I will not die an unlived life.
I will not live in fear
of falling or catching fire.
I choose to inhabit my days,
to allow my living to open me,
to make me less afraid,
more accessible,
to loosen my heart
until it becomes a wing,
a torch, a promise.
I choose to risk my significance,
to live so that which came to me as seed
goes to the next as blossom,
and that which came to me as blossom,
goes on as fruit.
--Dawna Markova
I'm waiting for the kids (chortle). That never happens -- I'm usually running around getting stuff together and fixing the next meal for later and drawing up meds... I'll get back to that in a minute.
How are you? Are things alright where you live? Papers getting written? Toilets getting scrubbed? Paychecks comin' in? I'm humming "It is well..."
Q is "getting" the whole walking thing more and more. We've been swimming once or twice a week in addition to his other therapies and I think the boy is gaining muscle in his legs. Good muscle means more stamina, more stamina means more muscle built, and longer periods on his feet means that muscle memory has more time to become embedded so that next time he wants to go somewhere the organizing part of getting to an upright position isn't so tough, the remembering that the feet have to alternate is easier and he gets farther more quickly. Which is so rewarding that he wants to do more, more, more! I've been talking with Q's PT about a walker because the boy would like to do this for hours out of the day now and my back can't take it. His PT is concerned that we get into a walker at just the right time so that we don't cause major structural issues later. He admits to being conservative in this. I'm fine with being careful, but antsy because Q is and my back, as I mentioned, is complaining. Of course, having the walker is only part of the story -- did you happen to see Extreme Makeover: Home Edition last night? The kids watched. The house they knocked down for a four year old in a walker had the same issues we do here. The new house was ADA friendly throughout, including a specialized playroom, plenty of space to maneuver, a "wet room" as a bathroom, and an elevator. Wow.
We raked up every last giant maple leaf yesterday. Or rather, there was one still hanging in the tree. Since it looked like it had become wedged and would need a stiff gale -- or spring -- to bring it down, we're not going to worry too much about it. The leaves, beginning their new lives as dirt, all went to live on the garden, where we'd had the chickens penned for about the last year. I say "had" because the last one disappeared a couple of weeks ago, leaving only a small pile of feathers. We have a little envelope with $30in it from the neighbor lady whose untethered bird dog dragged one home in September. We've been debating whether or not to try again with a few chicks in the spring, to purchase two or three layers, or to just let it go. The neighborhood is full of untethered canines, large and small, and while there are laws against it, it's an unincorporated area and no one's too anxious to enforce leash niceties. Those Americanas are excellent layers, though. And the eggs were awesome. Maybe two or three would be just right in the chicken tractor. We'll see.
Overheard lately:
G, exiting the van and exclaiming to his sisters in a stage whisper (so as not to frighten the poor beast?), "Oh! Girls! Look quick! Diplopoda!!!"
E, stepping carefully, princess affect intact, carrying a paper bag complete with tea towel out to the playhouse in the dark, "Come, girls, let's have some supper."
K, being her usual articulate self and explaining her frustration, "You don't understand. When my sisters talk to me, they just overwhelm me."
S, using paper towels as diapers on her Baby Alive, "Mom? Why don't I have a real baby?"
Q, as we're doing bedtime stretches (not to be outdone by the bigger sibs), "Mmmmboobooboooooo..." (With his lips! Pursed and mobile!)
We've got another, this time probably the last, court date this week. May God have mercy on us all. There's so much to say and not much of it is useful, so I'll just be still. Prayers are very much appreciated, as always.
And in closing (the kids are almost ready to go), here are some excerpts from an email my dad sent last week, late on election night, from the remote site he's been working at for the last weeks, off and on. Reprinted with his consent.
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Well, now the hard work can get started. If Obama is to fulfill his hope of bringing hope to the rest of the country, he’s going to have a lot of hard decisions to make. They won’t always succeed in pointing the country in the direction he envisioned, to say nothing of the direction all America needs to have in mind. But I am glad he brings a message of hope. Agree or disagree, he accomplished a lot for a guy who grew up in his grandmother’s house because his parents couldn’t, or wouldn’t, care for him as they should have. I hope to use his story in a positive way on my own grandkids. I cry a lot of silent tears every time I look at little Quinn. .....
But Quinn can take your heart for quite a ride. Even if he can’t say a word, he can laugh all to way to the bottom of his toes and the top of his little head. ...we were [on a paved trail] ... enjoying the last days of bare ground before the snows (supposed to get 10 inches there tonight), when he started looking at us all like we were not quite OK, his mommy said. She caught on that he was noticing everyone had hats on, so she sat down in front of him (he’s in a stroller with restraints so he can’t fall out or tip over) and pulled her hat off. He nearly split his face open laughing so hard.
You might learn more about his condition by looking up blogs on PMG (polymicrogyria), which is the brain condition he was born with. The corpus callosum (that thing that connects the right and left hemispheres of the brain) did not develop, and his motor planning and execution are painfully difficult. He loves to knock my glasses off my face, and I gladly let him, as it is one of a few things he can plan and execute on his own. The very first time, he laughed when they came off, and laughed harder when I put them back on. Then he repeated it, with great pleasure. A connection was made with another person. I’m glad it was me.
I’m too tired to work anymore, but I thought of you. I’m listening to Dvorak’s Symphony No. 9 From the New World. It truly expresses in musical terms much of the hope that America means to much of the world. It was one of Dad’s all-time favorite classical works. I can still hear him humming or singing the Spiritual “Down de Road” which tune was incorporated into the symphony. The composer took with him a vision of hope from his visit here from Russia around the end of the 1800’s and put his ideas to music. Now I find it fitting that such hope may once again find expression right here at home. May God help our president-elect to rein in the temptations to corruption that will surely assail him, just as they have everyone who preceded him in that office. It is only the hand of God that can protect from such temptations, and woe to those who fall in their trap. “Those who fail to learn from the lessons of history are condemned to repeat them.” And “Power corrupts, and absolute power corrupts absolutely.” Pray for him, and for his worthy opponent who showed grace in defeat. And for our current president. May he yet humble himself at the foot of the Cross, where God waits to give him healing and encouragement, if he will accept it. He started out with good intentions, it seemed. So did Jimmy Carter. And look how he made the best of a humbling experience as he went on to serve his country as best he could, regardless of what people think of his policies. Let’s pray for W that he may find the peace that only God can provide, while he still has time to learn. Doesn’t the Bible say that Pride goes before a fall? Arrogance, expressed in large and small ways, always leads to the same sad results. And for a nation to allow arrogance to determine national policy, the results are uniformly fatal once the tipping point has been reached. That’s why God so vigorously warned his people through the prophets that their arrogance was about to kill them, literally. And sadly, it did.
___________
Pax.
As Senator McCain makes a gracious speech and Senator Obama prepares to appear in his new role, it strikes me that there are many families for whom the precious right we exercised today falls dead last in priority this evening, and rightfully so. This one, in particular, covets your prayers. May we bear up with and for them and all the families who unwillingly occupy the same horrible place. May we carry a little extra and cherish more dearly our civic rights and responsibilities while they cannot.
God be with you, Ben, and with your family. Our hearts are broken for you.
Edited to add -- Trying the link again: Caring Bridge, then enter website name "towne".
Q didn't sleep much last night and as a result I'm sort of racketing around in my head. I should be much farther down the path of my day, but it's hard to be organized about much of anything when one can't spell or focus or speak in complete sentences. You think I jest? I'm pretty sure that the dental and therapy people we saw today could attest to my version of events -- it's all in the eyes, folks, the bloodshot eyes. Oy.
Anyhoo, the kids are bigger and more able to help and things move on. I'll get the math tests graded over the weekend which I'd hoped to get to last night, and generally things shall improve. I'm planning that the boy's stuffy head will disappear like magic (poof) and that everyone else will just decide that a change of scene requires enormous relaxation of attitudes and spirits. And by the end of the weekend, our little jaunt toward the mountains will have refreshed us all. Starting... now.
I've been enjoying the comments on the previous post. Comfort and it's friend Gratitude are so important. Q's physical therapist spoke examples today of a sugar squash with bleu cheese, or a portabello mushroom, grilled, with onions and garlic and more bleu cheese. Yum-a-licious. Keep 'em coming, folks. We'll spin this into a gathering of good stuff and before we know it, things will improve all over. Sometimes the words themselves are huge, you know?
The great lesson is that the sacred is in the ordinary, that it is to be found in ones daily life, ...in ones own backyard.
-- Abraham Maslow
Guess why I'm up at this hour.
Yup. Little guy needed to burp and then was awake. After some patting and some off-gassing, he snuggled down in his chair and closed his eyes to ignore Thomas the Tank Engine. If I had tried to move him it would not have gone well, so I left him there and I think he's approaching the state of well and truly asleep now.
Let's talk, now and for a few days, about comfort. I've been thinking about what we do to self-soothe. As adults, thumb-sucking is out (for most of us) no matter how bad that 401K looks at any given moment. Booze is not a good choice -- it shrinks your brain and yes, I know it's a standard line but there's finally research to back it up. So what should we do about calming and comforting activities?
Well, there are the standard adult (ahem) activities. And then there are things we can choose to draw strength from, things that might under other circumstances be thought rather dull or too "usual" for real appreciation.
A few weeks ago I found in a box (more sorting) a favorite old silk nightie, the color of my eyes, a little, ordinary piece of cloth. But it's silk. And it has these little straps. And how often does one come across such a thing? It's sort of like finding money in a pocket -- only this is capital that represents happiness shared, something nice, a little space of decadence in an otherwise stridently spare time. I began wearing it to bed. I swear it has affected my dreams. Q mostly stays in his own bed on those nights, I don't know why (never look a gift horse...). I suspect the combination of something nice next to my skin and the quietness of the boy are what's letting me wake on those mornings feeling a smidge more buoyant, more like a grown-up who's about some thing of importance, and generally not at all like someone who checks her clothes for puke before leaving the house.
I thought about this as the market began it's cliff-diving regimen -- how such a small thing can soothe so nicely, if allowed. Then I wondered what else I might have in my power to elevate to such a position. The kids would benefit from feelings of the same -- they're not clueless about the stresses of the times, the fact that I breathe a little lighter as the gas prices fall, or count pennies in order to keep the ducks swimming, balls in the air, whatever metaphor you prefer.
Well, there's food. We're eating anyway. There's good stuff in the pantry -- which I reorganized and labeled and now it's so spiffy that we'll be the neighborhood center for disaster preparedness. But I digress. Since we have to do food to survive, one might as well make something a little bit more special, once in awhile at least, even if it's just soup. Homemade minestrone, for example. Or how about whipping up a lentil curry soup? What about tossing together slices of red bell peppers, yellow cherry tomatoes, a light dressing of balsamic vinegar, olive oil, Hawaiian Black sea salt, the bit of leftover feta and thinly sliced, sweet red onion? How about Delicata squash stuffed with amaranth (think polenta), pecans, shallots, and garlic? Mmm -- kale, shredded and seasoned, sauted til tender with a little smoky saltiness. Or is it salty smokiness? One might sprinkle Herbes de Provence on one's frozen pizza or butternut squash just after it comes out of the oven. There's always homemade chocolate pudding. What about just taking the time to slurp up a really great pear? Yum.
I guess the point is that even as we experience a slowing of the economy, we can take the time to really experience the simultaneous slowing of the family, the processes in which we all partake. Whether it's very good food, a formerly missing nightie, or evening schoolwork or instrument practice, we can glean a little soothing from right where we are. Having time for a little more interaction is a good thing -- especially if we take it just a little further and think how we might add to the soothing of the others in our everyday circle of influence.
Kinder words? Longer hugs? A full, goofy smile upon greeting them? Perhaps there's something you've been meaning to tell someone and you just haven't quite gotten around to it. Now's the time. Be the blessing.
I'm going to go see if I can yet convince the wee one to allow himself to be carried back to bed for a nice long sleep and try to bless my group with steel-cut oats with brown sugar and cream in the morning. (Add your ideas in the comment section below.)
XO
Links worth checking out:
Frontline. An interesting look at both candidates.
Snopes. Because, that's why.
Divided We Fail. A comparison of the candidates.
I'm not looking to get into any sort of debate, here or anywhere else. (wink) I do believe, however, that there's a shortage of real information as opposed to baloney. So get yourself all informed -- through a variety of sane and reliable resources, please -- and happy voting.
_________________________________________________
Re: court. We're back in on the twenty-second. I don't know what to say, really. There's technically nothing to tell about the previous date. The twenty-second looks to be what is perhaps the final date in the case as it stands.
Since we're here, let me just offer up some advice.
(Now approaching the three and a half year mark into the re-tooling of our family, I feel I can speak with some authority.)
Ahem.
A friend believes that sex is often the only thing that holds marriages together, through some of those darker times, and that if we were all to avail ourselves of the benefits of matrimony as we should be, we could jolly well allow it to carry us through to happier times. I think she's right. Spot on, as a matter of fact. And hey, since it seems that we all now have no actual money/assets/prospects and therefore no other way to entertain ourselves, go grab your honey's hand (or whatever) and find a room, already.
You can read the rest of this later. It's really not important enough to keep you from your mission. Trust me.
_________________________________________________
I've been having the strangest dreams lately. In fact, that's probably why I'm up tonight instead of having hit the proverbial hay as soon as Q went down. They've been getting so vivid as to be nearly unbearable. The first night, everything was threatened by some looming evil, plots were thick and it was a challenge to move quickly enough and keep our wits about us. The second night, I dreamed familiar dreams of family, intact, laughing, things fairly historically accurate, highlighted in the Technicolor of remembered bliss. The third, more familiar dreams of love and love lost, recurring nightmares which startled me awake even as I "knew" I had to get back to sleep for some hoped-for resolution. Last night it was back to us picnicking by a river, kids gamboling like little goats while all the grown-ups lolled and chatted, snuggling up into couples, followed with a fierce and breathless, then hilarious, game of tag going on between us all. But there was something dark lurking at the edges of the happy scene and I couldn't see it, no matter how quickly I turned. I had the oddest combination of total immersion in the joy of the moment -- family fun -- and horror at what was coming, though I couldn't quite figure out what that was.
Maybe tonight I'll read until I drop off so I don't have to linger over what will wake me this time...
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Q is having an interesting time these days. The neuro appointment resulted in increases in meds (stop me if I've told you this already). The Clonazepam has gone up to a whole 0.5mg ODT at bedtime and the Trileptal will increase in another week, though only by 0.5ml, thank goodness. I've been a little (silently) freaked out about all this since his drop in tone which brought on the feeding issues and made him seem so vacant came on with the meds, or so it has seemed to me. So far, the Clonazepam increase has done just enough -- we've not had a night of less than five hours sleep since we hit that dose, almost three weeks ago. He's not startling himself awake even as he's dropping off, which is such a blessing as to seem an outright miracle. The Trileptal increase will be only because he's gained weight and the dose hadn't been increased in nearly a year. Wow. But here's the best part: if we get all the way into the spring without any apparent seizure activity, we're going to have another EEG and take a look at weaning off the Trileptal.
Holy cow. I mean, if he needs the meds, he'll have them. But to not need them? How cool would that be?
I said a few weeks ago at a support group meeting for parents of children with special needs that I love pharmaceutical companies. It rather horrified a mom (a homeschooler of seven, as it happens) who was sitting across from me, though she managed to keep a fairly straight face. It was only later that I learned that she "just doesn't give her kids anything." Well, let's just think of this as hyperbole getting away from me, shall we? The thing is that I don't, as a rule, do much in the way of meds. I'm more likely to use herbal or homeopathic options first, and often forget that a headache or muscle strain in myself might easily be helped by a dose of ibuprofen. However. When one doesn't sleep for more than a few hours a night because one is up with one's very cute, very sweet, yet somehow unable to sleep without Big Meds little guy? Well, under such circumstances one's philosophy might well suffer whiplash.
Therapies are going well. We've had some good progress in the department of equipment. Well, I guess that depends on one's definition of progress. We're currently borrowing a Versaform bean bag that I shape into a feeding chair for Q, then suck the air out of in order to hold him in a properly supported position. It looks like it will work for feeding and plenty more -- I rolled him into it like a hot dog and we did a little ballroom dancing, just the two of us. It was pretty funny. It's only a few hundred dollars and therefore much more likely to be approved than an actual feeding chair. Now I'm thinking I'll have to take up yoga to keep up with this scenario, since the seat will work best on the floor or a regular height table.
Q's check-up revealed that he's at about 47% for height, 25th(ish) for weight, and still under 3% for head size. Since it's late, and dark, and it's just us chickens here, I'll admit that this arrangement freaks me out a little. If some kid ever feels the need to comment upon this ratio of head size to rest of him, I'm hoping and praying (and rehearsing) calm and reasonable responses. I mean really. Kids usually ask about stuff because they're curious, their information on the subject in question is fairly limited and they're open to what they're about to hear, as opposed to looking for some way to judge what they're about to hear by their own insecurities. I know this. But still, there's something about the notion of there ever being the equivalent of a playground bully for him that makes me wanna go into Hulk mode. Rowr.
Plus... How to put this? I leave these appointments wanting to call up and discuss the whole thing with someone uniquely positioned to really get all the technical details and then give a darn about them and the kid in question. And then I remember that it's not so much an option anymore. And that there's just no place to hide, no arm to curl up under when it all gets too big to contemplate.
Double rowr. (Clever of me to avoid swearing just now, don't you think?)
More on all of this to come as we go for further progress with equipment. And I'm still hoping to write a little about first grade, since it's so much fun. Oh there's plenty to say, but I have to go blow my nose now and get the kids out the door in the morning, which means I'll be needing to sleep at some point, dreams or no. One last thing before I hop in bed -- this music I first heard as part of a PBS campaign which they ran several years ago. It made me tear up and hug my littles extra tight then and, I've discovered after listening to it again lately, it still does. Sniff. View the PBS spot here for a little something to carry with you.
Many blessings to you as we all head out in our various pursuits. May we survive the politicking, be sure of our affections and our loved ones, hold our punkins close, and revel in the everyday blisses.
The best way out is always through.
-- Robert Frost
Let's go.
I'm a little busy. Betcha would never have guessed, though. Since I keep posting here so regularly and all. Here's a quick run down.
School: One kid is just flying through her work like it's walking on water. This is cool but I wonder how I'll keep her busy if this keeps up. We're covering a ton of information just now: Life Science and 1600-1850, as well as the more regular, workbooky kinds of things. (Have I mentioned that I heart workbooks? It's a seasonal thing, I think.) I'm tired so the Seleucids, Annelids, and Turks are bleeding together in my head -- I find this to be a somewhat eerie feeling. Music (piano and violin) is going especially well for each of the bigger kids, so it's pretty noisy here. Q loves it and fusses when removed from the immediate vicinity of practice sessions. Pretty funny.
Q: I have a lot to figure out re: equipment. Perhaps this will involve a proverbial girding up of the loins in preparation for battle. It seems likely that we won't be able to get the adjustable arms and software/hardware setup I need to get the boy rolling with head switches -- this because of the timing of the submission of request letter. And there are the really big items -- stander/walker or both, feeding chair, bathing seat, aug. comm. device. It seems likely that not all will be granted and that I'll still be propping the boy up in an odd configuration of pillows and my legs, both of us stuffed into the corner of the couch. I need to be thinking about a different place to live in part because I need to figure out how to have a bathroom that can be basically Q's; lifts, etc. that would take up the tub and render it useless for the rest of us. Ramps for his chair, especially since it seems pretty likely that he's going to use the thing with fervor and until he renders it useless and it will probably be the feeding chair. Which means getting it in and out of the house every day, sometimes several times a day. Guess it's time to up the ante with the free weights.
Small rant: I'm kind of tired of hearing commentary on this topic. He has a right to his experience, and an adequate one at that (we've already had a couple of occasions of "wear" showing on his tender little skin over his spine -- mostly relating to his bath chair), and perhaps we could determine whether or not he "needs" this equipment after someone else walks a mile in these here moccasins? That'd be great -- if you have any connections who could make that happen I think it might turn the therapy/insurance world on it's head. It's really overdue. (rowr)
Misc: Lots of cleaning up to do here. It would help if we were ever home. Violin isn't happening tomorrow, so we'll spend that time folding Mt. Laundry (only three baskets!), putting stuff away, and scrubbing floors/reorganizing our cubbies. What good is it to own all the crayons, pencils, glue sticks, and pens in the world if one can't find them because one(s) didn't put them back where they belong? Indeed.
The perpetual sorting thing is tough -- rather slow going with all those above, quite pressing issues to keep lined up daily. It's really... hard (understatement), finding old medical and dental paperwork, kids school papers (they were so little and cute and time is just flying by), giving away stuff that I might otherwise have kept -- baby clothes and other things that are just too hard to justify keeping in extremely limited space. Still, it seems as though it's multiplying every time I turn my back on it. Or perhaps I'm not getting rid of as much as I think I am. Anniversary presents and pictures, cards, certain toys and other kid things I'm finding impossible to part with. Their mere existence sort of reminds me that I'm not crazy.
A certain someone once interviewed (quite well) in Galveston. When Hurricane Ike was building toward the island, I kept running in to check out the Weather Channel, heart in my throat, shaking my head and thinking things like, "Is that the little amusement park he wanted to take the kids to see? Empty streets, lots of flooding. There but for the grace of God, man..."
At least we're not doing that. It sounds as though it's still a long road back to normal there. Goodness. Funny thing though; I'd rather be rebuilding a physical existence, intact, than sorting one out of boxes. What's the saying? Something like: If you have problems money can fix, you don't have problems. Yeah. We're all doing different kinds of disaster recovery, I guess.
Which brings me to: We're in court tomorrow -- or rather, today, Wed-nes-day (I'm still in the "sounding it out" mode for the first grader so we can talk, a-gain, about how nutso it is to spell it one way and pronounce it another. And who made these weird rules? Anyhoo...). I don't think this date is any bigger deal than any other part of a divorce proceeding. (Which is to say that it sucks nuclear troll toe jam.) Your thoughts and prayers are deeply appreciated as always.
Maybe I should simultaneously burn stress and take advantage of the buyer's market and go house shopping in Galveston? (cheeky grin) That would require some serious juggling of finances and support networks, though. Not happening.
I hope you rest well. Hug your honey extra tight. Or, if you went to bed at a normal hour, give him/her an extra big smooch as you send him/her out the door or welcome him/her home again.
Sweet dreams and blessings to you. 'Night.
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