tag:blogger.com,1999:blog-242896312024-03-23T11:27:46.584-07:00Dura MaterDura Mater: (Latin) Tough Mother.Chttp://www.blogger.com/profile/02851098760576370829noreply@blogger.comBlogger549125tag:blogger.com,1999:blog-24289631.post-65660741366968010822018-09-26T17:47:00.003-07:002018-09-26T17:47:57.666-07:00Deja vu, I guess<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: ".SFUIText"; font-size: 17pt;">I am nearly 48 years old. </span></div>
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<span style="font-family: ".SFUIText"; font-size: 17pt;">Just a few minutes ago while flying down the freeway with Q’s Coldplay Amazing Day singing away, I realized with a jolt why that polygraph needle bobbled. When the interviewer for what is probably the third largest LEO in the state asked me about sexual assault as part of my employment background check, there was “a little jump.” “Probably because it’s such a hot button issue.” That was 27 years ago. At that point I hadn’t yet realized that what happened six years earlier was assault. That would take me almost four more years, and the birth of my first child. </span></div>
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<span style="font-family: ".SFUIText"; font-size: 17pt;">My memory of telling my then husband about it, about nine years after the fact, is not quite as strong as that of the events themselves, but still something I revisit regularly. I had realized that there was a name for what happened and since the person in question was traveling in the periphery of our social circles, I thought it was important that the father of my child know why I didn’t want to do whatever it was that was coming up. He was appropriately incensed and compassionate, but I don’t think he quite knew what to say or do. What does one say? Do? To whom should one speak about these things? </span></div>
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<span style="font-family: ".SFUIText"; font-size: 17pt;">Time marches on of course, and the kids are practically all grown. They seem happy, well, hard-working, kind. Life is normal. “Normal.” I’m about to take Q into therapy. Normal.</span></div>
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<span style="font-family: ".SFUIText"; font-size: 17pt;">I think about this periodically, probably a few times a month, and have worked to make it insignificant. But between current events and this sudden revelation I’m shaking, my palms are sweaty, my stomach churning, and breathing purposefully to calm the heck down. I’m going to have to figure out how to attend to this foreign-feeling, newly-fitted puzzle piece. Maybe I’ll try that when my heart rate drops, then. </span></div>
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<span style="font-family: ".SFUIText"; font-size: 17pt;">Perhaps I’ll avoid the news for awhile and do a lot more running. </span></div>
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Chttp://www.blogger.com/profile/02851098760576370829noreply@blogger.com0tag:blogger.com,1999:blog-24289631.post-380968764289577612018-03-27T12:38:00.000-07:002018-03-27T19:58:37.301-07:00Remembering <div dir="ltr" style="text-align: left;" trbidi="on">
Today would have been a beloved Auntie’s birthday, and it is very much with us. Perhaps partly because it’s the first since her passing. The awareness of loss is great.<br />
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I happened to need to leave a vehicle for a kid at the park ‘n’ ride today, so I plopped it there and ran home. This is the first planned run I’ve done in eons, and the layers of significance just keep washing into my head now, like a rising tide. First and most obviously, my Aunt was a runner at my age, and having people in your life who Do Hard Things helps to create in kids (me) the idea that Hard Things Can, Should, and Must be Done. That my mother ran through her whole pregnancy with me - alongside my Aunt - is a detail I find most delightful. My Aunt died of pulmonary fibrosis, a hideous disease, after having successfully, concurrently, fended off lung cancer (for which she had no known risk factors). We spoke of running often, and how glad she was that it had become part of my norm, and then those of my daughters. </div>
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So today I thought about her while I ran. I have what seems to be exercise-induced asthma, and not regularly running makes it worse. It reminded me of that pulmonary diagnosis. Sucking air, bronchioles on fire, remembering, searing, mourning, counting, crossing, up, down, wave, breathe...</div>
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I though too about my friend, amidst her Guillain-Barre fight/journey/whatever story it will turn out to be. Whilst trudging uphill, slowing as the wind blasted harder, scrubbing my numbing face, speeding up over the rise, legs going numb from a cardiovascular system pushing past its baseline... Then flying down, down, praying that my bones would fall just so, GodBlessMuscleMemory, as the feeling returned to my toes.<br />
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I thought about writing, and the futility of planning to. And the absolute necessity of doing it, with or without the opportunity - just like running. Just like running, writing can play a major role in the saving of one’s soul. I remembered our conversations about spiritual and mental hygiene, about clarity and self-checking, about care for vulnerable populations, which are all of us. And about how to cram those hundred grams of protein into one person, every day. </div>
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I thought about the hydrangea budding in my backyard, my first ever, and how my lovely auntie’s bushes would be fluffing out now. I thought about our laughing at chemo, over cupcakes we took to share with the nurses - celebrating our respective wedding anniversaries amidst general hilarity, and being so, so grateful for our respective kids that those marriages produced. </div>
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I thought about the solitariness of running - a double-edged sword, and a persistent, highlighted feature in parenting, especially with kiddos who are medically fragile and/or have any kind of special needs. We talked about that, she and I. Alone time can be precious, and it can be just plain piercingly, exhaustingly lonely.</div>
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Good things, today... Being able to go. The wildness of the wind. Waving daffodils, a la Wordsworth, a la beloved Auntie. Remembering. Grief work in actual motion. Knowing how to spit carefully on an exceedingly windy day. Family with whom to remember, and to celebrate. </div>
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This evening I’m heading to an event that my Aunt went to annually, as long as she could. It’s a resource fair and legislative forum for the local disability community. There’ll be Kleenex in my pockets. </div>
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Go hug somebody, go read Lonely as a Cloud, and go, go, Go because you can. Smooch. </div>
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Chttp://www.blogger.com/profile/02851098760576370829noreply@blogger.com0tag:blogger.com,1999:blog-24289631.post-49740822967154800942018-02-21T20:46:00.004-08:002018-02-21T20:46:56.344-08:00Rundown<div dir="ltr" style="text-align: left;" trbidi="on">
It's snowing, its dark, there's a fire, and all the independent appliances are running, which seems like the perfect time to catch up. <br />
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The girls are busy as can be: E is a commuting geophysics major who secretly loves her hardest math and physics classes, even though she's there for the rocks; K made the dean's list in her first quarter in dual enrollment while working part time and playing as much music as she can; S is teaching four music students while rehearsing with two orchestras and studying, mostly for test preps. G is working and adulting, so we hear. And Q is, well, he's three months post-op from baclofen pump surgery, and trundling along. His scars look great. His para this year has him working with multiplication facts (he seems to know the answers - woo!), and he's having adventures with new school equipment (Rifton Tram), trekking like he means it, and practicing with door switches and innovative grips/handles.<br />
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This is a weird time of life, peeps. In the sixteenth year of homeschooling, I'm almost done directing educational pursuits. My role these days is more about chauffeuring, lifting, and tracking. S is ready to get her license, so I'll be down to just Q, mostly, with his five or six hours of therapies a week and rides to school (because we're not doing the bus at 6am, thanks). Well, and then hauling folks to the train station. The lifting requires training-for these days: 70lb chair will soon be 90lbs when the new setup arrives, and the boy himself is north of 82lbs. The tracking bit is mostly calendar wrangling, but also trying to stay on top of the congruence of All the Things - medical, physical, research news, anticipating emotional needs...<br />
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During Q's OT session today, I was reading Neuroscience News and frankly grooving on the report that the Salk Institute has identified 11 discrete groups of V2a neurons. This means that, beyond the two groups they had been able to see, differentiating limb movement based on location within the spinal column, by using single-cell RNA sequencing they're more able to nail down the difference in molecular profile, and thereby the difference in roles. This will eventually be enormous for stem cell therapies, especially for spinal cord injuries, but perhaps also for congenital diagnoses. The thing I'm finding compelling about this info is that Q's baclofen pump has revealed just how much he's relied on tone vs. motor planning to accomplish tasks. He's having to work over the lack of tone to manage reaching, grasping, stepping, and even some posture/positioning. Right now, his left-leaning upper thoracic scoliosis is kind of winning, a little bit. We've got work to do there, and will see a couple of ortho people March 13 to get that ball rolling (fingers crossed, eyes heavenward - at least the worst of all ortho surgeries has already been had). But the news about the V2a neurons helps the Qpuzzle to feel less... persistently opaque.<br />
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The things I know we can do for Q now include assertive nighttime positioning, countering that curve and stretching his hamstrings. Both of those are going reasonably well, with the caveat that he's pretty bugged by any phlegm at all in his throat, so not puking is prioritized over optimal skeletal/soft tissue supports. But that's just a little better than it was last week. Additionally, he needs more systemic feedback (proprioceptive and vestibular). He needs to be wiggled and jostled and bumped around. A lot. When he was smaller this was easier in that he fit nicely into a modified REI backpack which I wore while teaching the big kids, and he was easier to hoist into and out of a variety of other setups, including his WIKE. But the WIKE is tougher and tougher to get him into and out of. Between his own body formation and the low height of the WIKE seat, I can't take him out without the help of at least one burly child/sherpa, just because I can't get him into or out of it. I hear that there are nifty racing chairs out there, but I haven't gone down that particular rabbit hole.<br />
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There's more, of course. I think I'll have to come back to talk about the other equipment issues and how to keep Q out there, defying gravity. As it were.<br />
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Meanwhile, here's to a good, long sleep, and hugs to give. Mwah.<br />
xo<br />
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Chttp://www.blogger.com/profile/02851098760576370829noreply@blogger.com0tag:blogger.com,1999:blog-24289631.post-19180752620795765072017-05-13T00:02:00.001-07:002017-05-13T00:02:23.364-07:00May flowers<div dir="ltr" style="text-align: left;" trbidi="on">
Today was another of those long appointment days: dentist, then pre-anesthesia clinic, home for lunch, then off again for PT and speech. The boy had a tooth pulled (no more double row), got the med dosing plan for next week, did some good swimming in PT, and told his speech therapist that he needed chocolate. She fed him pudding, because if you can ask (and confirm with "yes"), you should have it.<br />
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Last weekend we did Bloomsday, with my mom and Q and I walking, the girls running (behind their Auntie), and my dad and my brother mountain biking while the rest of us were on the course. The weekend kept us hopping. My mom ended up needing a little medical attention Saturday night (she'll be okay, I think), and my dad took a heckuva spill off his bike, just as they were returning to the parking lot at the end of the ride. He's had surgery (pins in his femur) and is rehabbing now with an eye toward summer projects and hopefully some fun in seven-ish weeks. I think we'll never have another weekend quite like that one.<br />
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At the risk of sounding whiny... I am done with the rain. This week we topped fifteen inches over our annual average for this point in the water year. It's hard to get outside enough to stay on top of the itinerant dandelions, never mind getting to the rest of the work. We have had a handful of really beautiful days, which have produced apple blossoms, pear blossoms, cherry blossoms, and even some baby nectarines, which look like tiny alien fruits for the time being. The fig is leafing out, the rhubarb is tall, and this year's miracle of miracles: the quince is blooming! It's resisted like mad, but maybe the cold snap(s) of the winter did the trick. The lilac is getting ready to open, the peonies are stretching tall, the fat-leafed bottoms of the hollyhocks are mounding up, the chives are blooming, and the grapes are unfurling. It's a slowly building cacophony out there. <br />
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In other news, the school year is wrapping up, ready or not. As usual, we'll have work to continue through the summer, and we'll be prepping soon for the fall. The deadlines for summer classes and summer deadlines for fall are all queueing up. It's true what they say: the days are long, but the years are short.<br />
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Off now to sleep and pop up again in the morning. Love on those punkins.<br />
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Chttp://www.blogger.com/profile/02851098760576370829noreply@blogger.com1tag:blogger.com,1999:blog-24289631.post-75916686871746399462017-01-28T13:42:00.003-08:002017-01-28T14:08:28.543-08:00All along the watchtower<div dir="ltr" style="text-align: left;" trbidi="on">
I'm writing from the couch, with a fire in the fireplace on a grey day. Q is communing with the curious old lady cat, who came to visit and see what his tube feeding and meds were all about this morning. She remains on his lap where she intermittently flicks his nose with her tail, much to his delight, while he maintains a purposefully gentle grasp on her leg. E and S are still asleep, even though I have <a href="https://www.youtube.com/watch?v=UBumTrKL-50">Rattle and Hum</a> playing not softly. K is ironing, bless her sweet heart. The cloth napkins and tablecloth needed help, I guess.<br />
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A lot of water has flowed under the bridge since Q's procedures... Mostly, we're grateful to be done with the vomiting, or mostly done, anyway. I think this puts him at about five months to recover from the extra nudge on the gag reflex from being intubated. Initially, this adversely affected his weight gain, because, as you might imagine, losing an entire meal once or twice a day is problematic. But as of this week, he's up not quite ten pounds since the tube placement (lost a couple of pounds at first, so he gained all this since mid-October). We're all feeling it, like crazy, and I'm scrambling for modifications and reorganizing the house to help alleviate the increasing physical strain of this suddenly strapping young man.<br />
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All the other areas of recovery were pretty good, though. He needed more eye ointment than we'd initially anticipated, but again, healed quickly and thoroughly. Which reminds me, I need to get him back in for the final follow-up ophthalmology appointment. It's also time for another dental visit. Since Q doesn't chew much food, he doesn't have the necessary stimulation to get the roots wiggling on loose teeth. So he has a single shark tooth situation going on right now. It's kind of adorable, but probably not all that comfortable.<br />
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The girls are toddling along. E survived her first quarter on the University campus, and as sort of a junior, too. She's playing viola with the symphony, and is ecstatic to be with a group of mostly music majors and minors. K and S got to attend the concert this last week, and were duly impressed with the sheer musicality of the talent. Heh. K is getting ready to stretch her own educational wings via the local community college, wrapping up her homeschooling adventure, while S has just begun the high school portion of her last years at home. They're tracking well as individuals, growing the skills they'll need to wrangle their upcoming forays into adulthood. Not that its a seamless thing, mind you. Growing humans isn't a smooth process at any stage. But it's pretty neat to watch their innate abilities, character, and thought processes take on a certain polish as they reach for their goals, educational and otherwise. That they enjoy things like They Might be Giants is a nice bonus.<br />
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These days, I'm spending most of my time running people to therapies, work, or orchestra. In a close second is the management of paperwork, especially as it pertains to disability issues and medical appointments. Those are followed by the re-configuring of the house, as I mentioned. It's a little weird to note how much home life changes with the ages and needs of the occupants. Suppertime is later for the girls because of rehearsals, classes, and that one work schedule. Occasionally, I'm at home without anyone else here for a half hour or so at a time and I hardly know what to do with myself. Sometimes Grandma does some of the running around, bless her, and then I have longer stretches to catch up laundry, etc.<br />
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What else? The garden is its wintry self: crunchy some mornings, gray and brown, with tiny sprouts of green, here and there. The magnolia stellata is putting on fuzzy buds, getting ready for March blossoms. The wee evergreens we found for a dollar or two last fall and chucked quickly into the dirt are in various states of disarray. They look like they've been working hard to survive the couple of weeks we had of subfreezing temps. K and S and I went out and stole (shh!) leaves from right of way areas and used them as garden mulch. Despite some hefty winds, they're still there, trying to help us with our attempts at small-scale <a href="https://en.wikipedia.org/wiki/H%C3%BCgelkultur">hugelkultur</a>.<br />
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We didn't have any major evidence of wasps last summer, thank goodness. K was helpful with setting up the traps, since I'm not supposed to involve myself with that anymore. Here's to the coldness having put down a few of the possible queens for the coming summer. The baby upright apple trees also made it into their new garden spots, and seem to have survived. I'm hoping for more fruits than the two surprise babies we had from the one tree. The raspberries probably need transplanting this year...<br />
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In the bulb world, we're looking forward to new <a href="https://en.wikipedia.org/wiki/Fritillaria">fritillaria</a> this year - K's pick from the bulb sale last fall. The front tulips waited to stick out their noses until after the New Year this year, as opposed to early December last season. And despite our very best efforts, there are still tulips coming up under the ramp. No idea what to do about that, since we keep transplanting them, and there just keep being more... Silly overachievers.<br />
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K, in true farming genes fashion, began planning the spring plantings in November. S asked, amid a snow flurry a couple of weeks ago how long it would be before we could start working in the yard again. There's nothing quite as lovely as being outside, hands in the dirt, bringing certain things to heel and setting others free... Which reminds me: the Greek oregano needs minding.<br />
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My friend, Sarah, has been posting quotes from Thomas Aquinas today, which are inspiring me to do some real and deep reading. I think I'll do some, right after I give Q lunch.<br />
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If you could, my brother (and his wife) could use bolstering prayers as he barrels through chemo, while enjoying the outdoors as much as possible. I hope you all are well and profoundly blessed, wherever you are and however your garden grows.<br />
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<a href="https://www.youtube.com/watch?v=_dAV5-ZzpZI">Love one another... </a><br />
John 13:34,35<br />
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Chttp://www.blogger.com/profile/02851098760576370829noreply@blogger.com0tag:blogger.com,1999:blog-24289631.post-44487383563227195342016-08-15T17:06:00.002-07:002016-08-15T17:06:59.919-07:00Q news<div dir="ltr" style="text-align: left;" trbidi="on">
I'm writing from the surgery waiting area at our Children's Hospital. Q is asleep now and various co-ordinated specialists are working away. This is something I try not to think too deeply about, since I'm acutely aware of the details anyway. He should be awake in an hour or so, and we'll get busy with Life with a G-tube.<br />
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The decision to go ahead with this was validated especially this summer as we've been enjoying time with family. Many days, especially highly active days, don't offer themselves up as easy ones in which to manage pureed foods at the perfect temperatures, eaten at his pace, out of the wind, etc. Another plus will be dosing certain meds without Q having to taste them. One in particular tastes like nuclear waste, and it's not going away any time soon.<br />
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Q's medial eye muscles are also being adjusted to counteract some of the exotropia/strabismus he's had since he was tiny. I'm hoping that all of these "small" adjustments will be bearable for him and truly improve his daily life, allowing for less energy to go into gathering adequate calories and more energy to go into cognitive and physical goals.<br />
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Speaking of goals, Q continues to work with his magnificent speech device, and is making small but significant and steady headway. Since so much of his interaction at every level depends on his having a fast enough and precise enough motor plan to pull off the desired result, we work on the small targets, with a calm body, rather than allowing larger, jerky or "bashing" movements. It's paying off in many important ways, but perhaps the most important one is that he has an expectation of being heard and involved in his own activity. The coolest thing ever (I think) is that this expectation has resulted in his replying when other people are trying to engage him in conversation. He has begun to vocalize a "hi" quite predictably upon seeing his favorite people, and to have an almost as enthusiastic smile or sound for other folks who speak directly to him as though they're expecting a response. This has also happened in conversation, when someone has asked him a question or series of questions, and it's almost easy to miss. Because who doesn't expect a young man to respond when spoken to? or to comment upon something he finds particularly awesome or regrettable? It's a lot of fun to hear this play out in person, especially when the whole scene sort of materializes in front of you, suddenly.<br />
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At the end of last school year Q's suspension gait trainer helped him to walk about 300 feet, chasing a soccer ball. So we borrowed the nifty contraption for the summer, hoping to get outside with him a lot, but we really haven't. Between weather and scheduling, the opportunities have been fewer than I expected.<br />
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They're wrapping things up now, so I should too. (How does that happen, anyway? I barely had time to get the rest of the stuff out of the van and eat a salad.) More news later.</div>
Chttp://www.blogger.com/profile/02851098760576370829noreply@blogger.com1tag:blogger.com,1999:blog-24289631.post-5325034139913607322016-02-02T20:25:00.000-08:002016-02-04T22:34:37.571-08:00Feeling Better<div dir="ltr" style="text-align: left;" trbidi="on">
"Pastors hear/see a lot of theologically spurious statements they choose to graciously ignore. However, sometimes a pastoral PSA is needed. When you make the choice to steal a car, cheat on a spouse, abuse your kids, or any number of selfish acts, please don't suggest Jesus led you to do so. That's worse than saying, "The devil made me do it." I understand that "things happen," and when they do own it, embrace grace and forgiveness from Jesus, and make amends as far as possible; but don't try to tell me He made you sin. Not only is that unbiblical (see james 1v13, Matthew 6v9-13, John8v11); but it's entirely the opposite of what Jesus intends for us. Jesus came to destroy selfishness, not sanction it."<br />
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A pastor friend posted this today, and I've been reflecting, shall we say. I'm not sure I can really add to his thoughts, but that doesn't mean there isn't more to say from additional perspectives.<br />
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Invariably, people who undertake monumentally selfish acts seem blind to the concurrent realities of those living with or nearby them. Sometimes this is the result of a literal stroke of diagnosable Narcissism. "My needs are my needs and therefore yours do not exist." Sometimes this is instead a result of environmental conditioning, some other form of mental illness, traumatic brain injury, addiction, or immaturity. Whatever the cause, too frequently people who wander blithely down the path of self-fulfillment at nearly any cost are also parents or function in a parental role. Sometimes they're also in leadership positions that make their destructive choices particularly widely painful.<br />
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When a person is capable of practicing reason, though, the causes become somewhat less relevant, while other details snap into focus in the foreground. Those of us witnessing the trainwrecks they set in motion can use our own grasp of socially acceptable behavior and life choices and faith to help recognize folks who are able to tell the difference between right and wrong, and therefore hold certain groups to higher standards. Certain professional groups have a higher fiduciary duty, for example, and most of us would say that the same should apply to parents.<br />
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So how does this work out for children whose parents see no problem twisting scripture (and not just the Christian Bible) to suit their wants? Predictably badly. Wallerstein, et al, address aspects of this in <u>The Unexpected Legacy of Divorce</u>, a somewhat horrifying read. The "sins of the fathers" show up, alright, and usually in ways adult children have sworn and committed to not drag their own kids through. And yet...<br />
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A couple of years ago I was chatting with a friend about hot topics in the global church and we ended up wondering together how to distill Jesus' message for the modern world. All the "A new command I give you: Love one another as I have loved you," and "Love your neighbor as yourself," taken apart and rolled back up, so to speak. One of my proposals was that the theology of Jesus pretty strongly supports healing acts, whatever those might look like. As in, maybe, "Guys, let's have less suffering." <br />
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I don't know about you, but by this point in my life, I am so ready for less suffering, more healing, and I can easily imagine Jesus enthusiasm for this. I think his language surrounding the meek and the suffering (Matt 5-7) reflects this. I think his invitation to cherish children and protect the innocents reflects this (Matt 19:14, Luke 17:2). I think his flipping of the tables in the temple reflects this - who in their right mind walks into a temple and tries to cheat those who've come to worship? Who does that!? Those who were comfortable making a temple into a den of robbers, that's who (Matt 21:12, 13), and who were Just Fine with the risk that someone in authority would figure them out and destroy their "business."<br />
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If we proceed on the principles that Jesus is for less suffering and against taking advantage of people, we have rather a lot of material to discuss, which I'm not especially interested in delving into here. Except for the parts relating to my pastor friend's quote.<br />
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While I have no specific knowledge as to the possible prompts for that opening quote, I've got some train wrecks in mind. Yesterday afternoon, three boys, 13, 16, and 17, were arrested for murder and attempted murder, after they bragged about the incident to undercover cops and other witnesses. Their mother sent them from their own homeless camp to another homeless camp to collect on a drug debt. Two people are dead, three more recovering, and these kids... Their lives are over. I cannot begin to imagine what propelled their mother into living in a tent with her three sons, or dealing black tar heroin, or making sure they had two guns with which to do their business. I cannot remotely grasp what stunning trajectory resulted in this irredeemable act. I mean, who does that!? *Someone who is Just Fine taking those risks and placing her children in the middle of taking responsibility for choices they cannot possibly understand, that's who. <br />
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That's not most of us. I know that's not most of us. And yet... What about those of us who just want to be happy? Who just want to feel loved? Or have that car? Or feel powerful, in some way, for crying out loud? We all just want to feel better, really, and that's not so hard to understand, wanting to feel better. Yeah, except when it costs something that we're not willing to pay. To use the initial examples, you wouldn't want to exchange places with the kid on the receiving end of your ire, or have your own car stolen, or be cuckolded (so to speak). Even if you deserve it.<br />
<br />
But here's the thing. If you're someone's parent, those choices are now much less complicated. "Feeling better" needs to be tied to the outcomes of your kids. Because you have them, you owe them that, and then some. Being a moral human is now an obligation that's taken on epic importance, and it needs to begin with redefining how you're going to make yourself feel better. You're the adult, and you need to act like it. <br />
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If you're in the middle of justifying an action by attributing your desire to self-soothe to the Almighty (and I realize how unlikely it is that anyone fitting that description will see this), knock it off. I mean it. You've got a bazillion ways to think about whatever it is you're doing that DO NOT involve lying to yourself or becoming the kind of person you don't want influencing your children. Does that seem a little too far-fetched? Too "out there" to describe your choices? Then keep in mind that a child's first picture of God is his or her parent(s). "Whatever is good, whatever is true..." is not equivalent to the nonsense claim that children just want their parents to be happy (A lie. See Wallerstein.).<br />
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Kids are great at seeing through their parents, no matter their ages. They're never as interested in what you say as they are in what you do. If you're a parent who hopes to raise those kids into adults who love Jesus, are active in the church, and relate responsibly toward your grandchildren, then you have to knock it off. You cannot expect to engender in them an appreciation for a God who is Love while you destroy the other half of their DNA, wreak havoc on their home, do time for your theft and fraud, or just reframe the whole world to support your stinky, manipulative behaviors. No matter how you couch it with them, no matter what their developmental stages, there's no better way to make sure they're not interested in the Jesus you claim to follow than to fulfill your role as their example by being faithless, controlling, abusive, or "just" pathologically selfish.<br />
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If you're really interested in Feeling Better, find a good counselor and lay yourself bare. Begin by stating how deeply committed you are to every level of personal work required to do this, and end by committing again to being vulnerable and doing your homework. Excruciating as it may be, and oh, will it ever be, it's pure joy compared to looking around and realizing that you undercut everything you were supposed to protect. With the help of that counselor, execute plans to change your behaviors so that you can apologize and mean it, and get busy earning the respect you want to see in their faces.<br />
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Isn't that what we were supposed to have learned from Jesus' example, anyway? Self-sacrifice, in order to lift up what is noble and beautiful, despite our urges to the contrary, in order that those who look to us for leadership may yet rise, too. "Guys, let's have less suffering. For such is the kingdom of heaven: wholeness begat by the Love that I am." More frequently than some would like to acknowledge this means finding new ways to die to self, asking trusted friends to help us, and admitting uncomfortable things to those whom we've wronged. This includes defining and redefining what it means to really Feel Better.<br />
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___________________________<br />
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And if you're feeling desperate about this kind of thing or anything else, call a friend or call 911, and say so. You are <i>needed</i> here, and as long as you are here, there is so much potential for help, goodness, and redemption. All things are possible, and there is <i>always</i> a reason for hope. If you can't feel that right now, let someone else carry it and believe it for you. <i>Do not give up</i>. We are all in this together.<br />
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(*The roles of neurotransmitters and epigenetics should figure large in this kind of conversation, but another time.)<br />
<br /></div>
Chttp://www.blogger.com/profile/02851098760576370829noreply@blogger.com0tag:blogger.com,1999:blog-24289631.post-73531044181758951352015-11-04T23:44:00.000-08:002015-11-04T23:44:23.063-08:00November begins<div dir="ltr" style="text-align: left;" trbidi="on">
Fall is finally here, with a light freeze last night. The purple peppers, yellow summer squash, figs, and wee acorn and butternut squashes came in. It was chilly enough to wilt the tomato bushes into mush, but not cold enough to completely discourage the honey bees or the yellowjackets. There's one spot that harbors an in-ground nest that's been problematic for a few months now. I'd hoped that today we'd finally gotten to weather that would allow some digging up and drubbing of that particular location, but alas. K and I went out to trim the seed heads off the bronze fennel (injuries have us tag teaming pretty much everything these days) and made it halfway through before the first honey bee appeared, and had just finished when the yellowjacket landed on me. Since my last run-in with this bunch of wasps resulted in steroids and an epi-pen, we were done for the day. Never have I wished so for a good, hard freeze.<br />
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The yard. Well... Our late summer and early fall were sort of devoured by injuries, allergies, and appointments. Since school started, we've been lost amid the piles of books, calendar management, and practices of various types. So the back needs those trellises and supports stuck into their quikcrete, the ramp needs someone to crawl under it (haha), and the weedy bits need black plastic stretched over them. Winterizing is going to be hit and miss, I'm afraid. Although, if the current weather pattern keeps up, we'll be weeding well into December. Last winter, the tulips started coming up Christmas week. Perhaps we'll have a similar experience this year? Meanwhile, I'm going to try to be more patient about not being able to dig, pull, or lift - so many things to transplant to more favorable spots!<br />
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Q is well, if a bit confounding lately. We've had some slight changes to meds in an effort to eliminate the myoclonic jerks he's been experiencing. So far, no change. He's more or less unperturbed by these events, though, so we're all just monitoring for the time being.<br />
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Equipment needs are in flux again, since he gained eight pounds in ten months and outgrew everything. New wheelchair seating, foot and hand splints, and sit to stand stander are all in the works. I'm wondering about trying to figure out an adjustable bed, too, since we're all having a tougher time minding good body mechanics with dressing and other personal care needs. I need to think a little more on some of the details and pursue a variety of helpful supports, some of which I'm only vaguely aware at this point.<br />
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And now we sleep. Appointments tomorrow. <br />
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Chttp://www.blogger.com/profile/02851098760576370829noreply@blogger.com0tag:blogger.com,1999:blog-24289631.post-23958733906539254862015-07-25T18:46:00.000-07:002015-07-25T18:48:04.562-07:00Race Report<div dir="ltr" style="text-align: left;" trbidi="on">
It seems we've become a family of runners. We've slowly increased our mileage over the last few years, as the bigger kids have been increasingly able to take on more and have been increasingly interested in doing so. The race fees haven't been easy to come by (the kids work and save up), the shoes and other gear have required rather a lot of planning (and sales at Amazon on past year's models), and the learning curve for running with offspring... Well, it's a curve, for all of us, but definitely worth it.<br />
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Almost three years ago, we tentatively stuck our toes into a 10K, because by then running a 5K in intervals was a regular thing, just for burning off steam and PE. We'd had to take a break from running with Q because we, uh, broke his "all-terrain" chair (oops) with things like 9-10 miles per week and that attempt at the long jump, which the big brother will have to tell you more about one day. (Q couldn't have been happier about that adventure, by the way.) Amazing and kind friends sent us a <a href="http://www.wicycle.com/index.php/products/special-needs-trailers/wike-large-special-needs-trailer">WIKE Special Needs jogger stroller/bike trailer</a>, which has been completely life-altering for many reasons. Probably the most important being that Q likes to go as fast as possible, which is much easier when we can have him on wheels, because he's still growing. <br />
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With that lovely piece of equipment, we struck out into new territory: local paths for biking, increasing gradually to 22 miles down a trail from a mountain pass, and regular rides of similar lengths. Last spring we tried out running 12Ks, and repeated them this year - one with small hills and one with two looong uphills. This year those two races were a bit harder than last because the boy grew, gaining about 8 pounds over that time period. I'd also needed some PT after wrenching my back getting him dressed, which was annoyingly debilitating (why don't we just have replacement parts, anyway?), and which meant more careful training this year than last.<br />
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We'd discussed our next plans a few times, including a local run that's a bit like Ragnar (but shorter), and the possibility of finding a 15K or similar. In January, we started running longer distances nearly every Sunday morning, supported by Grandma. Thanks to a very mild winter, we hadn't really had much downtime (no hail in our ears this year - much to Q's chagrin), so it was comparatively easy to add a half mile or a mile every couple of weeks, while maintaining a couple of shorter runs during the week (2-5mi, sometimes with stairs, sometimes with Tabata sprints, sometimes with general bodyweight circuits). In May, we shifted to longer runs on Sundays, then 3mi on Tue, 4mi on Wed, 3mi on Thu, with rest and "crosstraining" (yardwork for the win!) on the other days. By June, the Wed runs were 5mi, and the miscellaneous cross-training was back in for two days a week - some of which looked a lot like PT exercises, including stretching and foam-rolling.<br />
<br />
In the middle of this, I opted to not run with Q when our distances were above roughly 10mi with an outdoor temp above 85 by the end of the run. Trying to keep him cool enough and hydrated can add an extra 30-60min to an already long time in the heat for the rest of us, plus we started experiencing some wear and tear issues with the Wike. This has not floated his boat, even though it has meant he instead spends time finding bullfrogs, beavers, and blackberries with Grandma and Grandpa.<br />
<br />
The last weeks have been busy and scattered - kids with different obligations, our summer program at church, etc., preventing longer Sunday runs. After having hit the 12.15mi mark, not having those longer runs felt a little weird. We ran 8mi last Sunday, then 3 and 2 for the rest of the week, with some light circuit work. At 8 this morning, my mom dropped the girls and I off at a local middle school and we joined 171 other runners for a half marathon in the rain, over a course of various terrains.<br />
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Highlights: the racing couple arguing hilariously about when the whining should commence (now - less than a hundred feet past the start line), the mile plus of mucky trail with tree roots and a couple of waterfalls, running through the ravine where the bridge had collapsed closing that piece of trail except for race day. Also: running most of the race with my (gulp) adult daughter and kibitzing as we went, S coming in third in her age group at 2:22 (8min ahead of her goal), 55 degrees F start temp after weeks of unseasonable highs in the 90's. It was fun to follow the orange arrows off the side of a gorgeous arched bridge, into the valley by the river, through a couple of fields, up a newly chip-sealed road that squeaked under our wet shoes, and onto the shoulder of a highway where the trucks full of four-wheelers waved and gave us nearly a lane to ourselves, before we met the paved trailhead.<br />
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The race support was fantastic: water at four stations along the route, with <a href="http://www.amazon.com/GU-Original-Nutrition-Energy-24-Count/dp/B00CQ7QDQA/ref=sr_tnr_p_2_16318341_1?ie=UTF8&qid=1437873624&sr=8-2&keywords=B00283EPLC|B006VKZDDM|B007FPZYVI|B00CQ7QDQA|B00L8TCSU2">GU</a> and Gatorade at an additional three. The volunteers were terribly supportive and encouraging (and maybe glad that the alert County Search Rescue team were kept bored?), and the folks at the finish line positively exuberant. They had plenty of bananas, Rice Krispies treats, whole oranges, and Propel water bottles - all of which were gratefully received. Thanks to the grandparents, we have nifty photos of Q ringing the bell at the finish gate, and of our muddy feet. We are tired, but happy, and (having soaked feet in Epsom salts) might even want to do all this again... As much fun as the irregularities were, I hope the trail and bridge can be completed soon - then Q could join us on this route.<br />
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I slowed down as we were within the last couple of miles. I'd run all but maybe a mile of the course - walking parts of the slippery single-track trail and stopping briefly for <a href="http://www.amazon.com/GU-Roctane-Endurance-Energy-24-Count/dp/B00CQ7QDHE/ref=pd_sim_121_3?ie=UTF8&refRID=02BRFXVW7ZCHE9PC8GBC">GU</a>, drinks, and portapotty. God bless the volunteers with the hand sanitizer. This meant more consecutive miles and less use of intervals than ever before, and my knees and hip were making themselves known. K had slowed too, having similar issues, so we stretched a little and she took off again, finishing a couple of minutes ahead of me. I think if I hadn't stopped, I'd have come in under three hours. My time was 3:04, which I'm more than happy with.<br />
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We're home and cleaned up (I have never loved a hot shower in quite this way), the muddy shoes are drying by the door so they can be tidied, the two very old CamelBaks are empty and ready for next time, and with everyone fed we're much less wobbly than a few hours ago. Q has even decided to make eye contact again - possibly forgiving us for not taking him along this time. The medals are shiny, the technical shirts really nice, and best of all - the proceeds have gone to trail maintenance and construction.<br />
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The air out there smelled so good today. Of wet earth, clean evergreens and ferns, fresh wild edibles, damp rocks, and a complete absence of wildfire smoke. Luscious. A blessed way to spend a rainy Saturday. <br />
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You should come next time.<br />
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P.S. WE TOTALLY RAN A HALF MARATHON!!! <i>RAN!!!</i> A LOT OF MILES!!!!!!!! <br />
I wonder if there's a really inexpensive one nearby before Christmas..........</div>
Chttp://www.blogger.com/profile/02851098760576370829noreply@blogger.com4tag:blogger.com,1999:blog-24289631.post-13317286499431056162015-02-24T21:53:00.001-08:002015-02-24T21:53:26.305-08:00Will<div dir="ltr" style="text-align: left;" trbidi="on">
Nothing truly stops you. Nothing truly holds you back. For your own will is always within your control. Sickness may challenge your body. But are you merely your body? Lameness may impede your legs. But you are not merely your legs. Your will is bigger than your legs. Your will needn’t be affected by an incident unless you let it.<br />
~ Epictetus</div>
Chttp://www.blogger.com/profile/02851098760576370829noreply@blogger.com0tag:blogger.com,1999:blog-24289631.post-78590742183126775802015-02-04T12:47:00.001-08:002015-02-04T12:47:15.151-08:00Reminding<div dir="ltr" style="text-align: left;" trbidi="on">
<ul><h2 style="font-variant: small-caps;">
<span style="font-size: small;"><span style="background-color: rgba(255, 255, 255, 0);">Good Timber</span></span></h2>
<ul><span style="background-color: rgba(255, 255, 255, 0);">by Douglas Malloch</span></ul>
<span style="background-color: rgba(255, 255, 255, 0);">The tree that never had to fight<br />For sun and sky and air and light,<br />But stood out in the open plain<br />And always got its share of rain,<br />Never became a forest king<br />But lived and died a scrubby thing.</span><br />
<span style="background-color: rgba(255, 255, 255, 0);"><br /></span>
<span style="background-color: rgba(255, 255, 255, 0);">The man who never had to toil<br />To gain and farm his patch of soil,<br />Who never had to win his share<br />Of sun and sky and light and air,<br />Never became a manly man<br />But lived and died as he began.</span><br />
<span style="background-color: rgba(255, 255, 255, 0);"><br /></span>
<span style="background-color: rgba(255, 255, 255, 0);">Good timber does not grow with ease:<br />The stronger wind, the stronger trees;<br />The further sky, the greater length;<br />The more the storm, the more the strength.<br />By sun and cold, by rain and snow,<br />In trees and men good timbers grow.</span><br />
<span style="background-color: rgba(255, 255, 255, 0);"><br /></span>
<span style="background-color: rgba(255, 255, 255, 0);">Where thickest lies the forest growth,<br />We find the patriarchs of both.<br />And they hold counsel with the stars<br />Whose broken branches show the scars<br />Of many winds and much of strife.<br />This is the common law of life.</span><br />
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Chttp://www.blogger.com/profile/02851098760576370829noreply@blogger.com0tag:blogger.com,1999:blog-24289631.post-51933129233442204802015-01-16T22:46:00.000-08:002015-01-16T22:46:37.077-08:00Hello, 2015<div dir="ltr" style="text-align: left;" trbidi="on">
As Q was having another layer of foam triangles applied to his tray today, I was thinking about how alienating equipment can be. It's such a good thing to have access to and use of so much excellent technology, and yet... As I was watching the magical OT work, it occurred to me that the rest of the world is experiencing ever-shrinking devices and ways of acheiving access. While Q's chair looks more and more like a small armored vehicle. Well, not quite, but I do wonder how much it weighs with the Accent, the support arm, the tray, and the various foam supports and/or <a href="http://www.rehabmart.com/product/universal-switch-mounting-system-with-friction-knob-35129.html">universal mounts</a>.<br />
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I've been saying for a few months that Q is in an amazing place of balance for meds that work but don't have wretched side-effects, for equipment that's working for him, and for growth and medical trajectories. It really is amazing: no seizure activity since starting meds, better everything for his tummy (it's kind of fun to see a truly dleighted pediatric GI doc), botox working well for those pesky upper extremity issues, and more. It's a place we've been enjoying.<br />
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After the summer's bizarre path to obtaining the Accent (a delightful combination of HIPAA violations and a frightfully persistent SLP who earned her halo), we've been working to learn new stuff - like how to incorporate Q's voice into every day, when we haven't been used to hearing such big words from him. Today, he played the ice cream cone color game with his SLP, building a cone by taking turns identifying the colors she hinted at and picking his own. He's terrifically vocal when he works with the Accent, frequently throwing a word into the mix, and it always makes my head spin for a moment, watching him transform into a kid who expects to speak and be heard. The learning curve with this is steep, and I always feel like I should be doing more - like pushing harder for the one to one I asked the District Special Services for during his school days. Have to make another phone call next week.<br />
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The girls are doing well. E wrapped fall quarter of her second year of dual enrollment with a 4.0, and works a few hours a week. K and S are swimming along through their respective school years, filling binders with writing, maps, and outlines, practicing music, and discovering new material across their subjects. All three continue with orchestra - tour in the spring, and running - 11.57 miles this week. And as of January 5, G is in the Navy. Amazing stuff, this growing up business. </div>
Chttp://www.blogger.com/profile/02851098760576370829noreply@blogger.com1tag:blogger.com,1999:blog-24289631.post-72223624794148174792014-05-21T00:25:00.000-07:002014-05-21T00:25:54.104-07:00Update<div dir="ltr" style="text-align: left;" trbidi="on">
So Q had the procedures in March (lateral releases on eye muscles, botox for upper extremities, and removal of hip hardware), and they went well. I opted to skip the post-op Ativan, which seems to have been a good choice: he still woke up mad, but was distractible. The orthopedist prescribed diastat for muscle spasms, which I wish we hadn't had. Fortunately, the duration of the dosing was short enough (because I called the neuro office the next day and asked for a titration plan) that it only took us four additional days to get off of it. It was still enough time to mess up the sleep issues, and yes, per the neuro visit today, it was the diastat that did it. Dagnabit.<br />
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Going forward, we will avoid Ativan and diastat, substituting something like Flexeril if muscle spasms are a concern. In a few weeks, we'll revisit the issue of effectiveness for the sleep meds. A slight dosage increase would be fine, if needed. There've been no breakthrough seizures, so no dosage changes to those meds, for now. When he asked for updates on Q's therapies, I was reminded again why we drive so far, with traffic, and often wait a long time to see this doc: he went positively mooshy.<br />
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Q often does his power chair driving practice with a friend who is practicing driving a car that he operates with a switch pad and one thumb squeeze. The first time they were driving together, Q bumped his friend, who seemed fine with the initial bonk, but cried at the second bump. Q has since learned to approach his friend slowly (no mean feat with a head switch), getting within a couple of inches, while trying very hard to be careful so he can chase his friend again when the friend is ready to take off (his car goes faster than Q's chair, so Q has to pay attention and really work to keep up).<br />
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Since beginning to work with an AAC (speech) device, Q has shown a preference for things that are funny: games, stories, jokes, riddles. I described this to the neurologist today, mentioning that Q will go to the "HAHA" button if the audience is too slow responding to his knock knock jokes. And he'll skip straight to the punchlines if he thinks you're not paying attention. I swear the man had a tear in his eye. He said, "This is what we've hoped for, isn't it? That Q isn't just an observer or recipient of the world around him, but that he initiates social interactions, and is effective, despite being non-verbal and having motoric limitations. This is him working around things to develop cognitive opportunity."<br />
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Why, yes.<br />
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Also this week, Q sees the ophthalmologist for the two month check-up. I'm so hoping she'll say that what she did worked. "Stuck," if you will. The bleeding into the whites of his eyes looked atrocious, and I'd hate for him to have to undergo the same procedure again too quickly. Immediately following the ride home from the outpatient procedures, Q was using his eyes more completely, experiencing a greater range of motion, if you will, so he's not looking so wobbly about the head.<br />
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The botox also seems to have gone exceedingly well. The most obvious feature of this is that Q's easier to dress - all the teeny adjustments necessary as one wrangles arms into and out of sleeves are just a little more gently made, in most directions. He can more easily isolate his index fingers, hold utensils, and hit targets. Yay!<br />
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I'm so glad this day is over. It was incredibly full of frustration, based on logistics and production issues, but the pieces came together effectively and voila! We survived, and with a little good news, to boot.<br />
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More later, lovely people.</div>
Chttp://www.blogger.com/profile/02851098760576370829noreply@blogger.com1tag:blogger.com,1999:blog-24289631.post-36664994657043302902014-05-17T14:20:00.000-07:002014-05-17T14:20:02.430-07:00Progress<div dir="ltr" style="text-align: left;" trbidi="on">
I hope more of <a href="http://www.npr.org/blogs/health/2014/05/17/313015089/doctors-ignorance-stands-in-the-way-of-care-for-the-disabled?utm_source=facebook.com&utm_medium=social&utm_campaign=npr&utm_term=nprnews&utm_content=20140517">this</a> happens around the country, and quickly. I'm grateful for perceptive attendings who cut through this and other subtle biases, to institute this kind of progress. It's a small investment for medical staff, in terms of training, but has a significant impact on the outcomes for patients who will already face unusual obstacles to wellness and comfort.</div>
Chttp://www.blogger.com/profile/02851098760576370829noreply@blogger.com0tag:blogger.com,1999:blog-24289631.post-5076068247735114312014-05-13T00:47:00.001-07:002016-02-04T23:02:14.856-08:00Held<div dir="ltr" style="text-align: left;" trbidi="on">
Could you take a few minutes and pray for <a href="http://bensauer.blogspot.com/2014/05/the-eleventh-hour.html?m=1">sweet Ben and his family</a>? And then go hug your own.<br />
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Peace be with you, friends.</div>
Chttp://www.blogger.com/profile/02851098760576370829noreply@blogger.com0tag:blogger.com,1999:blog-24289631.post-32133751203068309632014-03-13T22:54:00.000-07:002014-03-13T22:54:12.661-07:00Resources and recommendations<div dir="ltr" style="text-align: left;" trbidi="on">
First, have you seen my Amazon Widget over there? To the right... Yup. Orders placed via a click on one of the words in the product cloud add up for us. I've started planning for next school year, and the funds from orders are welcome. Thanks, friends.<br />
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I keep recommending <a href="http://journals.lww.com/neurologynow/pages/default.aspx">Neurology Now</a> to folks I run into, for all kinds of reasons. Mostly because we all possess brains, nerves, as well as the myriad blessings and confounding messiness those things entail. The articles are good for general information and the archives present an awful lot of information on just about any neurological issue one can name.<br />
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My friend's <a href="https://www.facebook.com/tiffanyharrisart">delightful art</a>.<br />
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Another friend's <a href="https://www.facebook.com/LittleMansionsDesigns">fantastical structures</a>. Which are also delightful art.<br />
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<i>Apples and Pears</i> and <i>Dancing Bears</i>, for kids struggling with reading (especially dyslexia and related issues). Sound Foundations is a UK company, with US orders <a href="http://www.prometheantrust.org/usshop.htm">processed here</a>.<br />
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Chttp://www.blogger.com/profile/02851098760576370829noreply@blogger.com0tag:blogger.com,1999:blog-24289631.post-48801684524519552522014-03-04T21:31:00.003-08:002014-03-04T21:31:57.217-08:00End the Word Day<div dir="ltr" style="text-align: left;" trbidi="on">
March 5 is this day: Spread the Word to End the Word. <a href="http://m.huffpost.com/us/entry/4896444?1393947357">Here's a good piece by a great dad.</a><br />
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XOXO</div>
Chttp://www.blogger.com/profile/02851098760576370829noreply@blogger.com0tag:blogger.com,1999:blog-24289631.post-77735967410084508482014-02-27T11:55:00.001-08:002014-02-27T11:55:33.644-08:00Winter into Spring<div dir="ltr" style="text-align: left;" trbidi="on">
I'm taking a few minutes to break from planning during violin lessons to mess with blog settings and Amazon links. They seem to be working, which means I'm already collecting a little bit towards next year's school materials. This is very exciting. Feel free to use the links below and to the right, and to share like crazy. <br />
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The weather has been generous the last couple of days. Sunny, highs in the low 50's, and the garden is responding accordingly. Tulips noses have been out of the dirt for a few weeks now, and have just shot up. The Sarcococa is still smelly as can be - it saves February from feeling like an irretrievably dismal month, garden-wise. There are baby cresses still ready for us, and a collection of gorgeous red lettuces in a raised bed. K trimmed back the Munstead lavendars while I snipped dead stuff off the bleeding hearts and freed their new burgundy shoots from the already budding vinca. The sweet woodruff is fluffing up again, and the bronze fennel is throwing feathery copper shoots. Snow is in the forecast for the weekend. Heh.<br />
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The girls have decided to put some of their Christmas money toward a 10K in April, this time with Q. So we're training a little differently, because that first 10K a year and a half ago was tough, and that was without pushing the giant boy. Last week we hit 5 miles in intervals, this week we should hit 5.5. It's kind of nifty to be out in the weather this time of year. Aside from the explicit, distracting meanness in a pounding, sunny, 22 degree wind, there's been something rewarding in each of the varying runs over the last couple of months. We pushed a tree off the trail after a couple of big wind storms went through. There are little green shoots in the swampy areas, and ducks appearing on the river again. We've discovered that the girls easily outrun me in the early parts of any given run, while I (usually) end the run at a faster pace than they're running. Except for S, who is faster than all of us, almost all of the time.<br />
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The packing of Q for cold weather runs has had it's own learning curve. He wears thermals under a layer of fleece, fleece mittens, hot towels or Hot Feet (the sticky version of Hot Hands), and a fleecy hat and maybe scarf. Tucked around him then is a fleece blanket, a down throw (stolen from a sister) when it's below 30, his fleece-lined black windproof stadium blanket, and then his velcro-ed vinyl enclosure to keep the breeze down even further. It's always interesting trying to keep his face dry (drool) and warm, and unchapped. Olive oil, Eucerin, Traumeel, and Aquaphor have all been helpful with that over the course of winters. We tuck an extra towel into the back of the Wike, too, in case we need to switch out on longer runs. I feel like we've sort of got a handle on this now - which means something is about to change, no doubt.<br />
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I guess that's us in a nutshell. Q will have some procedures toward the end of March, combining needs for anesthesia to his advantage. More about that and music and school later.<br />
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Hoping you can see some cherry blossoms where you are. If not, find some cherry ice cream or something instead. Here, I'll make some ganache to go with it. We'll share.</div>
Chttp://www.blogger.com/profile/02851098760576370829noreply@blogger.com2tag:blogger.com,1999:blog-24289631.post-9418153847320558672014-02-24T22:05:00.000-08:002014-02-24T22:05:17.224-08:00Alone, together<div dir="ltr" style="text-align: left;" trbidi="on">
This is so, so, VERY good. <a href="http://www.exceptionalfamilytv.com/blogs/families/michelle/five-things-you-should-know-about-special-needs-family">http://www.exceptionalfamilytv.com/blogs/families/michelle/five-things-you-should-know-about-special-needs-family</a><br />
<br /></div>
Chttp://www.blogger.com/profile/02851098760576370829noreply@blogger.com1tag:blogger.com,1999:blog-24289631.post-43698089814711327502014-01-13T23:18:00.001-08:002014-01-13T23:22:49.784-08:00Widgets, maybe<div dir="ltr" style="text-align: left;" trbidi="on">
I'm adding a widget here so I don't have to reach through the screen and flick somebody's nose at Google. The last time I tried to do this, Blogger had little wrenches and one could select areas of a template to work on, using those little wrenches. Was this too easy? Because I could use something being just. that. easy. GOOGLE. Hmph.<br />
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Let's see if this works. We all should be able to use this to shop on Amazon - fingers crossed!<br />
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http://www.amazon.com/b/ref=as_li_qf_br_sr_il_tl?_encoding=UTF8&camp=1789&creative=9325&linkCode=as2&node=679360011&tag=durmat-20<br />
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I don't think that worked. Let's try this...<br />
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http://amzn.to/1ePTC46<br />
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One more time... <a href="http://amzn.to/1ePTC46">AMAZON LINK </a><br />
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Oy vey.</div>
Chttp://www.blogger.com/profile/02851098760576370829noreply@blogger.com0tag:blogger.com,1999:blog-24289631.post-88980797042410429302013-10-12T00:16:00.000-07:002013-10-12T00:16:11.243-07:00Try, try again<div dir="ltr" style="text-align: left;" trbidi="on">
I keep thinking we'll get to a place with a little more breathing room, schedule-wise, but not so far. E is busy with classes, K and S are busy with school work, they're all practicing like mad, we're getting three runs in a week, and Q is therapy-ing as intently as ever. I'm writing lesson plans, wrangling paperwork, and trying to shove the medical appointments in where I can. Which reminds me: list. One second...<br />
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Okay. More stuff to schedule Monday morning.<br />
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Q had a visit with his physiatrist (rehab doc) this week. We talked through Artane (a no for now - he's typically more spastic than dystonic), Botox (yes, which means organizing ophthalmology and orthopedics quickly - the ophtho appointment needs to move up from February), and possible equipment needs as we move forward. I like this doc, though we don't agree on everything. She's respectful of her patients, the family process, and always checks to see if I think her proposed course of action makes sense or if we need to rethink anything.<br />
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The bath seat was a fail, unfortunately. It's not as tall as it would need to be for one tub, and doesn't allow Q's feet to clear the toilet in the other. On to the next option. Meanwhile, we await approval for a car seat and a walker/gait trainer base.<br />
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So I've been thinking about what needs we have emerging here for Q over the next several months and years. More immediately, we have a ramp to pay for, and fundraisers are underway for that. Next up, a low-tech ramp type set up for the van would be terribly useful. The chair is 60 lbs, so we all "lift heavy" every day - which is awesome, because we can, the big girls and I (though we have accompanying bruises), and we're <i>glad</i> to be able to, for as long as we can. But one begins to be mindful of things like effort spread over Q's lifetime, of his continued growth, of our own fallibility. Okay, my fallibility. The rest of the Q peeps don't seem to have any trouble naming their end points. I guess as his mama, I kind of feel like I should just keep going. Which... ...mumble, mumble... may not be the most realistic way of managing all the facets of Q care, long term. Ahem.<br />
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Other needs that loom: a ramp for the back door and more accessible paths and areas in the yard (safety issues); bathroom modifications (hoping to push this off a little longer if we can find a bathing solution - he's outgrowing the bath seat and is too slippery and heavy a fish to continue to zoom in and out of a tub as we have been ); new flooring to replace the carpet (too much drag for a boy on wheels - safety issues).<br />
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I have further thoughts on sort of "ultimate" equipment or outfitting options, but the people here are asleep and tomorrow brings an early morning.<br />
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Have a lovely weekend, lovely people. :)</div>
Chttp://www.blogger.com/profile/02851098760576370829noreply@blogger.com2tag:blogger.com,1999:blog-24289631.post-8332213194459894732013-10-05T00:06:00.001-07:002013-10-05T00:06:56.107-07:00Rundown<div dir="ltr" style="text-align: left;" trbidi="on">
My grandmother turned 91 recently. She's not as well as she has been. My family descended upon her to sing and chat, one or two at a time, and wish her well. The brightest moments I saw were when I asked her if she remembered teaching me to read notes when I was four, and then when the girls and I sang hymns and folk songs. I'd like to see her again soon.<br />
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The girls are busy, busy, busy. The challenges in getting three conflicting schedules met have kind of turned out to be a blessing. While "stuck waiting," the girls have been able to make good use of practice rooms and library spaces, getting creative with their time in order to manage their goals. They're working to pay for their orchestra dresses and other music expenses.<br />
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One of Q's OTs mentioned today that it's probably time to think about different solutions for bathing. There's a rolling seat that (I think) cantilevers over the tub so there's no transferring a slippery, heavy kid into and out of tubs. Right now, E and I lift him in and out, while grandma or K "catch" him in a towel. So the rolling seat may be available for loan next week. The possibility of a great solution is pretty exciting.<br />
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The house is quiet so it's time to crash. </div>
Chttp://www.blogger.com/profile/02851098760576370829noreply@blogger.com0tag:blogger.com,1999:blog-24289631.post-14536462218857640272013-09-21T01:08:00.001-07:002013-09-21T01:08:21.350-07:00Lately<div dir="ltr" style="text-align: left;" trbidi="on">
I've been thinking about how life looks these days. It seems like the kids are each poised for their own leap into something new and huge. Ready or not, here comes another new incarnation of the family. Developmental arcs, for the win! <br />
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The plans for the year include new kinds of writing, history, and philosophy, both at home and in other educational and therapeutic settings. Two of the four will be based offsite for the bulk of their educational endeavors, with some work ongoing at home. The other two will be based at home, with some outside work. The schedules need tweaking already - I'm having a hard time getting Latin in. That may change after the girls have finished with next weekend's performances (orchestra and wedding) and their practices subside just a little.<br />
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The girls all continue with piano and violin, working to pay part of the class fees and for most of what is becoming significant instrument expenses. I'm not sure where I expected all this to lead, but it turns out that practice causes improvement, which brings further opportunity and development, which are expensive. I mean, hooray for hard work! And also: whimper.<br />
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Q's stuff is also evolving. We have a ramp for the front door - a serendipitous thing, if ever there was one. It arrived just as the growing Q started back to school, and came out of the clear blue sky. No more hauling the 115 pounds of kid and chair up and down the steps! We have a generous (and kind) arrangement when it comes to the finances, but I still must figure out how to raise $7800. Actually, $7670, thanks to, well, more kindness. <br />
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There may be a bazillion bake sales in our future. <br />
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In other Q news, he had an excellent dental visit Friday - beautiful teeth and not even an attempted nibble on the fingers in his mouth. He thoroughly charmed the staff, as usual. They pulled his errant and wobbly "shark" tooth so the new one can finish growing in. There are scripts in the works from his pediatrician for a new <a href="http://www.rifton.com/products/mobility/pacergaittrainers/K502.html">walker/gait trainer/stander base</a> and new <a href="http://www.columbiamedical.com/special-needs-disabilities-products-group.asp?ProductGroupID=36">car seat</a>. We have a rehab visit coming up next, I am still waiting to hear if we can move ophthalmology up from February (!), and I need to nail down the nutrition consult. Time to schedule another endocrinology visit as well. The short term big picture involves determining whether or not Q can have botox (for pecs and potentially thenar eminences), eye surgery, and have the hardware removed from his hips, all under the same anesthesia. We shall see.<br />
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The house is quiet, so it's time to crash. A blessed rest to you, lovely people.<br />
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XO.</div>
Chttp://www.blogger.com/profile/02851098760576370829noreply@blogger.com0tag:blogger.com,1999:blog-24289631.post-3794770756346094172013-08-31T00:30:00.002-07:002013-08-31T00:30:33.700-07:00Week's End<div dir="ltr" style="text-align: left;" trbidi="on">
I'm so glad it's Friday. Deep breath... <br />
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Conversations about Q this week included prospective special needs car seats, since he's truly outgrown the longest, most supportive, "regular" seat I could find. He's just looong. So we'll try out possible models in a week and a half. We really need ramps for the front and back doors, and for the van - then the conversation would shift a bit, and might even include timing for a possible power chair of his own. Q also brought home an older Daessy mount (<a href="http://www.daessy.com/dms/mseries/m75fm/m75fm_a.html">this, sort of</a>) for his iPad, which he is just loving. The rockstar OT who's working with the power chair trials scrounged and found this in a closet. I've been scheming over how to manage a support arm like this for a couple of years, so I'll just go ahead and say it: Squee! There aren't really words for how big a difference it's already made for the boy. Big, happy sighs.<br />
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We have crockpots of spiced apples set to "warm," bubbling away on the kitchen counter. There's a lovely breeze coming in through the window. Tomorrow will be above eighty again, after a couple of days of rain. Earlier, I stuck some chocolate mint into a tub of sugar, and now I'm waiting for the lavender to dry so I can start a new batch. A couple of weeks ago, we had a bunch of blueberries which were good, but needed to be dessert. I happened upon a tub of lavender sugar I made last year and had forgotten about in the mug cabinet. Eyes rolled back in their heads - a drizzle of cream, a sprinkle of lavender sugar, et voila. A luscious new favorite.<br />
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The rain was nice, but since the air stayed so warm, the weeds sure grew. Meanwhile, the couple hundred green tomatoes are still hanging out (ba-dumpbump). I keep harvesting Lemon Boys, which are delicious with goat cheese. Okay, with any cheese. The Zebras are pretty. Also green. Sometime over the weekend, I think we'll make another run at the blackberries and thistles, and try to get some of the random naked areas covered with black plastic for winter weed abatement. The flowering plum and dwarf red anjou need to be put in the dirt. They were gifts, last fall, and I hadn't settled on their permanent homes before winter, or in the spring. But we've moved them around the yard and moved them again, and imagined their future leaf canopies, talked about pruning, and now - the shovels. We also have some curly willow twigs that came out of E's birthday flowers from grandma - they've leafed and rooted, and now it's time for dirt.<br />
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The random volunteer perennial babies are also doing well: lemon balm, bronze fennel, blue hyssop, Hidcote and Munstead lavenders, oreganos, sedums, and chives on steroids. It's a little nuts, but I can hardly wait to see what spring brings. The hollyhocks have already thrown a bazillion seeds, and the bee balms have grown enough that I think they'll survive the winter. And there are pansies coming up all over. Ahhhh.<br />
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I've got school supplies to figure out (fret), and schedules to organize over the next couple of days. The kids are ready for a full fall schedule, and I'm almost there with them. I keep wishing I had a couple of extra days just to pull projects together so we're more collected as we begin All the Activities at once. And more paperwork issues have come to light in the last couple of days, so... Maybe I'll switch to getting up at 6, so I can have a little time before the kids have to be up? I wonder if that wouldn't be best, since I'm pretty much fried by the time they're all tucked in and away for the night.<br />
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They're all quiet, so I'm taking my musing self to bed. Happy being grateful for those who Labor Day.<br />
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XO.</div>
Chttp://www.blogger.com/profile/02851098760576370829noreply@blogger.com0tag:blogger.com,1999:blog-24289631.post-44765182994777665802013-08-26T23:51:00.000-07:002013-08-26T23:51:57.459-07:00Thank you<div dir="ltr" style="text-align: left;" trbidi="on">
An hour ago, I opened the back door to let a little air circulate. In came the warm, sweet, spicy scent of the stock next to the patio... And away drained the rest of the day...<br />
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So we had some Latin, math, some language arts, music, a run, and chores. Then we used Christmas movie tickets for Despicable Me 2, which Q found completely awesome, and then all the requisite feeding of the people and intermittent laundry. <br />
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Tomorrow brings a drive for E (finishing the driving portion of Driver's Ed), during which K and S will knock out some more school work, then quartet practice for an upcoming wedding, therapies for Q, and we'll finish <br />
writing our goals for the school year.<br />
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If you would, I'd appreciate prayers as we embark on the 2013-2014 year. There's still work to be done on the one schedule - it would be helpful if there were suddenly openings for certain classes. And the other schedules, while more straightforward, still require creativity. Plus... (argh) We have a growing list of needs, some pressing, many of which I have no idea how to manage. So. Thank you.<br />
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And one more thing: I've been listing off blessings in my head. Because, you know, for all the hard work and occasional oddness, we're blessed. Really and truly. A box full of binders arrived here last week from someone who knew we needed some and had extra. Binders! Out of the blue! A couple of anonymously sent gift certificates are covering what I hope are the last workbooks we'll need for the school year. Sometimes it's hard to think positive thoughts in the middle of, say, the fifth call from SSI regarding Q, in which I learn that paperwork they received from me in April still has not been executed. At those moments, it's especially wonderful to be able to recall the kindness and generosity of friends, family, and sometimes, complete strangers. Y'all rock. Thank you.<br />
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Time to breathe deeply and get some sleep.<br />
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Thank you.</div>
Chttp://www.blogger.com/profile/02851098760576370829noreply@blogger.com0