Merry Christmas
~Garrison Keillor
Dura Mater: (Latin) Tough Mother.
copyrighted 2006-2011
C
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10:07 AM
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copyrighted 2006-2011
C
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12:10 AM
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Long time no write.
Q is a busy boy in this new year - riding the bus to preschool three mornings a week, using his big boy bed, sleeping a little earlier at night. The bigger kids spent two and a half weeks with their dad and are back now. We're almost moved in. Does this process ever really end? I have three or four large boxes full of stuff waiting for a cul-de-sac sale, probably in June. I expect that number to rise significantly.
It's been pretty weird, getting into the kitchen stuff. I've been scrubbing a lot as I unpack. I'd forgotten just how sick I was when pregnant with Q, and just how incapacitated. So it's been strange, getting into stuff from a former life. Very Twilight Zone - I'm not nearly as much that person now as I would have imagined myself to be. And yet, I'm more "her" than I thought I'd ever be. I don't know how to say it better than that, but there it is.
So I'm sitting here at the bar/counter, with papers to the side of this, E's ancient Dell laptop. My little stack contains paperwork to sign, some 20% off coupons (wishful thinking - we shan't be shopping anytime soon), Q's triangle (for Christmas, part of his new percussion set) a glue stick, iTunes card (Q's), pencil, HOA info, and a little yellow pad, on which is scribbled: Tenderness is greater proof of love than the most passionate of vows. - Marlene Dietrich (shamelessly lifted from a friend).
On the fridge there are photos of smiling babies, the dishwasher is full of clean dishes, airdrying, there are scones from Grandma and fruit on the counter for breakfast. There's medicine and handwashed dishes, now dry, awaiting a return to their respective places. A small fox wearing My Generation doll workout shoes is perched against a package of Q's wipes. I see that S left the pickles out, silly goose. There's fresh basil growing next to the sink (thanks, mom), and towels to take to the laundry.
The living room floor has a blanket for Q and Lincoln Logs - which all the kids played with all week long. There are stacks of Q's equipment and toys along the walls - still working out what to do with all of this. Some things are tough to organize so they're quickly accessible and yet stored attractively, you know? More work to do there. The violins are perched next to the piano and the music stand holds court mid-room. Q's strollerchair waits for him for breakfast time, and his little adjustable table sits patiently, ready for the next onslaught of paint or marker.
It's quiet now, save for the last kid trailing slowly to bed, having spent quality time with a screwdriver, trying to figure out batteries for the solar desk lamp.
It's a good house. They're good kids, and much-loved. I am blessed.
I'd best be off - pickles to put away and dishes to manage, you know. Hoping good things for you and yours, especially amidst the chaos we've all had this week. Here's to healing, and to Life: L'chaim.
When you don't know what to do, do the work at hand.
- Calvin Coolidge
copyrighted 2006-2011
C
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11:50 PM
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Hope your day was full of kisses and all manner of good things. I've got this song running through my head these days.
Hold Us Together
Matt Maher
Alive Again
It don't have a job, it don't pay your rent
Won't buy you a home in Beverly Hills
Won't fix your life in five easy steps
Ain't the law of the land or the government
But it's all you need
And Love will hold us together
Make us a shelter to weather the storm
And I'll be my brother's keeper
So the whole world will know we're not alone
It's waiting for you,
Knocking at your door
In the moment of truth
when your heart hits the floor
And you're on your knees
And Love will hold us together
Make us a shelter to weather the storm
And I'll be my brother's keeper
So the whole world will know we're not alone
This is the first day of the rest of your life
This is the first day of the rest of your life
'Cause even in the dark, you can still see the light
It's gonna be alright, it's gonna be alright...
Nice, huh? It's even better with music and it's a nice one for swaying to, if you happen to have someone nearby you'd like to grab and sway with. (Hint. Grab your Someone.)
Q's all snuffly and sick. Thankfully I'm mostly over the dreaded sinus crud, but it's likely to be a long night with the little man. Poor punkin. I've got my fingers crossed for a quick recovery for him, though. Wishing like crazy to avoid steroids this winter.
This week my youngest brother would have been thirty-three. I always wonder how things would be different for our family, who he would be, which of us he'd most resemble, if he'd survived. He was such a sweet little boy and still missed. I held my breath a little as each of my punkins passed the age he was when he died. So. Extra hugs for my mom tomorrow.
Hope you have a lovely and blessed week. "Kiss those babies." -Dy
copyrighted 2006-2011
C
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11:38 PM
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It was one of those days you sometimes get lateish in the autumn when the sun beams, the birds toot, and there is a bracing tang in the airthat sends the blood beetling briskly through the veins.
-- P.G. Wodehouse, Jeeves and the Old School Chum
copyrighted 2006-2011
C
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8:48 AM
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She deserved better, but she resolved to do better instead.
--Stuart McLean, The Vinyl Cafe
copyrighted 2006-2011
C
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1:05 PM
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I am always puzzled when I see people tailgating or cutting off tanker trucks with pictures of flames on their haz-mat tags. I wonder if the drivers of those smaller vehicles are jockeying for some cosmic, all-time version of the Darwin award.
I'm feeling especially grateful just now for opportunities afforded my children, for extended family to share some of those experiences with, and for clean spaces. I have a penchant for appropriate tools for various jobs: the Odyssey I drive my children in has rubber floor mats. They wash off so slickly, as do the seats. I adore microfiber cleaning cloths. I have a printer/fax that makes my life easier by several orders of magnitude, most days anyway. What a gift to be able to just make and have the materials I need for the punkins to proceed. There's a really lovely broom in the kitchen -- I use it often and so can speak to it's usefulness. Very cool broom. The dishwasher and washer/dryer. I cannot fathom doing four loads of dishes by hand in a day. I cannot fathom trying to keep up with a laundry "schedule" that is most successful at three to six loads per day without a fantastic set of machines. They get the dishes and the clothes clean, respectively. Clean. I love clean. I consider these things to be small miracles and I am greatful beyond explanation for each of them.
Wish list: Dancing on the beach -- rain or shine. Hours all in a row for reading. Respite care. More silly time with the kids (in which I may thoroughly embarrass them). More hours per day, with one extra day per week. Fireside snuggling. Self-dusting furniture. A cloning device so I may be therapist, mom, teacher, chaffeur, cook, researcher, lifeguard, runner, advocate, thinker, whip-cracker, and still be able to dance on the beach.
Spoke with the PT today about Ski for All -- he gives it an adamant no. His adult son volunteers with the program every year for several years now and our PT has great appreciation and respect for it, but Q lacks the physical stamina for the cold (though we've plans to work on that), and is not a good risk for downhill motion beyond being snuggled as he slides at the park. Last year, our beloved PT nixed the tubing hills, even the gentle ones, because Q cannot protect himself in any way, not even the reflexive motions that babies make. He'd run a significant risk of head injury because he simply cannot maintain a steady head position. However, said PT does state that Q may indeed look forward to participating in downhill runs with Ski for All sometime in the future. He will love it and not want to leave, which means that he'll need his mama to get busy raising the dough for the program, thanks.
In the meantime, I'm looking at the WIKE special needs bike trailer. Check it out. The videos are especially neat, I think.
Q's out and snuffly so I'm heading off quick because I'm betting that I'll be up again. My bedtime reads have recently included P.G. Wodehouse. I'd forgotten how great it is.
And so I'll leave you with this, from a sweet friend of a lovely friend. Have a richly restful weekend.
"The Lord has said to me in the strongest terms: 'Do not think like everyone else does. Do not be afraid that some plan conceived behind closed doors will be the end of you. Do not fear anything except the Lord Almighty. He alone is the Holy One. If you fear Him, you need fear nothing else."... Isa 8:11-13 NLT
"And who will suffer the most when they ration care? The sick, the elderly, and the disabled, of course. The America I know and love is not one in which my parents or my baby with Down Syndrome will have to stand in front of Obama’s “death panel” so his bureaucrats can decide, based on a subjective judgment of their “level of productivity in society,” whether they are worthy of health care. Such a system is downright evil."
Sarah Palin, posting on Facebook
We have some things in common. She's mom to five, the youngest both a sweet surprise and developmentally disabled. I looked forward to hearing more from her, thinking that like any parent finding themselves in such an unfamiliar role, she'd take a little time to find her feet, but would have her own unique experience to share as baby Trig grew and their family learned to navigate the new normal.
I ordinarily stay leagues away from discussing politics, here or anywhere else. The fallout tends to be extreme. We attach easily to our political beliefs, imbuing candidates with characteristics they don't possess, good or evil, and somehow arrive at conclusions that are not always reasonable, but are almost always intense and strongly held. I'm unwilling to sacrifice friendships for ideology, especially when it's impossible to fully grasp another person's experience and appreciate what leads him or her to form a particular opinion, especially when any moral implications of a particular position seem murky.
But this, now, is not murky for me.
Ms. Palin does not seem to understand what she is talking about.
I do not wish to discuss the bigger picture of healthcare reform, except to say this: I am speaking from personal experience -- as mom to a kid with significant health issues, now former wife to med student/MD, relative to primary care providers, friend of specialists and their families. The system now is so broken that primary care physicians, physician assistants, nurse practitioners, and etc. spend a great deal of their precious time simply handling administrative baloney in order to be paid (and not especially well) for their work. This means their field isn't so attractive to new grads, which means your odds in finding a great primary care person drop every year. You may have discovered this for yourself. Wait times for specialists are also long and growing. We do not currently experience a panacea in this America we love. There is something better, something probably not yet named, which will be brought about only by earnest discussion between thoughtful people who demonstrate a willingness to ask questions, wait for the answers, ask follow-up questions, wait for those answers, push for their families' best interests and those of the nation (not necessarily opposing interests), preferably by using words which show that they've read and want to understand something that looks nothing like shrieking hyperbole. Something which is driven by things bigger than fear. Moving on...
The America I know and love already rations care.
Q would benefit from a dozen or more hours of therapies every week. He is a sweet, bright, cheerful, hardworking little punkin, in a non-verbal, uncooperative body. He currently spends one hour in Speech, one hour in OT, and two hours in PT every week. This last is only because we have a super PT who is driven by his faith to help whomever he can, convenient or no, and because I keep pushing, asking for extra hours whenever they're available. Because I'm pushing, Q gets an extra hour of Speech each week for the month of August. The wait lists for those trying to get into therapies for the first time or to restart treatment are months long, sometimes over a year. Medicaid (SSI) reimburses at a rate much lower than private insurance. Private insurance often allows a max of twelve therapy sessions per discipline, per year, even for kids with permanent issues.
Q's neurologist redirected us at NICU from the Medicaid chute (to one of the local children's hospitals) to his other office, specifically so he could spend more time with Q per visit. He still receives only the Medicaid reimbursement for a tiny time slot, but spent 55 minutes with Q and me at the last appointment. This is his Modus Operandi. Imagine then the wrangling he does with that hospital that he's billing through for having spent such a ridiculous amount of time with one Medicaid patient. Imagine then what that takes away from all the other emergency phone calls he takes from parents of children in Status Epilepticus. Imagine how your private insurance in effect pays for my kid's time. Well, after his office staff finishes arguing about whether or not they get paid at all.
But I digress.
The only sentences from Ms. Palin's argument with which I agree are these: "Such a system is downright evil." You bet it is. It is here, already. And there's no question that we're all positioned to affect something about the outcome of the current discussion. But nowhere on any table is rationing as she states it.
And this: "We must step up and engage in this most crucial debate." You bet. I so viscerally hope that by this she means that she's committing to choosing her words carefully, taking seriously her new position on the national stage, understanding that she can incite riot or encourage thoughtful discourse.
Perhaps the thing which most upsets me about this is that she has a unique voice here, being the very public parent to a child with Special Needs. She has a few things upon which to decide. Does she want her kids in or out of the spotlight? Will she be willing to put Trig there when she's unwilling to insert the others into a similar position? Is this hypocrisy? Is she interested in seeking quality care for her kids and being a voice for others? Is family privacy more important? Are the words she's choosing to use towards others being received by them the same way she and her family received damaging words during and following the campaign? Will she be willing to reassess her positions on everything, in order to develop her own, thorough, personal understanding of the new issues in her family?
I do not necessarily believe that gaining a kidlet with SN changes everything about who you are. I think it's rather like getting a new pair of glasses -- it merely reveals what was already there. In this case, that includes crossroads that one might never face otherwise. As a SN parent, will you cower when someone looks askance at your child? Will you deal with your situation and the people closest to you with affection and humor or with defensiveness and frustration? Those emotions and responses are ever present, always available for the choosing. But it confounds people when we complete a Costco run smiling, even when stuff spills or Q has puked on his spit rag. Sometimes I leave stores with tears barely bitten back, but mostly it's because of kindnesses, even if misdirected. Screaming back at someone who stares a little too long, who comments behind a hand, whatever, does nothing to change the world. It does not make my children braver, or kinder, or more resilient. I can snark with the best of them (ask around), but it gains me nothing, and my kids and the world even less.
This is the part that catches my attention because it is where I dwell, and a thing to be wrestled with. Speaking not just about Sarah... If you believe yourself to be a whole person, intact and uniquely created, act. it. out. You are secure in the knowledge that your Creator is in charge and that nothing in this world can erase that? Then there remains nothing in the world that can hurt you. No president, no weapon, no person. Come quietly, showcasing the intelligence he granted you, from a position of strength beyond measure, and rock the place like it's never been rocked before. Stand. The river moves, but it does not move you. Reflect His mercy, grace, kindness, and willingness to sit down even with Pharisees. Even with prostitutes, drug dealers, murderers. Even with Congress. Call upon him for knowledge and patience and humility when approaching your enemies. Bring the magnificent brain he created just for you and use it til it hurts from stretching to understand as he would. It is difficult but useful beyond human comprehension to be circumspect without being a wimp. You claim this as yours? Then claim it moment by moment, pray and meditate without ceasing, make yourself new in his image as he calls you to, refreshing yourself from the constant wellspring that is his healing.
I believe that each of us will be led differently, according to our own path and his plan for us. This means that you may well disagree thoroughly with me. I'm good with that. But whomever you are, do not speak, in a manner which seems to me to be uninformed at best, about something with which you have little experience so far. Do not use your position, intentionally or by default, to enrage people with words that are demonstrably false. It is wrong to do so.
That's all I've got. I hope some of it makes sense. I may have to spend another post footnoting addendums (addenda?) and explanations, but Life is calling.
ETA: (Told ya.) "If you can learn a simple trick, Scout, you’ll get along a lot better with all kinds of folks. You never really understand a person until you consider things from his point of view . . . until you climb into his skin and walk around in it." --Atticus Finch, To Kill a Mockingbird. (hat tip to Pam for the timely article...)
I wish Ms. Palin and her sweet babies well. Her path is not an easy one.
I've been hiding.
I'm kidding. I've just been very busy and heavily annoyed at my fallible self, physical and otherwise. Mostly the physical parts. Let's just say that I could use a tune-up that involves actual repairs to my cranky parts. Moving on.
My favorite quote this week: The high road is often a pain in the arse.
The kids have had their piano and violin recitals. Q will be up for his next neuro appointment soon. Two girls go in for their orthodontist check-up on Monday (looking for timing).
We tried to have a really cool geology field trip yesterday, but ended up with something more like a nice road trip which the kids turned into an impromptu swimming excursion. "Plan Z" indeed. The best part was not finding that the bridge was closed after we'd driven nearly three hours. It was not that we had along only enough food for a marginally acceptable picnic (if they were starving they could have had carrots or apples or cheese or crackers). It was that everyone kept a healthy sense of humor (Why advertise an overlook if the trees have grown so high that there's nothing to see? Hmm? Because that did not happen overnight and you could have removed the signs five or six years ago.). Yes we did. We had plenty of potty stops, the nice lady let all twelve of us into the park for free so we could salvage the day with a handicapped-accessible beach and play equipment, the coin-op showers were warm, the hand dryers efficient, and it was just about 85 degrees. There were logs to float around and play make-believe with, big fish jumping, and grape-scented bubbles to blow. Miracle of miracles, almost everyone had almost completely dry clothes by the time we found food again. And I got to drive through miles and miles of rolling green-ness, grasses that looked like they'd been groomed for their cover shots, huge gorgeous trees both deciduous and not, nursery fields of iris and baby Christmas trees... It's been eons since we were out and about like that. I think K was a baby last time.
Spring has about taken us prisoner here. But no one really wants to escape. The days are long and sunny, warm enough to send us looking for cool drinks and sprinklers. The tomatoes are mostly in the ground, all eighteen of them. Well, we're down to sixteen. We'll see how many hang on now. The Sweet One Hundred plants already have blossoms on their tops, so we should have home-grown tomatoes to go with our fat and fluffy basil plants by the fourth of July. (How would I know? I'm totally guessing.) The glads all returned this year, despite not being dug up for the winter. I stuck Cherry-blossom nasturtium seeds in between them and sprinkled a packet of rosy pink alyssum seeds in there too. Should be fun to see them all come up and take over: a potential riot of pinks.
A friend and I were reminiscing about the things we missed most about California, she having been born and raised there, I having spent about six years there. We both miss the predictability of the sun. I started thinking about this back yard we had there. It was a funky little place, part of the house being actual dirt walls. I loved that little house. Very cool. The living room carpet was G's learning to crawl place, thick and comfy looking. I painted the master bedroom with a blue wash that made it feel like one was maybe under the sea (sing it!). Never mind the high speed chase that ended with a wheel bouncing up onto the front lawn. Lizards would get in and freak me out (any reptile over about nine inches suddenly appearing in my kitchen might have that effect). The flower beds in the front were darling, really. Sort of English garden on a smaller scale: they had more shade in the heat of summer, plus huge miniature rose bushes. Well, huge for minis, anyway. It was lovely. But the best part was the backyard. Not the part where a kid was dumping medical waste over our fence. Ignore that. Let's focus instead on the little hot tub that someone repaired well enough that we could use it. And then we did.
It seemed like there was about a three week period where the lemons and oranges and grapefruit trees in that little yard were blooming. It was heavenly. And then, sort of simultaneously, there was the huge jasmine, all eighty square feet of it, bursting little pink buds into the sweetest, lightest perfume... It was followed almost immediately by the roses, hot and honeyed, and then the actual honeysuckle, so big that it eventually pulled down it's large and solid support built of four by fours. Being out there in that little hot tub surrounded by those wafting scents was surreal. Impossible to explain. The closest thing I can think to compare it to is maybe being bathed in a warm vapor of perfume, almost more light than scent. Wild.
That little yard saw a gigantic white dog, G learning to walk, the death (by silenced gun) of several possums, and a birthday cake with a conglomeration of little plastic figures on it: a tiny scuba diver, an itty-bitty rattle, booties, plastic fish...
Seems like a lifetime ago. But every once in a great while, I'm flying along, minding both my own business and that of the five offspring, when suddenly there's that scent of something like warm honey, oranges, jasmine, gardenias. That smell that's hard to pin down, but instantly familiar. And I'm back there again, head back, eyes closed, floating and smiling in the dark.
copyrighted 2006-2011
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1:06 AM
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When you see crazy comin'...
...cross the street.
--Oprah
copyrighted 2006-2011
C
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12:28 AM
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Now there's a title. It's accurate and metaphoric, all at once. I used to have pages of ads, pictures that I'd torn out of Shape Magazine and others, shots of women running: on the beach, down the boardwalk, around a lake. I had them stuck to the back of our bedroom door, sort of a "vision board," to borrow from The Secret's lingo. Anyway, I've thought about it over the years. Had dreams, literally and more figuratively, of doing sprint distance triathlons, but I've never known how to rearrange everything (kids, hubster, house, and etc.) to make training of any kind show up on the radar. Plus there's this ridiculous knee of mine. I truly can't afford to mess with it. If I'm lucky and careful and all that, according to the orthopedist, I should have about five more years before I have to figure out how to finance another knee surgery. Instead of running, we biked on the weekends and used to walk after supper, taking the family around the neighborhood, littles in the bike trailer/stroller or later up on shoulders when the little legs ran themselves tired. It was awesome.
So. Fast forward to now. I still have a bazillion legitimate reasons not to run, but the idea won't leave me alone. In my experience, this urging is best listened to. And quick, before it has to swell to epic proportions to get my attention and I end up learning to run by, say, having to relearn things like standing and walking in some intensive PT program somewhere. Guess I'd better get creative with the schedule, then.
Over the last few weeks, I've tried, pushed in fact, to make sleep a priority for me. I've made it to bed before midnight a few times. But even on the nights where Q sleeps for several hours all in a row, I'm often startling awake, feeling that things are somehow amiss, just as I used to when Someone was on call. Getting better sleep always equals better everything else for me, including just basic ability to keep up. Perhaps if I go back to just focusing on the sleep issue, other things will again feel a little easier.
(Brace yourself for the inevitable whine which follows right... now.) I believe I can now provide hard evidence that whatever happens, no matter how fast I run (pun intended), I will never, ever, not even one time, get it done. Not all of it, maybe not even most of it. Given that, it seems like an important thing right now to know whether or not I'm tired or depleted, you know? Because tired, dog tired, is to be expected. A droopy immune system may also be expected but it is not even a little bit acceptable. It would cut into my ability to push through, as do certain more chronic pain issues. Those things have to be handled, now, and gotten past, ASAP. The ones that refuse to go away just suck the life right out of a person. That's usually the time that a persistent track pops up in my head: "You're just one person. What makes you think you can do this? You can't do this! You're only one person!"
It's taken me too long to shut that stoopid voice down, let me tell ya. (Rolling eyes at self.) The big problem with that voice is that it's right. And also dead wrong. I can choose to buy into the truth that it's all on my head here, all these needs and plans and schedules to keep, or I can go with a slightly less panicky version. It has occurred to me, in sometimes emphatically illustrated ways, that I haven't a moment to spare on this sort of thing. Every last thing needs to be constructive, useful, a building up instead of tearing down. I mean, we all know about the tearing down of muscle in order to build it up (great reference to the same here), and that certainly applies in holding oneself together: the holding together is often best done in the context of new skills, often gained in a tearing down portion of the cycle. Perhaps especially so when one has dependents who, well, depend on one.
Steven Covey says in his tape "How to Write a Family Mission Statement" that when pilots fly, they're off their stated plan as much as 90% of the time. Ninety percent!? And yet, they make course corrections, consulting with their instruments, with their flight plans, with towers. They almost always arrive on time and at the correct destination, even when they've spent ninety percent of their time in the air pointed in a direction other than the one they wanted to be headed. The take away point, for me, is the willingness to course-correct.
I wonder sometimes how the kids will remember these years. That's pretty much what keeps me flying along at a high rate of speed. Vacuums get filled up you know, so best to have a full stock nearby of truly Good Things with which to fill them. So. Rather than being focused on the vacancies, it's vitally important to put all ounces of energy into making good memories, pulling material from every direction, talking when words barely come, listening when sleep is calling, reading and researching and praying, and staying in the moment and loving on 'em even when they're just plain horrid. Wish that last one were easier.
We're in a very different stage of life these days. G has applied for a summer volunteer position at the zoo/aquarium*. He's excited and a little fearful about it, laughing self-consciously when I asked him whether he was hoping they'd call or hoping they wouldn't. E wants to dive in right after him -- she's been trying to figure out how to go rock drug-addicted babies or help therapists where Q is every week. Those places won't take volunteers under 14, so she's been pretty disappointed. I'm trying to think of how to maybe go, the two of us, to do this. K, for all her current frustration with certain sibs, loves on Mr. Q like nobody's business. She is all about how to make him laugh, and does she ever. S is navigating new ground too: how to be responsible and grown-up when no one recognizes your mad butter knife skillz (food prep) or that you're jolly well just as capable of just about everything as any of the other kids. Q is busy -- he's decided that food is mostly passe, unless it's dessert (hmmm, sounds like he's three). He's getting ready for an AAC eval because his new Speech Path is all about getting things done, and she likes PRC. (Hand clapping, happy dancing) And? She knows the rep. She'd be happy to call Mia up and ask her what they can do for us in the way of a loaner. Something to play with so Q can see what he really needs.
So I have five on the verge. They're setting up the pins and knocking them down. By contrast, I'm feeling too often like I'm just about keeping up, when the most useful place for me to be is out ahead. The therapy bags, diaper bags, purses, duffels, music bags, church/quiet bags, and their ilk, all need sorting, laundering, repacking. Q's toy/therapy shelves need sorting. The girls closet needs reorganizing according to size and season. I got a thorough job done while they were gone at Christmas, but it seems like no matter how much a person does in there, clothing and miscellaneous detritus just keep popping up. The laundry room could use an emptying of everything that isn't nailed down and then a thorough cleaning (detergent droplets make a horrible goo). We might be up some pairs of socks at the end of that effort.
While all the above is true, it's also just as true that the kids are 56 days into their goal of 100 consecutive days of violin practice (piano hasn't fared quite as well, but close). It's also true that the dishes keep getting done, the cupboards wiped down, the floor swept and mopped. It's true that the kids keep reorganizing their school cubbies, putting away their violins, sorting laundry. Bags of unused or no longer needed items continue to leave the house, headed for Goodwill or ARC. Things that must be kept are put into their memory boxes. And everyone gets fed really good stuff (my interpretation) and then washed up. Every day. Learning happens, conversation happens. Every day.
"Beyond a wholesome discipline, be gentle with yourself." (The Desiderata) It's hard to resign oneself from being open to the judgements and qualifiers of the rat race. But it's worth it. Or so I hear. I'll let you know when I reach the mountain top. Right after I have a nap.
We'll consider it a course correction.
*This process made me grin. It was very like the mad dash made for the proper postmark date, nearly an hour from where we were going to school, me driving pell mell through the dark while someone was writing his personal statement for his John's Hopkins application. "Discuss, discuss. Scribble. What?" Repeat. G was far more collected than either of us were, much to his credit, and no writing was done en route, but still. He sounds more like his dad all the time, the whole process brought back such strong memories, all while I'm feeling a little out of body about my eldest filling out applications for anything. Seems like he was a toddler in my arms, first asleep over my pregnant belly, then carried by his dad, all of us at the Monterey Bay Aquarium, just moments ago.
copyrighted 2006-2011
C
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11:33 PM
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Sabbath mornings are always demonstrations in opportunistic heck. One always begins these undertakings with the greatest of intentions: everyone dressed in the outfits as they were meant to be worn (unaltered by the creative interpretation of color-blind garden gnomes), clean, smiling, fed, and on time. Something you should know about me? For many, many years, I was rarely late to a.n.y.t.h.i.n.g. In fact, I was often the first one to arrive, with my four little uber-prepared children in tow. People were known to comment upon this, most of them parents of less kids than I, most of them floored that this was the case. I found it pretty funny (most of those people were exceptionally busy and I often wondered how they managed to remember their own names, much less appointments and stuff). Acheiving this was sometimes a struggle, but more often just a thing to be planned out effectively and executed. Period. Enter Q. If I'm up and mostly ready before he is, it shaves easily 45 minutes off our collective prep time. Otherwise, well, we've all been in the midst of good intentions gone awry, yes? Indeed.
This morning was okay. The boy was up before I wanted him to be, but was bought off with a glass of water and a Veggie Tales video. Unfortunately, V.T. slows my other children to a near stop. So I got ready and fed him whilst continuing to issue directives. We were planning to head north after church to see birds with my aunt, enjoying a last-minute jaunt before she undergoes a double knee replacement on Monday. Boy fed, children clothed (don't look too closely or you might question the omission of tights in February, brilliant sunshine notwithstanding), equipment, food, and miscellany collected and loaded up, we're off. We'll get there just in time for church and choir practice. Too bad that we'll be missing other fun stuff, but we'll make that commitment part, and, and? Mommy's head is not spinning around and everyone is still being quite kind to each other, so we're golden.
Navigate the freeways (at perhaps a slightly increased rate of speed -- shhh!), loving the music, Q hasn't thrown up, not even a little bit, still golden. It occurs to me that perhaps this was in fact the day that major repairs were planned for one particular part of our route, taking three of the five lanes out. This occurs to me mere seconds before I spot the sea of brake lights over the next rise. Shoot. Music is still good, though. Q's happy. We'll just take this opportunity to review memory verses and the list of the books of the Bible (we're all working on this). Breathing deeply. Patience, grasshopper. Pay no attention to the crazy man trying to block merging traffic with his car. All is well.
I took the exit that would allow us to use an alternate route, noting that about a third of my fellow travellers were doing the same, making this choice perhaps less speedy than it might have been, but we were moving well as opposed to sitting still, so whatever. As we came around the big corner of the long off-ramp, slowing, I pointed out to G a license plate on a car travelling over in the far left of four wide lanes: EPH 2 8. We mused about what Ephesians 2:8 might say. I checked lanes and merged far right to make the next turn, slowing to stop at the end of the line of perhaps 9 cars waiting at the light. As I braked to a stop I heard a low rumbling. I'd seen a pickup in my mirror as I was signaling. As I looked again, the sound changed from very low, almost inaudible, to a higher clanking noise. The pickup was still coming down the angle of the ramp, about fifty feet back and closing, merging from the right, where we had come in from the left. As the driver braked sharply at the unexpected amount of traffic sitting at the red light, several dozen 10-12 foot lengths of 2" metal pipe shot up over the rack that had held them in place, resting in the back at an angle when he'd been driving on a flat surface. When I saw what was happening, they looked like someone had just released a handful of pick-up sticks. No time. I looked back to the front. Traffic was just beginning to creep forward at the light, but there was a tiny bit of shoulder there. I turned the wheel a little, and tapped the gas, only as much as I had room to, not much. I looked back again and the pipes were just about done flying through the air, most of them coming to rest now, some still rolling in front of the truck.
And then it was done. I'd barely had time to think, "OhGod" and just react, such as my reaction was. There was pipe in front of us, on either side, and resting against our back tires. When I drove over it, it did not collapse, but held it's shape. I should probably have stayed, but I was just... stunned. I knew it hadn't hit anywhere on the van because I hadn't heard any metal on metal, and I didn't care about anything else, as long as the vehicle was intact, we were too. G had seen it coming, looking for the sound, and was shaken. The girls looked back in time to see the pipes clattering on the pavement, rolling toward us, but that was pretty much it. With the lovely properties of safety glass, we would more than likely have been fine, really, even if some of it had hit us. But the truck was going around 40 when they hit the brakes, and I'm glad we didn't have test that out.
I was rattled enough that I took the wrong turn for the next piece of highway and we spent a few minutes on surface streets, getting all reoriented. Just before we got to the church, there was an Explorer waiting for EMS -- having just hit a pole, pretty directly head-on. So by the time we got there, the sermon was in full swing and the kids' choir practice was starting. G took Q to walk in the foyer -- the boys needed to stretch their legs. I sat and listened, as best I could. I kept welling up and shivering, then sort of being able to pay attention again. Which is such a shame, really, because when does one get to hear the sermon? Never. And it was so good. What I heard. The title: Subject, Verb, Object. And he tied French philosophy, grammar, and Spooky Action at a Distance together with how conventional wisdom fails us (subject) when things (object) aren't working (verb) conventionally. (Hint: the answer lies in fidelity.) It was just so good; an example of why I love this church so much. Maybe I'll get to listen later.
We went on and had other excitement. Pulling onto the freeway after church, the tow truck removing the sad Explorer passed in front of us. Ouch. Then Q got huffy at lunch time because he could smell the food and I wasn't feeding him. I had thought that his breakfast had been so big that he was likely to still be pretty full and then puke (on me) if I tried to get him to eat anything at that point. So I gave him a taste of G's tomato soup in a bread bowl, figuring that he'd hate it and I could eat quickly and get him a drink and we could get moving again, on down the road toward the birds. He ate the whole thing. The whole thing! And it was tomato soup, so acidic, something I've never dared try before. I sort of fed him with one eye open, braced, waiting. But he ate like a champ. He was completely upright in his chair and managed his head fairly well and just chowed down, barely spilling. And? He never did have any tummy upset. He's sleeping happily right now, having had a monster supper -- 6+ ounces of sweet potatoes and coconut milk plus his extra-special Boost supplement. Can you believe this? Me either.
We were hoping to see Snow Geese and Whistler Swans. We did. The swans practically lined up in fields flanking the freeway for us, if you can believe it. They were huge. We saw the horns of an owl perched in his nest. We walked and saw an eagle's nest and the tenants, Goldens, hunting. Did you know that those nests can be up to fifteen feet across? The Red-winged Blackbirds sang for us. Sandpipers ran. The little brown Winter Wrens hopped and flitted charmingly. Thanks to the observant among us, we saw the clouds of Snow Geese, thousands and thousands of them, about a mile and a half away, like fog, flying over to the nearby island and to a field. After our walk, we drove on a little further -- my aunt knows where to look and what to look for. And suddenly, there was a field full of Snow Geese. Two hundred? Three hundred? More? We sat, windows down, just breathing. (Well. I was still periodically welling up, what with the adrenaline still wearing off and all.) Suddenly, they rose. A cloud of white and black, black and white, alternating as their wings beat. They turned and wheeled for a few minutes, an exercise in precision teamwork, before heading off to rejoin the thousands who had flown earlier.
As we came back on to the freeway, a pair of swans climbed up, flying huge and low, right over us. Right over us. They were incredible. As the kids watched out the back window, more pairs crossed over, faithfully in twos, those birds who mate for life.
The sunset was gorgeous. The kids were funny and helpful and sweet and kind. And now they're asleep (exhausted) and I'm going to head off too.
For by grace you have been saved through faith. And this is not your own doing; it is the gift of God...
Ephesians 2:8
What a day.
What a busy month this has been. I keep thinking that there will be a time of less busy, less stuff, less questions and more answers. So far, not so much.
I'm back at the School District office early Wednesday morning with Q for further info/meetings with the district Health Officer. I don't even know who this is or why she's important, but we're going and he'll be eating while we have our meeting. I can only assume that the involved process which his feedings are will impress the nice ladies enough that it will add gravitas to my request that he receive services at home for at least November through March. Why? Well, the boy had his first respiratory bug and NEBs at less than two months of age and he's had something like that every winter. Each time, his tone drops and he's unable to participate in therapies so no learning, no progress for a few weeks while he gets back up to snuff. He loses weight so we work hard on packing that back on, and meanwhile he's at further risk of illness because of being underweight. So it's a losing situation all around for him. And this without exposure to the petri dish that a preschool room so often is.
We have a new case worker for the Dept of Developmental Disability. I'm hoping she'll be more forthcoming, easier to contact, etc. I'm pretty durned disappointed that we didn't get the software, touch screen, and flexible "arms" that would hold Q's buttons up by his head (attached to his strollerchair) so he could play his preschool/learning games at home instead of whenever the one computer in the lab that will do this becomes available and we happen to be there for therapy. The paperwork was submitted at least twice and that particular caseworker never contacted Q's OT. Not even a letter of denial. Not even a contact when he aged out of that part of the program. When I spoke with that case worker, she said that their mail system is very slow and that faxes often go AWOL. What? Really?? In this day and age we still can't find our paperwork? Is it a plot? Maybe I could spearhead an effort to put this all online so that no one has any excuse to say it never got where it was supposed to go. In my spare time.
I mean, come on people. My littlest kid sleeps well one or two nights a week. I have four bigger kids who I'm pretty busy with. If I can think of this stuff, isn't there someone whose job this should be who could just make it happen?
Gah.
So we'll be trying out other funding sources. Meanwhile, the School District thinks they may have a touch screen for loan. Wahoo! I love them already. Big grins. The team of therapists we ended up with happens to be the Aug Comm or Assistive Tech team. These people are the ones most likely to get Q to "speaking", with help. Just for the record, when we get the Box, whatever it is? I want Yoda's voice and syntax. Somehow, it just seems like Q would be that guy, if he had his own voice beyond coos and burbles and crazy-boy belly laughs. (Nodding) That guy, be he would.
In other news...
Court date happens Friday. Prayers are appreciated always. It seems likely that things would be declared final then, she says, puzzled by the whole weird progression (or lack thereof). I'm more or less okay with this, I think.
I mean, I'm not. I'd like a do over, really. One in which, when someone is telling the kids "nothing as silly as a 'disagreement' would ever make mommy and daddy get a divorce", instead of being all deer in the headlights, pregnant-brained, sick as a dog (a surprised to be pregnant dog), and stunned silent as he says this (given the prior announcement of How Things Are Going to Be Now), I reply by standing up, making myself as tall as I could, and stating in clear and calm tones, so that there's no doubt, not even in the distant corners of anyone's mind or heart or soul, not anywhere in the whole universe, that there's no reason mommy and daddy would ever get a divorce, that there's nothing on earth or in heaven that could remove me from being Firmly On His Side or from fighting tooth and nail for the integrity of our family and those little faces' home... That kind of thing. Or getting to say, one more time, how very proud I was to be his wife.
I was. I would have always been. Even with all manner of heck, craziness, uncertainty and this complicated life Q lives... I would always have been.
Since that, uh, isn't one of the options presented? Well. He's very happy. He has whatever it is that he's always wanted, I think. And you know, there's been plenty of sadness over all this. I can't imagine not being sad about this, ever. But the thing is that you sort of have to create joy for and within yourself (and your little ones), or you'll turn to dust. Who wants to be dust? It's all dry, it sticks in people's throats and makes 'em choke. Yuck. You need moisture to make things viable. To have mud in which to grow little bean seeds or robust, stickery rosebushes, one must have wetness.
I'm so far from dust. I might be that red, red clay, ready to be slammed onto the wheel in a studio somewhere. Or maybe porcelain slip, all wet and silky, filling those sensuously shaped molds of undulating vases, or full and sassy fruit bowls, or those sweet little round teacups that like to be held.
Whatever version of mud that it is, that I am (ha), it dwells in the land of possibility. It isn't what it might have been, but it isn't crazy-awful either. Okay, sometimes it's crazy-awful. But there's at least as much to dance about in life as there is to mourn, always has been, even though the things to mourn just keep stacking up. Sometimes the stacks fall on and flatten us pretty thoroughly. But when you're not flattened anymore, when you become ambulatory again, if you can plan part of your dancing-time to be done out in the rain, it helps with one's moisture content. Do try to avoid any actual lightning, though. Electricity + water = no more dancing for you.
Which reminds me: some of us probably feel like lightning rods these days, what with all the layoffs and other not so nice things afoot. Pray a little extra, leave some groceries anonymously for a neighbor, give some extra hugs. Be brave and creative, give something, whatever you've got, whatever it is. If we share and keep sharing, we'll make it. It'll be okay. No, really. It will.
For I know the plans I have for you,” says the Lord. “They are plans for good and not for disaster, to give you a future and a hope. -- Jeremiah 29:11
Though it pours, go dancing. And if it's messier than usual? If it turns out that the red clay of Zion (UT) is running all over you? Well, we can share showers and washing machines too, as well as anything else. Besides, we shouldn't let the fear of a little mess keep us from those moments of priceless hilarity.
Go.
XO
copyrighted 2006-2011
C
at
12:36 AM
3
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I'm just waiting for Q's meds to kick in before heading off to bed, thought I'd drop a few lines here.
We saw Santa last night. It's been a yearly occurrence since G was 5 mos old. I almost quit after life blew up, but decided that the (Herculean) effort was necessary. The kids were losing so much that was familiar, I didn't want them to look back and see that that year, along with losing their family, every little thing went off the rails.
So last year, when picking Q up off Santa's lap, Santa, tearing up, commented on how lovely a family we were, how clearly and greatly Q was loved. I smiled and said thank you and even managed to walk away instead of falling to the ground sobbing, as it sometimes feels like I'm about to when we get compliments on our lovely family. (Call me crazy, but the irony of a compliment on the sweetness of our obviously incomplete group sometimes seems nearly too much to overcome. It feels a little too much like an O. Henry story gone wrong. Shudder.)
When I announced we were going, G announced that he didn't want to do it this year, crying foul because I'd told him last year that he wouldn't have to do this again. It's true. I did. Then E got out Grandma's Santa pics and well, I changed my mind. I told him so, he wanted to argue. I called him over to where I was feeding Q and told him to remember that this isn't about him. Some things aren't. He giggled (he still does, sometimes). I said, "I have just one question for you. What are you going to say when Q demands to know why there aren't any more Santa pictures after 2007?" G said not a word, but returned a few minutes later wearing clean, less than usually rumpled clothes (he's that age and I'm not dying on that hill). I told all the big kids that they could wear whatever they wanted, but it had to be clean and not clashing (this part turns out to be open to interpretation). So they weren't dressed up (not dying on that hill either). I wanted happy faces.
Over the years, one comes to expect the unexpected in such undertakings. We've had cranky elves, way too happy elves, lines that lasted more than two hours, and no queue at all. Last night's line wasn't too bad. About half an hour of chatting, window shopping, and a change of Q's drooled upon sweater we were ready to roll. Santa was great, except for the minor numbness he seemed to be experiencing in his left arm. I'm still wondering if he went on to end his evening with a heart attack. But I digress.
Q couldn't take his eyes off Santa. In 2006, we solved that problem by having everyone look at Santa and all his rosy red and whiteness. This year, though, the photo people were determined, and Santa cracked jokes while they worked. We ended up with a decent shot of Q looking off to the side, at me. Snort. Santa did the requisite asking after Christmas wishes and we humored him. (S had said she didn't want to go because he was just a fake Santa and no one's seen the real Santa in several hundred years -- since he threw dowries down chimneys. Her older sibs talked her into compliance. Snort.)
We thanked the nice man and headed off to look at our nice pictures, Q draped over my arm. The lady came out with the package I'd ordered and showed me the sweet faces. She handed it to me. As I was turning to ask the kids to hand me my purse from Q's chair, she said, so quietly, "And it's on us." I was stunned. I'd seen the elves watching us while we were in line and wondered about what I thought might have been the pursing of their little candy cane-stained mouths. I may have actually said to her, "No way." I know I managed to whisper a shocked but emphatic thank you and turn around before beginning to sniffle. I'm pretty sure the kids noticed me wiping tears, but they didn't say anything.
What does one say? Sometimes, when coming from a preschool evaluation (more on that later), when tired beyond words, when working to repress being heartsick still at the implications of certain realities, it's just an awesome thing to have a little bit of a Christmas miracle with the mall Santa.
"Kiss those babies." --Dy
"And the one you made 'em with." --me
G'night.
copyrighted 2006-2011
C
at
11:59 PM
5
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Labels: once upon a time, Q, quotes
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
copyrighted 2006-2011
C
at
12:09 AM
2
comments
Labels: quotes
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.
copyrighted 2006-2011
C
at
9:00 AM
0
comments
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
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.
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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.
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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.
Throw your heart over the fence and the rest will follow.
--Norman Vincent Peale
copyrighted 2006-2011
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