Saturday, December 19, 2009

It's the most wonderful (busiest) time of the year

The kids played violin and piano at a retirement/assisted living facility this week, much to the delight of the residents. It was so neat to see them perform in that context and thereby deliver such a blessing.

We got home so late tonight from the candlelight concert and reception. We had agreed to do the reception months ago and G joined the orchestra a few weeks back, so thank God for technology -- we watched/listened on CC tv while stirring soup and arranging tables.

The kids are on again in the morning, with violins and singing. So they're sleeping fast and hard and I'm about to do the same. Q had a nice big drink of water when we got home so I came here to write while waiting for the ensuing burps and falling back to sleep. Seems he out.

Merriest of Christmas performances and engagements to you and yours. Hope you're having as much fun being this busy as we are. And it'll be over before we know it.


Wednesday, December 09, 2009

Frustration and whining


I have been trying to install the software for Q's touchscreen. It seemed as though it was going well. We've had it for three weeks, maybe I should get it done, huh? Heavy and heavier sighs.

Right now I would bet that it's not working because it needs Windows XP or 2000. I have Vista here and will need to go cannibalize something from the CPU graveyard to make this work. This is not exactly a problem. I mean, in a past life I was reasonably handy with tech stuff, with confidence planted in a programming class I took in the early eighties. I mean, I don't think I was ever going to do things technical as a career, but I could at least figure out what my own set-up needed in college (not that it was hard, trust me).

But now? I am overscheduled, out of practice, and after a couple of decades of having consigned that portion of my brain to the back room? It doesn't want to come out and play anymore. (Have I mentioned the overscheduling part? Good. That part of my brain is afraid of the rest of the brain parts out on the playground. It wants a nap.)

This all renders me a tetch frustrated and whiny. Not really the most attractive qualities in a person, so I'll try to be succinct in my complaint(s). Tonight I need to rewrite school paperwork for all four older children, find books for certain people for certain gifts, fill out Q paperwork, figure out hiccups in kids' medical coverage, finish another hundred pieces of a project, grade a bunch of math/algebra papers, and get this thing hooked up so the software can go back to the school district. After I do that, I need to run another load of laundry, organize Q's clothes and food for tomorrow, start oatmeal for morning, recheck portions of workbooks, stack and pack up the kids' schoolwork for the day, and finally, go to bed.

Q had a nap this evening, so I may in fact be "awake" long enough to accomplish most of the above. Our day tomorrow will include four hours of lessons, an hour of PreK for Q, and appointments. Some of these things require that I be in more than one place at a time, and we do this every week. Tomorrow my mom is off and has offered to help with that, but honestly, sometimes it's all I can do to keep the details aligned in my own head, much less explain any portion of the convoluted process to someone else. (Thus the dilemma of often needing help of some kind, but being too busy keeping my head above water to actually ask for any.)

Anyway. It's 11:45pm and I really, truly, with everything in me, just want. to. go. to. bed. Instead, I'm spouting off here, which as you may have noticed, gets me no closer to having ticked off any of the above. It's called avoidance. Rowr.

Most days things really are groovy here. The kids are almost always a hoot, nothing's ever dull, and we do manage to get through practices and school stuff with astonishing forward motion. But today? I'm fried. I want to sleep and I want someone else to divide the burdens with. I can't quite stop the thought creeping in, "This is not what I signed up for." It's not a useful thought. It isn't helpful, constructive, or welcome. It isn't the whole story, or healing, or funny. But sometimes, when Tired has become my address, it's the thought that breaks down the door and tries to steal everything happy.

So now that I've thoroughly bored even myself of this topic, it's time for a small refocusing before I go to check on Q again.

Today four fallen police officers were honored in a memorial service attended by more than 23,000 people. Tonight I am not tucking in babies whose daddy was murdered. I am not dealing with that magnitude of loss. My stuff is sort of petty in comparison, really. My stuff is maybe even mostly the flip-side of blessings, if you will.

I have the means, financial and otherwise, to get my children to two sets of music lessons every week. This is so enormous, there may not be words for it.
I am capable of creative planning, financial and otherwise, in order to make sure that such things can happen here.
Q is rounder this week than last, in part because I've been stuffing a few extra bites into him at every meal. Lord willing, December 2009 will not include a g-tube discussion.
I am here, with the kids, in a role that blisses me out regularly and keeps me thoroughly amazed. That I get to watch them learn and grow and even wrastle back as they formulate arguments based on principles of formal logic... how do we discuss that kind of cool?
It is very cold out tonight, probably in the lower single digits, but the punkins are tucked in warm. Miraculous, I tell you.
My darling auntie came today and stayed with the bigger ones so I could take just Q to his speech appointment. She is the sock maven, sock whisperer, comptroller of the sock collection. When she visits, she works magic over that basket and lo, we've footwear. It's astonishing to me, every time. Not that she matches them, that she finds their matches. You know what I mean, don't you? Yes, yes. I see you nodding.

And there's so much more, you know? Laundry = clothes to wear. Dishes = food enjoyed. Appointments = living, breathing, healthy kidlets. Obligations = the blessings of people and those relationships held dear. And so we give thanks in all things.

Now that I've talked myself out of a spiralling fit of exasperation, I'm going to check on Q. If he's asleep, I shall reorganize my to-do list above and see how much I can pack along to do while the kids are busy in workbooks during lessons. Still? I could kick something over the whole XP vs. Vista scenario. I want to say that I used to be smarter about this stuff, but the truth is I either had the time to take it on or someone upon whom I could rely for either small tweaks or Herculean help. More, but diminishing rowrs.

G'night, you lovely people. Hope you're resting well, or already have.

Saturday, December 05, 2009


So much has happened since I posted last. I'll get to the most special parts, but not all right now. I'm trying to hit bed before 2am, which will be an hour earlier than last night. Q's wanting to sleep, but is needing turning and repositioning, really having a tough time getting comfortable.

Perhaps one of the most incredible things to take place recently was that a dear friend's husband had a pretty frightening health emergency. He's more or less out of the woods but will continue to need watching and testing for quite some time. After nearly a week in the hospital, he's glad to be home and his family is thrilled to have him. They can use continuing prayers as he heals, more tests are ordered, and he resumes his search for work.

We've seen rather a lot of car accidents lately, twisted metal and crunched up fenders and windshields. We're feeling a little twitchy about all that and it's shown up in us walking a bit more carefully around each other, taking a little extra time for hugs and backscratches. (Go squeeze someone you love right now. I'll wait here.)

G and E were baptized and Q dedicated a week ago. It was such a lovely service, with other very dear families involved, music that helped the spirit soar, and a really good and blessedly short sermon. One of the best parts of the whole thing was Q grinning "cherubically" through the pastor's words and prayer. Here are the poems read during the service (go with the "becoming" imagery in the first, and remember that it's special to us in part because all three girls have memorized it during their respective first grade years).

The Caterpillar
Brown and furry
Caterpillar in a hurry;
Take your walk
To the shady leaf, or stalk.
May no toad spy you,
May the little birds pass by you;
Spin and die,
To live again a butterfly.

Holy Innocents

Sleep, little Baby, sleep,
The holy Angels love thee,
And guard thy bed, and keep
A blessed watch above thee.
No spirit can come near
Nor evil beast to harm thee:
Sleep, Sweet, devoid of fear
Where nothing need alarm thee.

The Love which doth not sleep,
The eternal arms around thee:
The shepherd of the sheep
In perfect love has found thee.
Sleep through the holy night,
Christ-kept from snare and sorrow,
Until thou wake to light
And love and warmth to-morrow.

Both belong to Christina G. Rossetti.

Wishing you peace and delight this weekend. Or just lots of sleep.

Saturday, November 21, 2009


I almost started out with "We've had a big week" but really, when don't we? It's one of the many perks of being in this family. Here's part of this week's whirl.

We spent three hours at the violin shop on Monday and came home with some Very Good Things. Which are altogether worth far more than the funds laid out, for which we are so grateful. There are a series of little miracles in this story, and specially deserved hat-tips go out to my brother for wrangling extra wretched traffic in order to help pull this off, and my dad for guarding a particular item carefully on it's way home on the train.

Q brought home a loaner touch screen from the school district for his own personal use. It will have to go back in June, but for now, as soon as I can install the software, it's his. This seems like maybe not the biggest of deals, but somewhere along the line, so help me, this kid is getting some honest to goodness aug. comm. Those big devices are something that someone else, insurance or some other entity, will have to pay for and Q's having regular time and access with a touch screen is one of the first steps in justifying this sort of thing to one's insurance. Those big guys are so far out of our price range.

Well, so far they are. This guy may have a hand in changing that. If you feel so inclined, I'd like to suggest that we all pray for divine protection as he works on bringing this to market. So many large organizations would be thrilled to either see him fail or to buy up his work so they can stick it in a vault and slam the door on it. No. It's needed out here, in the real world. If you've ever had to deal with frustratingly clumsy technology, you should be able to identify to some degree with what Q faces daily in his own body. If Pranav's work can change parts of that... Wow.

The big kids are getting ready for their piano and violin recitals. They are such fun to listen to and play with. Sometimes I do wonder what on earth I was thinking to have signed them up for violin. Q often cries through practices unless he can have someone right next to him, in another room, preferably with a closed door between. And really, how practical is that? Not very. S, and to a lesser degree K, still need some one-on-one during practices. Meh. We persevere.

The biggest four made their own music bags this week. They all had sewing classes for the last couple of weeks and will again in January. Somehow the usual project of trimming out a tea towel seemed less than useful for them, so on a whim I asked the teacher if what she was holding up could be made into a bag. She said it could and that we could do it in our next session. So we did! The kids picked out their materials and sewed 'em up. G's topstitching is superb -- good enough to be paid work. While some of us have yet to grasp why we might not want to install ceramic buttons all over such a hard working little piece of equipment, others are planning to pack multiple baggies of crayons and pencils along in the outer pockets "in case I get bored." The timing is especially cool since we're averaging 3-4 books per kids per instrument at this point, the bags we have had are giving up under the strain, and I suspect that the book count is about to increase again. (Whispering: G is hoping to soon join the orchestra at church.)

My mom made Pumpkin and Banana breads today with the girls. They're all sitting here in spicy little rows waiting to be added to the Thanksgiving baskets that will be put together at church tomorrow. So on that happy note, I'm off.

I hope you're looking forward to a rest-full weekend enjoying things delicious as you feed both bellies and souls of those you love, something good to read in a warm and comfy chair, and peace piled up in the corners of your rooms, deep enough to share.

Wednesday, November 18, 2009

Picture this

I'm feeding Q his yummy homemade veggie soup pureed with cottage cheese (it tasted better than it sounds -- everything gets tested before it goes to him). He's not happy because he's too cool for food. So S is hanging out nearby and I ask her to come sing "Where is Thumbkin" with me, in rounds, to distract the little monkey. She cheerfully and immediately complies. Q settles and moves right on into happy eating, snarfing down his tasty puree. S finds herself needing variety in the third singing of Thumbkin, so she begins yodeling with a little vibrato. Sweet. We move on to rounds of "Row, Row, Row Your Boat." I throw in a little more vibrato. Things are getting silly. At the end of that round, she cuts off the note abruptly, to turn to me and say, a little surprise in her voice, "Wow, Mommy! Did you take vocal chord lessons or something? You're good!"

Bwahaha. We ended up singing a chicken version of something else -- Puccini? I don't know what it was, but Q found the whole thing hilarious and burbled for more, giggling around his food (tough for him, but he managed). S is always good for unexpected twists and lots of laughs.

Saturday, November 14, 2009


I don't have much to say, really, but thought I'd check in. I have one pukey kid, who is hopefully done with that now (could actually be), and several who are feeling antsy, hoping it was a fluke and now it's done and we can move on with our big day at church come morning.

I've been thinking lately about kindness and how we experience that. About what gestures represent to us safety vs. fear, encompassing tenderness vs. shrinking inadequacy. And are those making those gestures which are received so negatively even aware that they're putting that out there? I don't have much on this subject, I don't think. It's percolating in my head. But... wherever you are, if you're leading with kindness and gentleness and thinking of those around you while doing so, you aren't likely to rack up many enemies. Sometimes it's really hard to pull this off. Like when someone has been nasty and really deserves a good set-down. But do they? Deserve anything? Well... you only get what you give. Prickly personalities tend to breed hostility, inattention to those around us tends to breed contempt. Those behaviors tend to be self-limiting, in the sense that they keep their hosts from getting as far in life as they might otherwise do. Aside from that kind of indicator, there's no way for us to know what another person is experiencing, what their global objective pain or happiness level is, if you will. And how would one go about meting out consequences or set-downs for the truly crummy? Other than legal consequences, nothing viable comes to mind.

Best to err on the side of perpetual kindness and gentleness and grace, then, I think. Sometimes that means just sitting quietly and not offering judgement. Sometimes it means extending a hand. And if the hand is slapped? Not your problem. Your obligation is simply to keep showing up, smiling when you can, with your hands open, learning while you do so.

Huh. Turns out I do have some things to say. Actually, well, I'm going to be done for now. Q's out and I need to be too, in case the evening presents any more sickies. (Pray over this, will you? Thanks.)

It has been a full and lovely week here. I cannot tell you how much I appreciate the good stuff I have: mostly great kids, quite decent health, sweet and articulate people surrounding me. Sometimes it feels a little like I'm being pressed upon by angels. You know who you are. (Yes you do, don't argue.) May your weekend provide you Sabbath rest and reconnection with family, friends and Creator. May you sleep better than a baby and wake with spirit expansively renewed. You are loved. Magnificent, miraculous, you are loved.


Q updates to come

Tuesday, November 10, 2009

The day

Madame M-mv, saying it well.

The post-it from K's Spelling book, alternately in block print and cursive:
K_______ Love
K_______ Love
K_______ Love
S______ Love
E____ Love
Q_______ Love

G had been a pill while she was writing, or maybe she hadn't gotten to him yet. But his name is often found in these lists too -- sometimes it's a kindness on the part of one or the other. Have I mentioned lately how much I love this job?

Saturday, November 07, 2009

Kids today

Interesting info.

Robert Epstein: Psychologist and visiting scholar at the University of California San Diego. He is the former editor-in-chief of Psychology Today and author of several books, including The Case Against Adolescence.

During the interview he says:

"In more than a hundred cultures around the world, there is no teen turmoil... Any culture that severs the connection between young people and older people creates this problem. In other words, if you isolate young people from adults and you trap them, as we have done, in this peculiar world of their own where they learn everything they know from each other and, of course, in our culture everything they know comes from divisions of the media and fashion industries. If you do that, you isolate them from adults and then if you treat them as if they are still children, which really makes some of them very angry and depressed, you create adolescence."
"They actually have almost no meaningful contact with adults here. In fact, according to research, teens in the United States spend about 70 hours a week, that's most of their waking hours, in contact with their peers. You compare that [cut off by interviewer]... They spend on average a half hour a week with their dads on average, 15 minutes of which is spent watching television. Now compare that to cultures where the child/adult continuum as it's called is still intact, in those cultures many of which are developing nations, teens spend on average 5 hours a week with their peers versus 70 here. Who are they spending their time with, they're spending most of their time with usually same-sex adults learning to become adults. That's really what the teen years were through most of human history even in the west, it was a time you learned to become an adult."

Listen here. Hat tip to Shoshannah for the info.

Thursday, November 05, 2009


Look! A helpful translation guide for dads of homeschooling families. I'm thinking Mr. Homescholar might consider a brilliant new career in wife-to-husband pocket translation on a variety of topics. Maybe Mrs. Homescholar would consider writing a reverse version? (Please?)

Susan Wise Bauer is blogging -- homeschool commentary from a veteran. She's compelling and articulate, as always providing much to chew on.

About our current homeschooling adventures? Time change weeks stink. Otherwise, the kids are learning, the schedules are colorful as always, and S is currently obsessed with reading the calendar. She has posted her own piece of lined paper next to the giant generic deskblotter model I have on the wall. She stands next to me when I'm writing new things in, writing and scribbling in her own various colors, keeping us all on track. Sometimes she complains when my writing is "too small to read" -- which totally cracks me up. When the big kids get confused about what's happening on which day, she quotes today's date, tomorrow's date, and the activities listed for both.

Our redesigned lesson plan/checklist notebook has worked pretty well (many thanks to all those who contributed glimpses of their personal versions), minus the aforementioned time-change week of doom. Another change this year is the switch from random Post-it page markers and notes to the fabulous Ree's method of using green ("start here") and red ("stop here") Post-it tabs in the kids' various workbooks and reading selections. By now I should either have stock in 3M or have some sort of endorsement deal with them. I believe I own almost every repositionable adhesive thingy they make and I proselytize mercilessly on their behalf. My own books are a walking advertisement: they have enough page markers stuck throughout that they seem to have sprouted a very colorful post-post-it-modern paper/plastic wig. 3M people? You reading? Your new product should be a care package for busy homeschool moms (or students or professionals). I'm happy to test the concept for you. Do you need my address?

I have high hopes that we'll be back on track by tomorrow, waking and sleeping and working at a slightly more rapid pace. Meanwhile, Q's out, I'm had, the African Dwarf frogs are squarking, and it's time to sleep.

Hope your rest is sweetly shared and long enough.

Monday, November 02, 2009


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

Friday, October 30, 2009


I found this lovely place through the NieNie Dialogues. Have you met Stephanie? I found her blog for the first time several months ago. Her story has stayed with me between readings. She is one of my heroes. I am grateful that she is willing to share a peek into her incredible journey, taken and made with stunning grace.

We've been so productive in life lately, forging ahead through schoolwork, miscellany, quotidien things. It's been mostly a joy, excepting the moments in which one of us runs out of internal resources. Even then, though, the coming back, apologies, making nice, cuddling each other up, these things are exquisitely precious.

Sometimes I forget that it is work and work and unending work that lands us here, in a place where we can revel in our accomplishments. All talking, explaining, rule making and enforcing, hugs and laughter and skinned knees contribute to what and who we are now, this little group. Today we had an English test, many other English lessons, writing, math, spelling, a trip to the doctor and three trips to the pharmacy for medicine to make the allergic reaction stop. This is not a small thing, a day like today. It is a huge and lovely thing, beautiful unto itself. It includes things like hot chocolate while we fold clothes, a dishwasher filled and emptied and filled again, vegetables, three good alternative meals for Q, grapes to take with us on the fly, and big drinks of good, clear water. Each of these things is a small miracle, you know. And each contributes to the larger accomplishment that is the magnificent day, closing with the oohs and ahs which a blue and gold and rose and platinum sunset demands.

I am always caught, just a little surprised that things go on as they do. I feel still the rip in my little corner of the universe, though delight at my small crowd sometimes blurs the edges of the hole. S popped in this morning, couldn't wait 'til I was out of the shower to tell me: "I think Q's smile is just getting bigger and bigger. Yup." And she was off again, jumping back into my bed to snuggle up her punkin brother and make him giggle some more. In so many ways, I am one of the very best-blessed mamas in the universe.

Anyway. See if you can't find a little bliss right where you are this day. Thank you, Stephanie, for sharing some of yours and for keeping it real.

Thursday, October 29, 2009

A restorative

Oh, just the perfect thing when one wants a nice tub, but one hasn't got one.

(Thank you, Pam.)

Sunday, October 25, 2009


She deserved better, but she resolved to do better instead.

--Stuart McLean, The Vinyl Cafe

Saturday, October 24, 2009

In a nutshell

This week has entailed much busy-ness, the kids knee-deep in schoolwork, and my inability to sleep without seeing "Direct Object, Indirect Object, Objective Complement, Object Complement" in definitions, sentence labeling, and diagraming on the backs of my eyelids. Heh. I'm looking forward to church in the morning, so I'd best scoot off to bed before it's time to get up again. Q's snuffling and complaining, so I'm off.

Monday, October 19, 2009

Good news! It's not Al Qaeda.

Well, it didn't really get "better." The missing math was found (in a place I'd already looked thrice, I tell you) and done, without too much fuss. So that was nice. As was the hour of online math tutoring the eldest two had. Oh -- and the A that E got on her English test. All nice things.

At some point I started growing a headache and went looking for caffeine. That effort ended when I lost my grip on a Frappucino bottle that was already travelling at a not inconsequential rate of speed toward asphalt. I cleaned that shattered mess off the driveway, and my running shoes are now dripping dry in the tub. They hadn't been pristine before, since I had only just finished wearing someone's abandoned tepid cocoa -- at least that cup hadn't broken. Instead of coffee I ended up with four cups of pear white tea. Lovely, to be sure, but not the same. The instant coffee was found between bags of tortilla chips. Yes it was. It's been rescued and returned to it's pharmaceutical locale.

The disposal has been indisposed all day, leaving the sink a foul, undraining mess (the needed tool seems to have gone into witness protection). At suppertime, Q kicked over two mugs (two!) and busted them to smithereens. He was dismissed to the tub, which is probably what he wanted anyway. I have run two more loads of laundry, planned lessons in greater detail for the next couple of weeks, served up a squash/quinoa/butter/brown sugar/cardamom concoction for supper and medicated those needing it for bedtime.

The water bottles and snacks for tomorrow's Therapy and Van Maintenance Tour are set out. The breakfast cookies are cooling and the veggie sausage patties waiting patiently in the freezer. There are juice boxes and diapers and wipes in the van, which has been emptied of all extraneous materials following our trek east for a memorial service yesterday.

There were less complaints and more productivity today from certain pupils here. It might have had something to do with all the broken glass and the look of dead calm/frozen disbelief on my face, but I'm hoping it has more to do with my unwavering fortitude in the face of: "Whyyyyy?"

The late afternoon was salvaged with repeat playing of Larger than Life and You Get What You Give (we decided that they're definitely kicking, erm, donkeys, therein). Inspirational music, for some of us anyway. U2's Beautiful Day helped most. The children are mostly down now, only Q is still giggle-shrieking. My dad discovered the whereabouts of the singular "magical" tool and the sink is draining again.

G has now reappeared to finish his writing assignment. Crazy boy.

So the long and the short of it is that I'm going to resist the urge to draw parallels between my day and terrorist plots and instead revel in the sounds of very much more quiet than there's been all day. Q needs a little water before he sleeps. I'm contemplating finding something to watch online. Mayhap a thing with no redeeming qualities, save humor.

And one more thing, before I go back to the laundry. Several years ago I was listening to someone talk about their life circumstances and came away with a fantastic quote: If you've got problems that money will fix, you don't have problems.

Kiss those babies and the one you made 'em with. It's a Beautiful Day. Don't let it get away.

Please explain

Someone who shall remain nameless seems to have lost one of the Very Expensive Math program discs. Seriously. (head in hands) I am hoping that it didn't land in the mud near a rest stop a couple of hours away.

So far today I have done four loads of laundry, guided lessons for cranky persons, hauled one in for a filling replacement, supervised the making of a vegetable/hot dog "soup" (you do not want to know) and cut myself cleaning up a broken glass full of water which Q kicked over. And! AND!!! The Costco-sized container of instant coffee is AWOL. Seriously! Where in the world would it go? (We do understand that my overuse of italics just there is indicative of the approximate level of frustration, yes? Oh good.)

Time to toss the house.

Saturday, October 10, 2009


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

Wednesday, October 07, 2009

Nicely done

Read and obey.

Tuesday, October 06, 2009

Tired and, uh, goofy

If I can just keep all the balls in the air a few more days, we'll have the weekend. We've barely been home for the last several days -- field trips, therapies, family fun. Tomorrow we have music lessons for the big kids, and Q has his second day of preschool. His teacher has the sniffles, so she's not going to come in, but the school SLP will be there and we're excited -- besides being super nice, she's also one of the AAC specialists who make up the team.

Today in regular Speech therapy we learned that it will most likely be January before the swallow study is approved, so that slides to the back burner. Less to worry about, schedule-wise, though I'm so frustrated with this process that I could kick something. His next neuro appointment will coincide with that so we discussed lining up meds with function and how we would need to repeat oral testing as his function changes if he's on Baclofen.

Some things make me want to run into a cave, post a rock across the door, and hide in a nice, warm nest for a very long time. Here's my current list: thinking about possible eye surgery for Q; health issues with another kid o' mine; paperwork; daily to do lists; laundry; cooking; cleaning; juggling equipment needs with the realities of what might get paid for and what would really facilitate a little fun for the lot of us; diapers; snot; driving the crowd around for the rest of the week; keeping the various personalities happy; the parking ticket I got while we were in church...

It's not a short list. I want some real sleep, a massage, a healed-up knee, a walk/run -- intervals sound delightful, another massage, real food, a nap, a lovely bath, maybe a pedicure, some cold sparkling water, and then I'll be all set.

This is what I'll do instead: push-ups and squats tonight, then tomorrow piano, preschool, violin, school in between, then fly home and clean for visitors. Thursday we have nothing on the calendar but school and music practice, plus the usual chore type things. Friday there's two hours of therapies, then orthodontist appointments, then home again for more school and cleaning. Saturday has church, choir, potluck, then a birthday party/family reunion evening. I feel sure that something must be on the calendar for Sunday, but no. Monday has a dental appointment in the morning, then nothing but school and cookies. Okay, cookies aren't on the calendar, but they might be by the time I head to bed tonight.

In short, life is often a whirlwind of activity. I find myself cranky with it all when I've failed to properly immerse myself in it. So I'm off to do that. You, my friends, must stay here and write me algorithms for medical decision making processes. Or put up a pie chart. Or graph. Seriously, parts of this are weighing on me and I need some new way(s) of viewing it all, lest I go hide in a cave.

I'm off, boy's out. I'll do some quick strengthening stuff, being mindful of the knee, then lock myself down 'til morning. Sounds lovely, yes? Well, it is. You should see the giant boulder I'm planning to roll across the cave doorway -- quite impressive, mostly made of cheese with some quartz mixed in. Hmmm. Monty Python's suddenly rolling through my head. Wonder what that's about.

Must. sleep. now.


Do something

I've been involved with a charity for a year or two now, one that came about partly because of how things unfolded right around the time Q was born. It's not an easy thing to be caring for a special needs newborn, much less his four older siblings, and alone at that. As time has gone on I've been more able to pull everything together, though it still ebbs and flows. I used to get either my teeth or hair brushed, but never both within spitting distance of each other. Get it? Spitting distance? Yeah...

Anyhoo. As time has gone on, Q has not progressed through purees that most babies start out with. He has not gone on to picking up little cubes of cooked veggies. He doesn't make it through a meal without just about guaranteeing that I wear some of his delectable smooth foods. Blueberries don't do good things for a person's fashion aspirations. Because of a variety of other issues, there's also a constant risk of some sort of spitting up -- it's rare to go more than a few days without Q losing some food item that we worked to get into him. Often, that too means that my clothes take a hit.

Enter the dear friend who started Out of the Gray, a charity set up to help caregivers get some of their own needs met, mostly in the clothing department. Before she filed her 501(c)(3) paperwork, before she'd even thought to consider her amazing talent for finding brand new gorgeous clothes in unlikely-ish places to be something she could offer to other people -- women who are somewhat overwhelmed by the demands placed on them.

When times are tough, mamas scramble even harder for their babies, even when those babies are full grown. Women work themselves nearly to death every single day caring for a mom or dad, as that person they knew as parent is being slowly stolen away by a degrading brain. And these are just the typical examples. How about a sister caring for her child-like younger sibling because there's no one left to take on the job? I bet if you think back you'll remember watching moments of pure grace unfold when someone stopped to care so tenderly for a child in a wheelchair, or to scoop up a five year old whose knees are giving out as she learns to walk. If you've looked especially carefully you might have witnessed kisses bestowed on a laughing punkin whose delight may never come in words. There are a million different ways to love our families, many of them honoring courage that defies naming. So. Here's the news: she's helped out three women now, and has more names on a list. That paperwork is in the official government pipeline. A fundraiser is planned for February. And she has a Paypal button. Here's the link: Style with Purpose.

Saturday, October 03, 2009

In review

What a week.

Last weekend was our church retreat. It was fantastic to spend some time in renewal, especially next to the ocean. I really can't say enough about it -- good food, great setting, fantastic conversations, kids coloring and taping and gluing and loving it. It was a special time, spent getting to know some really lovely people a little better. I'm especially grateful to our pastor, who took off after a group of kids who fancy themselves as young mountain goats and had sprinted ahead of the hiking group. He caught up to them to stridently warn them back from the edges overhanging the whirlpools and point them back toward the rest of us. Small shudder there, but all's well that ends well. Yes? Yes. (We just won't speak too much about my hike, which was with a dad and his son, all the way up to the bridge -- is it 400' above the point we spotted the runaway group on? We guessed wrong at the fork in the trail. Hooray for quads and glutes, baby.)

Monday was a relatively quiet day. Q's chair needed picking up, since he had extended himself fully out and broken off the very strong footrest, right at the screws. We'd had a loaner for the weekend from the pharmacy/supply place while they reinforced a new footrest and replaced all manner of other stuff for the boy. So we did some school, then packed up our stuff to go to the dentist (no cavities for all four big kids, hurray) and take off for the pharmacy. Looked at furniture with my mom at a going out of business sale, then made a quick stop at Trader Joe's for part of the week's provisions before heading home to make supper.

Tuesday we had the usual therapies and school, Q's chair got a substantial tweak from the equipment modification expert at the therapy unit, and I took a friend and picked up a table and it's chairs from a Craig's List ad. I was going to offer them less than they were asking for it, but he's Navy, and well, I couldn't do it. Besides, the set is in good shape and he packed it up so nicely. It's a perfect size to spread out at for certain children who are doing ever bigger projects and research and needing a thousand books plus computer access, simultaneously. And it has a leaf. I'm very pleased to have found it for such a good price.

Besides piano and violin lessons and schooling done in between, Wednesday was Q's first day of school. Can you believe it? Kiersten shot a couple of pictures, so I'll have to see if I can share some here. The preschool teacher is a dream, really. Q loves her already and thinks he might be fine if I were to just leave him there and bring in some food sometimes. I mean, there's a PT (love her -- the one who added that he's a bright and delightful boy in the last meeting with the school district), the nice teacher lady sings and claps with him, there are instruments to shake with the music, he gets to color with markers. Who wouldn't want to move right in? Next week, the SLP will be in and the PT will be dropping off a couple of seating arrangements to try with him, including something that looks like an oversized Bumbo seat. A trip to Target for clearance shirts for me, clearance blankets for some of the kids, and generally everything but the shampoo that I needed, and we were off to home for leftovers for dinner.

Thursday was Q's neuro appointment. The big kids stayed home with a friend, cleaned up and did chores and schoolwork, while Q went off to wow the neuro guy. It's always fun to watch, how the neurologist grins back at the boy when his infectious smile spreads across the little chubby-ish cheeks. The bottom line for this appointment: the neurologist is happy to see him making progress, glad that he has services in a classroom, is continuing to learn at home as well, and is having several visits a week at the therapy unit. Glycopyrrinate and Baclofen were discussed, for drooling and tone/spasticity respectively. The former can cause constipation while the latter can cause sleepiness. I'm not seeing either as being an absolute benefit at this precise moment, but when Q returns in January, it will probably be to discuss how we'll proceed with those meds. If he has a drop in tone with the Baclofen, I'm considering pushing immediately for a lumbar test dose and then, if that looks good, on to the intrathecal pump. I do want to know, as Q's OT raised today, how high up various local docs are willing to place it. There's some concern about cranial nerve/cardiac affect, if it's placed too high, but too low, and the fine motor changes that we'd be really hoping for don't show up at all. Plus, there's gravity to consider too -- the meds would flow down from wherever it's placed... So, more questions than answers at this point, and I have that thought of eye surgery flitting around in the back of my head. I'm wishing I could defer to someone else for some of this, or at least bounce it off someone.

And today -- two more therapy appointments, plus general clean-up and some school, lots of reading. I let the kids be a little bit lazy today (read: watch tv during the day) because I was so tired. I've scheduled them so they can have a little of that, and we needed it today. Plus, the general cleaning up part of the day has brought on new projects and enlightened us as to other things that need our attention. And we'll be having a very busy weekend, lots of family in town. And next week looks fairly tightly booked as well. Lots to do and see. Pray with me that on Monday I will be not any kid of sick, and certainly not the kind that involves water and waves. I've never been really sick on a boat before, even when I was pregnant and we were in a storm with twelve foot swells I was just queasy, but the time before last when we were all out it was horrific. This time that's not an option. It will be just me filling the position of parent/grown-up and my charges are in it for actual education. So, yeah. If you have any helpful tips, please share. I'm taking anything from meds to meditation. I'll take suggestions for the children as well, since they may or may not be just fine. It's hard to tell.

Hope you are looking forward to a peaceful and renewing weekend with your beloveds, carving out some time for true communion, a space in which to deeply rest and become you, only calmer, happier, more thankful, loving and kind. Take good care, and have a good sleep.

Monday, September 28, 2009


What a fantastic article. Note that it is one of a series to be published.

I found myself nodding along with the author's assessments and descriptions -- mostly spot on and quite articulate. No doubt he's already provoking a great deal of manufactured controversy, delivered by folks who read defensively and thus missed his explanation of a life that works for their family. Funny how we filter, yes?

Tuesday, September 22, 2009

Q news

It's been awhile since I've laid out what's up with Q, so let's dig in, shall we?

While I was teaching art, Q's SLP tried a little something different with him for their session. She mixed together a 4 oz container of stage 2 pears and about half a box of his Boost supplement. The consistency was a little more solid than a melted milkshake. He drank it right down, no fuss, a minimum of muss. So I'm pretty much mixing everything to that consistency these days. I think he's caught on though, and seems to now suspect that the rest of us are having food better than his. Wah. As much as I would love to have one thing for him that could be just solved, once and for all, he is a growing boy and I would get bored with that. Eventually, I am sure. Still no swallow study scheduled.

Our beloved OT is back just part time and so we're still with The New Guy. He wouldn't mind being called that, because he has a deadpan sense of humor. Q was mildly taken aback at that, but has since caught on and obliged delightfully, speeding up his response times and pushing himself a little -- obviously choosing which activity and then pushing buttons repeatedly so he could get what he wanted. The New Guy has an interest in AAC and catches passing opportunities to learn more about how to apply adaptive thought to kids' needs.

Our beloved PT (once A New Guy) is seeing Q twice weekly now. We're looking at rearranging the schedule a bit, so mommy can keep those last shreds of sanity (snort), but we'll keep two hours per week of PT. Our PT is in charge of equipment for Q (coordinating needs with the other therapists). When I brought up the stander issue last week (it's extended out as far as it will go, height-wise), we ended up discussing each of the other items Q's using or will be likely to need soon. I learned then that we're hoping the walker will take the place of the stander, at least eventually. A few weeks ago I finally got the leg splints Q has needed, and he's using them successfully, pretty much daily, to keep his knees at 180 degrees (straight) while he's in the walker. He needs to have constant attendance with this, because he slumps when he gets interested in other things and isn't relying on high (increasing) tone for upright support. Other equipment: next week we'll pick up a loaner potty chair, or rather, we will if Q fits it. This is stunning, no? He's dry most mornings, so we're going to give it a shot. So to speak. Later this fall Q will need a new set of AFOs and is new ones will have toe straps, to help him with pronating big toes. Something that we may eventually be looking at is at home e-stim (electronic stimulation). A small, alternating electric current is applied via sticky electrodes to particular muscle groups to help a kid recognize those muscles. These kinds of units have been touted in infomercials as the latest in exercise, providing a passive method for increasing muscle mass. It doesn't work that way. (I know you're shocked at this.) It's more like a tickle, a strong tickle, that calls attention to itself, helping the client/patient to have increased awareness of that particular area. Q has used this in PT a couple of times so far and was quite a bit more upright as he was standing, playing with his favorite ball. It's exciting to see, and seems promising, but I'm not anxious to add another piece of equipment to our lives unless it's clearly needed. Space and time are both pretty scarce just now.

Q goes back in October to discuss Life Without Trileptal and perhaps even the timing of an oral Baclofen trial. I attended a CME on Intrathecal Baclofen about seven weeks ago. It was fascinating. Really. Sometime we could discuss GABA receptors and Baclofen delivery methods, liver toxicity, lumbar test dosing and proper placement of the eventual pump. Really, really cool information.

But for right now, the boy went down and all appropriate machines (dishwasher, washer, dryer) are running, we have earlier than usual therapies in the morning (hoping this time slot could become a regular thing) and so I am (shhhh...) going to bed. He didn't go down until 1:30 this morning and was then up a few times in the night, so sleep is seeming like the loveliest thing in the world.

Rest well, more later. XO

Friday, September 18, 2009


I had a meeting with the school district this week.

Their email:
It sounds like we can offer services in the classroom at this time. If you are not able to have Q attend due to scheduling issues you have the right to not participate in special services. If you would like to do so I can send out a Written Notice and letter to explain this formally. Let me know what you decide. Thanks,

My response:
Thanks, _____. I want to be clear, though, that scheduling is a tangential issue for me. While it presents certain difficulties, none of those difficulties is insurmountable. The original issues remain: First, which services will best meet Q's needs? His neurologist has indicated (and his pediatrician and I agree) that an ongoing combination of CTU and school services would be most beneficial to Q. Second, how do I keep Q as healthy as possible while maximizing his use of those services? This goes immediately to his ability to participate in learning -- as we've discussed, when he's ill his already reduced capacity to participate in daily life becomes non-existent, right down to feeding, never mind learning or therapies.

I am fairly unconcerned about Q's basic intellectual development -- his home environment is rich and varied, presenting age appropriate and older learning opportunities. However, I cannot provide for him the access to specialized equipment and personnel which is available through the ______ school district-- all of which have, again, been clearly indicated as part of Q's best case scenario by the doctors in charge of his care. I believe his IEP would reflect the same, per the school district therapists' evaluations.

Gotta go feed the boy again. Thanks again, _____.


This does not remotely represent the whole long conversation, but it might, maybe, convey my frustration with the process. He's had an IEP since January. No services, but meetings here and there, and plenty of patting of my head for suggesting that he is even approaching medically fragile. He is borderline immuno-suppressed. Well. I'm assuming he is, since we don't pass a winter without steroids in the nebulizer, his first respiratory diagnosis came before he was two months old, and his functional respiratory diagnosis is Reactive Airway Disease.

I resent, yes, I resent that these meetings have morphed from an atmosphere of camaraderie to one of suspicion. Or something. They began with us all being pretty open about the things available to Q, the therapists being magnificent (they still are), and have ended up with me bawling my way through the last one, seven persons who work for the district vs. me. The PreK teacher seems fantastic. The therapists seem fantastic, one of them who met Q a year ago going so far as to gently amend the summary of Q with a few details of his personality, which she clearly finds to be delightful. The rest? I don't know. I imagine that it's much the same as in other professions, like medicine: doctors talk down to their patients because so many patients refuse to participate in their own care or literally can't develop a vocabulary that will help them to do so. It's frustrating then for a patient who understands more than your average bear to be treated like an imbecile. It's frustrating for the doctor to know things that could change that patient's life forever, only to be ignored.

I'm about to fall over on my head, so I'm going to sign off and sleep, I hope. Q is snuggled up with grandpa, so now's my chance. I've got some writing to do elsewhere and then, next up: the summary of Q's current activities (I hope).

Hope you find yourself overwhelmed by kindness, sleep-wealthy, and thrilled to be where you are. Pax.

Monday, September 07, 2009


I would totally do this.

Friday, September 04, 2009


School's been a bit of a struggle this week. We've had some book work, some art, lots of piano and violin, a kid who set her own alarm for 7:30 and is getting up to take things on in the morning (go back and read that again -- it took me awhile to understand those words myself), some need to confiscate various screened devices (boredom = lots of reading). We've devoured a big box of peaches, tomatoes on the vine, attended to therapies, groceries, more therapies, more reading, earlier bedtimes (recalling the 7:30 alarm -- hooray!), and a gazillion loads of laundry.

Getting the kids into the swing of things is always harder when certain other aspects of life are up in the air. First there's the adjustment involved in coming back from their dad's, then the fact that I'm trying to rearrange chunks of the house. It's a bit confusing, really. Something has simply got to give as far as Q's equipment goes. He must be able to use it, we must all have living space, some of us do enjoy sleep and find the level of chaos surrounding the management of stuff to be time consuming and draining in the extreme.

I fantasize about getting the kids down to a couple of pieces of memorabilia each, their own pillows and sleeping bags, laptops, less than a dozen books, cameras, backpacks, some art supplies, and throwing us all into one of those enormous RVs -- four bunks, each with some shelving and privacy curtains, a couple of drawers and a closet to share. It would have to have a master "suite" which would include a queen bed for Q and me -- other sleeping arrangements would be nearly impossible for him in such a configuration. A crib would take too much space from the rest of the group, and I couldn't put him on the floor because he's getting harder and harder to lift. I think we could easily get his walker and chair into such a space, though. Maybe the feeding chair? Or the Bingo could fold up and slide underneath in those spiffy compartments.

I've always wanted to do this, even before Q. Back when their daddy was working such long hours that it was a serious fantasy of mine just to get him into a place where he couldn't answer a pager, phone, or email, where he could just be with the fam and we with him. I was reasonably sure that even in an RV the bedroom door would have a lock on it, and I wanted us to go see Williamsburg, spend some weeks, maybe months, touring the country, making memories with the kids of caves, canyons, buildings, trains, art, deserts, beaches, us.

Anyhoo, it's still something I'd love to do, with involved and careful planning so we could manage Q's stuff. It has occurred to me that time for something like that may be slipping away as Q gets bigger, his spasticity more pronounced, and he's generally just harder to maneuver. I haven't looked into modifying an RV, but it's expensive to deal with just ordinary autos' mods. I've considered the fact that payments on a ginormous vehicle are less than rent, and that it would be a character building exercise for us to just live in that kind of space.

Aw, c'mon! Think positive! Stop rolling your eyes. Anyway, the kids won't miss it if we never do it, so I will tell myself. They've gotten their RV experience in already, so they're much more pragmatic where I have delusional romantic notions.

How did I get off on that? Oh right, stuff. STUFF. Maybe six years ago now I heard about a guy who decided that since his travels kept him both collecting things and spending very little time actually in his home, with his stuff, he was going to turn all his stuff into digital format. So he took pictures, made notes, wrote a little about the memories he had surrounding those objects, and ended up with a drawer full of compact flash cards in a bank. Wow, I thought. Way to go. Kids and babies do not subscribe to this philosophy of traveling light, be it through life or on actual trips. But with help they can be converted. I'm pretty sure. We're working on it.

There are things I would have once had a serious problem letting go of. They just seemed to represent so much of our family, then -- memories, really. It's amazing how life sometimes conspires to change our attachments. When we were planning a cross-country move it hit me so clearly that the stuff wasn't us. We were more than the things we owned, such as they were. When much of that stuff that I still thought of as precious later disappeared, some in a misunderstanding, some through means I can't really explain, it was an uneasy time. But I'm still here. I still have the memories. Certain things I think I'll always keep (anniversary presents, letters, pictures), but suddenly, well it seems sudden but it was probably years in the making, I want to load up my little brown messenger bag (that I got in college to replace the one that was full of that quarter's books and my whole cashed paycheck and was stolen out of my car when I popped into someone's apartment to say hello one evening...). I want to load that durable little fake leather bag up with a few minor electronic things of mine, put the aforementioned personal items into individual (small) spaces for the kids, and just go. There would be a few other considerations -- I need a decent pillow, Q prefers sleeping on memory foam. We should pack clothes enough to last between laundromats. But Q's not needing doctor visits every five minutes just now (though winter's coming), we have no seizure meds to concern ourselves with and the Baclofen talk doesn't happen until October (new med to try which means we're right here, not going anywhere or doing anything while we figure that out), his equipment is smaller now than it will be in the years to come.

Hey -- I could get the kids' passports all in order and we could see P.E.I. while we're back on that other coast. How cool would that be?

I could continue, but adding detail to the fantasy doesn't really accomplish anything. Q's finally out, and I'm wiped. There's lesson planning to be done, writing, ordering, tossing, filing, and garbage yet to attend to. Aren't brain vacations nice anyway? Maybe we'll have to think up some variations then. Or just go ahead and budget for a 1.5 terabyte external drive. That would hold us for a bit, while I try coming up with some new travel fantasy. Maybe this one should involve nursing care for Q and scheduled naps for me -- probably the single scariest thing to me about taking off cross-country with the kids is how durned tired I am already.

XO, peeps. Hope you're resting well.

Saturday, August 29, 2009


Q's sleep thing has sorta kicked my butt this week. The worst was the morning that I handed him off to my mom at seven and went back to bed. I slept until nine. I was pretty sure that I'd had some sleep the rest of the night because I'd kept waking up. Wah.

But we're all basically healthy, and glad of it. Speaking of which, a friend's 12 year old sure could use your prayers. He's having bones put back where they belong in the morning. We were there when he fell. There was really no question that his arm was broken. Bones don't bend like that. Poor guy.

The floor is mopped, the kids clothes are folded and in their own baskets to be put away. Sadly, the dishes are waiting for morning -- too much noise, since Q is out. I pushed them to the back burner so I could do the bedtime routine with the girls. And then mop some more, because that's quieter than dishes. I'm all in, folks. Hope you have a lovely weekend, all.


Monday, August 24, 2009

Random catching up

I think I've moved beyond the revelations from the last couple of weeks. I think it might not have mattered what I had done a-way back then, since none of what happened was about me in even the smallest way. I need my head to work well, in the here and now, so I don't have time to spend on things which ultimately aren't my responsibility, no matter how I feel about those things or the people involved. It just can't matter anymore, certainly not enough to take me away from the stuff I really am accountable for. Maybe someday I'll have an opportunity to interact with those folks again and it can be a healing thing. But for now, this needs to fly off in the wind.

This morning I discovered a... (whispering) tiny watermelon in our garden. We've never had much success with melons of any kind, but there are two itty bitty ones out there -- about 4 and 5mm. We have a bazillion green tomatoes. We've gigantic still green Romas, jewel-like yellow pears and baby red ones. On one side, there's a small plant with a single fat green tomato that just keeps getting bigger. It's not a beefsteak, it's an heirloom that should be yellow and red striped when it decides to turn. There are two inch-long yellow crooknecks on gigantic plants with several dozen blossoms. No idea why there aren't more actual squash. No pumpkins yet, and they're running out of time to produce anything useful. There are cukes climbing up cages -- smaller burpless and then, the so-far dark green lemon cucumbers. They're giggle inducing, like Dr. Seuss fruits. For unabashed pretties, we have begonias producing blossoms like they've got only minutes left to do so. There are fat Marshmallow fuchsias in baskets, million bells in as many colors, and big blue "mornin' gories" by the front door as well as tiny deep royal purple ones, further out, almost under the giant maple. The two beds of impatiens are funny -- fluffy as can be, one red, one pink, both in deep shade, looking almost plastic in their perfect symmetry and buddedness.

It's sweet, this place. We've had good lettuces and "bropplies" this year. Soon it will be time to dig up the potatoes. Wanna come over?

The upside of yesterday's adrenaline rush was discovering that Q is not allergic to bee stings. Poor little ducky. He jumped when it flew by, but was still excited because he's always intrigued by new things to discover. But then it landed and just stung him, faster than I could wave it off. The sting was barely inside the crease by his mouth, not quite under his nose. A quick paste of baking soda, a half dose of Benadryl, a shot of ibuprofen drops, then some homeopathic anti-inflammatory cream and he was beginning to look himself again. For about an hour he had looked like he'd lost a fight with a wee angry middleweight. But by this morning he was fine, and I'm almost over wanting to eradicate every api-thing I can find.

The last several days, really the whole last two weeks, were so neat. Hosting kids who don't get access otherwise to such nifty creative teachers was awesome. Having kids who were excited to be there was awesome. The volunteers were awesome (and funny besides being wonderfully helpful). The end shows were super, the church service tear-jerking, the kids accomplished. (I've added some music -- pieces they performed.) As was the case last year, I've never seen such a bunch of smiley tired people -- even if most of us did come down with "heads full of concrete" sometime during the week, to quote the pastor. I think we're all blinking, adjusting to not barreling through traffic to fine arts classes today. I know my crew is.

One of the most piercing moments came the first week, just after one of the camp counselors had come in and expressed, in some awe, how cool this all was for the kids they'd brought. We were whirling, absolutely flying to keep eighteen palettes full of paint, water containers fresh and full, canvases supplied, messes mopped up. All hands were on deck. I had the counselor's comment fresh in my mind, the theme of "You've Got a Friend in Me" was burned on the back of my eyeballs, and our pastor just then passed swiftly by with a tray of freshly filled water containers, trading them out for the muddied ones. I thought to myself, with a feeling of dawning recognition -- "Ah. Communion. Of course." It was sort of a distilled moment, where the clouds open, sunbeams float straight down, and if you're lucky, the angel choirs' tones come wafting in. We had those dulcet tones -- our angel choirs wanted more paint, pronto.

What a privilege to have been a part of shy kids coming out of their shells to perform, awkward ones revelling in form and line, and the creatively inclined breaking new ground with themselves -- all while forming new friendships. Twas lovely.


Swerving wildly... I need tips on how to let someone down gently.

It's rather an awkward situation. (When isn't it?) I've spent a grand total of maybe ten minutes speaking with this person, spread out over perhaps three years. In that time, he's never inquired about anything of substance about me, never acknowledged my children. Well, that's not true, but never mind, that's even more awkward. And yet, he's managed to compliment me, pointedly, specifically, and awkwardly, and has sort of started following me, a bit. I know absolutely nothing about him, can't even pronounce his name, I'm always in motion, and practically run away from him, but he persists. Geez-o-Pete. How does a person not get the hint?

Do I say, "I'm sorry to have never stopped and looked directly at you when you speak to me, but I'm kind of busy and I will always be so." Or, "Please stop commenting on my hair or I'll have to shave it off, just to make you stop. I'm begging you. Don't make me shave my head." (If the hair is attracting someone who lacks even facile social skills, shaving it off seems a perfectly reasonable solution at this point.) Or maybe I should buy a big, gaudy ring, and pop it on my finger when he approaches, or just wear it whenever I have to be where he's likely to be?

I've considered doing that before, just because I get tired of the odd little things that happen at Target or the grocery store, the park, the library. Let's just say that there aren't many men who are in any way wholesomely attracted to a single mom happily trailing five kids behind her, who also then happen to be a person I'd want to hang out with, on any level. Most of them make the oddest assumptions, along the lines of one of my formerly FAQ: "Do they all have the same father?" Some of these, um, "men" are wearing holey t-shirts which just yell out, "HEY! WANNA BE MY BABY MAMA? YES, YOU DO!! C'MERE!" Only without proper punctuation.

Perhaps what I really need is a knight protector. Do you suppose Lancelot is available? Nah, too much baggage, what with his smarmy arrangement with Guinevere. And poor Arthur -- not a good BFF situation there. Maybe some other version of knight, then. A tall and smart someone with a wicked sense of humor who wouldn't mind looking fiercely at this person to frighten him away, hopefully while cracking jokes with me. Maybe a kah-NIG-et is what I'm after then. Just as long as he doesn't smell of elderberries. It might be hard for this other person to take the whole thing seriously if I'm in the background, shaking with laughter.

I digress.

Any applicants for the position of K. in S.A.? All male applicants will be considered, including anyone of a different orientation -- I've long heard that every woman should have a good friend who's happy. The position posted pays nothing, but I'll make ya brownies. Short repeat appearances may be necessary, at least until Mr. IlovebigfamiliesandIthinkyourhairisbeautiful (First name: Iloveyourdress-ogleogleogle-wherewereyou) gets the message. After he gets the message? Well, I'd still pop up some popcorn and watch movies with you, your call.

Okay, so since I'm unlikely to get (m)any applicants for such a volunteer position in this job market, I'm asking you, dear readers -- please for to have advise with kind deconstruction on scary man opinion and for always nearness?

Seriously. I'm out of practice shooing guys away without breaking them. Please don't make me break him. I hate that. It hurts my heart and it makes me cringe. For years.

Wah. (Head in hands)

I'm off to order the last bits of consumables for the kids. Please. I need help with that person. I need this not to wreck an otherwise very much appreciated part of my life.

Thank you.

Tuesday, August 18, 2009

Deep breath

I'm still stinging and feeling nauseous. I wish I knew how to speak of this in a useful way. I wish I hadn't been so... what. Trusting? I don't wish that. I believed I had reason to place my trust where I did and I did not do so blindly. What then? Perhaps that's the thing that has tipped me on my head -- I don't know how to respond to this.

I feel a gazillion whirling things. Blinding rage at being played for a fool. Eviscerating, debilitating sorrow at the shame others must have felt that led to the choice to lie. Sadness at unspeakable and completely needless loss. Bewilderment at being judged a poor risk -- else why keep this so carefully buried? Am I really likely to hurl back razor blades upon revelations of vulnerability? Am I giving off some indication that I'll morph into some mythical howling monster if my understanding of things is challenged? I guess I keep coming back to an odd, imperfect compassion -- as wretched as I've felt over this, how horrible would it be to be the persons keeping a secret they believe will destroy them and everything around them if it gets out? How much must those people have suffered in doing so?

And that part breaks me. I cannot begin to understand the amount of suffering already borne over this. I know only my own, parts of others, and can guess at that of the extended circle(s). It defies perception. That part, the suffering part, is pure, distilled evil. Perhaps that thought brings me full circle, to this. It's the only thing I've got any say in -- a renewed commitment to end the suffering, to not engage in storms created by anyone, anywhere, to lay it down, over and over again, until the motion of it becomes so fluid that I don't even notice myself doing so.

Oy vey. Deep breath. Here we go, then.

(Please God, let it be...)

Sunday, August 16, 2009

Opportunities for personal growth

Yuck. I learned something tonight that is merely a confirmation of things I'd long suspected. Here are some of the existential questions that formed immediately in my head.

Do we actually "deserve" anything? Is it true, for example, that a person can actually "deserve better than ______"? I'm beginning to think that no one "deserves" anything. Respect for each other as humans may be sort of the last remaining arguable point. Weird.

How does one focus when one instead would like to behave with shocking anger toward certain persons? I'm becoming accustomed to the feeling of having my outer layers peeled off, tired of it as I may be, so I'm sure I'll be fine, but really -- what is the process of focusing oneself while under duress?

And how about lying to cover something up, whether by omission or commission? Is a lie really worse than the actual thing? For me it totally is, for too many reasons to go into. In fact, it's all about the lie. Yes indeed it is. Does a person being scared of the consequences if they do not lie mitigate it at all? Usually. I think in this case it would have.

How about ego? Does the fact that things reflect on us steer us toward a less reasonable response? Yes. It does for me. Perhaps this is why I would cut oodles of slack for someone who was afraid of excoriation if the truth emerged -- I don't like being made a fool of and it horrifies me to think I may have at any time, under any circumstances, contributed to someone else feeling that, so compassion seems in order when thinking about forgiveness, be it for lying or whatever.

Is it true that people can repair literally any relationship thing, so long as they choose to? I think it is true. I used to believe this without a flicker of doubt anywhere on the horizon. Speaking for myself, I'd say that part of my ability to do so would depend on the amount of kindness any other person(s) involved were willing to extend. Hostile folk are not fun to work with and tend to be impossible to please. They're often caught up in justifying something. If you're busy justifying something, humility and dedication don't really have a place in the process.

It's times like this that I fantasize about having the kids grown and settled, successfully educated, happy, gainfully employed. In this fantasy I have a current passport, a kick butt backpack, and a nice toothbrush. Maybe a good camera. Khakis and boots? Yes. And good snorkel gear, a water purification system, maybe a satellite phone -- in case of grandchildren. I think that will cover it. I'll grow my hair to my ankles or shave my head -- for ease of travel. I'll have a cheap retirement. Far, far, far away -- maybe riding freighters around French Polynesia. Hey -- maybe by then space travel will be an option. I can go along and clean bathrooms to pay my fare!

It's always good to have a back-up plan.

Friday, August 14, 2009

One down, one to go

The first week of fine arts academy is over.

We are exhausted, but thrilled with the cool stuff that's happened so far. The bigger kids helped shepherd through a couple dozen children from a local Boys and Girls club. They all did choir (including a very cool rap piece), and then guitar, percussion, and art. It was a mad sprint, with the kids arriving every day by bus -- public transportation being not especially timely, meaning that each class was a juggling exercise. But we had an artist come in and do a brief demonstration -- he'll be back for more next week.

One of the leaders commented to me when they arrived that they never get decent art supplies. Score! We're delivering sketch books, pencils, and newsprint pads along with their matted work and other completed pieces late this next week (they needed time to dry before transport).

What an incredible opportunity to have been involved in this, a volunteer effort funded by the people who put together the organization that makes the yearly Christmas outreach possible -- His Kids.

I need to say a huge public thank-you to all the people who have helped to make this possible -- friends and family for the home and Q parts (including grandma rearranging her work schedule to be here), and all the wonderful people who just kept popping in and asking how they could be of help. Are there lovelier words in the English language than "What can I do?" Maaaybe. Right now, those get top billing.

Next week will be longer days, more involved classes, more paint and paper and water and mats and mess and literally running from one thing to the next, taking three flights of stairs, three steps at a time. But the backdrop is done, and the four banners hung and waiting only for the collage additions from the next classes, the materials are all purchased and organized and ready, locked up safe in the pastor's study.

I don't know who's more excited, me or the kids, but it's hard to imagine being more excited than me right now. We get to sketch in a cathedral this week. Swoon.

Night, now. Gotta sleep fast -- I have more pieces to hang before services start in the morning.


Thursday, August 13, 2009


Too funny -- and maybe a little too close to home for those of us whose fingers are still healing from that last buckling in experience?

Saturday, August 08, 2009


"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.

Thursday, August 06, 2009

Good reading

"I’m apparently one of the few remaining people on the face of the earth who thinks emotional truth is not the same as actual truth and not even within shouting distance of fact. If we all define our own truth based on what “feels” accurate then we really are living in a postmodern world where, as Brad Holland put it:

'Postmodernists believe that truth is myth, and myth, truth. This equation has its roots in pop psychology. The same people also believe that emotions are a form of reality. There used to be another name for this state of mind. It used to be called psychosis.' "


Go. Read. Think.

Tuesday, August 04, 2009

A toast

The kind of certainty of self-worth and presence of mind that this woman demonstrated when the chips were down is amazing. I hope to cultivate exactly that level-headedness, centered-ness, whatever that thing is. It is a huge and worthy thing to strive toward. If it applied to marriage only, well, whatever. That ship sailed. For me.

But I suspect that it applies to everything. I suspect that I won't be having a boring life, whatever else one might call it (Q's swallow study has been un/re/not scheduled again). I'm betting that I'll have plenty of opportunity to use those skills, that steady, kind mindset, with my kids, with whatever professional endeavors might come up, with friends. I suppose that this is part of my wondering about that little voice, calling me to change, to growth, to "becoming."

Or how about being able to receive that kind of grace, humbly, with humor, speaking of it and answering the tough questions when the dark clouds have passed? Should she have let him go because he "didn't want her"? Some would give a resounding yes, not even beginning to grasp what she had to pull up from the earth by it's very roots, to have answered his demands the way she did. Perhaps that works for those people...

I wonder if one must move to Montana and/or wrangle 1500 lb. horses in order to be that person?

To a genuine, grown up woman. May we each be one, someday.

(What a thing that would be, huh? All kinds of world-class nonsense would fall, were we leading the daily charge with Love. No small l's. Only Love.)

Hat tip to Abbey for the article link.

Friday, July 31, 2009


Ain't Got Time to Die
Lord I keep so busy praisin' my Jesus
Keep so busy praisin' my Jesus
Keep so busy praisin' my Jesus
Ain't got time to die

'Cause when I'm helpin' the sick (I'm praisin' my Jesus)
When I'm helpin' the sick (I'm praisin' my Jesus)
When I'm helpin' the sick (I'm praisin' my Jesus)
Ain't got time to die

'Cause it takes all of my time (It takes all of my time, it takes it all)
All of my time (to praise Him)
If I don't praise Him the rocks are gonna cry out
Glory and honor, glory and honor
Ain't got time to die

Lord I keep so busy workin' for the kingdom (workin' and I'm workin')
Keep so busy workin' for the kingdom (workin' and I'm workin')
Keep so busy workin' for the kingdom (workin' and I'm workin')
Ain't got time to die

'Cause when I'm feedin' the poor (I'm workin' for the kingdom)
When I'm feedin' the poor (I'm workin' for the kingdom)
When I'm feedin' the poor (I'm workin' for the kingdom)
Ain't got time to die

Lord I keep so busy servin' my master (keep so busy)
Keep so busy servin' my master (I'm servin')
Keep so busy servin' my master
Ain't got time to die

'Cause when I'm givin' my all (I'm servin' my master) (I'm gonna give my all to Jesus)
When I'm givin' my all (I'm servin' my master) (I'm gonna give my all in all)
When I'm givin' my all (I'm servin' my master) (I'm givin' all of my life to Him)
Ain't got time to die

Now won't you get out of my way (oh get out of my way)
Get out of my way (you better get out of my way)
Let me tell you if I don't praise Him the rocks are gonna cry out
Glory and honor, glory and honor
Ain't got time to die

Glory and honor, glory and honor
Ain't got time to die
Ain't got time to die


How cool would that be as a church charter? There was a Salvation Army truck in front of me on the freeway yesterday. It's slogan across the rear door was huge: Hearts to God, Hands to man. (nodding)

I spent last evening at a CE class on Intrathecal Baclofen. It took a few minutes for me to re-immerse my head in the big words -- medical terminology and muscle groups, agonists and inhibitors. I've been reading a ton (shocking) on brain development and neurotransmitters. "They" don't exactly understand Baclofen's mechanism(s), but it appears to send or make more GABA available at it's receptor sites. So, after my reading and the class merged in my head, I've boiled it down for us: It's all about the neurotransmitters. Duh, you may say. Well, yes.

But think about this -- what if ADD, infidelity, violent impulses, and a general inability to get where you say you want to go in life, all boil down to a person having a balanced brain? More and more research points past the myth of the perfect brain (and it doesn't exist, not statistically speaking) toward the importance of getting and keeping one's neurotransmitters in balance.

So, when thinking about research in health and longevity, there are two things you should know. One, do whatever you can to drop your levels of inflammation. Do this by eating well, exercising, ingesting very little processed "food" -- a huge source of systemic inflammation, and getting good rest, lots of water. Do whatever you can to avoid HFCS, hydrogenated oils, food coloring, and MSG. Be just suspicious enough when it comes to your food supply.

Two, figure out where your brain has dropped it's neurotransmitter marbles, round 'em up, and manage them. If you lash out with alarming regularity, you might consider GABA. If you have trouble keeping all the balls in the air simultaneously, think about L-tyrosine. Hopeless? SAM-e or 5-HTP might help. There is endless information to be had about vitamins and minerals facilitating those neurotransmitters, and Omega 3's should make up most of your brain. Did you know that your brain is made out of at least 60% fatty acids? You want it to be made out of Omega 3's, not so much 6's or 9's -- which show up in cheap oils and fried stuff. Picture your brain, instead of being all healthy and jello-y, looking like the crispy stuff on a nice piece of KFC. Yeah.

Disclaimer: I am in no way qualified to give out medical advice and you should research these things carefully for yourself. There are great nutritionists out there who can help you figure out how the things you're putting in your mouth might be either messing with your head or helping you become the person you want to be. And, you know, you still have to take personal responsibility for your choices and their ripple effects. But what if you were able through your diet to increase your ability to relate well and in fact, to make good choices? At the very least, it's an interesting thing to contemplate, no? And I believe that there will be huge implications for Q as we go along. What a cool time to be alive, yes? Amazing things to learn and appreciate.

Happy weekend -- may you make for yourself a healing Sabbath space and approach your coming week renewed.


Thursday, July 30, 2009

And... We're home!

Plane, train, automobile.

There. I've been itching to say it and I finally gave in.

I slept not a moment of the night before I left, too wound up. I printed my boarding pass at home, hit the ATM (not like that) at 4:52am, was dropped off at the airport to negotiate an exceedingly easy security line, and even had time to use my little giftcard at Starbucks before piling on to the plane. Whereupon I slept in spurts, enough to drool, so attractively.

We landed a couple of minutes early -- the air temp here was 75 when I got to the airport, 66 when I landed there. Weird. I grabbed my stuff and hauled my tail out to the curb ASAP and spotted my guardian angels/driving friends literally as I walked through the door. I threw my stuff in and we were off.

After having some serious beyond-the-call-of-duty help from several really kind Amtrak employees, we got our big bags checked and boarded the train. To wait for another one to arrive so that train could make it's connections. Oy.

The kids were exhausted too, so almost as soon as we were all given seats (more thanks to those hard-working Amtrak guys), we were snuggled down in our pillows and blankies (which were shipped ahead so I wouldn't have to check bags on the flight), and out cold. Something about the rocking of the train? The level of exhaustion all around? We managed snacks and little spurts of entertainment, but kept falling asleep, curled into our reclining seats.

So now that we have all that for experience, here are my hot tips for train travel. Do take your own pillows and blankies. It got chilly on board and you'll need the extra padding. Do take snack stuff, especially some higher protein items (helps avoid those melt-downs). We ate most of the stuff I sent ahead and could have used more. In fact, if you're going to be on a train for enough time, really, do get sleeper accommodations. I believe meals come with those tickets, a fact which in this case would have allowed the sleeper accommodations to have paid for themselves. No kidding. And they come with access to the on board theater, sweet stuff, and daily local wine tasting with artisan cheeses on the side. All free. Oh -- and! The Parlour Car. A refurbished old car in which only those with Sleeper tickets are allowed to eat, ordering from an "alternative menu" and whatever else they do in there. Funny -- makes me think of that show, what was it. Wild, Wild West? The Parlour Car seems to be from about the same era.

The kids did well. E and K watched the sun rise over a snow-capped mountain, we followed bodies of water and played guessing games about them, we started reading "Twenty One Balloons" (love that book), and played some Uno and Skip-bo. G was such a super help, offering to run through the five cars between us and the snack area to grab whatever, taking my cell and various sisters' DSis to the limited plugs for charging. They were all troopers, and kind and helpful to other passengers. Which was noticed and commented upon by train staff and passengers. "Your children are extremely well-mannered." Is there anything that can warm the cockles of a mama's heart better than that? I'll leave you to ponder that as I prepare to sign off. The room seems to be moving rhythmically and I hear click-clacking of wheels on rails...

And Q is restless again. But it's down to 82 inside so far tonight, with second story window/fan combinations running for all they're worth. It was, according to reports, 113 here today. Right here, in our little town. Tomorrow is forecast to be the same temperatures for surrounding communities as it was today, so we'll be going right from appointments to the library. Or the grocery store, whatever. AC is good and then we'll have packing to do. I think everyone else might finally be asleep, with wet heads, train gunk showered off.

What a wild couple of days it's been. We saw deer, several, at different times, hawks and falcons, pelicans of different colors, egrets, herons -- including one I've yet to identify, otters, sea lions, mergansers, Canada geese, a swan, several snowy volcanoes, lots and lots of water, trees of all kinds. We saw several junk yards, some of the poorest neighborhoods and the biggest houses. Next to the rails were growing grapes, artichokes, cabbages, spinach, lettuces, blackberries, corn. So cool.

We're wiped out. At least until morning.