Frost

And summer went away.

Happy

Birthday to you, deeeeeeaar Llllllllllllllllllllll. . .

Salmon Run

Not much to say here, really. Some were nearly three and a half feet long.

Snapshot

One evening late last summer we returned home from a day out and about. While I was unloading the van with G's help, E hefted Q inside, while K and S answered a ringing phone to talk to daddy. I came roaring into the living room ready to feed what I was certain would be a starving, impatient baby, only to find this.

Our family has a history with this story. I first told the story to the kids' dad when we were freshmen in college. (On the phone--I was knee deep in an art project and he probably should have been studying.) I've calligraphied a passage from the book numerous times for friends and relatives in the midst of chemo. And now this. My heart is sort of in my throat every time I see this picture.

It's the first time E voluntarily read anything aloud to anyone, and she picked this book to read to this baby brother (who was born with very velvety ears that have been rapidly worn to real-ness) while their daddy was on speaker phone with the little girls in the same room.

And Q listened intently to the whole story.

Later

The weather was still pretty nice. This was taken the weekend of my cousin's wedding in a nearby dahlia field. Dahlia's were the wedding flowers and they were fantastic.

Summer

Long, long ago, on a planet far, far away, it was warm. The sun shone brightly. The wind was calm, welcome for it's relief of summer heat, rather than reviled for it's delivery of tree trunks unto dining sets or miscellaneous irreplaceable family heirlooms. There was no ice, no snow, no days (or weeks) without power, no half frozen track at the local junior high, impeding us from even having a decent walk in it's spongy, muddy texture. There was no need for several layers of clothing, for arguing small folk into the need for socks, never mind mittens. Ah . . .

Whew

They're baaa-aaack.

(Insert Hallelujah chorus.)

At the airport there were tears from S, wailing from K about the lotion she had to toss at security because it was twice the allowed size (though it's not so much about the lotion as, well, the mostly unspoken facts of her life). E reclaimed Q as "hers" and G wandered around blankly for a few minutes after we got home saying, "I can't believe I'm home." (Good? Bad? Only time will tell.)

So now that my kidlets are back, safe and more or less sound (I'm hearing about the scary movies, etc., as usual, and will for a few weeks until the nightmares and memories fade), my feet are back on terra firma, my brain's been reinstalled. I am also recovering from the chestiest, phlegmiest bug I've had in awhile and I feel more human, so I'll be back to post about last week's round of Q appointments. Perhaps I'll write a dissertation on discouragement, hope renewed, or something like that. Or maybe I'll just sleep. (Note the hints of late night unreasonable optimism? It's a side effect of motherhood. All things seem possible when they're tucked silently, motionless-ly, detritis-less-ly in. One's brain positively reels with all the range of possibility. Can you think why I refer to the mood as unreasonable optimism? Perhaps because, were I less tired or sick, the mood would be recognizable as something more like mania? Hmmm.)

Anyway, who cares. They're home.

Haaaaallelujah, haaaaallelujah, hallelujah, hallelujah, hallay-hay-luJAH!!

Handel rocks.

Merry

The best things in life are free. To whit:

Q has enjoyed playing with toys he can reach out and grab for the last couple of days now. Awesome.

Hugs from my kids. (Only two more days 'til they're back.)

Storytime, singing, playing, learning with my kids.

The smell of that smooth little baby neck.

Laundry, fluffy and warm from the dryer.

A shiny clean bathroom.

Raking up storm debris in crisp December air.

A sunny Christmas. (Yep, you read right. It's sunny.)

Two working hands for typing, making breakfast, hair brushing, back scratching, playing piano, changing diapers, holding books and turning pages, folding clothes, making beds.

The ability to think. And then, to understand.

Light switches which work, because linemen from all over the country have been cold and tired and working themselves nearly to death in these parts for the last week and a half. (Three cheers for these guys--as part of the 1.5 million local customers who've benefitted from your efforts, thank you, thank you to you and your families.)

The company of kindness. Whether it be familiars or folks met in line at Target, I find myself constantly running into people going out of their way to just be kind. Perhaps they've spotted the sign on my forehead, the one that reads: FRAGILE (Be nice to her or her head will explode. We're not kidding.) Whatever the case, these exchanges are an active blessing.

The opportunity to wish you all a very Merry, very peaceful, perhaps even blissfully calm, Christmas day. Whatever your faith, may your day be warm with love, rich with belly laughter, may you be well-fed and cozy, reveling in the gifts of your life.

Joyeux.

Quote of the day

To sum up the general theme of the day:

If at first you don't succeed, lower your expectations.
--me

The oldest four kids should be safely in California by now. If you'll excuse me, I have to go get the nasty taste out of my mouth.

Ptooey.

Definitions

Terms I'm encountering as I read:

Dysarthria (don't yet know if it will apply)

Arthrogryposis (Q is tighter in his ligaments, but not frozen at all)

Pseudobulbar palsy (don't know yet, but probably to some degree)

Dysconjugate gaze (yes, but to what degree?)

I'm looking for a definition of oropharyngoglossal dysfunction. Apparently this is more obscure. I'm guessing that it has to do with swallowing, which means that it's likely that Q has something going on here, but I don't know what.

Ack. He's peeping again. Did I mention that most kids with PMG seem to have sleep issues?

Neuro stuff

Read about polymicrogyria here, in a paper from France (not in French, but fairly technical). Wikipedia has more, with less big words (less being relative--heh). Even more (support site).

I'm hoping that it's PMG, rather than straight up lissencephaly. The prognosis seems better to me, though of course we'll only know what to expect from Q as he reveals it to us himself.

Oy.

Agenesis of the Corpus Callosum

There. I think I've finally spelled it correctly. Read about it here, as it pertains to this blog. Read about it here or here for informational purposes.

Ho hum

I had planned on leaving today after Q's therapy, but we're going to court on Monday instead.

Blech.

I'll post happier stuff later, but just wanted to let you all know that we're not on the road just yet. As always, prayers and good thoughts are very much appreciated--both for all persons in the courtroom and for my punkins.

Thanks.

Give your beloved an extra squeeze. It's been a doozy of a week--you both could use another hug, couldn't you?

Sleep well.

Ick

So Q had a check-up today.

He's at the 45th percentile for weight (though I think he was too wiggly for the scale to register correctly), 75th for height, and is still hanging out at about -3 for head circumference. At least his head is growing--too fast wouldn't be good either, so he's maintaining his curve.

Tomorrow I go to pick up the handicap placards for the van. The pediatrician checked the "permanent" box on the form.

The list of things babies his age should be doing is so far from what the daily expectation is in this house: sitting, standing, cruising, beginning to walk, babbling, saying mama and dada and starting with other small words... He doesn't do any of those things. He often doesn't notice me (visually) unless I'm right in his face.

And I just checked my email. You know, because I was just shutting things down for the night and apparently needed something to keep me awake. I'd be thrilled to leave the crud where it lands, if only it could just shrivel and die right there. No, it takes on a life of it's own, grows roots, then tentacles, morphing into ever more threatening forms.

Cryptic, aren't I? Well, what can I say? We may be back in court very soon. Sigh. We're supposed to be leaving for California on Friday.

I'm going to go read and pray. Both are usually very settling for me. I might even sleep tonight. And tomorrow I'll have a better attitude for having read, prayed, and slept.

Blessings.

Happy (belated) Thanksgiving

There's so much for which to be grateful this season. Here's a little off my list. . .

The usual baseline of food, shelter, clothing is profoundly appreciated here, as is the warmth of friends and family for sharing with. That we live where food, shelter, clothing are generally givens is awesome.

Our co-op/cottage school (still no catchy name) is exceeding our wildest hopes in productivity, friendship, volume of material covered. Thanks to this situation, the kids are getting a leap forward in nearly every subject: viewing all sorts of things with new eyes and having different experiences with awesome people. And we're going to cheerfully bust the math rut we've been in. Yee-haw.

The kids are pretty healthy. Amazingly, only the smallest of colds have made the rounds so far this season. A mere hiccup rather than nebulizer-worthy. Awesome.

Q has such an amazing array of people we're working with: Pediatrician, Neurologist, Ophthalmologist, Optometrist, Urologist, etc. Some of these have faded into the background as we do the weekly visits with Occupational and Physical therapists, twice monthly visits with his Speech therapist. Speaking of which, the news from vision therapy is that Q now seems to be seeing at about 20/310, a marked improvement from the 20/400 of the summer. The news from OT is that his newest therapist (just began this last week) believes he has some great building blocks to work with. He approaches his midline and orients to sound, though he's put off by sudden movement (proprioception again). Her goal for Q is to take him to a place where he can enjoy moving without being made afraid by it. The work he's doing in PT has him almost rolling over as well as holding himself up on his arms better while prone. We're moving on to supination (imagine holding a bowl of soup cupped in your hand="soup"-ination, vs. in pronation your hand would be upside down--think "pour"ing) and trunk steadiness for sitting. His pecs are tight, but stretching; his hands opening nicely during his grabs for toys. And note--he's grabbing for toys!! I am grateful for pharmaceuticals, for people who know their stuff and care passionately about what they do, and for progress.

I am thankful for the opportunity to mother my kids. I am grateful that they continue to grow and develop, each according to his or her own abilities and talents. S is close to reading, loves to play pretend, is perpetually hilarious in the most banal of situations, picks up bits of information wherever she is ("sum, esse, fui, I am, to be, I was" over and over again). K loves to read, is getting better with each passing week, and is so much a big girl, daily more self-possessed and self-assured, singing and playing piano with skill beyond her age. E is conquering everything that comes within reach: math, English, her reading skills and vocabulary have just jumped dramatically. She seems to be just on the verge of becoming a fashion designer--always drawing, cutting, pasting, mostly clothes/outfits. G is so different now than he was just a few months ago. He's attained new skills in piano (they are all thriving with an awesome teacher--recital's coming up). He's gaining on Latin at a nearly alarming pace. Ever watch your kid do something and wonder if and how you'll be able to keep pace with them? I've been thinking just that since he was 20 months and we were drawing parallelograms and rhombi because we were bored with stars, squares, ovals, whales, boats, etc. When he was two and a half we discussed parallel vs. perpendicular because he was playing with Jenga blocks and needed something more entertaining to do. More recently, his grasp of sentence diagramming is fun to watch. E has just begun this and she'll give G a run for his money.

Homeschooling. I can't say enough how much fun we're having with this academic business. That G says often how much he loves history (he's busy breathing science, so he doesn't think to mention that), that he asks to homeschool through college (heh), that I've been privileged to walk them through learning to read. . . Words fail me. It is an awesome, awesome thing. Additionally, having them close means I can put more effort into each of them individually. For example, the character development of late has been super. Each of them has made strides in understanding themselves, each other, that they must mind and help--why? Because that's what we do in a family. It's what we do in life. We help each other. Yup. Our conversation en route Thanksgiving day was about impulse control and personal accountability. We'll have the same conversation several times over. Various parts will fly over various heads, yes, but more will stick each time. Some day, we won't begin these conversations with, "Can you think why your sister might not enjoy dirty, smelly socks in her face? Was that a good choice? How shall we help your brain grow to remember that self-control will make for happier times for all of us?"

(Deep breath.)

So. Things are often crummy, true. But they are as often deserving of superlatives (ask G for the definition of superlative as a part of speech, he could use the review), if one is only willing to look for the appropriate features.

It's been horrifyingly rainy here. The month has literally blown the record for wettest month away. By the end of November, we will have had nearly half the rainfall for an entire year. The month has brought power outages, flooding, loss. The damage to national parks is estimated at $50 million. The damage to private property is double that. And yet.

We were driving north one morning when the clouds broke behind us and sun slanted through at a 45. The colors, wet and glossy, seemed backlit. The road reflected the sky, the clouds were suddenly a million shades of blue-grays, the trees looked as if they had been drawn with generous lines of oil pastels, stark against the backdrop of flooded fields, the few remaining leaves on those branches added with wet splotches of copper. Cranberry red leaves glowed, fir trees shone green, green, green. A great blue heron flew over the road.

Yesterday, driving home, I rounded a corner coming down a hill and suddenly the sky was a Maxfield Parrish painting: sun at the horizon broadcasting startling shades of apricotpinkgold, blues beyond description. There were clouds of every size and type, some losing rain in vertical swoops, some scudding across the darkening sky in great mounds of marshmallow fluff. The bottom edge of the picture was framed with firs, while seagulls soared and dove.

Last week we saw a full rainbow on our way from the art museum to gymnastics. A couple of weeks ago, in a drilling rain, we watched a forty foot cedar, several 30-40 foot firs and alders, and stumps speeding past in a swollen river. The camellia is blooming a whispering pink in my aunt's backyard. The jasmine twines itself higher in a protected corner next to the house. The bunnies mow the lawn.

Life is hectic (you should see my color-coded schedule--it cracks me up, I'm weird that way). It is sometimes crazy and more than I know what to do with. Often, it is messy. Though I sometimes crave a space of quiet, I don't know that I could figure out what to do with it, were it to present itself.

Life will, God willing, always be busy. Full to overflowing with the richness of growing-up offspring, the blessed cake of ordinariness, the frosting of extraordinary people.

I am glad to be here.

Howdy

I'm still here! Not asleep. (ha)

Last week, the little S had been fussing with her hair for awhile when she turned to me and said (headband askew, hair sticking up), "I look crazy. . . (pause) . . . but not dang crazy."

Splutter. Choke. Run from the room.

____________

Q starts Occupational Therapy November 20 at 8am sharp. This will add a new wrinkle to our schedule. Perhaps he'll begin to sleep more so when I have to get up in the dark in order to get everything rolling for the day I won't feel like a zombie? Too much to hope for? Nah. Sooner or later it has to happen.

He has seven teeth. This could account for some of the crankiness he had, but I don't know about the crankiness of the last two days. His neck feels like he has a fever, but I'm not getting anything to register. Hmmm.

____________


Have I mentioned that I love having a Sabbath? An honest to goodness time off from the world? This is what I read this last Sabbath:

We would never judge any of God's other children with the savage condemnation with which we crush ourselves. Indeed, self-hatred becomes bigger than life itself, growing until it is seen as the beginning and the end. The image of the childhood story about Chicken Little comes to mind. In our self-hatred, we feel that the sky is falling.

Understandably, then, we hide our true selves from God in prayer. We simply do not trust that he can handle all that goes on in our minds and hearts. Can he accept our hateful thoughts, our cruel fantasies, and our bizarre dreams? we wonder. Can he cope with our primitive images, our inflated illusions, and our exotic mental castles? We conclude that he cannot and thus withhold from Jesus what is most in need of his healing touch.

In order to grow in trust, we must allow God to see us and love us precisely as we are. The best way to do this is through prayer. As we pray, the unrestricted love of God gradually transforms us. We open ourselves to receive our own truth in the light of God's truth. The Spirit opens our eyes to see what really is, to pierce through illusions so that we can discover that we are seen by God with a gaze of love.

Brennan Manning, in Ruthless Trust: The Ragamuffin's Path to God

(Thanks to T for the book rec--it has truly been balm for my soul.)

Good News

It's about time, isn't it?

No urology surgery, for now, anyway. Chances are good that Q will grow right out of retractile testes, and the hydroceles seem to be resolving.

I'd hate to overstate it, but. . .

WAHOO!!!!

(Ahem.)

And on the "other front," according to my representation and her office, the other person retained seems to be quite reasonable and level-headed, so perhaps certain aspects of life will pass with less strain. Could I be more vague? Well yes I could. I'll just say that while I'm not holding my breath for things to turn all rosy or for (say) cherubs and rainbows to start popping out of canopic jars, I'm relieved at the notion that the hyperbole will likely ease up. I kind of don't have the time (or frankly the emotional capacity) for nonsense. Nope. I checked my schedule. It's pretty full.

So. Wow. I'm pretty happy about how the day has gone. Nothing earth shattering nor any gigantic resolution, but Q doesn't need to have surgery for this. Awesome.

I've done my Q exercises--using him as my "weight." I've nursed him, dosed him, tucked him in. The other kids are read to, prayed with, tucked in and wiped out from the birthday sleepover last night which followed our visit to the water. Perhaps I will dream for clarity tonight and it will come to me why I can't get blogger to post pictures. Argh. I have some really nice ones and I bet you'd think they're neat. Now it's just teasing isn't it?

Yeah. So have a good sleep or breakfast, whatever. Thanks for the hugs, the prayers, and for happy dancing with me.

Hal-le-lu-jah. And the people said?

Another week

We'll be having a field trip tomorrow. We're going to the water. We'll look at tidepools, get our toes wet, freeze happily. Change into warm, dry clothes. Eat warm food, drink hot chocolate, revel in the negative ions makin' us all content with ourselves. Q will nurse a lot (the sea air makes him hungry). It's his best skill.

Did I mention dithering about starting solids? I've had that gritchy mama gut thing. I started solids a little later with each of my kids, yes, but with this one I've just felt my heels digging in every time it came up. Yes, the swallow study showed no aspiration, but. . . He still gags on his tongue, uvula, extra saliva, whatever, at times he really shouldn't have any kind of problem. After discussing it with the speech therapist (following the seizure development), she said that to introduce anything new at this point could result in him rejecting it altogether. Now that's not what we want. I'm a dedicated nursing mama, but come on. Every child should get to spit pureed peaches on their mother at some point. And I'd rather not be breastfeeding exclusively when he's say, singing his ABC's. (Assuming that will happen.)

So we'll continue on for now, re-evaluate in November sometime.

The rest of the week brings both answers (I hope) and tenterhooks. Urology appointment with Q first thing Tuesday morning, court date same day, probably happening right at the same time. Funny, a number of stress tests and perinatology appointments happened while court was going on too. As always, I'm praying for cool heads, calm choices, the presence of the Holy Spirit in that room. There are a number of good people involved in this who will do their best, I am sure of it. I will roll with whatever is decided while wishing fiercely that I could make this cup pass from my children's lips. I don't know how I would do such a thing, but I feel helpless and sad for them in this. Yuck.

Speaking of which, I watched "Mean Girls" last night. I hear it's a pretty close approximation of modern high school. I'd have to say that it had a lot in common with the junior high I attended more than twenty years ago for a year and a few weeks (short enough time the second year that I don't even remember what classes I had, only that I hadn't gotten the Art class I wanted). The movie was funny, quietly scathing in it's social commentary. There was a little girl in the background in a few scenes, dancing to hideously innappropriate music. It made me think of the way so many little kids are getting handed off to pop culture for raising with nary a differing opinion offered by a parent. I think I might let my daughter see this in a few years. We'd watch it together and discuss it. I do think some of the film's premise is faulty (logically speaking), but seeing how it mirrors reality in society, it's hard to quibble with it. I recommend it, but be aware that it'll probably bring back the horrors you thought you got over a few years after you were done with high school. Now to read "Queen Bees and Wannabees" upon which I understand the movie was based.

I'd dearly love to add a blog roll to your right, over there --->, but the settings (or whatever it is) are loading weird, so there's an error on the page and I can't do anything to it. I'm going to take it as a sign from God that I'm supposed to go to bed.

Kiss those babies, nuzzle their necks--even if they're so big you have to chase 'em down and sit on 'em before they'll let you. Look past the rolling eyes and retching noises, the "MOOO-oom!!" They're secretly pleased. They might even grow up to do it to their own kids. (wink)

Sleep well. I hope things are peaceful and happy where you are.

(PS--Kate! I did get your email. The books are packed and ready to go. I just have to get to the post office. Sorry for the delay. I'm waving--would still love to share some chocolate.)

Wah

I'm pretty sure I'll come to like this new thing Blogger's doing. But I don't have lots of time for new stuff--learning things outside my current scope messes with my head. I know I could have left it like it was. I know I didn't have to switch. I thought it would be easier. I need sleep. Wah.

Moments

We had a morning "out" today. On the way to the counseling appointment, we sat in traffic behind a three car accident, thereby ending up about half an hour late, instead of the few minutes late we would have otherwise been. The kids did math, K did reading and phonics while we waited. Following our time in the professional building, we progressed to Target. As we were pulling in, the kids were listening to a history CD, so I finished up my phone conversation with a friend. Things began to fall apart.

Realizing that I was on the phone, the previously perfectly behaved children lost focus and began to "play fight." This means that the olders have instigated something with the youngers (names omitted to protect the people who should know better) and are now highly amused at the tremendous force the youngers are putting into ineffectual attempts at retaliation. This infuriates the youngers who then redouble their efforts, and eventually they manage to injure the olders who know that if they lay a finger on those little ones, mother will transform like a scary cartoon character and become a seething ten-story, laser-eyed monster o' righteousness and when this happens, all bets are off, no sensitivities are considered. ROWR!!

At precisely the point where I was ready to issue the warning that they had better not speak another word to each other until we all had something nice to talk about, Q, sitting in his car seat, pooped through his clothes and provided a delightful distraction. Saved by the dirty pants. And shirt.

Q is now tired and ready to drop, having been super cute and chatty throughout the morning's appointments, but must have clean diaper and clothes before sleeping. He's usually quite affable even under otherwise difficult circumstances, but he doesn't enjoy having his clothes changed and when he wants to sleep, it's really best to let him. Have I mentioned also that he's teething? Yeah. So I'm now wrestling the cranky infant out of (breastmilk) poop covered onesie and pants, trying not to wear too very much of it myself. He's crying louder and louder. The kids decide now would be the time to hop out and impress the world with their ability to dance in the parking lot (girls) and use the cart return spot as a jungle gym/bird spotting tower (G). Why? Because apparently, yes, they are new here. No one told them the rules (ha). Because Q screaming isn't enough. No, we need the presence of four children behaving like monkeys in order to properly attract the attention of everyone at what must certainly be the world's busiest Target store.

I roll my eyes.

Some Target patrons shoot sympathetic glances as they rush by, some shoot daggers. I holler, over Q's escalating complaints, for the girls to get back up here by the door, no you may not dance at the back end of the van, because this is a parking lot, that's why, cars drive here just like they do in every parking lot, no you cannot count on the smart grown-ups driving the cars to see you even if you are right next to the bumper, no, not even if you are touching the bumper and only wiggling your feet. Yes, I'm sure that plenty of people are quite impressed with your wanting to hug and kiss each other like sisters should, but it's not appropriate here. And get off the cart catcher. Because you are a boy, not a monkey, that's why. Would you please go get the stroller out and set it up so Q can take a nap? Thanks.

I shoot Mylanta into Q's mouth, having by now dressed the cranky little screeching octopus, Desitined the bottom, cleaned myself up. I drop Hyland's teething tablets into his mouth, wrap him in his jacket, zip it, snuggle the blankie around him like a little burrito and bounce him to settle him down. I could swear I've seen that woman over there at least eleven times and I've been busy. She's just circling, waiting to see if I deck one of the kids (not an option, lady, even now) or if one manages to escape so she can call authorities. Perhaps I'm a tetch paranoid. It's possible that she was merely returning her cart all the way inside the store thereby passing by several times in order to avoid having to interact with our little menagerie.

At my request, K and E got my purse out of the van (bounce, bounce) before anyone could accidentally lock the keys in (bounce, bounce) and managed to pick up the diapers that popped like eager corn from the diaper bag (bounce, bounce) as they were moving it from front seat to stroller. The children then fell in line behind me. I was carrying the bouncing Q, who seemed to be losing his enthusiasm for loudly emoting. Indeed, by the time we reached the inside cart area, he was out hard. (I owe those people at Hyland's my sanity, let me tell ya.) I laid him carefully into the stroller, making a dark cocoon with my coat and we proceeded on to get a little lunch. (This Target serves cheap Margherita pizza, among other things.)

Deep breath.

I parked the stroller in a little stroller-shaped niche and got the kids at one table next to it (no, you may not go wander through the "Boo-levard" looking at Halloween stuff, you will sit quietly and wait for your food, stop shaking the table, no, stop right now, don't bounce your knees under there either, thanks, now look around, use your brilliant minds to occupy yourselves while I go get food) and went six steps off to order. As I was waiting (and the kids were giggling, talking, observing the security cameras and waving benignly to them), a very tall, very leggy person dressed in high-end running gear (you know, as if she had actually been running in order to get and keep those legs) came up to get her order of tacos. She gracefully maneuvered her cart toward the counter and snagged her bag while keeping careful rein on her own three year old monkey who seemed intent on exiting the basket in the least graceful manner possible. As she did so, she turned toward me with a dazzling smile and said, "Excuse me, do you have a homeschool?"

(Oh please, please don't ask me that question today. Any other day, but not today. Did you see us in the parking lot? I don't despair easily--these moments are just that, moments, and they pass like anything else, but you must have seen us not at our, ahem, best?)

I cocked my head, smiled a brilliant and sincere smile back, and said, "Yes, I do."

"I thought so. Your children are just darling."

Uh. Smile. Blink. "Thank you."

"Just darling."

And she was off.

Huh. I wonder how she knew. Maybe it was the shoes. Heh.

(P.S. Q slept two hours as we dawdled around the store. We got all that we'd gone for--except more teething tablets.)

Huh

Is it just me or does this seem a little, hmmm, slimey?

The good stuff

Here's something for all the exasperated mama's out there. Yeah, it's hard, this job. Nobody says thanks for de-germing the kitchen (or the children), for doing seven or twelve loads of laundry in a day (oh yeah, baby), for figuring out how to feed/clothe/entertain everybody on next to no money and what little creativity remains in your brain. There are waaaay too many bodily fluids involved in motherhood--amniotic is the least of it. The little boogers get into stuff, break things (mostly your heart), and wake up just when you're begging God for a whole night's sleep. (You know, just once a decade would be fine.) And then a mama who's had a bad day, one of those, "What was I thinking--having children? I'm not good at this, I'm raising sociopaths," kind of days, the mama goes and does this and you remember that the bad day, the many bad days, can't compete with the sweeter parts of reality.

Aww. Maybe this job isn't so hard. . .

Life goes on

Q started the next higher dose this morning. He's having a snuffly nose, so I gave him Benadryl also--between the two he was out hard for a looong nap. I got some laundry done, some organizing of itinerant stuff (and it is, not merely ubiquitous, but also itinerant), a wee bit of research for field trips. The kitchen is cleaner, the trash is out (thanks to the G and S team), the bathrooms are spiffed up (thanks to E), K is organizing the shoe racks by the front door and putting away the flotsam that accumulates near the stairs. S is on a mission to collect all the shoes that aren't where they're supposed to be. Q is stretched tum down across my lap, drooling over my leg, kicking like mad. "We're All in This Together" is playing (mix courtesy of my brother) and we're dancing while we work. I'm sitting now because vacuuming whilst carting the punkin is difficult and requires breaks. My left biceps must recover sufficiently to man the machine while I go on to wear out the right side.

While I'm typing, the second load of sheets are running. The dryer vent is outside the open deck door. My self-administered reward for surviving last week's events was the purchase of ridiculously expensive fabric softener sheets. Mrs. Meyer's Geranium. For those of you who don't know, my girls have eczema which is not too bad most of the time, unless their clothes/sheets are washed with scented detergent, dried with full sheets of fabric softener, or they bathe in or spritz with too much "smelly stuff." On the one hand, it's a shame, because there's some really nice smelly stuff out there. On the other, it makes it easy to limit severely the amount of smelly stuff in the house because most of it (in my/their price range) is wretched and makes me sneeze. So I use the occasional half sheet of fabric softener, just to keep static down, and we're trying out the new stuff on the grown-ups sheets first. It's made with geranium, rose, and clove oils. Ahhhh. The air wafting up through the screen door is luverly. Hope it's the same on the sheets themselves.

Q is becoming somewhat less enamored with his position. The CD has moved on to "What a Beautiful World." It's warm here. Sunny. We had sliced Honeycrisp apples, veggie corn-dogs, papadum chips (TJ's) for lunch. Big drinks of water to keep the busy little people hydrated while they dance and clean.

Yesterday was fun--we walked through a National Wildlife Refuge (birds), stopped in at the visitor's center where my parenting was complimented--always nice, but it makes me blush. We walked a loop trail, then sketched the scenery, frogs, birds, each other, while enjoying gingersnaps under the covered observation area. (Now "Yellow Submarine" is on--"Eric the Half-a-Bee" can't be far behind. Love it.) While we were driving yesterday, we listened to "Sing a Song of Tuna Fish"--a CD of the book by the same name, read by the author. I recommend it. I had to squelch my own laughter in places where the kids were clearly taking the story quite seriously. Better go put the fussy teething baby down. More later. . .


Well, in the meantime, I've fed the kids twice (swimming requires an extra meal), done the swim lesson run, gotten Q down, only to have him wake up again, read stories, and dropped a twelve inch square piece of slate on my foot. At least it wasn't my toes. Bring on the arnica.

After looking at the photos from the last week, I thought I'd upload some to share. I tried to make an album with MSN, no luck. I tried to make an album at Yahoo, no luck. I've tried four times to post here a picture of the lovely scene we were sketching yesterday and Blogger won't do it. I'm out of patience. If it weren't so late (after midnight now), I'd try to set up something on Photobucket. It comes highly recommended. (Thanks, Amy.)

While I'm busy reveling in the perfect moments, strung together, life creeps in, eh? No such thing as perfect anyway. Sigh.

'Night all.

Hello

I'm still here! Breathing! Feeding the kids! Folding laundry! Tra la!

We had a very odd weekend which I'll post about as soon as I can cobble together the time required to do it well. Until then (don't hold your breath), here's some stuff to chew on.

Thesis topics: Themes of loss in Lucy Maud Montgomery's Anne of Green Gables series. Hmmm. Okay, there was more than one thing in my head when I first thought about this. . . Perhaps I'll just come back to that.

We're (sort of) taking the week off from school. We've had a very successful first six weeks and are wrapping up loose ends while otherwise going about the regular business of life. We hit the zoo/aquarium yesterday, planned to do a big tour o' fun today following piano lessons but the teacher called to say that she was on her way out of town to attend to her failing father, poor lady, so we did other, less consequential things instead. Tomorrow, following counseling, we'll be off to a bird refuge (shhh--the kids don't know it yet) and I can't remember Thursday's plans. Friday we're going to go pay fines at the library (wheee!), check out another two giant baskets of books, and get Q back to his regularly scheduled therapy now that our beloved PT is back from her honeymoon.

At the moment, the most pressing things in life are: getting Q to keep his Trileptal in his mouth long enough to swallow it, figuring out a more advanced earth science and astronomy curricula for my boy who could quite nearly have written our current ones (minus punctuation and spaces between words, of course, because we've yet to see the compelling argument for those), gathering gumption for the daily-ness of things, and getting enough sleep. And on that note, I'm off to bed. Thanks for the ongoing thoughts and prayers.

(P.S.--Q is doing well on the Trileptal. He slept most of his first 24 hours on it, but woke up after, mostly happy--but for the teething. Ack! His dose increases again on Thursday. I expect him to be quite sleepy again, but it seems to have resolved quickly for him and should again. He's had small seizures with far less tone present than in previous episodes, thank God. His hands have been softer, more relaxed lately. It seems to correspond directly to the work I do on them--massage, finger play. Good news, that. On we go.)

Fun

We had a lovely time at the fair. We enjoyed the requisite cotton candy (a cone, shared) and stomach churning rides. We saw 4-H animals and projects, giant carved pumpkins, quilts, needlework, a big Lego train set, paintings and photographs, prize-winning bread, veggies, canned fruit. We learned that Highland cattle have bangs--their horns would make a nice cow wig. We learned that a cross between a zebra and a donkey is called a Zedonk. We learned that alpacas, as members of the camelid family, spit, but rarely at humans. We walked a lot.

We came home to a fantastic dinner courtesy of my mom: pasta with a "cream" (milk) sauce made with cremini mushrooms and parmesan, green and yellow string beans, sliced tomatoes with fresh mozzarella and basil from the garden. It was almost enough to make up for the wretched (but happily enjoyed) diet of the rest of the day.

Q slept most of the day away and is zonked now--no doubt a combination of the over-stimulation of the crowds and his new medicine. He liked what he was awake for. Nursing, mostly. Next year he'll notice the animals and want to try to milk the pretend cow too with the big kids. Maybe it will be good therapy for him, who knows. Maybe he'll be ready for a taste of cotton candy by then.

What a day. Lots of fun. I'm glad the fair is over 'til next year.

EEG

This morning Q had his EEG. Battling traffic, we arrived quite late without having kept Q awake en route--this because he was to sleep during at least part of the EEG if at all possible. He got the little red greasy pencil markings all over his head, the scrubby exfoliant stuff on top of the little red marks, the globs of cream and little metal cup-shaped leads, tape to hold them in place, stretchy gauze to then hold the tape in place. He was hungry while the nice EEG tech lady got him all fixed up, but he was remarkably still and patient--I held him for much of the hooking up procedure, which she said just never works--it did today. He nursed, listened to the birds outside the window, then laid on my tummy and talked. He'd done quite a bit of yelling at the marking phase, so was nice and tired. After much cajoling, he slept, courtesy of the Hyland's teething tablets--which I spotted when I asked her if she could reach the rarely used pacifier out of the diaper bag (my range of motion was small; those leads are very short). Turned out there wasn't a pacifier in the diaper bag, but when I saw the bottle I thought hey, why not try the tablets? Can't hurt, might help. They hadn't even dissolved in his mouth and he was out. Thank God. We proceeded from the EEG lab to the neurologist's office, more than an hour late for Q's appointment.

It was Providence that Q slept because, as it turns out, the telling "blips" in his left frontal lobe showed up almost exclusively when he was asleep. Imagine an itinerant domino that is perpetually falling over and righting itself, falling and righting. When it's all by itself nothing much comes of it's falling and righting, falling and righting. If it gets near another group of dominoes, or they get near it, when next it falls it takes the group with it. The dominoes may vary in size of group, size of individual dominoes, colors, etc.

So when Q is having repetative sharp intakes of breath with his arms flung up, even babbling happily between inhalations, that repetition is likely seizures. When he is tense, appearing stuck in a startle reflex, hypertonic on one side or bilaterally, crying at a higher pitch, sounding scared, worried, this too is a seizure. I suspect that his very restless nights are also seizure activity. Earlier this evening, he had a seizure that lasted about three minutes. It was the longest so far.

(Splat. There goes my head again.)

I began the Trileptal dosing this evening. His dose is tiny (only .5 ml) and will go up steadily over the next few weeks until he is at the daily dose of 5 ml, split and dosed every twelve hours. Apparently, this drug is the most benign of all the seizure drugs. A tiny percentage of patients on this medicine fail to self-regulate sodium excretion, so Q will have his sodium levels checked in three months. A tiny percentage experience irritability or drowsiness which usually resolves in a matter of weeks. Otherwise, there are no side effects for liver damage, bone density, etc. for which I am so thankful. I am praying that this drug will work and we won't have to deal with any others, at least not for a good long while. There are no cognitive effects at all, so Q can go on developing to the best of his abilities.

The fact that he is having seizures means almost nothing for whether or not he'll go on to have worse seizures or "grow out" of them. It's anyone's guess at this point. The reason to treat now is that by controlling the seizures, any chance at further brain damage is curtailed (we hope). Though the seizures he's had so far are not likely to have caused damage, more frequent and/or longer seizures easily could. If he were to have a seizure lasting more than five minutes, to become unresponsive or otherwise seem seriously "off" for any extended length of time, we are to call 911. But hopefully the Trileptal will stop it here.

I talked with the kids about what seizures mean and how we all have our own particular brains with our own "issues"--no brain is exactly like any other, everyone has their own peculiarities and these are Q's. Some of us have difficulty reading, some with focusing, some with seizures. As we have friends who have had seizures and talked with my kids about feeling ill, they are not entirely without context. G said that he doesn't want Q to have seizures. (What does one say?) I told him that I don't either and hopefully the meds will help. We talked about what to do if they see Q upset or if they hear him crying like he's scared. E wants to have some medicine to give him so it will stop--I told her that I wish it worked that way, but the meds will eventually affect it, just not at the time of the seizure. If I'm in the shower they should look at the clock (the bigger kids) and come get me or Grandma. The little ones can just come get me right away, or pat the punkin on his tum or hold his hands. Any gentle touch seems to calm him a little until it passes and he can relax again.

I've eaten my third smallish bowl of chocolate pudding. It's homemade, it's warm, and it's sooooothing. It's high in calcium which is very good for milk production, right? It's chocolate: my dad calls it vitamin "C"--heh. It is, this evening, central to my nifty stress diet.

Tomorrow, we are going to do a little school, do a little cleaning up, and go to the fair. Today it rained so hard and horizontal for about five minutes that there were rivers running rocks, gravel and fir needles down the road, there were waterfalls over the gutters, there was hail dancing on the skylights. Good stuff for reinforcing our lesson from Tuesday about clouds and how various types of precipitation form. We decided that, due to the diameter of the drops, it was definitely rain and not drizzle. (I know you're relieved to hear that.) The weather should be clearer tomorrow--though it sounds like it's dripping out there again. Since the evening was clearing, leaving the clouds all pink and blushing as we were leaving swim lessons I'm going to choose to live in hope, that's what.

Perhaps I'll add a dash of temporary denial and call it good. It won't be as good as the pudding, though. Ha. Got any good resources for info on seizures in babies? How to talk to kids about seizures in their siblings?

I'm off to put the pudding in the fridge and go to bed. Hug your babies. 'Night.

Splat

That'd be my head falling over onto the keyboard.

Yesterday afternoon Q started having a profound startle, sharp intake of breath, seeming to be stuck in flexion. It makes him cry, he seems to feel as though he's falling through space, sometimes it sound as if he's in pain. If he's being held, he sometimes pulls his knees up sharply and just howls. This looks very much like seizures.

As a result, tomorrow morning at eight he has an EEG followed by an appointment with the neurologist. I got part of one of these episodes on video and will take that along. I don't know. It'd be great if the EEG would show something so we could do something, but of course it's best to not have seizures at all. In which case, wouldn't it be grand if he'd stop having whatever it is that looks like seizures?

The swallow study was not a raging success. He had to be strapped down and turned from his back to his side and back again. He did not like the barium (big surprise) and swallowed only what I could dribble into his mouth from the glucose/formula bottle. Does the stuff have to be chilled in order to work? Is it a chemical thing? Because--radiologists take note--I really think babies would take it better if it weren't icy cold. Just a hunch.

The radiologist (unusually personable for a rad) seemed to think that whatever he had seen looked clear for swallowing, reflux, gagging. He said he'd review the video and write notes to the pediatrician ASAP and she was welcome to call him today if need be. Again, unusual, but very nice.

Yesterday was Q's first speech therapy session. He doesn't like having gloved fingers in his mouth. He was generally unimpressed with the whole touching of his face, gums, cheek play. Even that is good, because at least he knows the face is his.

School is going well. We're about to have a week's break (for zoo, aquarium, wildlife viewing, hikes) because we've done so well in the first six weeks. Tra la. We've done art, math, English (grammar, writing, handwriting, spelling, phonics, reading), Latin, logic, some dictation, copywork, memory work. The kids are back from the end of summer break for piano and have resumed swimming lessons. They want to start gymnastics again. Ack. Perhaps I'll let them if they promise to keep a couple of assignments ahead in math and English (ha!). G is loving the reading. They're all doing fun stuff, but G is moving into a more, ah, complex level of literature--he's done Sir Gawain and the Green Knight, has read a bio of Attila the Hun, and will shortly begin The Canterbury Tales. We'll see how that goes in picture book vs. Norton's Anthology of English Lit--any guesses?

I'm going to try out Teaching Textbooks for G's math. I see no need to frustrate the poor kid with having to write and rewrite all the processes when his brain leaps through them faster than his pencil can move. I hope he likes it and that he'll begin to love math like he does science. Even better, I hope that they will all decide that they love math so much they beg permission to work through it at their own rapid paces and I never have to say another word about it because they just love math so much!

Yeah. The sky is a purty pink in my world . . .

I am t - i - r - e - d.

So off I go to persuade the girls to sleep and then I will collapse as well, unless Q is up. Ah, there he is now.

Have a good sleep. :o)

Being

I was just reading Job.

"Why does the Almighty not set times for judgement? Why must those who know him look in vain for such days?"

There's a LOT of insanity floating around in the stratosphere, atmosphere, lithosphere. Some men, formerly thought to have been solid, stand-up guys, have gone off their nut and decided to do things that threaten their families' safety, well-being, livelihoods. Some people have made bad choices, others have been on the receiving end of crummy genes and then compounded their rotten luck with bad choices. This makes for an odd soup--and not much fun for the minors. It makes me want to engage in a good old-fashioned smack down. You know, to help handle the evil-doers. I have a surplus of righteous indignation these days.

So what is up with this? Does every generation have to leave it's own sad mark on it's children? It reminds me of the story about the man who grew up with an alcoholic father beating on him. The man became a father himself, also an alcoholic. The man thought he was a good father because he didn't hit his kids. They saw him in a drunken stupor often, but he had risen to his own expectations and didn't see that he wasn't the dad his kids needed. What mattered to him was that he wasn't hitting his kids--this made him a better father than he'd had.

Do you see how the logic is full of holes? Just because a person isn't as bad as another doesn't make that person righteous. Being a lesser evil doesn't justify one's life. I believe that it is imperative that we individuals be willing to rise to the expectations of One who knows what we can be, not just the mess we are prone to be as a result of our particular nature/nurture combination (plus that zero entropy thing again--sheesh). How else can we expect to succeed on any level as parents? As citizens of this planet?

The sins of the fathers (and mothers) surely are visited on the successive generations. It will be this way until we don't live here anymore. Perhaps those of us who wish for something better might strive for higher goals in more tangible ways. Parenting classes, brain function seminars, books, good friends, counselors of many stripes (clergy, our own parents, psychologists, etc.) all things/people which can prop us up in our journey. Are we afraid to admit that we don't know it all? That we seem to be the only ones who didn't get the handbook in our "Here's What You'll be Wondering About When Everyone Else Seems to Have It Together" kit at birth?

Goodness, people!!

Some of us need desperately, in order to redeem any vestiges of our souls, to apologize, long and hard and repeatedly. Some of us need to realize that though we deserve to hear such apologies, we never will, and? We will be okay anyway. It is time for the lot of us to get on up and get over ourselves. Take your meds, figure out what you need for vitamins, supplements, sleep, shoulder(s) to cry on, go for a nice walk or run in the rain. I don't care what you need to do to cope (within reason, obviously). Just do it, already. (This includes myself--this post is partly a pep talk for moi. Thank you for your patience.)

Boy. I guess in looking around, I just find it hard to take that we're all such a mess, that we can dog on ourselves but not see the same issues in others, and we seem to be continuing that middle or high school nonsense of believing that we're the only ones with any sort of problems (or the reverse: we're perfect and everyone else is the problem). What? You're in your mid-thirties (go with me, here) and you're still wishing you had Susie Cheerleader's hair? C'mon. Really? Or now your kids are hassling you--they've developed ideas of their own (pesky little people anyway) and aren't quite conforming to what you thought you'd have for kids. So? How about the spouse? The belly/stretch marks/thighs/toothpaste cap protocol making you buggy? What's your point? "If you compare yourself with others you may become vain and bitter; for always there will be greater and lesser persons than yourself." Your spouse is likely no better or worse than the sweet/cute/hunky person you think has it all together and, as a result, would never leave the toothpaste cap rolling around on the counter. I mean really, can you imagine?

Are we not yet to a place wherein we can acknowledge that there's enough crap to go around without having to make up more? There will always be people looking to ravage some little country and rape and pillage and use WMDs. Do we need to behave in that same way within our own families? In case you haven't gotten it yet, once you bring a little person onto the planet, it is so not about you. Gird up your loins, yank up those bootstraps, and stop it, already. Your babies and their babies unto the seventh generation need you to do better, be better than simply failing to beat them. They deserve everything you never had in the way of needs being met. And, even more, they deserve to have the parents they need, not simply the minimum we can provide them as we pause for further navel-gazing, rapt in our own self-pity.

When faced with a moment of panic, the urge to turn away because I'm in too deep, unable to figure out the quagmire at my feet, the emotion and complexity of a particular moment with one of my kids (or any number of other interpersonal situations), I've found that the only thing that works is to breathe a prayer and step off that cliff into the mess. Dive down deep. It is part of being human. It's a dirty business. A profoundly sticky, messy, even bloody business. But it is Why We Are Here.

"It doesn't happen all at once," said the Skin Horse.

Becoming human is a lifelong journey, during which we have to be willing to have our corners knocked off, the fur worn off our velveteen ears, to love and be loved without reserve, no matter the perceived cost. It requires humility and a willingness to be where we are regardless of how it looks to anyone else. It means that we must stop believing that everyone else has something better. It means we must be willing to acknowledge and revel in the glory that is, right where we are.

It is very, very hard. It is almost impossible to do this well. But don't you remember? All things worth doing well are hard. And the rewards for yourself are astounding, even more are those for your offspring. Clear out unto the seventh generation. Perhaps beyond.

If you are someone struggling in this, I heartily recommend The Blessing, The Traveler's Gift, and keeping a gratitude journal. Please, please don't let another minute go by without acknowledging how important this is. If you can't step outside of yourself for your own happiness, go peep in at your sleeping babies and do it for them. If you can't do it for your own, do it for mine. I need you to do what you can to make this corner of the universe a safer place for my kids to grow up. I have great expectations for this next generation, but they won't make it entirely on their own.

Also? We, the current adults, are not alone in our journeys. We have each other and our Creator. We will encourage one another and expect miracles. We will be astounded regularly at the beauty surrounding us.

Last week, as the kids and I were sitting in traffic, singing rounds of "Where is Thumbkin?" we glanced to the left to see the most spectacular rainbow I have ever been privileged to spy. It was a full bow, with more than a hint of a double to it's right, the second having wider bands, almost double itself. Up at the top of the full rainbow, the arch was nearly full of smaller ribbons of color, repeating themselves on the vertical. As we crept around the bend in the freeway, the color of the sunset bouncing off low clouds cast a toasted, blushing peach color over everything. The wetness of the trees and grass, the river, the traffic, all glowed as if lit by the hands of heaven. We were still singing, softly, in rounds, for the first time ever, struggling to keep the melodies running without blending into the next person's voice. The sun shot white gold rays through distant clouds at the horizon and dropped behind the mountains, no doubt shy after such a flagrant display.

My days leave me tired, sometimes without seeming to have much opportunity for recharging, for taking the spiritual nectar and leaving the pith, for even swallowing at all. But in the middle of the crazy, chaotic stretches of hours, the still small voice whispers, the piercing loveliness is there to be had, if only I will stop. Breathe. Acknowledge that it exists. Even with the spilled ketchup, the stalled traffic, I can have a space of bliss with my kids. I can be temporarily blind to the fights they've just had, overlook the complications for a few minutes, and just be with them.

At a certain wedding, the pastor talked about Christianity being all about being with your friends. That it was what Jesus was about here on earth. The being. This, I would venture, is what our Creator wants to have with us. The being together. Perhaps our time here is a trial run? Perhaps we can get past our discomfort at our own inabilities and get on with things?

My oldest prays at bedtime, "thank you for this beautiful, beautiful world," and in the next sentence asks for special help for those suffering in floods, fires, earthquakes, tsunamis. He is good at seeing what God has made in the midst of destruction and irretrievable loss. He knows that it's true: we are all broken, lacking in velvet, a mess, yes. But it is not all that we are.

Be more. Choose that.

May you rest well and rise renewed. I know you need your rest. You have those kids who run you ragged. :o)

Yikes

Here's a small dose of panic. For the full effect, read his article on earthquakes too. Tra la la.

Hat tip to L for the link--I'll be right over for butter.

Odd things

So I called for directions yesterday after noticing on the urology website that there was mention of the dept having moved. Apparently I had the wrong number, because I got directions from a very nice lady who assured me that in fact we wanted to come into the hospital, not go to another building, and? She was wrong. So we missed the appointment altogether. Q had been in his car seat off and on for hours by then, traffic being what it is when trying to make it to a four pm appointment, and he had just plain had it.

But we weren't done, oh no. I reached the pediatrician's office and, since we had to drive past it anyway, just went in. Yesterday Q's diapers were drier than normal and something like urea, but not like urea, was present. I showed the diapers to the nice doc (not our usual) and he didn't know what to say. Q has had a fine little rash over his trunk and a bit on his fat little bum yesterday, but it was of course gone when the doc looked. Otherwise, there was no redness, which there would be if there were an infection (UTI). Q's temperature was just 99. There was less discharge last night (of whatever it was) and hopefully it will be gone this morning with no further effects. Meanwhile, the urology appointment has been rescheduled to October 24 and I have a urine collection kit in case it's still there.

Last week I went to pick up the van from having it's Service Engine Soon light rechecked (it had been in the previous week for broken parts, etc.). As I was leaving, the nice man (in his 60's) at the counter mentioned that he was a single parent (for his grandson) and boy, it's hard work. "It sure is," said I. I mentioned that I'm doing the same, with five. He said that dating sure is hard. Not that there's much time for it. But people mostly have enough to deal with without taking on anyone else's kids, he sure doesn't want to worry about someone else's kids, especially having already raised four. And then, to me: "I mean, let's be honest: nobody wants you... with five kids."

Wow. So is it just me or is that weird? I can make up my own negative internal dialogue, thanks, without any help from strangers. I think part of my being so startled at his comment is that I am so not in that mode. I can't imagine dating. I can imagine wanting to--I liked being married. A lot. But one doesn't just replace a beloved spouse, especially with young kids in the picture, especially with issues like Q's. Still shaking my head.

I've been up for hours already, turning things over in my head, praying for folks I know going through some really tough stuff, praying for the nice people at my attorney's office, praying for some pregnant mamas. Off to the shower before rushing about for the rest of the day.

Hugs to you and your families. I so miss that sacred space of hearth and home and spouse's embrace... Tomorrow is another court date--as always, prayers for cool heads, clear thoughts, the wisdom of Solomon, are all appreciated.

Peace.

Another update

Today Q had his appointment with the geneticist. What a nice bunch of people they have there.

Oodles of forms, hours of family history, questions and answers, and in the end, the working diagnosis is lissencephaly--as originally explained by the neurologist in May. However, the geneticist suspects that Q is having polymicrogyria. In order to figure it out, she's sending his MRI off to her friend, the "world expert" (as she put it) in this. I think he's a neuro-radiologist and his opinion is so much in demand that it will be a few months before we hear back from him. But that's okay, because the bloodwork will take about that long to come back. Meanwhile, if anything should move along more quickly than expected, I will hear from them right away.

(I am feeling that same sensation of being grabbed by the nape of the neck for battering-ram duty. I do not like it. I had nearly forgotten how it felt.)

The geneticist also noted that she thinks it important that the neuro-radiologist address the issue of Q perhaps having had some white and gray matter reversed--each having ended up where the other was supposed to have been. This, apparently, is what indicated to the nice neuro guy the vastly increased likelihood of Q developing seizures. Therefore, the rhythmic, repetitive motions which he sometimes has should be watched closely. If anything changes, Q should be seen and perhaps (probably) have another EEG. Also, the geneticist agrees with the PT that it would be a good thing to pursue a swallow study to see what exactly Q can handle orally, especially since he does seem to be having reflux, which goes right along with the profile of these condition(s).

After the poking and bloodwork of the day, I can only imagine that a swallow study involves irritating his gag reflex beyond what he can stand. . .

Of course, I feel a flickering peripheral suggestion of vomitous rage at all of this. Same old, same old. Someone's free will squandered vs. giving up anything I have, indeed, my life to fix this for Q. It makes me want to knock certain people to the ground, frankly. Repeatedly. Perhaps perpetually, until they can give some indication that they get it.

So. Thanks for the prayers. They're keeping us afloat. Q's third cold in as many weeks is getting better and I'll head off to bed to grab a little rest before he gets up all snuffly again. His next appointment is next week with urology--to address his communicating hydroceles.

Anyone find my big ol' box of boring yet? How about that magic wand?

'night. Give your beloveds extra hugs and kisses from me.

Ta da

Mystery solved, thanks to 2lilreds. Jenni--I'd love to have some of those penstemmons. What a luverly flower.

Thanks so much for your diligent search. Applause, applause!! (Wish I had something good to offer as a nice reward.)

A satisfying end to an exhausting day.

Ahhhh. . .

Mystery

Folks, we have a genuine mystery on our hands. I've looked at the pictures of "dragonshead" flowers online and they are something completely different from what's growing in the yard. These guys work just like snapdragons--the flowers "snap" open. But they are tall and skinny, the foliage lighter and slightly grayish green. The pink ones have some slight variation in their pinkness within the flower itself. The actual flower is approximately 1/4" across. In the pictures the stalks have grown so tall that they are sort of laying over. The plant will send up new shoots from the ground. They begin to bloom at about 2' tall, but reach 5' easily. The foliage is smooth, sleek, even. No fuzz at all as on snapdragons. The leaves are flat, not curling at the edges. The lavendar self-sows freely, but the pink seems to be recessive--we started five years ago with three pink plants and a lavendar and now only lavendar remain. The nursery where they were purchased didn't know what they were called, but did say that the pink does not produce seeds. They are perennial.

So. That's what I know about the "mini-snaps." Not much, eh? Any ideas? (Do you like the bee? We became friends, but he's shy.)

Lately, in pictures

From our hike a week ago.

See the little green huckleberries? We'll have to go back next week and see if the bears have left us any ripe ones. Yum.

Another shot of the lake from the trail.

Flowers in the yard. We don't know exactly what this is, but we call it a mini snapdragon because it functions with the same little "snapping" flower idea but the flowers themselves are teeny, though the stems can reach over five feet. It's also gorgeous in pink. Any ideas what it really is?

This would be the severely top-heavy clematis. It decided to bloom almost all at once this year.

The Butterfly bush (buddleia). It's very tall, the bees and butterflies love it but I can never snap one near it. Or if I do, they're always in a blur.

Q

I should be either folding laundry or sleeping, but I need to share.

My little guy has the softest cheeks in the world (with apologies to other mamas of wee babes). It's true. Soft. Smooth. So fat the sweet little peach fuzzy skin is taut. So fat that if he opens his mouth wide you can see the fatness hanging over his gums into his actual mouth. I've never felt the need to say this with any of the other kids, but I could just eat him up. Or at least nibble him 'til he's annoyed. Cheeks, fingers, stinky cheesy baby niblet toes (doesn't matter how often or with what I wash them). His belly is round and soft, squishy even when it's full. His legs are like overgrown sausages, adorable in their roly-poly-ness. Even his feet are fat, with the toes as sort of an afterthought, stuck onto the roundness. I love fat babies, this one best of all.

An update, then: Last week, Q's PT said that she's seeing a lot of "real progress." He was happy, babbling, engaged and responsive--more than he's ever been during his therapy sessions. He's gaining on the whole sitting thing. I went today and got him a little chair at Target. It's just like the one he uses at therapy, right down to the color.

Q has three sets of splints, two (one to wash, one to wear) for daytime use, one for nighttime. The night splints are rigid, seeming to me (paranoid mama) to resemble some sort of infant torture device. He seems unbothered by them, though we're still only working up to him wearing them for extended periods of time and he does wiggle marvelously well when I'm trying to get his hands and arms positioned correctly. I don't know why they seem menacing (to me). They're quite soft inside and they have little sections of ducky ribbon sewn on the straps. Maybe that's it. Maybe they seem like they're pretending to be cute when it's perfectly obvious that only a baby facing some serious issues would ever possibly need such contraptions.

I shall post pictures of all these things. I don't feel I could describe them adequately and to attempt to do so is more than my psyche can take just now.

I've been asked lately what Q does. The short answer is not much, for his age. He rolls accidentally--because he's top-heavy--from front to back, but not back to front. He doesn't wiggle much when left lying on a flat surface, though when he does, he seems to do it in spurts. He'll rotate and creep on his back during several days consecutively, then nothing for weeks. I think he's more mobile recently. He sometimes holds himself perfectly erect when seated or held, but often does not and will slump to the point that he has to be repositioned so he doesn't fall over or out of someone's arms. When placed on his belly, he does not reach his hands out to support himself. In fact, if one positions his hands for him to do so, he will nearly always pull them down to his sides. Sometimes his jerky, repetitive, "spastic" movements remind me pointedly of the descriptions of seizures. The ones he's "very likely" to develop. That part seriously freaks me out.

What he is very good at is being cute and engaging. To whit: he laughs and crows and gets his sisters laughing. When G talks to him, he often giggles and coos in reply. When we do bedtime prayers, he says "ngoo" after everything he's "prompted" to say as long as the person saying it pauses appropriately. He really does behave very interactively when it comes to vocalizing. He delights in exchanging sounds as in real conversation, and tones/moods are immediately reflected in his burbling. He sometimes gets things into his hands, but it's not clear if he means to or it's just a happy accident (to quote Bob Ross). His visual capabilities seem to be improving, but it's not clear to what extent. It seems like his eyes are functioning better together, though.

What I'm doing: When nursing, I pull the arm on the underside up to extend it fully over his head in order to stretch pectorals and latisimus dorsi. His PT thinks it's working. I do "This little piggy" while stretching and massaging each digit, hands and feet, with tickles on the "wee wee wee." I make his hands do the motions for patty-cake, The Itsy-bitsy Spider, and So Big. I also make his feet and legs do them, which he finds hilarious. All of this is about stretching and encouraging him to utilize what he has and be more aware of what he's got. I put his splints on and take them off, washing when appropriate. We're still doing the spinning thing, though not as often as I should be. I do lots of holding and carrying--the motion is good for him, helpful in vestibular and proprioceptive function. Of course, there's the usual toys, texture, colors, all sorts of good stimulus.

I can't think of anything else right now.

I must admit that this makes me tired. I love the little guy to bits just as he is and wouldn't trade him for the world. I just find myself stymied and exhausted by the drill, never mind trying to stay on top of something which doesn't even have a real label (whatever that would be worth, dubious value there). The funniest part, for contrast, is that I'm not dithering one bit over homeschooling subjects or curriculum or even whether or not it's the right thing for my kids--doing so seems silly now in light of Q's issues. Much that used to be life for me and mine seems silly in light of what we're living these days. Perhaps I will benefit from this experience via my continual boiling things down: if it can be simplified it should be and if it isn't useful, out it goes. Philosophy as well as tangible stuff. So if it really doesn't need fretting over, whatever it may be, I should maybe leave it in the hands of Someone who could actually do something about it. There's a thought.

I'll be back with pictures. For now, I'm off to catch some rest whilst the little ones snooze. Bless them. They sure are cute when they're asleep. ;o)

Peace.

Sadness

I've been reading a little this evening. . . Could someone tell me why there's so much depression floating around? I don't know, it seems like every time I turn around there's someone crying about nothing, or crying about everything, or crying because they can't remember when they last cried. Not me though, I just get teary at good songs, perfect moments with my kids, memories of you-know-who from you-know-when, and sometimes, chocolate. You heard me. At least I know why I'm teary, right?

Seriously. What is the matter with us? We're most of us thirty/forty-somethings, revelling in the confessed and visible bliss of parenting, some of us doing it solo, some not. Most of us wouldn't really change the actual circumstances of our lives for anything: we each love our spouse, kids, dog, etc. Sometimes one of us decides those people/pets are the problem and proceeds to change that--my mom refers to this as the "I hate myself so I'm leaving you" syndrome. Is that it? Are we all engaged in some level of self-hatred? Or has pop-culture seeped into even the most carefully guarded brains and nipped at our roots 'til we can't be satisfied with the beauty before us?

My vote (for at least one facet of the problem) is that we're living in a rapidly degrading environment (think zero entropy, look up the laws of thermodynamics--yes, I homeschool my kids, yes, we just talked about this last week, thank you M.), and as such, the available nutrients are seriously diminished. So you eat well. It's now more difficult than ever to get what you need out of a reasonable number of calories. Say you need CoQ10 (or one of the other supplements mentioned in the article)--got any grass fed bison in your back yard? No? Why not? Don't you know how important it is to ingest lots of CoQ10 to avoid heart problems? Did you know that CoQ10 can actually repair heart valves to the point that conventional prescriptions can be discarded and surgery be avoided? See my point? Don't feel bad if you don't, it's late, things are muddy in my brain...

Point being, we're suffering the effects of our surroundings. So if we are at such a disadvantage nutritionally, why wouldn't it show up in our brain chemistry? I take fish oil (and calcium--both known for their effect on brain chemistry), among other supplements. My kids do too. I notice a difference in my skin, my son's asthma and focus when we're all taking it regularly. Perhaps the collective ennui of my generation is based nutritionally, who knows. There are other reasons that spring to mind, but it's late, and I believe there was a certain TV show made just to address this. What was it? Oh yeah--Thirtysomething.

I believe, if you haven't seen it, the entire story could be summed up with, "I love my spouse and kids and pets, but... isn't there supposed to be something more?"

My opinion? No. There isn't. You make your great moments where you are or you don't have them at all. I don't believe the grass is greener on the other side of the fence no matter what you're trying to escape (obviously abuse and addiction are exempted). Erma Bombeck got it right: the grass is greener over the septic tank. Guess why.

Another oft-quoted apt saying: Wherever you go, there you are. My first thought in regard to this is that we (at large) would do well to take up meditation. The practice of sitting quietly with one's own self, waiting for the still, small voice is a discipline most of us shun. Someone is always needing something from the mamas of the world (certain papas too) and we are very, very good at placing ourselves and therefore, time spent seeking the face of God, dead last.

I find myself wondering how much of this malaise could be circumvented by consistently keeping a gratitude journal. I also find myself wondering how long it will take our silly society to get far enough over itself to admit that people who take antidepressants are not automatically marginalized as citizens. The facts certainly say otherwise: the bravery lies in admitting there's a problem and then doing something about it. That "something" varies from person to person, but one does not get points for suffering doggedly, perpetually, when help is within reach.

Well. Now I'm just rambling randomly. Alliteration alert! (Bad, bad pun. Smacking fingers...)

Please take this as you find it--the meandering thoughts of one tired mama who has had enough completely needless crap in the last thirteen months to suffice for a lifetime. If you are suffering (sobbing, even), please don't. Go see your doctor. Ask for thyroid and iron checks, a cholesterol panel. Speak honestly about what you really feel and think, then take his or her advice and follow through. Unless you've found a dolt--but you're smart, you'll know what you need to do and if you don't know, ask the people who love you most. They'd give anything to have you be okay and they will help you get where you need to go. Take meds if you need to, baths if you like 'em, walk or bike or kick soccer balls 'til you're sore. Exercise often corrects brain chemistry magnificently. Find people who need hugging and hug them. Extending empathy and compassion often enlarges even badly broken hearts. Do keep a gratitude journal, do write down all sorts of thoughts. Vent on paper and to friends. But do not mistake your internal, nameless pain for a personal failing.

Be well. Be at peace. Do not accept the mantel of stigma that has too long accompanied pervasive sadness in life. Again, be well. Be at peace. (And if you need further encouragement, read up on the neurobiology of depression. Would you tell a diabetic to go eat some doughnuts? No? Okay then.)

Breeeeeeathe. There you go.

Quick stop

Hi! (waving) We're still here. Q's been sick--he's sleeping right now, and not ON me for the first time in a couple of days. This is the part of motherhood that just sucks it out of a person. I am sooo grateful to have my folks, but they can only do so much, and we're all pretty wiped out right now.

I'm knee deep in school stuff. Trying to stay on top of planning and scheduling and phone calls and driving and piano lessons and... You get the idea. Q has splints--I'll be back to write about that. And the kids survived the first week of school, poor little ducks. They're feeling less "abused" now that they understand that their silly mama didn't intend for them to only do school two days a week--it's just the co-op that's meeting two days a week. We're still doing school full-time. Even better, they learned the other kids suffered the same misunderstanding. Whew! It's always nice to feel like you're not alone, isn't it?

Speaking of which: If you could remember my crew on the thirty-first... There will be much going on in a certain room. I'm praying once again for cool heads, clear words and thoughts all around, and that the very best thing happens for the kids. I will suck up whatever I must, but the children shouldn't have to experience any more crud than they already have. Thanks.

I've much to say and share but I really, really need to sleep.

Hugs and blessing to you and yours. Kiss your babies (and your honey too). Sweet dreams.

Pretties

See the little butterfly on the Pearly Everlasting? I took this just before dinner the other night. I love the hydrangeas in the background. The whole shot just breathes "meadow," doesn't it?

A rose by any other name is still hard to shoot when holding a wiggly baby. Do the petals not just beg to be stroked? Red velvet came to mind.

Latin on the lawn...

...or, the first day of school.


"Well, how did you get along?" Marilla wanted to know.

"Ask me that a month later and I may be able to tell you. I can't now. . . I don't know myself. . . I'm too near it. My thoughts feel as if they had been all stirred up until they were thick and muddy. The only thing I feel really sure of having accomplished today is that I taught Cliffie Wright that A is A. He never knew it before. Isn't it someting to have started a soul along a path that may end in Shakespeare and Paradise Lost?"

--Lucy Maud Montgomery, Anne of Avonlea

Gratitude

It has been a looong week. I don't know why this one seemed so much longer than any other. Perhaps I've spent more of it awake than usual (not that I'm sleeping in at some other timein my life). Perhaps the news from London was just the sort that stretches time and warps it enough to make it feel both huge and compressed all at once.

Since I'm feeling all grateful and warm about how blessed I am, I thought I'd post a few of my "good things"...

• A roof and beds for each of my punkins and me.
• Flowers in the yard.
• The world's cutest, smartest, and funniest children.
• Chocolate. Of course.
• Lots of fonts and colors to play with in Word. Had I known that there was a custom color option available, I would never have gotten around to writing anything here or anywhere else. Have you ever played with those colors? Maaan. Go do it, you'll see what I mean. It's downright addictive. The power! The variety! The spectrum!!
• Language. It provides me the ability to communicate my love for my precious offspring, my affection for chocolate, my (transient) despair and perpetual delight at the goings-on of life. Without it, I would not have a framework for discussing theology, David would not have had the tools with which to express his relationship with his Maker. Can you imagine not having the Psalms? Proverbs?
• Piano. Lessons for the kids, years of knowing how to play for myself. What an awesome way to unwind. I wish I could do it more.
• Chocolate. It needed to be said again.
• Cherries. We're at the end of the season, but boy, have they been awesome.
• PEGS. It's working here, though today was a bit of a wash--fevers and headaches kept us from accomplishing all we set out to.
• Lakeshore Learning Center's lesson plan book. I now own my fourth and love it as much as ever. I adore possessing handy tools, which this certainly is.
• A decent brain. It needs some training and some rest, but it does well, generally, for my purposes and I am profoundly grateful for that.
• Soccer balls and the muscles they help to grow as they're kicked back and forth between my kids and me. Exercise. Yessirree, where there's a will there's a way. (As an aside, have you ever noticed that youth sized soccer balls are astonishingly near the size of a, uh, human head? Talk about cathartic. I'll let you take care of the visuals there.)
• Q loves to be outside (just like his daddy did when he was a baby) and is so, so happy to talk to the trees when out. This has been especially handy when we were planting the aforementioned flowers. You'll see them if I can ever figure out flickr. Argh.
• Food. Enough. Good stuff. That looks nice. (That we care about how our food looks defines us as "rich"--ha. Very funny, though.)
• Therapy for Q. Good resources every time I turn around. Smart people who know their stuff and aren't threatened by my desire to be clued in. Awesome.

These are a few of my favorite things...la lala la, la lala la.....

Tonight I wish you restorative sleep, peace that passeth understanding, and security/excitement in love. Go hug your honey. (Then wash the sticky off--"Hands in the air!! Go to the bathroom sink. No, no, hands in the air 'til you wash! There you go. Good job." Sigh. You do remember that I have five kids? Am I excused for the mama reflex? Thanks. Mwaaaa.)

Sweet dreams.