TGIF

What a week. Q played in the pool two days--he'd have been happy to have spent two whole days in pools, but alas, one must eat, sleep, go to therapy. He's entertaining the grandparents now with a set of flashing, singing bongos, smacking them with both fists then squealing his approval at the noise, lights, and his ability to Make Something Happen.

On Tuesday, he was weighed and measured, pricked for his hematocrit. He's about the 25th percentile for weight, 50th for height, and quite nicely full of iron.

On Thursday, we went to the neurologist. This was the first visit back since beginning Clonazepam. The nice neuro man made Donald Duck noises at Q again--something which seems to always grab his attention and hold it. Q was smiley, playful, took steps when supported. The doc noted that this is especially important as he grows because the act of weight bearing increases the depth of his hip sockets, therefore decreasing potential hip dysplasia and hopefully ruling out surgeries. Well of course it does, but who would think about this with a typically developing kid? They get mobile, up on their feet, and nobody ever has to say, "Now's a good time to be thinking about weight bearing to encourage the proper development of bone density and depth of hip sockets." You ever had that conversation? No? Yeah, this is kiddo number five and I never had either. Odd, the things that pop up.

The neuro guy is also impressed that Q's seizures have been so "easily" addressed. So am I, really. The first med worked. Even with some increases, the dosing is still in the low end of the range, the side effects have been apparently zero, and he hasn't developed anything else more serious or intractable. All of these things bode very well for Q's prognosis. He could absolutely still go on to develop more or different seizures, but thus far, (deep breath) we're all pretty happy. Fingers crossed, eyes heavenward. I asked if he thought that given the ease of treatment, perhaps Q hadn't really been having seizures at all. No, he thinks Q really was. We're just fortunate to have a good fit with meds.

We talked about Q's Clonazepam dosing and decided to leave it alone for the time being. Sometimes he naps, sometimes he doesn't--still having a couple of startles as he's dropping off for naps, but he usually sleeps at least 7 hours at night, sometimes even 9. The dosing with this med doesn't make him sleepy, as one would expect for a side effect, rather it makes it so that he can sleep. He's still with one quarter tab in the morning, one half in the evening. As long as he isn't striving for a bedtime of one, two or three a.m. then getting up at six or four for the day, we'll leave it where it is. The doc has no problem raising the dose. It's a very small one. But as Q is likely to need some sort of help with this for, well, ever, he's thinking that it's best to wait until there's perhaps a clear need. The startles aren't harmful, just really annoying (scary for Q), and meds often become less useful over time for no good reason--perhaps simple individual tolerance occurs. So we'll reserve the higher doses for when the boy is again awake for most of two days. God help me.

Part of our discussion included the concern that the Clonazepam may be dropping Q's oral tone enough to lose him a smidge of mobility. I've been noticing that he has less tolerance for textures and thinner foods--as in, he seems to not be moving them into a good swallowing position as well as he once did. What to do? The g-tube thing came up again as he was reading other docs' notes from their visits with Q. He says that as long as Q continues to grow, has some fat on him (calipers could be used), and it's not taking say, 10 hours to feed him every day, there's really no need to be concerned with a g-tube. (Whoopee!!!) Since the width between percentages on the growth chart is typical also for his siblings, and we know that due to his brain anomalies Q is likely to not grow as much as the other kids, and he has round cheeks, fat fingers and feet (nothing on the tum, though), we're good. For now, anyway.

Also, as we began to wrap things up, the doc said, "Well, it's pretty clear that Q has a good quality of life. He's happy, responsive, engaged, he certainly has challenges in the area of motor planning and I'd recommend that he continue neuro developmental therapies for a long time, but he's making progress, he doesn't have chronic pain, and he has a beautiful smile. He's a happy kid."

For some reason, I seem to take this pretty personally--it makes me beam. Not that I can take any credit for his personality or anything. Hearing these kinds of things just makes me glad. With all the crap in the world, Q is happy. And other people, people who are perhaps not so tired or subjective in their opinions, they think so too.

As we were loading into the chair/stroller deally-bob, the nice neuro guy said solemnly (as only neuro guys can), "Well, Q, one thing I like for sure is... your dimples." I love it.

So. Today, then: Q got his boots. His foot orthotics are blue/green with some black--camouflage. Ha! This cracks me up no end. For the perfect finishing touch, the middle Velcro strap has a ribbon sewn on--white hibiscus flowers on a blue background. The boy will be so popular on the beach. Hanging ten, ridin' the waves, with his Hawaiian shirt on his boots. I have no idea why I find this so funny. Kinda like the little ducky bib he has--it reads: I'm special. This makes me laugh. Of course he's special! And yes, he's "special" too. Then that part makes me all weepy and tired. Welcome to my short little turn on the crazy roller coaster called Motherhood. This response is predictable, every time I see the bib, there I go again: chuckle, laugh, chortle, cry, weep, sob. Makes me wonder why I haven't tossed it yet.

But I digress. After the boy got those feet in those boots and they got their last trim so they fit just perfectly (boots, not feet), he got into a stander! And we got to bring it home! It's from the loaner program and it has monkeys on it and he cried when I took him out. The same way he cried when I took him out of the pool and life jacket on Wednesday. The same way he cried when Grandma set the drums down a few minutes ago and he couldn't reach them anymore. It's safe to say that he's excited.

I was looking at paint chips this afternoon--gotta finish that exterior trim and the garage doors. I love Ralph Lauren colors. Somehow they just seem richer, more saturated. I saw the color Mt. Rainier. About four years ago, I painted a certain someone's study a light blue. It was something Lake. I can't remember the rest of the name, but he thought it looked like a baby's room (insert sad face here). I'd been trying to surprise him with something that I hoped would look like water because the room he was taking as his study was out in the garage, had no heat or A/C, and was seriously lacking in charm. I picked the blue out of the surface of his desk--mottled blue and grays, and matched the gray Mt. Rainier to the desk as well, planning to paint things on his wall. You know, sayings about fatherhood, what a great husband he was, certain, um, verses from the Song of Solomon. I didn't get it done. We moved into the house, had all of creation over for the weekend of graduation, had surgery, Tahiti, and he began his internship. Boom, boom, boom. As he was working those hideous hours, surprising him by painting sweet sayings on his wall fell down the list of priorities. We were instead spending every waking moment together, doing family things, fighting the sucking drain of his wretched schedule. Anyway, seeing the color brought back memories. I wonder if color is as powerful as scents in laying down and recalling memory? Heard this awhile back while flipping channels and nursing the now sleeping Q: Embrace the truth, whatever it is. Love the memories, even if they're painful. --Unknown

Have you ever been typing away and all of a sudden you realize your eyes are closed and your fingers have just kept going? And that somehow, they all slipped sideways one key and nothing you've typed makes any sense? (Delete key........)

I'm going to bed.

Squeeze your beloveds extra tight (from me). 'night.

FAQs

It turns out I don't do memes or get to know you lists or quizzes or really anything remotely fun, like answer email. Instead, I'm doing this. Perhaps it will put to rest those pressing questions that keep coming up.

How many children do you have?
Five.

Are those all yours?
Yes. (No. I pick up extra children on my way out to run errands just to make sure that I'm properly challenged while trying to accomplish something.)

Do they all have the same father?
Yes, they all have the same father. What's wrong with you?

What's wrong with him? (Q)
Nothing. Yes, he's sleepy (but that's not why his head is drooping--he's filtering stimulus), no he can't sit up, yes he is the cutest baby ever.

No. I mean, what are his issues?
(Grrrr) Got an hour or four? The invaginations on the surface of his brain should be big squiggles, like we're all used to seeing in a normal brain. Q's squiggles are tiny, not deep waves. This indicates that as the neurons were migrating, essentially up his brain stem, to make the brain, something happened to mess up the building of one wave upon the previous wave. Therefore the subsequent waves didn't make it as far as they might have. In short, he doesn't have as many neurons as he "should" and therefore just has less in the way of raw material. (At this point people usually begin to glaze over a little.) Doesn't he have a lovely smile?

Wow. That must be hard. Isn't that hard?
To quote a nice friend: Whatever, whatever, whatever. He's beautiful and thoroughly loved. Besides, nothing here seems to be imminently life-threatening, for goodness sakes, nor is anyone here having to think about turning off life support. There's a gradient to the awfulness one could be facing. Q is happy and growing and learning. And all of us are blessed.

How old is he? (Q)
Not old enough to know better, but old enough to get away with it.

How is Q doing?
Very well. Everyone says so--therapists, neuro people, geneticist. He's engaged, happy, cute, burbley. Everyone who gets to have a little time with him comes away smiling--he smiles for people he recognizes as friends, new or old. If he likes you, and he probably will, you'll come away feeling like the sun kissed you.

How many days a week does Q have therapy?
Three to five, depending.

What kinds of things is Q doing in therapy?
Right now he's working on sitting, holding himself up on all fours, rolling over, holding on to toys, social cueing, playing games, communicating using switch devices. Head control is a biggie. He's gotten better and better with having a strong tummy, and he's almost able to pull a cloth off his face to play peek-a-boo. Both of those were big goals set six months ago or more. Happy dance!

What do you do with the other kids while Q is in therapy?
They're with me about 99.9% of the time. While we wait, we're usually reading aloud, or doing spelling or math. Sometimes we just talk or play games.

Do you homeschool?
Why, yes we do! (How did you know? Was it the shoes?)

I could never do that (homeschool). Isn't it hard?
It works for us.

What about socialization?
Anybody want some bean dip?

Where do you get your curriculum?
I take many of the suggestions given in The Well-Trained Mind, adjusting as needed to suit each kid.

When are you going to write a book?
I'll sign my book deal as soon as I can pull myself away from General Hospital and my endless supply of bon-bons.

What color are your eyes?
Green. Wait. What?

Where do you live?
Right here, silly.

Are you available?
For what?

Can we meet?
No. You scare me.

Any thoughts on dating?
For myself or in general? For me: Bwahaha. (knee-slapping hysterical laughter) In general: I'm sure it's a lovely theory, as far as it goes.

Why no pictures lately?
The camera seems to have gone toes up. I'm very sad about this. Pray the computer doesn't do the same--or wherever you are, you'll hear me shrieking.

What do you want to be when you grow up?
A painter. Or writer. Or sybarite. How 'bout all three?

Where do you shop?
I don't. I try never to go anywhere that requires spending money, hauling all the kids out to do something they take turns hating, or spending money.

Where would you like to shop?
Heh. Okay, if I could, I would hit Old Navy and The Children's Place clearance racks more than once or twice a year. Of course, there are plenty of really great stores out there--Talbot's for Kids, Gap, Target, L.L. Bean, Hanna Andersson, yadda yadda. I would send my friend out to Goodwill for the kids--she always finds lovely brands, in great shape, for not much moolah.

What's next for you?
Maybe I can get some sleep? Seriously, I don't envision things changing (much) for several years, at least: school, meds, school, therapy, play, field trips, school, meds, doctor visits, Q equipment, school. And laundry, of course.

General observation based on FAQs:
People don't have enough to do. Really. (But thanks for caring anyway--that part I find very touching. It's the nosy parts that throw me.)

Ha.

Oh yeah. I can finally breathe again. Here, I'll share. She had a listing on eBay for a pack of Pokemon cards that her kids sneaked into the grocery cart and I nearly wet my pants laughing over that. This is pretty durned funny too.

Remember, you can laugh or cry. Go with laughter. It's better for the abs.

poetry

Wow.

Ha

As someone once said, you can either laugh or cry. Might as well laugh.

(Hat tip to Julie for the link.)

C'est Bon

Earlier this evening, I was flipping channels as Q was nursing and drifting off. There's really almost nothing worth seeing on TV. Really. But wait! What's this? A travelogue on... French Polynesia!! There are the tikis, the temples, the banana trees, the Gauguin museum, the poisson cru.

A certain someone surprised me with a trip to Tahiti for our tenth anniversary. Surprise, indeed. I was so shocked I never did figure out what to say. There were sweet declarations, expressions of gratitude, symbolism galore. He was graduating from med school that weekend and he tied into his amazing gift a thank you for "sticking it out" with him. Our whole life together had been school, I guess. I hadn't thought much about it--it was just really all about us, our family, not about struggles or barriers. Everyone has those, but not everyone has what we had. Anyway, I was just stunned. It was so... huge, really. I had no idea the lengths he'd gone to in arranging all this.

Almost right after his graduation, I had my knee scoped, a lateral release, lots of meds and therapy contraptions. He, meanwhile, packed up most of our stuff for a two day drive to my folks' so they could keep the kids while we went off and made merry. Friends and family knew all about this--he'd had to tell them so he could get babysitting lined up. Fortunately, our passports were current, but I still don't know how he managed to pull it all off. Miraculous. No really--I was practically an invalid, he had four kids to haul, plus all our stuff, plus the meds and ice and everything for my silly knee, plus all the vacation-in-the-tropics equipment. And two days in the car.

I'm afraid I was rather too thumped with meds to have been much of a traveling companion, poor guy. I think I embarrassed him to death by asking our guide the meaning of "vahine." It was printed on my new tank top and I was taking narcotics and my language deciphering skills were temporarily useless. (Look it up for yourself. I'm still blushing at the apparent discomfort I caused him.) Still, it was amazing. And the whole time, through my first experiences snorkeling, trying to actually converse in French (my sixth grade French is horrid), and many other firsts--temple ruins, new camera, watching cavorting schools of tuna from the air--the whole time, I was thinking: How did this happen? What did I ever do to deserve this? Or this man? Perhaps now, three years later, I'm finally almost over having been struck dumb by the magnitude of his effort and his tenderness in provision for me throughout the trip.

Poisson cru, I really should say, is raw fish. Plus some other things, thank goodness. It's done a little differently by each cook, but the idea is this: take some cucumber, tomato, carrot, a little sweet onion. Grate the carrot, chop the rest sort of uniformly. Combine with lime juice, coconut milk, and chopped raw fish. The fish should be fresh, just caught. Salt to taste.

I had three bites. We were guests in a home and the dish had been prepared especially for us and I'd been really curious since reading about it in the travel guides and I'm not so good at saying no and I didn't want to offend our hosts... Ew. I mean, it tasted fine. Actually, it was really good, but it was raw fish. Gak! When we went to a second island, our hostess there made us a vegetarian version with steamed eggplant. I've made it a few times since and never had leftovers.

Since we're on the subject of food, poi is so good--papaya or mango baked with a little taro root (or arrowroot or cornstarch) and served warm, with coconut milk. It's good made with peaches, too. Then there's the ubiquitous long, golden sticks of French bread. Considered a staple, it's subsidized by the government, delivered fresh even to little mini-marts every morning, carried home in bicycle baskets or backpacks. The brie is awesome, but then it would have to be, wouldn't it? The Yoplait is just plain ol' yogurt, fruit, sugar. No xanthan gum, etc. Pastries are cool--all the French influence. I had a caramelized pear something at the big downtown market in Pape'ete. I can still taste it, feel the tart/sweet/creamy coolness on my tongue. Somewhere, there's a funny picture of my moment of hedonism.

Our second hostess told us about how her family had been so poor when she was a child, during WW II, that often all they had for breakfast was a wedge of a massive papaya, piled high with freshly ground coconut meat, and drizzled liberally with the juice of a limon vert (green lemon). They looked like Key limes to me--smallish, round. I thought to myself how ironic it was that she remembered poverty when eating this breakfast when I felt that I could eat the same thing every day for the rest of my life--and I don't even like papaya.

There was a rainbow over the bay as we finished our meal that day and went on to feed baguettes to the beautiful fish off the tiny dock. He caught that rainbow on the compact flash card. He'd also shot fantastic pictures of local traditional canoe teams training for a race, then fishing boats in dock at sunset, and enormous waves forming over the reefs, the water frothing ahead of an incoming storm. He captured the blue, blue, blue bays, surfers on black sand, even underwater shots of the flirting fish. Those pictures are unreal, as if they possess a little magic in them.

Can you imagine getting to snorkel for the very first time ever and you're off a little French Polynesian island? I was treading water in my fins, maneuvering unfamiliar equipment, and he was tickling me. I kept giggling, snorting water, and having to clear the whole thing and start over. It was a blast.

A little gift of serendipity--to run across the travelogue, to see those sights and relive some of the cache of sweet memories while my babe nursed himself to sleep. C'est bon, indeed.

So

For about a week now, mysterious little deliveries have been arriving here. Usually with no name attached, so I don't even know how to thank you properly. Let me say this instead, then: Thank you for being a part of "God's sufficiency" as one lovely person put it. Thank you for reaching out and gifting us with your thoughts, prayers, and those packages. Honestly, I'm just floored.


To say that my punkins and I are stretched thin financially would be a whopping understatement. It is something I strive to leave out of their daily experience in part because we are so rich in the really important ways, in part because I wish them to have something else besides worry and lack as the driving definition of their childhoods--kids tend to obsess over things they cannot control.


That you would go out of your way to provide something for my children has me just in awe. I can finally read the notes without bawling. Okay, without bawling every time.


Luke 11:9-13 comes to mind.

Wow. Just... wow.


Thank you.

Splat

So much for church. Q got up at four this morning. He was sleepy, nursing, eyes shut, but jumpy. Startling, again. Then, after briefly falling asleep, he was just sad. It's been a long morning already. God help us, I don't think we're done with meds adjustments.

He's on the floor under his Baby Einstein lights and music toy, talking to it, banging on it to make it play. At least he's happy now, right?

Book jacket

John Eldredge believes what really is in the heart of men has been badly missed. "When all is said and done, I think most men believe God put them on the earth to be a good boy," writes Eldredge in Wild at Heart. "The problem with men, we are told, is that they don't know how to keep their promises, be spiritual leaders, talk to their wives, or raise their children. But if they will try really hard, they can reach the lofty summit of becoming... a nice guy. That's what we hold up as models of Christian maturity: Really Nice Guys."

Now in all your boyhood dreams growing up, did you ever dream of becoming a nice guy? Ladies, was the Prince of your dreams dashing... or merely nice? Eldredge believes that this dedication to niceness is the reason there are so many tired and lonely women, so many fatherless children, and so few men around. He writes, "We've taken away the dreams of a man's heart and told him to play the man. As C.S. Lewis said, "We castrate the gelding and bid him be fruitful.'"

Deep in his heart, every man longs for a battle to fight, an adventure to live, and a beauty to rescue. That is how he bears the image of God; that is what God made him to be.
--overleaf from Wild at Heart, by John Eldredge

Ahhh...

Last week Q had the sniffles. At about the same time, I was noticing that again he was startling when laid on his back, startling at nap times. Then he began to startle as he was nursing in the evening, at what would ordinarily be bedtime. He was more easily awakened, sleeping less, which in turn makes him more sensitive to noise in general and just plain unable to handle surprise of any kind. His naps shrunk, sometimes to nothing. He started staying up 'til one, then two, then getting up at six, then staying up 'til three .

Monday morning, Q's luverly OT was busy with a class, so thankfully we didn't have to get up and try to be bright on four hours of sleep. That morning I called the neuro office. The neuro guy is out for the week, but his on call person recommended that I double the dose of Clonazepam. Yeah. So that's what I did, all the while hoping, praying that it would work. All the while feeling like I'm poisoning my poor, defenseless baby.

It worked.

He's been more sleepy, even during the day. But he's not catatonic, hallelujah. He still wakes up to nurse a couple of times during the night, so the new dose hasn't even thumped him that hard. He's still startling at nap times, so we'll see if he ends up with a higher dose for the morning as well.

Having now lived a couple of my worst fears, and survived, thank you very much, nothing is so capable of flattening me as my babies' vulnerabilities. Yesterday we had a picnic with friends and while the boys were chasing each other like motivated stumbly puppies, two of them hit the ground, hard. When the first hit, all the mamas gasped at the force. It sounded like he'd splatted his head on the edge of the cement slab. Thankfully, it was just all his gangly boy limbs slamming into the dirt next to the concrete. His head didn't even make contact. Later, his brother, running in almost the same place, skidded on the dirt and gravel as he tried to stop, and ended up with a 3' x 4' abrasion just above his ankle. Again, we'd thought it would be worse. Still, we all had to breathe deeply and slurp some water before we could come off the proverbial ceiling. Waaay too much adrenaline for a nice day out by a lake. We were all a little stunned and shaky--and these aren't even my kids, though sometimes it feels like they are. Hee. It's ever so much worse when it's one's offspring, isn't it? You can practically feel your life expectancy shrinking as the whole scene unfolds, slo-mo.

So, yeah. Q's meds are working again. He's sleeping again. And I don't feel like a bad mommy for giving them to him.

School's on here. Wheee!!! We're easing back in--they're not all that excited about getting in their quality time with math. Heh. They'd much rather be reading or playing fairy or checking the chickens for eggs. Yesterday, G spotted three red-headed woodpeckers in the front yard, all at once. Three!

Speaking of G, I have to share a kid funny: A few weeks ago, he'd been in the living room trying to tell the girls a joke. It was way over their heads, so he made it even worse by applying pre-teen boy logic to it, twisting some of the words up, stirring in some Spoonerisms. Just for fun. When they were clearly more puzzled than ever, he whirled himself around, headed into the kitchen, fairly skipping with glee, and, hopping up and down, exclaimed, "Ahh... Delicious irony!"

I ducked my head under the table so I wouldn't laugh, you know, in his face. The girls are still pretty much clueless about the whole thing. Maaan. This stuff is my favorite part.

A couple of weeks ago, I had the little girls with me while the oldest two were in piano lessons. I was sitting in the passenger seat of the van, S in the driver's seat, K at my elbow, standing in the open door. Q was playing with toys in his carseat so I could do some grammar review with the girls. We were going over pronouns: my, mine, our, ours. We said the list several times together and then were quiet while K was writing the words on her pronoun list. A second passed and I heard this little voice say "ours". I, in my sleepy haze, turned to S to tell her what a good job she'd done when I realized that it hadn't been her voice. I was blinking, trying to figure out what had just happened. Surely not... "S, did you say 'ours'?" She's coloring, and doesn't even look up. "No, mama, that was Q."

WHAT???

It was. It was. It was!!!

In the last couple of weeks, he's started "giving kisses." He makes smacky noises with his lips--a huge skill. He gets very excited and giggly when I hear and I ask him if he wants kisses. When being nuzzled by a certain auntie, he starts kicking like mad until he can get that motor planning thing organized enough to burst out with -- kisses! And then he's so pleased with himself. He gets cranky if Grandpa ends their time at the piano too soon. He gets wound up if anyone mentions b-a-t-h. A couple of times, he's responded the same way to the word w-a-t-e-r. So yes, we spell those words now. Funny, isn't it? He's part fish, just like his sibs and his daddy.

It's so sweet to be able to just marinate happily in the good stuff, ya know? It's much easier to do so when one's had some serious sleep, she notes wryly. Even with the chaotic, smashed to smithereens broken parts, life is good here. I am blessed.

Off to do groceries, library, pharmacy.

Quote

Few men during their lifetime come anywhere near exhausting the resources dwelling within them. There are deep wells of strength that are never used. -- Richard E. Byrd

Breathe

Q is lying in his bed. Awake. It's so very late for such a little guy to be up! He's had his medicine that should make him unable to resist sleep! He hit the ground running (so to speak) at 6 this morning! His nap was at a reasonable time!

I am so. tired. Have you ever been so tired that you were light sensitive? And found yourself squinting against the sun, vampire-like? And could feel your brain demanding new working conditions or else? I think my eyeballs will soon flop out of my head and run off as self-defense against any further abuse of this type.

Also? I'm nauseous. I can't string together sentences with the proper words, finding myself using any old word, as long as it has the proper prefix. As in: What an interminable thing to do. When E tried to poke K with a stick, narrowly missing K's eye, I wanted to say, "What an inappropriate thing to do!" But I couldn't think of anything other than "interminable" so instead of making a speech, I just "tomato staked" E for the next several hours instead. It worked out. Perhaps she felt it was interminable? Heh.

It's almost midnight now. Surely he would have fallen asleep by now? Let's pray, while I sneak a peek...

Nope. He's playing with his face, feeling his nose with great interest.

Well, since I'm up I can better appreciate the lighting effect on the glitter that S tracked about today, unwittingly. She leaned over Q and dropped quite a quantity over him, too. He was taken aback. Heck, I'm taken aback and I'm not covered in it like they were. We vacuumed and wiped and brushed and dusted, but you know glitter, always wanting to stick close by! Gotta love that static!! (Ignore the note of hysteria. My sense of humor is in a rapid decline.) By morning little gold flecks should be showing up in Q's diaper. Why not, it's everywhere else.

Okay. So I'm going to go reason with that littlest one and see if perhaps I can entice him into sleep with offers of, what, 6 hours straight of nursing? I bet he'll take it.

Aiggghhhhh...

Another Quote

Only believe half of what you see, none of what you hear.

--a Psych teacher/researcher

Quote for the day

A woman with a sense of humour is never vain.

--Dean, in Emily Climbs by L.M. Montgomery

____________________

Happy Birthday, Daniel. What a sweet, sweet guy.

Misc.

Alright, homeschool people, how's your 07-08 planning coming? I'm nearly done, save for the weird HST complications. The tech support staff is downright awesome, but for some strange reason, the updated version is coming up as a read-only file. Not useful for creating lesson plans/schedules.

Folks have asked if they might be helpful regarding curriculum, so (shyly) I've decided to link my Amazon wish list. Here 'tis. Other than what's there, I've been looking at science games and frog dissection stuff. Any thoughts?

Q's PT told me this morning that she wrote into his chair Rx request/justification letter that he needs the rain hood and enclosure because CP renders him less able to regulate body temp, which is very true. So perhaps that in itself will be the miracle--it'll be approved and I won't have to worry about funding it.

The boot casting went very well. Q has the same sweet, patient personality that all the kids do--as long as they're not pushed too far. I get compliments at the dentist, the hair salon, the library, about how quiet, engaged, and polite the kids are. Most of the time. Anyway, he sat happily through the whole process, had some reflux, but mostly burbled and crowed his way through it all--even the warm gooey stuff all over his legs and the subsequent cutting off of the casts. The casting OT and the PT were very complimentary about both how easy he was and how attentive I am to his sibs, who are almost always with us. The therapy unit gets families who come in with trailing sibs and then don't pay any attention to the little darlings as they enjoy the therapy rooms (which look like big playrooms): swing from the chandeliers, run amok amidst the swings, or nearly trip kids in walkers. I would be completely horrified if one of mine tried that. Which means that next week, one of them will. Because no basking in a good mommy moment is complete without a subsequent setting down. Heh.

The process wore him out--we came home, nursed, crashed. Sometimes, when I'm tucking him in, I have a hard time not nibbling on his fat little cheeks or going back for one more squeeze or snuggle, which would surely wake him up. Have you heard that saying, "To have a child is to accept that your heart will forever walk around outside your body"?

Yup. Times five.

Happy Friday.

Q news

'Twould seem that I'm writing a whole bunch today. This probably means that I'll just be invisible here for the rest of the month, since that's how it seems to work. It's nice to have a whole day at home, with no appointments. SpEd is off until the beginning of September, so our Thursdays are free. Whee.

Q will have his feet cast for boots tomorrow during his regular PT appointment. I missed the appointment I had scheduled for him on Tuesday. After piano lessons, I was feeding him some Gerber concoction when my cell phone rang. It was his PT, wondering if we were on our way to the casting appointment. I just sat there. It took a few seconds for the circumstances to register. We'd waited nearly three months for this appointment and I'd blown it. His PT was shocked and dismayed, I just sat and bawled after I hung up. One of those "bad mommy" moments.


I have nightmares about driving a semi full of the kids and their stuff pell-mell to wherever we're supposed to be and not quite making the corner, or ending up on a bridge which I suddenly realize has no middle. Most of the time I manage to hit the brakes and handle the steering just fine, even drive through grass and get back on my dreamtime freeway, but I guess it's instructive, in a Freudian way: dropping the ball, or the basket, or the big red bag full of Q's supplies--missing a detail and therefore an opportunity, these are the things that make me craziest. So it rarely, very rarely, happens.


I finally feel like I've almost found my feet. Every new baby has an introductory period in which everything "normal" goes on it's head and shaves years off a parent's life. Q's has been longer than most babies would have been, and flying solo has made the learning curve steeper (like it needed help). Now, packing up Q and his accessories is becoming less daunting, the big kids are more help all the time and more and more intrinsically motivated. I've got schedules galore, making sure that I remind myself about everything in at least duplicate. That's why it was so odd that I'd missed the appointment--I'd looked at the calendar just that morning and seen it there. Brain fade, I guess. Thankfully, the casting folks are very kind and probably won't hold a grudge.


Last week, Q was measured for his new chair. His will be the size 1, with a silver frame, with black and green in the seat. The cargo basket will probably be approved as a medical necessity, as will the tray, but the rain guard and hood aren't likely to be. There's no question that he needs it, though, so I've got a couple of months for a miracle to work itself out: the new system was ordered and will be here in about eight weeks.


I'm excited, as it's sure to be more user friendly than the loaner we've had. Hopefully, it won't be as heavy. The kids and I do well with "team lifts" in and out of the back of the van, but it's awkward to wrangle the frame and wheels by oneself. And I'm a little sad, I guess. It's hard for me to think about Q maybe not walking ever without tearing up... Yeah.


So it's been a lovely day. We've just sort of lolled about. I did some laundry, some watering, some dishes and picking up. We filled the little pool, the kids "washed" the van. K and S made mud pies, G and E decided eggs in browned butter were in order for lunch so they took that on. (I know. They're weird like that. I like 'em. The kids, not the eggs. The kids need more practice in that department.) They're all sprawled on the living room floor, wrapped in towels and blankets, listening to The Sending of Dana-da. Q is asleep, hopefully for about another hour so I can get dinner started, move some laundry, help the kids remember to clean up the kitchen from their fun with eggs and butter (and tofu and spices and my oh my, aren't they adventurous).

I keep thinking there's something else I should be saying, but I can't think what. That's not a good feeling.

Oh well.

Here's hoping you have a restful or exciting, peaceful or thrilling first weekend of August. May you enjoy the company of your beloved, delight in the smiles of your punkins, and learn a little something about grace--even if it's just found in the welcome of smooth, clean sheets at the end of a day of striving.

Peace.

More lyrics

At the risk of sounding preachy (gag), this song has crawled into my head and won't leave me alone. Seems like it characterizes well the drama, trauma, and general paths of weirdness so many individuals in our generation are walking. Plus, with Michael W. Smith, how could one go wrong?

Off to feed the punkin. Have a lovely day. Mwaaa.

Missing Person

Another question in me
One for the powers that be
It's got me thrown
And so I put on my poker face
And try to figure it out
This undeniable doubt
A common occurrence
Feeling so out of place
Guarded and cynical now
Can't help but wondering how
My heart evolved into
The rock beating inside of me
So I reel such a stoic ordeal
Where's that feeling that I don't feel

There was a boy who had the faith to move a mountain
And like a child he would believe without a reason
Without a trace he disappeared into the void and
I've been searching for that missing person

Under a lavender moon
So many thoughts consume me
Who dimmed that glowing light
That once burned so bright in me
Is this a radical phase
A problematical age
That keeps me running
From all that I used to be
Is there a way to return
Is there a way to unlearn
That carnal knowledge
That's chipping away at my soul
Have I been gone too long
Will I ever find my way home

There was a boy who had the faith to move a mountain
And like a child he would believe without a reason
Without a trace he disappeared into the void and
I've been searching for that missing person
He used to want to try to walk the straight and narrow
He had a fire and he could feel it in the marrow
It's been a long time and I haven't seen him lately, though
I've been searching for that missing person

For that missing person
For that missing person
Oh oh, oh oh,

There was a boy who had the faith to move a mountain
And like a child he would believe without a reason
Without a trace he disappeared into the void and
I've been searching...
He used to want to try to walk the straight and narrow
He had a fire and he could feel it in the marrow
It's been a long time and I haven't seen him lately, though
I've been searching for that missing person
Oh, oh, oh, oh, oh

Where are you?
Where are you...

So...

I've been up looking at curriculum and feeling whiny. On Sunday, I put 70 SPF on everyone but me and we got in the pool. Q especially loved it. It was his first time in such a big "tub". We had a blast. And now. I've got the worst sunburn I've had since I was 14. It's ridiculous, but there it is. I could just cry. My back is burning, prickly, leathered. My shoulder has decided now would be the perfect time to revisit an old injury, this time with repetitive use as the excuse. Q's a heavy kid.

So anyway, I'm up, all excited about the upcoming school year, and thought I'd share. Anybody else a-twitter at the prospect of a "Grow a Frog" kit? How about a set of biology slides? Outlining? Chemistry games?

No?

Guess I'd better head to bed then. Here's a song that's been rattling around in my head:

How Could I Ask for More

There's nothing like the warmth of a summer afternoon
Waking to the sunlight, and being cradled by the moon
Catching fireflies at night
Building castles in the sand
Kissing Mama's face goodnight
Holding Daddy's hand
Thank you Lord, how could I ask for more

Running barefoot through the grass
A little hide and go seek
Being so in love, that you can hardly eat
Dancing in the dark, when there's no one else around
Being bundled 'neath the covers, watching snow Fall to the ground
Thank you Lord, how could I ask for more

So many things I thought would bring me happiness
Some dreams that are realities today
Such an irony the things that mean the most to me
Are the memories that I've made along the way
So if there's anything I've learned
From this journey I am on
Simple truths will keep you going
Simple love will keep you strong
Cause there are questions without answers
Flames that never die
Heartaches we go through are often blessings in disguise

So thank you Lord, oh thank you Lord
How could I ask for more


Have a good sleep and a blessed day, wherever you are, whatever you're doing.

Stuff

How are you these days? I've been busy and I feel a little out of touch with you all. (Smile, wink.)

The chickens are well, growing like they're on steroids. The garden is fluffy in spots, naked in others. Do deer eat the tops off tomato plants? I ask because we're missing the tops of about twenty tomato plants and, well, have you ever smelled a tomato plant? They smell icky. But perhaps the nightshade family is the equivalent of deer catnip. The bunnies still mow the lawn. They seem to be the offspring of last summer's crew; smaller, cuter, bouncier. Maybe they have ADHD or Asperger's. They look normal, for bunnies, but they're quite, eh, springy.

We planted a new horde of lovelies for my mom's birthday. There's red trim outside, so the kids and I decided to surprise her with a red theme. We went for coleus that's on the verge of psychedelic: ruffley, scalloped elephant ear leaves in red, purple, cream, yellow, green all stirred together like colors floating on water in a papermaker's studio, blurring and blending and sounding strange, but striking the perfect note in the end product. We put dahlia's in, using the purpley leaves of a copper red flower to settle the coleus down. Then a bazillion purple and red salvias to blend in the tri-color sage and we were set. It sounds just plain wrong, doesn't it? Sort of aggressive, for flowers and all. But it's nice. Brilliant.

My grandfather's failing. He's had Alzheimer's for years. The blessing for all of us has been that as the disease has stolen his personality, it's left behind someone who would never dream of behaving the way he sometimes has over the years. He, as always, is melted by the little girls snuggling up to him, by babies laying their heads on his shoulder, by someone who is willing to hold his hand 'til he falls asleep. He still laughs at jokes, even makes them himself when he can speak more than a word or two at a time. I'm sure that he dreams of Jesus coming to take him home, just as he has for years now. The difference is that now he shows himself vulnerable. He has no choice. As difficult as I'm sure it has been for him, it has been a gift for each of his children, for the grandchildren, and now the great-grands.

Still, it's the sort of thing that makes one want to weep, rage, shriek until there's nothing left to let out. He's had a good life, overall. He sometimes failed terribly to appreciate it, but it was good. This losing of him, any loss at all, is hard to take. I go back to the loss of grand-in-laws, how desperately sad I was at the loss of good people then, and I'd barely known them, a patriarch and his matriarch. They were charming and funny, stately and good. Thinking of it now leaves me hollow. I wish these five little ones could have known them. They met G when he was new, but both were gone before E was born.

I'm ready to have a loss-free zone.

So. How are you?