is.

To Whom it May Concern: This business of being crushed by the weight of one's own psyche is wearing the planet out, people. Let me say it again: If you need meds, get them. If you need an ear, tell someone so. We, your families, are not mind readers. We cannot know the depths of your despair unless you say something. There is help. Lots of it. You survived adolescence, therefore you are pointedly aware that life changes. The worst of it changes. The best of it changes. The misery you feel right now should not own the outcome of your family. Be the adult in charge. Take a deep breath. Pour out your heart and soul, tell the truth, pray, be real with the people who love you more than you can begin to wrap your agonized brain around.

Yesterday is a wrinkle on your forehead
Yesterday is a promise that you’ve broken

This place you are, dear ones, is not so good. There's no arguing that. But grace, redemption, renewal, are not reserved for the divine to offer his creation. They are human concepts as well, ones we live daily on varying scales. I can tell you with absolute certainty that the most severe condemnation you face is going on right now inside your own head--your fear is successfully overwhelming your good sense. Your family, your whole family, every last one of them, want nothing more than for you to be okay. There is nothing they won't forgive. You've just gotta speak to it. If all you can do is whisper, "Help" do it. They'll respond. They just need to know that you're there for the duration. That you won't bail at your earliest convenience.

Don’t close your eyes, don’t close your eyes
This is your life and today is all you’ve got now

Sir, madam, friends: Don't become another statistic. Do not cede your children a legacy of brokenness and disaster. Nothing you do after this will have this level of importance. God entrusted you with those babies and you will answer to Him for what you've done to, for and with them. Take a deep breath and look into their eyes and acknowledge that you want better for your punkins than what you're thinking of doing to their family.

Yeah, and today is all you’ll ever have
Don’t close your eyes

Do you know, really, really know that you, their parents, are your offsprings' first picture of God? Think back to watching that first little one sleep, watching her breathe while you dreamed big for her future, or smoothing his little peach fuzz hair down, wondered what he'd be when he grew up. Remember how you knew that your family would be okay, even though so many others might not be, you would be great? Remember how you knew that there was nothing in the world you wouldn't do for that tiny little bundle with impossibly fat cheeks?

Don’t close your eyes
This is your life, are you who you want to be

Do not for one second think that your pain and confusion are unique. This place you've found is not new. It is not special. It is one you will likely visit many times over the course of your life--may it be long enough for you to survive much and may you only visit this place rather than erect a permanent dwelling place. Look. The truth is surviving often sucks. I mean it. It sucks. A lifetime delivers more pain, ecstasy, complexity and boredom than we'd be able to live through if we knew what was coming. I know people who are this week burying their brother, nephew, husband, dear friend, uncle, their son--each of these different people, different families. I know people putting back together their marriages under the most complex, painful, impossible circumstances. Do not say, "But..." There is no but. Not one. Your pain is not a new discovery or a new variety on this planet. You cannot offer up that no one can know the inside of your marriage, how bad it is to live with him/her. Unless you're being beaten or your spouse is refusing treatment or you're twelve, you have no excuse. And if your spouse has asked you to get help, to go for couples counseling and you won't? Woe be unto you, friend. It takes more than whining, more than posturing, more than a couple of perfunctory "attempts" at therapy to let you off the hook. You have to earn your way out and it takes years of active participation in the process in order to do so. Making a bunch of kids and then complaining about insufficiency of anything, anything at all, does not qualify as you having earned your way into or out of a matchbox, much less out of a marriage. A family.

This is your life, is it everything you dreamed that it would be
When the world was younger and you had everything to lose

Step outside of your pain and confusion. Step outside of yourself. Remember who you are. The person who made those vows, and the one to whom you made them. You weren't drunk. You didn't have a gun to your head. You were full of hope and lust, longing and dreams you just knew would be fulfilled. Your youthful optimism is paying off. Those dreams are coming true. Some of them are complete, others just getting started. The problem is, no one told you about the foot notes and addendums. No one told you that your dreams would come true as you were annoyed to death about the state of the toothpaste, for crying out loud, would you learn to squeeze it right? No one told you that loving another human being would be equal parts joy and puzzlement. Or that in order for those dreams to come true, you might have to spend some time in the wasteland that occasionally represents reality.

Yesterday is a kid in the corner
Yesterday is dead and over

If you ate candy all day long, you'd become corpulent, lazy and no fun to be with. Go examine your behaviors over the last few years and see what you've done to make yourself into someone who wanted only to be soothed with a variety of lollipops. Someone who could no longer see the beauty dancing right in front of you, giggling, flirting, sashaying for your pleasure and attention. Your honey, your babies, they're all right there. They want you and need you like no one else in the past, present, or future of civilization will ever need you. No great act, no heroic deed, nothing you could ever do will compare to the person you are to them.

This is your life, are you who you want to be

Humble yourself in the sight of the Lord. Suck up your ego. Don't go crawling back. Walk in quietly, with confidence, with your head high, as the person--fallible and fabulous--God means you to be: a real one. Then quietly, with sacrifice, set about deserving their adoration. Not as a prostrate penitent, but as a human being. Earn that title. We are made in the image of God. Ergo: you are magnificent. Own it.

Don’t close your eyes

As a citizen of Earth, you will inevitably experience a variety of life circumstances. Some you will have some say in, some you will fully control, most you will have to hang on and ride through as they kick you nearly to death or deliver nifty details beyond the scope of your imagination. Most of life you get very little say over. Death of a child? Loss of a lover? Pain your children must walk through? Handicaps? Chronic pain? Fatal diagnosis? All those people I spoke of in the very first paragraph would give anything to have in their circumstances the kind of choice you have in yours. You will, with certainty, find yourself in situations, perhaps many, which are beyond you. The people suffering around you, indeed your future self, charge you to do the best you can, with what you have, right now, where you are. Someday you will long for a situation as "clear cut" as this one is right now. It doesn't feel like it at this moment, but you will.

This is your life, is it everything you dreamed that it would be
When the world was younger and you had everything to lose

I ache for your spouse, your babies, and you. This is something they struggle actively against. They know some of how awful it will be without you, but they don't know that it will get worse. They miss you so badly already and you're not even gone. You are half those children's very identity. And as you plan to walk out, half their identity is skewering the other half--how will they ever rebound from that? How will you overcome that cognitive dissonance ringing so loudly and persistently in your own head? You know better than to say with a straight face that they'll be fine, that it's "better" this way. You know this all the way down to your toes.

I've got a big day tomorrow and I need to sleep so I can take it on and do it well, so I have to wrap this up. I could throttle you, but I'm running out of time. (Laugh. It's funny. Is too.) Please know that I'm praying for you all. That the rest of the planet is too. That everything I said above is true and it goes double if you know my real name. You have a chance to change history for hundreds of people with the ripples of the choice you're lingering over, but most of all for those little ones you've been watching since they looked like fuzzy kidney beans, since you were smiling into your beloved's eyes at their crazy antics, even in utero.

This is your life. Pick up your free will and make it what it's meant to be.

To the rest of you: I pray peace for you and yours, a lightening of your sorrow, a restful night. May God be with you as you endure and learn the ropes of the new normal.

With much love,

lyrics copyright Switchfoot

Saturday, November 10, 2007


I like to collect and post quotes, as you may have noticed. I found one today that I'd like to share. It resonates well. But I'm directing you to it instead, so you can read the whole story, and offer some prayers for the family of the guy who said it so well.


Friday, November 09, 2007


Did you know that Marie Callendar's sweet little frozen berry cobbler (pie?) has 1200 calories each? Even if you go with the suggested serving size of four per little pie, it's still 300! Why bother? Just go get a spoon, a half gallon of vanilla ice cream and crawl into your cave to hibernate for the foreseeable future. I hear some bears are starving, not yet settling down for their long sleep. Maybe we could drop cases of Marie Callendar's delicious pie type food products in the hinterlands. We could save all the poor bears.

Earlier today we were on a nice little two lane divided highway, barreling along, happily listening to Jim Weiss read and tell 20,000 Leagues Under the Sea. You know how, when pulling past a semi, a peripheral glance can make it seem like the truck is drifting into your lane? I glanced right as we came up even with a hulking, sleek black wheel well. Sure enough, it looked a little bigger. Then a little bigger. A little bigger... A split-second prayer: Oh, dear Lord. Only about a third of the van had passed the truck. I stood on the accelerator, pulling ahead and steering left, out of the left lane, more onto a perfectly tidy, paved shoulder. I looked in the rear view mirror, expecting to be rewarded with a sight mocking my paranoia. Instead, the truck was more than halfway into our lane, his front grill and headlights bigger than they should have been in the mirror. My heart nearly stopped, but I kept my foot down, by then safely back on the blacktop proper, quite easily missing the guardrail at the looming bridge. He righted himself without incident. Oh my, how close it was. How bad it could have been. My precious little people, who didn't hear me gasp, didn't react to the sudden change in direction or change in speed because they were engrossed in the story, seem all that much more dear tonight. Sometimes I think there are literally battalions of angels flying fast to keep up with my brood.

Deep breath.

The other events of the day are done, thank God. There's not much to say, really--someone was given clear instruction as to what needs to happen next. I cannot tell you how fervently I hope he follows through. The proposed consequences elicit a lurching, visceral response from me. I'd venture that my horror amounts to zippo when compared to his. Which only compounds mine.

As someone once said, "Well, it sucks. But if it has to suck, at least it can suck in your favor." True. And yet thoroughly hollow. I do so wish that I'd wake up from this nightmare.

(Swerving...) Three Good Things, with an assist from The Desiderata, by Max Ehrmann:
Immediate picture: Everyone's sleeping hard but me, and I'm next. Yippee! Beyond a wholesome discipline, be gentle with yourself.
Small picture: We're home safe, hallelujah and amen. Go placidly amid the noise and haste, and remember what peace there may be in silence.
Big picture: Evil cannot win. With all the sham, drudgery and broken dreams, it is still a beautiful world.

One last thing as I sit here with my head (figuratively) in my hands. Please do hug your babies an extra time or two and hold your beloved super tight. (More Sting running through my head: How fragile we are...) Here's hoping your travels do not at any time include a big black truck with someone sleepy behind the wheel.

Thursday, November 08, 2007

Stream of consciousness

I am glad that everyone is in bed. Not that they've been such a chore today, just that it's nice to have the day over. The dishwasher is quiet, the dryer will soon be done, and off I'll toddle to sleep.

We began the day with piano lessons. The three eldest will be performing a trio for their recital, their first ever attempt at something like this, in addition to their solo pieces. As usual, G and E and I did math and spelling while I fed Q and the little girls had lessons, then we all switched out and K and S and I did reading and grammar. Off then to lunch with friends--the sandwiches were super, the cook especially talented. Then we were tearing off to home to snatch up Q's stroller/chair which had lost a washer and nut (bolt?) last week. In order to keep the warranty intact, the pharmacy which supplied the chair must do all repair, so it was another 40 minutes of driving to get there. In the meantime, we had more phonics taking place in the backseat, several moments of deep engagement when the kids were calling out words and phrases they'd seen on signs, challenging each other to spell the same as we left the visual prompts behind, rolling down the road. (A great activity they initiated for themselves--good for recall, among other more obvious skills.) We also enjoyed some pure entertainment, and Q had a nice nap in his seat. On our way back, I stopped by a paper store to make the annual selections for the cards that my dad will include in the yearly paperwork mailing for his client list. And we headed home to update the calendar, make dinner, tidy up, adjust K's expander, have stories and collapse in our respective heaps.

And we do it all again tomorrow: the girls have eye appointments and we're taking lunch to enjoy with friends who are somewhat indisposed. More school (logic, math, history, Latin) en route to all, then tumbling in the afternoon, more reading after dinner, perhaps another layout for Biology for the girls, another element page for G, time in the stander for Q, then baths and bed.

The problem with Q's chair was a bit worrisome. I mean, we'd had it what, a whole two weeks? And it's coming apart? So much for German engineering, eh? Well, according to the nice repair guys at the pharmacy, this is the first time either of them can recall ever having had this particular chair back in for an issue of any kind. The problem occurred at the site of the tie-down loop which was added locally, though not in their shop. A tie-down loop provides the mechanism for the chair to be used as a car seat, more or less, either in our own customized vehicle or in a special school bus configuration. Both repair guys had just glowing things to say about the Bingo which was very reassuring indeed. So far, we like it very much. Especially Q, who is really the one whose opinion matters anyway.

On the return trip from the pharmacy, we had to cross a bridge. The water was reflective, as though it had been polished up just to show off the sky above. The striations in the clouds were amazing: at one elevation they all ran away from us, toward some exaggerated vanishing point. At another, they loped directly across the horizon, a mass of pulled cotton cushioning the break between earth and heaven. The colors were thin, watery, pale. Then deeper, strengthening. Everything from a glossy pale yellow to rosy pink, then fading from shell shades into mother of pearl grays and shiny blues. The tree lines rose dark and peaked, rolling along like a continuous monitor of the planet's heartbeat. Rising and falling, sometimes showing a resting rhythm, sometimes one of great passion or aerobic activity. Sting's The Living Sea played in my head as a soundtrack. Just as it does every time there's water, great beauty, good memories.

Whisper a prayer in the morning,
Whisper a prayer at noon,
Whisper a prayer in the evening,
To keep your heart in tune.

Just now I would happily volunteer for evisceration as a delightful alternative to the prospective events of the morning. Yech. Here's hoping your day will look more promising.

In the meantime, rest well.

Tuesday, November 06, 2007

Amo, Amas, Amat.....

There are certain words and phrases that plant themselves in one's consciousness and just won't leave. Lately, Quahog has been amongst them. (Nice, eh? I've no idea where it came from or what it means. Maybe if I looked it up it would leave me alone.) At some point in the last couple of years I thought I might have to write a musical just to make good use of all the particular words that popped constantly into my head like so much angry syntax seeking to either distract or destroy. And then lately, there's Plausible Deniability. It's like that blasted golden snitch, hovering, flitting, nigh to impossible to nail down.

What does it mean? Well, this is enlightening. I suppose that's part of my recoil at the term. Yes, definitely. Comparing an individual to such colossal abuse of power would be silly, really. The scale is all wrong.

But still, the term hangs out in my head, poking me. Why?

Well, I'd like to think of myself as a good person. Wouldn't we all? Still, I don't think I do nearly enough, think nearly enough on worthy things, I don't have a handle on this business of life at. all. This is not to say that I'm some sort of axe murderer or something. Heavens, no. I'm just... I'm just...

A person. A predictably fallible human. A regular mess.

Perhaps this is why I so very dearly love the concepts of grace, restoration, redemption. I'll probably be able to form a coherent thesis on these topics sometime in the next couple of decades or so (snort). For now, I only have this: I think being human is a marvelous gift, a worthy and soaring adventure, and a small glimpse of both heaven and hell. On alternating days. It's a right and responsibility to live this time here with joy, with abandon, with respect and tender care for those entrusted to us. There's so much to do here, so much love to revel wildly in, so many hugs of understanding, so many positively blinding moments of intimacy to share.

So (swerving wildly--come along, I'm distracting you). Let's have a gratitude list. It's been far too long and it is that month again. Without further ado, I'm thankful for:

~My children, who make my heart swell. I'm lucky, no, blessed to be their mama.
~Some of the very most special people ever--fantastic talents, empathetic, smart as can be. I am glad to have time in their presence, happy indeed that they'll hang out with me.
~Church. Worship, reflection, a space in which to just sit still and be quiet (even Q cooperates most of the time)--these things don't just show up every day. Unless one runs out of gas whilst the kids are elsewhere.
~Q loves life. This in itself nearly knocks me over. Every time he laughs, every time I think about it, I'm just about on the floor. No kidding.
~My punkins and I have a warm place to be, with people who love us very much indeed.
~As crazy as my neuro processes sometimes make me (and many of those unfortunate enough to be caught up in my quest to understand), I really like my brain. Sometimes it scares me, but more often I find I'm having fun learning more about it's variables and constants. What a ride.
~That pain does not take the day. That sorrow doesn't have the last word, that the seemingly inescapable, truly horrid stuff, even as it reduces things to ashes, doesn't drive life.
~That I'm not in my twenties anymore. (If you are, I hope you're sucking the marrow from the bones of it and all, but you will love getting older. Trust me. So much less kerfuffle. Or maybe not. Anyway...)
~Good muscles. Opportunities to use them, make them stronger, stretch them out and feeeel that flexibility. A strong back. A healthy self.
~*Meds that work. We may be on the verge of another adjustment (I keep saying that, don't I?), but so far, we've been really blessed to have the first medicine attempted actually work.
~Trader Joe's. What do I not love there? Well, I'm not so much into the meat section. (The paper that a certain person wrote in med school on Creutzfeldt-Jakob fixed that once and for all.) The wine isn't my thing (though there've been days...). But have you had their Chard of Many Colors? Their Ginger Granola? Their Italian yogurt? Their cookies? And, oh, the prices. Very nice. A Useful Thing, that store. I adore Useful Things.
~More about Useful Things. Baskets. Shelving. Bookcases. Containers. I do not exaggerate when I say that I have feelings of great fondness for them. I spent (the grad school) years waiting to afford such decadent things as containers. Shoe boxes and such worked for awhile, but the kids are bigger now. There have been some recent donations, hand me downs of such delightful items. Scuffed? Who cares? It works, it's organized, and life is movin' on.
~The van keeps on going.
~The computer keeps on going.
~I keep on going. With a veritable gallery of (mostly invisible) cheerleaders, one foot in front of the other, we're making it. The kids are mostly happy, growing, and learning the coolest stuff.
~Cute things that pop out of the little mouths. S, following a discussion on Starbucks, came flying back into the kitchen to say, all bright and happy, "I know why it's called Starbucks!" Me, anxious to hear the mystery solved: "You do? Why?" S, hopping like a sprite: "Because it has a star on it and it costs bucks!" Out she flits.
~Gratitude lists. The time to reflect upon good things and the people with whom I share them. Mwaaa.

In other news:

*(A small whine here: I've thought about this and it is not remotely an exaggeration for me to say that I hate those stupid medicine droppers. Hate them. Can anyone seriously believe that they're accurate? When dosing a med that requires one to scrape up stray droplets in order to ensure the child receives as much of the intended dose as possible, this nasty little piece of plastic is what I'm supposed to do it with? Surely I'm not the only person in the world who actually wears out dosing syringes. There must be others who have to use the syringe friendly bottle adaptor because the syringe won't fit into the bottle--said adaptors seem to be growing scarce. But this ridiculous thing as an alternative? Really? Because someone can do better than this. C'mon--do it in the name of Useful Things everywhere.)

K got her spacer/expander in today. She's a little sore, but being so brave and cute. We adjust it the first time tomorrow. I so hope this goes well. Still cringing about the money there, but it's considerably less with the dentist than it would be with an orthodontist. My "spacer" done in the same manner at about the same age, worked wonderfully well for me. So we're crossing our fingers and praying about several aspects of that situation.

Last week I had G and E both taking math tests. G flew through his, E was taking forever. I did my standard spiel when they struggle: "You can do it. You know this. If you need to go on to the next problem and come back that's fine." Soothe, soothe, pat, pat. G finished up and brought me his test to correct. Pull out the key and... Wait a second. Why don't any of the answers match up? Ummm. Silly mommy switched the tests. G got 100% (as well he should have), E got 70%. Not too shabby for the girl, huh? I was pretty proud. When I discovered my mistake, I told her if she finished the test and passed it, I'd consider letting her test out of some upcoming sections of the book. She'll take a test tomorrow and we'll see how it goes.

Lastly, a prayer request.

I don't even know how to say any of the things one might say under the circumstances. We have a court date on Thursday (11/8). I feel sick. Really. Physically ill. I don't know what to pray for here. I don't know what to hope for. I don't know if anything good can come of any part of this mess--past, present or future. Perhaps I'm now just focusing on Someone being so thoroughly in control that we all get precisely what we need, with the grown-ups' wants falling way to the bottom of the priorities. Of course, different people would have different definitions there.

Also, the families that I've mentioned previously? They're struggling valiantly, taking on those Herculean tasks every day and could use any bolstering you might spare. There's also a friend of a friend (from college), someone whose birthday is eerily close to mine. This week he and his family learned that he likely has less than a year to live. Horrible, horrible, horrible. His family has survived much, but this is too much to ask anyone to survive. No one should bury their babies, no matter their age. If you think of it, he, his mom and extended family could also use your virtual hugs and fervent prayers.

I'm going to have to go lie down. Fighting the nausea is becoming an overwhelming task.

Thank you for thinking of us, praying for us, being in this with us all.

Saturday, November 03, 2007

Ah, sweet boy...

Look up a certain Irish name and listen to it here. Lovely, isn't it?

His daddy has that coloring--dark hair (curls) and eyes, light skin with sometimes rosy cheeks. Before the boy was born, I knew that he would truly need all the help he could get, so when I spotted "bright, fit physique, fifth born" in the baby book and saw that it had an Irish origin, I couldn't very well leave it there, could I? For good measure, his middle name means "friend of God." It was one of a gazillion baptized names of a certain long-ago composer and is currently being shortened as a first name by some very lovely people--a good pedigree, in other words. (smiles)

Anyway, better go get him down. For the night, not off the ceiling or anything. He wishes. He's been chortling wildly and protractedly with G, but seems to be running out of steam.

Remember to "fall back" tonight. And snuggle down tight with your honey--winter seems to be looming, doesn't it? Brrrrr...


Art or Design or What is Going On Here?

This is worth the time you'll spend reading. Upon whatever you may base your opinions on these matters, just make sure you have at least one. A basis, that is. It's kind of like this: I enjoy bumperstickers. Would I have one? Well, I currently boast zoo and AAA clings in my rear window, but that's it. I can tell you that I'd consider only these two, were they out there somewhere: VOTE and Expect Miracles. I don't much care what your precise opinion is on the whole "prosti-tot" issue, so long as you have one and it's actually defensible. To sane and sober people, not to the proprietor of the local domin*trix shop, thank you very much.

My brain has been whirling lately with Things of Possibility. One of those things is the art I always thought I'd be ardently pursuing. While my head is thoroughly occupied with that train of thought, I'm also sharing this: I've been carrying Randy Dana's card in my wallet for about eight years, a talisman affirming that I have stuff I like too, planning to one day own something of his larger than a greeting card, as wonderful as those are unto themselves. I have a special fondness for the pears, but oh, the colors in all his work. We saw him (in person) a while back--he told me I was doing a beautiful job with my (observant and interested) kids and to keep up the good work. Talent and discernment! (blushing grins) Enjoy his site--it's a gallery, a foray into art escape.

This goes with my recent train of thought.

Boy. I'm noticing a trend here. What to do, what to do. (Hours later) Well, funny thing--a friend just asked if I'd like to do the illustrations for her children's story. Panic! Perhaps the universe is trying to tell me something?

The froth in my brain has lately included designs for "shirt protectors"--bibs are for babies, and therefore passe. Yet the boy needs something to keep him dry. I have a sketch in red pen on a Post-it pad sitting next to me. Also, I've been fiddling with a plan for a good enclosure type blankie to go around a child and his chair. Q's OT has spoken about how the dilemma is always keeping both warm and dry in wheelchairs--often even parkas will allow rain to seep in and leave a kiddo with a cold, wet bum--predisposing an already barely mobile person to bedsores, among other things. My mom has a layered blanket--fleece, waterproofing, nylon layers, all bound together. I keep thinking that it could be modified to be somehow fitted around the chair and child for warmth and weatherproofing. Hmmm, again.

Perhaps I'm supposed to get cracking? I'm tired, I want to go to bed, not go get creative. I mean, I'm pretty busy keeping things level and happy here. I get all giddy about my lists and charts and schedules, not because I'm so enthralled with my genius (though hey, why not? snort), but because I have to be able to track stuff. I used to tell people that I need a plan from which to deviate. They would laugh and on we'd go. But I'm not kidding! It doesn't have to go as planned (Really. Spontaneity is good. Not easy, but worth it.), but without something set out to begin with, life gets messy fast. All the spreadsheets and color-coding stuff that I've been doing in one form or another since G was born are ways for me to make sure that I don't forget something. Without this stuff I feel like I am a mess. Of course, you'd probably look at it and shrug, thinking, "Huh? So you have a touch of OCD. Big deal." Welcome to my lovely brain. Is this TMI? How would I know, really? I don't have a spot for this fascinating discussion on my planner. (kidding)

Have a good sleep.


Thursday, November 01, 2007


I managed to hold it together. Through getting people where they needed to go, doing all the usual daily stuff. While mine were busy with tumbling, I went off to tag team for another mama's kids. I didn't holler or anything as I coasted to the side of the road because I was running out of gas. Nope. I sort of laughed, actually. I cleaned out the vehicle (had some empty trash bags along), did a little organizing via cell phone, a little organizing of some paperwork I had along, and (gasp) read for a few minutes because I was alone. When the tow guy showed up with two gallons of gas (which he gave me at considerable discount, bless him) and then the engine wouldn't even turn over, I didn't make disgruntled noises. I'm pretty sure I blushed like mad while he was hooking up the jumper cables. (Nothing like a helpless moment to make a person feel completely incompetent.) Evidently, 45 minutes of emergency blinkers had done in the poor battery. Throughout, I had a shining sense of humor, really.

Until I got home, got Q's food all mixed up (a bit of a process these days, expensive to boot when one's putting groceries on a credit card), and then the can of Thick-It jumped out of the cupboard, into the bowl and flipped it onto me and the floor. When did you last scrape squishy pasta, peas, and something called yogurt cheese off all available surfaces? Pardon me for wanting all noise to simply cease for a minute while I recovered what I happen to think is a remarkably resilient sense of humor, thank you very much.

All the appropriate kiddoes are happily ensconced in their beds, their respective mamas having heaved a sigh of relief that everything worked out okay. And I'm especially happy that the van just needed fuel. Actually, it needs brakes, a new battery, lock repair, a taillight's wonky wiring fixed, a new intake manifold and some TLC, but who cares? It did what we needed it to tonight. I hope the gas gauge isn't broken. Isn't it odd that it would show 1/8 of a tank and not turn on the warning light before just running out? Come to think of it, perhaps the whole panel of warning lights was somehow affected. When I started it up this afternoon, the "Check Engine Light" was off. This is an unusual thing these days. I had thought that perhaps the mess in the intake manifold had temporarily cleared--it's done it before for a few days at a time (which I tend to experience as a manifestation of divine favor). But maybe the whole thing really is going? Gah!

I think I'd better stop thinking out loud and go to bed before I find something to really panic over.

May your tanks be full and your batteries fresh. G'night. Rest well.