Saturday, October 12, 2013

Try, try again

I keep thinking we'll get to a place with a little more breathing room, schedule-wise, but not so far.  E is busy with classes, K and S are busy with school work, they're all practicing like mad, we're getting three runs in a week, and Q is therapy-ing as intently as ever.  I'm writing lesson plans, wrangling paperwork, and trying to shove the medical appointments in where I can.  Which reminds me:  list.  One second...

Okay.  More stuff to schedule Monday morning.

Q had a visit with his physiatrist (rehab doc) this week.  We talked through Artane (a no for now - he's typically more spastic than dystonic), Botox (yes, which means organizing ophthalmology and orthopedics quickly - the ophtho appointment needs to move up from February), and possible equipment needs as we move forward.  I like this doc, though we don't agree on everything.  She's respectful of her patients, the family process, and always checks to see if I think her proposed course of action makes sense or if we need to rethink anything.

The bath seat was a fail, unfortunately.  It's not as tall as it would need to be for one tub, and doesn't allow Q's feet to clear the toilet in the other.  On to the next option.  Meanwhile, we await approval for a car seat and a walker/gait trainer base.

So I've been thinking about what needs we have emerging here for Q over the next several months and years.  More immediately, we have a ramp to pay for, and fundraisers are underway for that.  Next up, a low-tech ramp type set up for the van would be terribly useful.  The chair is 60 lbs, so we all "lift heavy" every day - which is awesome, because we can, the big girls and I (though we have accompanying bruises), and we're glad to be able to, for as long as we can.  But one begins to be mindful of things like effort spread over Q's lifetime, of his continued growth, of our own fallibility.  Okay, my fallibility.  The rest of the Q peeps don't seem to have any trouble naming their end points.  I guess as his mama, I kind of feel like I should just keep going.  Which...  ...mumble, mumble... may not be the most realistic way of managing all the facets of Q care, long term.  Ahem.

Other needs that loom:  a ramp for the back door and more accessible paths and areas in the yard (safety issues); bathroom modifications (hoping to push this off a little longer if we can find a bathing solution - he's outgrowing the bath seat and is too slippery and heavy a fish to continue to zoom in and out of a tub as we have been ); new flooring to replace the carpet (too much drag for a boy on wheels - safety issues).

I have further thoughts on sort of "ultimate" equipment or outfitting options, but the people here are asleep and tomorrow brings an early morning.

Have a lovely weekend, lovely people.  :)

Saturday, October 05, 2013


My grandmother turned 91 recently.  She's not as well as she has been.  My family descended upon her to sing and chat, one or two at a time, and wish her well.  The brightest moments I saw were when I asked her if she remembered teaching me to read notes when I was four, and then when the girls and I sang hymns and folk songs.  I'd like to see her again soon.

The girls are busy, busy, busy.  The challenges in getting three conflicting schedules met have kind of turned out to be a blessing.  While "stuck waiting," the girls have been able to make good use of practice rooms and library spaces, getting creative with their time in order to manage their goals.  They're working to pay for their orchestra dresses and other music expenses.

One of Q's OTs mentioned today that it's probably time to think about different solutions for bathing.  There's a rolling seat that (I think) cantilevers over the tub so there's no transferring a slippery, heavy kid into and out of tubs.  Right now, E and I lift him in and out, while grandma or K "catch" him in a towel.  So the rolling seat may be available for loan next week.  The possibility of a great solution is pretty exciting.

The house is quiet so it's time to crash. 

Saturday, September 21, 2013


I've been thinking about how life looks these days.  It seems like the kids are each poised for their own leap into something new and huge.  Ready or not, here comes another new incarnation of the family.  Developmental arcs, for the win! 

The plans for the year include new kinds of writing, history, and philosophy, both at home and in other educational and therapeutic settings.  Two of the four will be based offsite for the bulk of their educational endeavors, with some work ongoing at home.  The other two will be based at home, with some outside work.  The schedules need tweaking already - I'm having a hard time getting Latin in.  That may change after the girls have finished with next weekend's performances (orchestra and wedding) and their practices subside just a little.

The girls all continue with piano and violin, working to pay part of the class fees and for most of what is becoming significant instrument expenses.  I'm not sure where I expected all this to lead, but it turns out that practice causes improvement, which brings further opportunity and development, which are expensive.  I mean, hooray for hard work!  And also: whimper.

Q's stuff is also evolving.  We have a ramp for the front door - a serendipitous thing, if ever there was one.  It arrived just as the growing Q started back to school, and came out of the clear blue sky.  No more hauling the 115 pounds of kid and chair up and down the steps!  We have a generous (and kind) arrangement when it comes to the finances, but I still must figure out how to raise $7800.  Actually, $7670, thanks to, well, more kindness. 

There may be a bazillion bake sales in our future.

In other Q news, he had an excellent dental visit Friday - beautiful teeth and not even an attempted nibble on the fingers in his mouth.  He thoroughly charmed the staff, as usual.  They pulled his errant and wobbly "shark" tooth so the new one can finish growing in. There are scripts in the works from his pediatrician for a new walker/gait trainer/stander base and new car seat.  We have a rehab visit coming up next, I am still waiting to hear if we can move ophthalmology up from February (!), and I need to nail down the nutrition consult. Time to schedule another endocrinology visit as well.  The short term big picture involves determining whether or not Q can have botox (for pecs and potentially thenar eminences), eye surgery, and have the hardware removed from his hips, all under the same anesthesia.  We shall see.

The house is quiet, so it's time to crash.  A blessed rest to you, lovely people.


Saturday, August 31, 2013

Week's End

I'm so glad it's Friday.  Deep breath... 

Conversations about Q this week included prospective special needs car seats, since he's truly outgrown the longest, most supportive, "regular" seat I could find.  He's just looong.  So we'll try out possible models in a week and a half.  We really need ramps for the front and back  doors, and for the van - then the conversation would shift a bit, and might even include timing for a possible power chair of his own.  Q also brought home an older Daessy mount (this, sort of) for his iPad, which he is just loving.  The rockstar OT who's working with the power chair trials scrounged and found this in a closet.  I've been scheming over how to manage a support arm like this for a couple of years, so I'll just go ahead and say it: Squee!  There aren't really words for how big a difference it's already made for the boy.  Big, happy sighs.

We have crockpots of spiced apples set to "warm," bubbling away on the kitchen counter.  There's a lovely breeze coming in through the window.  Tomorrow will be above eighty again, after a couple of days of rain.  Earlier, I stuck some chocolate mint into a tub of sugar, and now I'm waiting for the lavender to dry so I can start a new batch.  A couple of weeks ago, we had a bunch of blueberries which were good, but needed to be dessert.  I happened upon a tub of lavender sugar I made last year and had forgotten about in the mug cabinet.  Eyes rolled back in their heads - a drizzle of cream, a sprinkle of lavender sugar, et voila.  A luscious new favorite.

The rain was nice, but since the air stayed so warm, the weeds sure grew.  Meanwhile, the couple hundred green tomatoes are still hanging out (ba-dumpbump).  I keep harvesting Lemon Boys, which are delicious with goat cheese.  Okay, with any cheese. The Zebras are pretty.  Also green.  Sometime over the weekend, I think we'll make another run at the blackberries and thistles, and try to get some of the random naked areas covered with black plastic for winter weed abatement.  The flowering plum and dwarf red anjou need to be put in the dirt.  They were gifts, last fall, and I hadn't settled on their permanent homes before winter, or in the spring.  But we've moved them around the yard and moved them again, and imagined their future leaf canopies, talked about pruning, and now - the shovels.  We also have some curly willow twigs that came out of E's birthday flowers from grandma - they've leafed and rooted, and now it's time for dirt.

The random volunteer perennial babies are also doing well:  lemon balm, bronze fennel, blue hyssop, Hidcote and Munstead lavenders, oreganos, sedums, and chives on steroids.  It's a little nuts, but I can hardly wait to see what spring brings.  The hollyhocks have already thrown a bazillion seeds, and the bee balms have grown enough that I think they'll survive the winter.  And there are pansies coming up all over.  Ahhhh.

I've got school supplies to figure out (fret), and schedules to organize over the next couple of days.  The kids are ready for a full fall schedule, and I'm almost there with them.  I keep wishing I had a couple of extra days just to pull projects together so we're more collected as we begin All the Activities at once.  And more paperwork issues have come to light in the last couple of days, so...  Maybe I'll switch to getting up at 6, so I can have a little time before the kids have to be up?  I wonder if that wouldn't be best, since I'm pretty much fried by the time they're all tucked in and away for the night.

They're all quiet, so I'm taking my musing self to bed.  Happy being grateful for those who Labor Day.


Monday, August 26, 2013

Thank you

An hour ago, I opened the back door to let a little air circulate.  In came the warm, sweet, spicy scent of the stock next to the patio...  And away drained the rest of the day...

So we had some Latin, math, some language arts, music, a run, and chores.  Then we used Christmas movie tickets for Despicable Me 2, which Q found completely awesome, and then all the requisite feeding of the people and intermittent laundry. 

Tomorrow brings a drive for E (finishing the driving portion of Driver's Ed), during which K and S will knock out some more school work, then quartet practice for an upcoming wedding, therapies for Q, and we'll finish
writing our goals for the school year.

If you would, I'd appreciate prayers as we embark on the 2013-2014 year.  There's still work to be done on the one schedule - it would be helpful if there were suddenly openings for certain classes.  And the other schedules, while more straightforward, still require creativity.  Plus...  (argh)  We have a growing list of needs, some pressing, many of which I have no idea how to manage.  So.  Thank you.

And one more thing:  I've been listing off blessings in my head.  Because, you know, for all the hard work and occasional oddness, we're blessed.  Really and truly.  A box full of binders arrived here last week from someone who knew we needed some and had extra.  Binders!  Out of the blue!  A couple of anonymously sent gift certificates are covering what I hope are the last workbooks we'll need for the school year.  Sometimes it's hard to think positive thoughts in the middle of, say, the fifth call from SSI regarding Q, in which I learn that paperwork they received from me in April still has not been executed.  At those moments, it's especially wonderful to be able to recall the kindness and generosity of friends, family, and sometimes, complete strangers.  Y'all rock.  Thank you.

Time to breathe deeply and get some sleep.

Thank you.


I've been reading articles on how higher ed is getting it wrong, on how homeschoolers need to cover their bases, on nanotechnology in the Roman empire.  And then I read more at the NieNie Dialogues, which I've found so inspiring over the years.

With all that in my head, now I'm thinking.  I have a little painting that needs to be done, some as maintenance, and some to take things up a notch.  We have First Week projects to do, including our goals for the coming year (personal,  spiritual, academic), and some tidying before we fling ourselves into things.  It's time to put up the wall of Post-its to figure out how to make all the parts work for four kids with four different school schedules to consider.

Life is funny and has been for a long, looong time.  It's full, rich, and regularly unpredictable.  Despite that, patterns do emerge: we find that we need to feed ourselves in order to continue to feed those around us.  Whatever we're doing, hopefully with deep intention and a whole heart, whether we're paid for our work or not, spiritual refreshers are non-negotiable.  The more years I have on this sometimes silly planet, the more connected I find the physical to the spiritual to the intellectual.  Sweaty endeavors make me a better human in every way.  Bible reading and meditating on higher things, reading French philosophers (must stay a step ahead of children!), study abstracts, and neurological developmental theories - these make me a better human because they require things of me that the rest of my life does not.

I've been sometimes impatient with terms such as "radical self-care" and other pop-psych notions.  We are a busy people, dagnabit!  We are too easily taken in by soothing notions when what we need is a good slipping off of several layers of skin in order to become who we actually are.  Harumph.  Well, yes.  Yes, we are busy and too easily taken in.  And also, sometimes, we've actually had just about all we can take.  We cannot run our bodies forever without hydrating, resting, and stretching.  We can't spout sweet little truisms without continuing to develop the basis for an expanding understanding of actual truth.  We can't understand random doctoral abstracts without a pre-existing curiosity and decent vocabulary (At the moment, I'm a little fixated on nystagmus in relationship to eye gaze AAC.  Sorry.). 

It's pretty important to start out with a plan that allows the stretching, the development of knowledge, of vocab, and yes, curiosity.  It's important to keep the plan flexible, so it bends when the perpetually unpredictable bits predictably push the limits of its tensile strength.  It's important to plan for brushing your own teeth when you have a newborn, for maintaining muscle when even sleep is barely manageable, and to create new ways to enrich and elevate your closest relationships, even when the plan gets turned inside out, despite your best efforts.

There's an awful lot that I keep trying to control in this new normal, but can't.  I do not adore this feature.  Part of my weekend has involved a complicated conversation with the pharmacy, followed by a chat with the neurologist, refills called in for two meds, and a new one to consider.  My squirrel brain wants me to find better ways to do this, and so I do.  There's always a better way to organize, manage, or see the challenges in front of us.  And also?  Sometimes there isn't.  Sometimes the best we can do is acknowledge the truth: we're only human, and so we suffer the effects of gravity and limited internal resources.

There are only so many hours in a day, so many ways to work what needs working, and so many ways to recreate new resources.  Beginning a new day refreshed requires, um, radical self-care.  Go ahead, cringe.  I am. 

And then try reconsidering your horizons  This much we can all do, at stoplights, if there's literally no other time.  Imagine yourself as someone else, inhabiting a wholly different experience.  Pick up the bits of that alter ego and return to your regularly scheduled life with them, using small shifts to make changes that allow you (and kids, spouse, etc.) to re-design your family, career, finances, homekeeping, toothbrushing, and yes, the more radical kinds of self-care.  Perhaps you've been someone who's said for decades that she'd only run when chased by a bear.  Really?  What an interesting hill to die on.  Or you've said that you just can't manage money, an unruly child, your own snarky mouth, or your mom's medical needs.  So who will?  And better still - your kids are watching you, collecting details for their own adulthoods.  If you're not practicing radical self-care, radical self-accountability, radical reinvention, why not?

Guilt isn't useful unless we let it spur us on to better choices, so we can bypass the self-flagellation. That's a dead-end.  While we may need to put this on the To Do list in order to make it actually happen, beating ourselves about the head for dropping this ball defeats the purpose of the exercise.   Nobody gets Life right all the time.  Big deal.  The real question becomes:  How do we move on from here, right now?  How do we build ourselves into the people we need to be?  Are called to be?

There's a checklist, of sorts: Do you need Vitamin D?  Iron?  A hand to hold?  Heart-pounding exercise?  Bloodwork?  A better diet?  Someone to talk to?  Get there.  Get it, whatever it is, and then think again about where you're headed, how you're getting there, and what you desire for your legacy - for your kids, and maybe grandkids.

After those starting issues are tweaked, the thing that consistently works best for me when I'm at my wits' end is to execute an end run for whatever stressor has me wigging out.  Some kind  of creative pursuit that results in a real payoff is best.  A painting project, on canvas or walls, has worked well.  Sewing curtains, reorganizing closets or kitchen cabinets, moving furniture, scrubbing something down - each of these has a place in helping to create a clearer head.  There's always something about a paint brush for me, though.

Look.  I don't know your story.  But I do know some stories, including my own.  Things can be so tough.  Sometimes they're brutal, man, and they will suck away every breath, all focus and energy, and leave you a panting, prostrate husk.  It's horrendous. 

There's just one thing, though:  We're tougher.   We really, truly are.  At least today.  And tomorrow?  Tomorrow comes after another sleep, and with fresh opportunity. 

And I have more pep talks, stuffed in my pockets.  Seriously.  Call me.


Saturday, August 24, 2013


My, but the summer is flying by.  We've worked our collective tails right off, truly.  Between producing events, practicing and playing for weddings, travel, family finagling, violin camp (hooray for scholarships!), and all the therapies, I feel a bit like we're skidding into the new school year.

Speaking of, we'll start Monday, ready or not.  Heh.  I've been moving stacks of books and supplies, reorganizing for the next stretch.  We need to hop right into Latin and math, and the rest will come over the next few weeks.  E's schedule has yet to be verified, so that will keep us on our toes as we try to work orchestra, etc., around whatever shakes out for her.  Our first week will involve a couple of projects, since Q doesn't start up quite yet, and we can easily include him in those.  Besides, the weather has been so lovely, it's hard to imagine not biking or gardening or hiking or running as much as possible.

And speaking of weather, it has produced a spectacular tomato forest out back.  If they all ripen at once, we'll be in big trouble.  Or perhaps a sauce making party will be in order!  We also have lemon cucumbers, which are delicious, burgeoning sage plants, which can't wait to be frizzed in butter - nom), and the strawberries continue to produce - drool.  I should go pick that curly blue kale.  I bet it would make a fabulous salad.

In the meantime, the kids are out now, the house is quiet, so I'm off.  Wishing you blessings in the midst of whatever you've got going. 


Friday, July 19, 2013

Hello, lovely people.  How about a round of updates on at least many of the fronts?

I am the proud mama of an 18 year-old young man.  It's hard to imagine that it's actually been that long since that delivery room, that anesthesiologist, that 32 hours, and the first glimpse of that wee little cone-head.  I can still smell his teeny neck, new and warm.  Of course, he's kind of a giant now.

The second-born punkin is past the halfway point in Driver's Ed classes, passing with flying colors so far.  She's been busy this summer with music practices, babysitting, math, and the general miscellany of a teen girl's summer.  Organizing her paperwork for school this fall has been an education in itself.

Punkin #3 has been doing yard work and babysitting (saving up for clothes and projects), math review, reading, and hanging out with a new neighborhood buddy - a fellow "tall girl" her own age.

The fourth punkin has been enjoying her own new buddy - little sister to the above neighbor.  She's also set goals for her music progress that require an hour or two of practice per day - a bit of an eye-popper for this mama, but she's doing well.  The rest of her summer time has been taken up with math lessons, reading, crafts with neighbor kids, and water balloons with her new favorite person (a lovely fellow homeschooler, visiting from the other side of the country).

Mr. Q-punkin has had a busy summer so far, including check-ups with various specialties (and more to come), clearance for three whole prescriptions, and measurable progress in his power chair driving skills.  He's been busy in speech - differentiating nouns and verbs, choosing pictures to put stories in order, and even using nodding as part of his responses to questions.  We have a Summer Bridge book he's working through, which is pretty darn cute.  This is what happens to the youngest child: numbers and letters are cute.

Upcoming projects: ramps for the front and back doors of the house; support arms for Q's iPad (as it becomes more and more integral to communication during his waking hours) and soon an actual communication device (we hope); new walker set-up.

I'm feeling foolish.  I've been reading about obturator neuropathy and other soft tissue foibles of the upper leg because I did something during a run two days ago, and things just aren't okay.  Thankfully, Q's PT lets me bounce such things off him, and I came up with things to try (foam rollers are our friends).  In the meantime, I wish I had a muscle relaxant, unlimited ice, and 48 hours of no lifting.  Q's been up quite a bit each night for the last couple of weeks - my theory is that a small push (I "sprinted" 9:59 up an incline, at the end of a 3.4mi run - the fastest I think I've ever been on an uphill) worked those muscles hard, and then going from dead asleep to lifting and rearranging 49lbs of Q knocked me back further.  Not my favorite.

If y'all wouldn't mind praying over the upcoming projects and my tweaked leg and back...  Certain obstacles could just remove themselves and life would become infinitely easier.  I just have no idea how those obstacles could possibly resolve.  None.  But others have.

I know you're dying to hear about the yard.  So I'll tell you a little, since you twisted my arm.  Heh.

The day lilies are blooming their fool heads off.  One is a lovely warm custard color, with wine colored middles.  It's next to a purple sedum that's almost as tall as the lily plant - the contrast is charming, especially when the Greek oregano is noticed on the other side of the day lily.  The other plant is lavender with chartreuse middles, next to purple asters and a chartreuse Dr.Seuss flowering plant whose name suddenly escapes me.  Hm.  Its flowers are little, brilliant green balls and it makes me smile.  Also nearby are red yarrow and fleeceflower.  The Tomato Forest needs more cages, as the plants seem to be trying to escape.  Some are just shy of three feet tall, and appear to be making actual tomatoes.  The Lemon Boys and Green Zebras look to be ahead of the rest.  I should really count those plants.  I wonder if we have thirty.

The strawberries are proliferating by runner, and seem to have escaped via seed as well.  Which is fantastic.  The berries are delicious and I think we'd give over the yard to production without a second thought.

And there's the boy.

Rest well, loveys.  Hope your summer is warm and sunny, with lots of fun thrown in.

Sunday, June 30, 2013


I'm sharing a piece I recently wrote for our church newsletter.  Because it was my turn at the time, and now because life requires multi-tasking.  Or multi-purposing.  Tra-la.


I have this backyard that’s kind of a miracle.  When we moved into this house, the glacial till was assertively apparent.  The backyard, not landscaped and therefore with no topsoil to speak of, ate an hour or two of time for every half gallon plant we tried to put in.  The size and sheer persistence of the rocks the kids and I uncovered and dug out was amazing.  I contemplated letting it all go and claiming that we’d settled on a “meadow” theme, but then a letter came from the homeowner’s association.

So we began with a weed eater/trimmer, and hacked back the grasses and weeds.  A couple of cousins came and helped.  My aunt sprayed the worst of the dandelions and other noxious weeds with vinegar and we watched them wither in the sun.  Most of them did, anyway.  We moved on to a stupendous device my mom found: a propane tank attached to a moderate sort of flame thrower.  It sounds like a rocket booster immediately before launch, and makes satisfying work of blackberry vines (check your local ordinances before investing in your own).  Still, it was a battle, and not an enjoyable one.

Budgeting required that any work done in the yard be terrifically inexpensive, if not actually free.  The fact that my helpers mostly consisted of my children added another layer of interest:  children require feeding, their music needs practicing, and in our case, insurance coverage for medicines needed to be argued and re-argued.  And re-argued.  Figuring out how to turn the coin jar the kids had designated for The Yard Project into the thousands indicated by the estimates I had collected seemed a useless task.  But then Cynthia B. visited and began to pray.  One of my lovely neighbors, Gwenn, noticed that out of the entire new community, our house was the one without backyard landscaping (never buy during an uptick in the market), and she began to pray.  

So it was that a couple of weeks before Labor Day, 2012, I learned that we had volunteers, 80 cubic feet of dirt, 300 cement blocks, and more, arriving Labor Day weekend,  starting Friday.  When I had mentioned to Gwenn that a friend from church was praying over this yard too, she decided that was the perfect opportunity to make the idea a reality.  She called me for approval of a flier she produced, the flier went out to the neighborhood, friends from church became aware of the efforts, as did more old friends, and the backyard miracle commenced. 

Isaiah 55:11-13 reads:  11So shall my word be that goes forth out of my mouth: it shall not return to me void, but it shall accomplish that which I please, and it shall prosper in the thing whereto I sent it. 12For you shall go out with joy, and be led forth with peace: the mountains and the hills shall break forth before you into singing, and all the trees of the field shall clap their hands. 13Instead of the thorn shall come up the fir tree, and instead of the brier shall come up the myrtle tree: and it shall be to the LORD for a name, for an everlasting sign that shall not be cut off.

Is that not amazing?  The trees of the field, clapping their hands.  Trees growing instead of thorns and briars.  The imagery is so fantastic to me: the word going out and filling up, nature itself rising to underscore the word and the blessing of God.  

This evening I would be out writing in what is beginning to resemble an “edible park,” as a visitor commented, were it not for crashing rain storms.  But since I’m indoors, let me tell you what I would be experiencing out there.  I would be smelling the clove scented breeze coming off of the stock next to the patio.  I would wonder about the tomato plants, invisible in the gathering dark.  I would marvel at what I could still see, in low light, late in the evening.  I would content myself with holding still for a few moments, listening to the frogs across the valley, around Fennel Creek.

I am so grateful to those of you who showed up and helped create this space.  As I’ve thought about this and other events which bring on deep and abiding feelings of gratitude, I’ve realized how many things I have to be thankful for over the last several years in relationship to Green Lake Church:  A baby shower when life was scary and overwhelming.  Mentoring for my children in service and leadership efforts.  Love and acceptance for the little guy in the green wheelchair.  Service opportunities for me.  And countless other unnamed events, relationships, and processes, each of which have their own significance.  Each of which has been a grace note.  

I hope you too are finding these grace notes within our congregation and that you are blessed by the service and by the opportunities to serve.  Thank you, each of you, for what you’ve come to mean to me and mine.  The yard, replete with joy and peace, is open for visitors. 

Friday, June 14, 2013

Three Good Things

1.) Attentive pediatrician who calls after hours to talk through options for Q's apparent allergies, ask after K's foot, and who thinks both inside and outside the box when looking for solutions.

2.) Q's new developments in therapies:  in addition to the video of the bull/matador game in the power chair from last week, this week he nailed verbs and nouns in Speech.  He continues to amaze his therapists and they continue to come up with new stuff for him to do.   Next up: modifying math and grammar curricula for summer study.  The family "summer term" begins June 24. 

3.) Exquisite kindness.  It is humbling, gratifying, inspiring, and none of those words are adequate, really.  There are some delightful folks on the planet.  I am so glad.

Okay, one more.   Because what's not to love about brain-controlled flying robots.  When the professor indicated that those most likely to benefit from his research are those in uncooperative bodies, rather than the stock answer of military applications, I nearly wept. 

Happy weekend, lovely people.

Saturday, June 08, 2013

Open letter

Dear Molina Formulary and Policy Boards,

Congratulations! You have won the privilege of caring for my son for 72 hours! See you in three hours. We are SO looking forward to this!

Quinn's Mother

Fine print and disclaimers:
1.) Bring several changes of clothes for yourselves. Consider also supplying your own washer and dryer, as ours will be busy with Quinn's increased demands thanks to your policies.
2.) Check your files for all the OTC and Rx options that will not work, thus saving yourself the middle-of-the-night, vomit-scented disappointment of trying yet another med that HAS to work, according to your policies.
3.). Speaking of vomit, you should know ahead of time that baby wipes are ineffective, as are washcloths, paper, bath, and beach towels, and perfume. Consider bringing your own shower.


And there's more.  I guess at least the taxpayers can rest assured that Molina is working to save them money!  By repeating tests and assessments that will NEVER, EVER CHANGE, and absolutely cost more than the $90 per month they'd prefer monthly documentation for.  Heck, the monthly documentation requests alone blow that $90,  and never mind the cost to the doctor's offices who keep writing letters and keep trying to send faxes that are, mysteriously, received only about twenty percent of the time.  It's something like having to answer the Social Security department's questions about "change in diagnosis."  Really?  (This is where I begin to feel I've developed an edge to my voice...)  Because you seriously think, SS people, that there will have been a change in his missing corpus callosum?  He will suddenly not have microcephaly?  Polymicrogyria is now a limited-time condition?  Gosh, that would be awesome.

I can't remember having been this angry.  Breathing deeply...

Let's talk about other things, shall we?  S gave a great violin book recital in the backyard on Sunday afternoon.  Barefoot, in a sparkly dress, cuing to her teacher who accompanied, with musicality, intonation, and stage presence taking the day.  She's grown her skill so much over the last few months.  It was spectacular.  And the black bottom cupcakes from Grandma were delicious.

Speaking of the backyard.  (You knew we were going there.)  The weather has been perfect for planting tomatoes, and there are currently about 18 in the actual dirt, above the second terrace, some of which have blossoms already (Black Krim, Lemon Boy, and something that may have stripes...?).  The nasturtiums have popped out all over the backyard and that second terrace.  I've been whispering to them a little, for inspiration, because I want them to overwhelm and destroy the weeds.  Okay, so they won't actually destroy the weeds, but they do grow shockingly fast, are completely edible, and make gorgeous flowers.  Which we will eat.  Nom.  There are also eight lemon cucumber plants, just behind the bricks of the first terrace, between the lavender and cress and the Jethro Tull (heh).  There are roughly 40,000 more tomatoes to plant.  And green beans.  Round zucchini.  I killed the watermelon and cantaloupe babies off, sadly.  They're short, cool season varieties, so maybe we'll try again in that hot spot on the southwest facing side of the house.  I'm tempted to uncover the rest of the dirt that's under plastic (weed abatement) and plant it full of potatoes, carrots, beets, radishes, kohlrabi, and eggplant.  We were hoping to find a nice grape this year at the cheap plant guy's greenhouse, but we missed it by waiting.  We don't have an arbor, though, so maybe that would have been futile for the poor grape.

Two girls had sick days today, with rebellious tummies.  Q's got a stuffy head, besides the disruptions in meds and feeding supplies, so tonight could be extra interesting.  But since he's sleeping now, I'm off. 

Here's a lovely thing to watch while you're having your weekend.  And a lovely thing to listen to.  


Saturday, May 25, 2013


It's been a rainy week.  Q went on his first school field trip - to the zoo!  He loved it, of course.  We haven't heard about the monkeys yet, but that's only because he was so tired he could hardly stay awake to eat.  Q's therapy schedule has been a bit light as some of his people have been out on vacation.  It's not all bad - he gets longer school days and especially loves the longer time he has in the library, music class, and PE with those longer days.

We haven't run as much over the last couple of weeks because of various injuries and odd little bumps in the road.  The girls have been talking about increasing distances and training for a sprint tri or half marathon.  There had been some talk of training for a marathon in the hopes that we could make the finish time cutoff for Boston.  I'm relieved to report that "technical difficulties" make that idea a non sequitur.  I think we'd have to drop everything but math, running, and music in order to pull off that kind of training - something none of us is prepared to do.  Hopefully the various hiccups will resolve in the next couple of weeks and we can get back out there.  They'd been doing so well with longer runs and with speed and strength work, and I hate to see them lose any ground.  Quite a bunch of troopers, these punkins - especially as they jostle for Q-pushing privileges during any given interval.

Between rain showers, I poked nasturtium and annual morning glory seeds into various locations throughout the yard, looking for enthusiastic groundcovers to keep the weeds out while we grow as much food as possible.  I'm hoping that the weather will cooperate well enough on Sunday to allow the baby tomatoes to be set out.  We've been trying to think creatively about how to make trellises for green beans against the back fence with just rocks and twine, since we already have plenty of both.  I was hoping to have sunflowers again this year, but we're probably a bit late for them.  We're going to go a little crazy and try short season cantaloupe and small watermelons.  The west side of the house retains crazy amounts of heat with even a little sun, so maybe we'll even see some fruit!  Lemon cukes are also ready to set out.  A friend surprised us with a packages of short-season veggie seeds, and those will go out too, directly into the dirt: round zucchini, fat little carrots, and Delicata squash.  A family friend stopped by a couple of weeks ago and after receiving a tour of the backyard, declared it an "edible park."  What a charming description.  We would love it to be true.

A young man with a diagnosis similar to Q's passed away this month.  Jorden was twelve years old, one of the five children (of whom I'm aware) with some form of Polymicrogyria in this state.  He had a seizure one Sunday morning, while his family was getting ready for church, and he did not recover from the loss of oxygen.  Jorden's thoughtful parents chose to donate his organs, and many other children are now living more promising lives because of the family's kindness.  If you would, please say a prayer for Jorden's parents and siblings as they celebrate his life with their church family and many relatives this coming week, and as they navigate life without their beloved and joyful young Nascar fan. 

Peace be with you.

Friday, May 10, 2013

Beatus diem matris

Sometimes when this part of the week arrives, I feel like I've skidded into home, knees and uniform a mess, and dirt up my nose.  Another six hours in this day wouldn't have gone amiss.  I wouldn't be caught up, but things would have moved further along, which can feel just as nice as being all caught up.

Three and a half servings of Q food are cooling on the stove, awaiting coverings and the fridge.  His towels are running - extra pre-treat, bleach, etc.  The kids are all in bed, the dishwasher just stopped, the house is getting quiet.  Apart from the big fan (it was 83* here today), it's still enough that one might hear the plants growing. 

Speaking of plants, a favorite subject...  This week, a neighbor brought over a Shasta daisy to share.  It's waiting to go into the dirt, behind the Rainbow Ascot euphorbia, with it's chartreuse bracts and their little red middles, and behind the Lucifer crocosmias.  I dug the grass out of the crocosmias yesterday, much to E's delight.  She'd gone looking for them and thought them dead, their leaves blending too well with the misbegotten weed blades.  The nearby coreopsis and Strawberries and Cream yarrow are looking fluffy.  I hope the lilac is okay - no blooms this year, though the new growth looks healthy.  I think all the moving around and heat last fall gave the poor thing palpatations.

The callas are poking their noses out, and the baby hollyhocks are holding their own.  The irises (sent by a friend, all the way from her garden on the other side of the country) are budding, and promise a swoony blue, so far.  There are more buds coming up, and each one will be a new revelation.  I had a little Miracle-Gro potting soil left from a couple of summers ago, so that went onto the Pacific Giant delphiniums today.  They need fertilizing, but we haven't any, so this shall have to do.  They're making spires already, and will try for a full six feet in height by the end of the summer.  I can't wait to see them in full bloom, their little center "bees" all fuzzy gray, offsetting the deep blue violets as if they were velvet and watered silk.

In other news, we're emerging from the spring spate of Busier Than We'd Thought Possible.  In under a week, the girls had their big orchestra performances (Mendelssohn's 5th Symphony and Rutter's Requiem), and all their spring recitals.  E played viola for the first time in public, as part of her sisters' violin recital performances - quartets.  She also played a piano duet with each of her sisters, in addition to her own solo piano performance.  K also had a solo piano piece.  We've discovered the best way to beat K's pre-performance nerves: running a race the morning of the recital.  By the time she played the three violin pieces (two as second violin in quartet, one as her piece), she was loose and happy.  S played second and third violin in the quartets (in addition to her own recital piece), and couldn't have loved it more.  Still, we're all glad that particular week is done.

The punkins are all asleep, so I'm headed up myself.  Happy Mother's Day, all you lovely mamas.  Take good care of yourselves - you make the world go round.


Saturday, May 04, 2013

Skipped the showers, on to flowers

So April flew by, eh?  Between lessons, school, rehearsals, running, and therapies, I feel like we blinked and found ourselves in May. 

Things here are good.   We're neck deep in history and literature discussions, grammar and Latin study, math, sets of splints, tomato and squash seedlings, recitals, annual testing, and baby lettuces. 

The trees have bloomed and promise oodles of pears and Asian pears, and maybe some little plums.  The rosemaries are bright and healthy, the morning glories have volunteered, and baby lavenders are thriving.  The bleeding hearts, bronze fennel, and blue hyssop have lost their minds - exceeding last year's growth by leaps and bounds.  Sweet woodruff and blue vinca carpet the east side in front of the fence, while purple sage and succulents are taking over the west.  Red yarrows are coming up, the Jethro Tull (ha!) coreopsis is all leafy, and the chocolate mint is doing it's work: holding down the hillside to the north and making the trash can area more pleasant on the east side, by the gate.

I was sure we'd killed the banana mint, but it's back, with two little leafy spires.  I need to check on the cress seedling babies and probably give them a little water, since it's been warm and gorgeous for nearly a week, with no rain predicted.  The hollyhocks did a nice job of self-sowing last fall, and their progeny have been watched with bated breath.  The pink-flowering strawberries I found for twenty-five cents apiece are fluffing up, and approaching the edge of the wall - something I hoped would work out so Mr. Q could pick berries himself, from his chair or stander.  Next year, the Hidcote lavenders will afford a similar opportunity - providing there aren't too many bees for Q.

In other news, it sounds like the quote for ramps might come down.  The pharmacy rep was out during one of Q's therapies this week and noted that the math has shifted.  So I'm waiting to hear.

To be clear, there's no budget for ramps, and I don't know what comes next here.  Little and not so little miracles have strung together for the last nine months, and we're still afloat, and I just don't know what else to say about that.  I find myself thinking that we can't possibly last another month like this, and then something completely unexpected occurs, et voila: speechless.

I'll come back and say more about the outdoor portions of the domicile, and our many hours of weeding.  It's kind of amazing that we have so many plants - many of them gifts or grown from seed.  Some have come from the local plant guy, who's been known to knock off 40% or just give my kids the plants they've dithered over, after they've fretted a little about how far their dollars would stretch.  More miracles.

Time to crash - we have church, orchestra, recital, and running to come before Sunday evening.  I hope you have a delightful weekend: all rest and sweetness, peace and renewal, with enough accomplishment to make the coming week easy and rewarding.  Hug those babies, y'all.

Tuesday, March 12, 2013


Number one.

Number two:  These kids of mine are doing well.  I don't mean they're perfect or geniuses, or really anything related to those categories.  I mean they are becoming kind, hardworking, striving, hilarious, silly, earnest, lovely, grown-up human beings.  It's such a tough thing to describe without sounding like somebody's crazy mother, but I think this is the part, the observational bits of parenthood, where one feels one's heart swelling.

Number three:  Somehow, and the how part helps to make this extra amazing, things continue apace here - warm and dry, fed and studying.    It doesn't make logical sense that we're all motating happily forward, but we are.  It's maybe a little like adding two and two and coming up with five.  If you have a minute, stop by and I'll try to explain further.  For your trouble, we'll give you a tour of the budding backyard.

Q's better - much less gagging and no breathing treatments for two days now.  (Though I'm now holding my breath for a continued recovery...)  His personal care hours are up a tiny bit, there are prospects for some agency help, and the latest argument with insurance over prescriptions seems to be shaking out.  We shall see.  The girls had their violin recital Sunday afternoon and all did well, despite some last minute scrambling to reorganize after Q's illness.  They've had extra orchestra performance opportunities lately, so tomorrow will bring a redoubling of focus on schoolwork.

One more good thing:  I am grateful to be here.  The list of insurmountables just seems to grow - lately as though it's being fed a steady diet of Miracle Gro, Industrial Strength.   I can honestly say that I have no idea how we're going to manage the next bit of really anything.  And still.  Still!  There's so much to learn, to see, to do, to experience.  Every day presents a litany of striking opportunities for engaging with the goofy people in this house, with the amazing therapists and teachers and friend/family/pastoral types we love and interact with.  Each of those interactions spawns its own unexpected graces, opportunities, and kindnesses.  And from there?  Just wow.  I mean, there's no predicting where this stuff goes, and it leaves me daily just crazy-grateful to be here, right here, with no conditions or caveats.  I mean, I have caveats!  Serious things which need fixing!  (Come over.  Bring tools.  Yes, you.)  And still - wow, people.  Just... so, so much "wow" for which to be grateful.

Hope you're having at least a little of the same, right where you are. 


Saturday, March 02, 2013

Goodbye, February

And none too soon! 

Oh, hello.  It's been a few months, I guess.  Crazy times here - trying to hold All the Things together in reasonable form and to a reasonable standard of function.  Sometimes these efforts are more fruitful, sometimes less.

Q's been sick.  After a day of vomiting (post nasal, etc.) and several days of being reluctant to swallow anything that wasn't precisely as viscous as water, we went to ER for IV fluids and breathing treatments.  Poor guy was just becoming more lethargic, even with tea and honey, even with the coaxing of sisters who got him to swallow the formula supplement.  The loss of sleep over the last week or so has been a bit staggering, perhaps literally.  One should not have to choose between being able to stand up and being able to think through dosing and feeding schedules.  He's better, but still with the gaggy mucus crud that requires saline and suction and albuterol unless we're okay with more vomiting.  This makes me wonder if the bug wasn't RSV.  Ew.

To complicate matters, we're down in Medicaid Personal Care hours, which seems ludicrous, but hey, whatever.  At this point, the state's algorithm says that Q requires 97 additional hours of care per month beyond what a typical child his age would require.  So I'm not sure how to put this, but what. the. heck!?  That's used up on meals and meal prep alone, never mind anything else.  I asked for a re-evaluation, and we're waiting now to hear if the request for more hours has been approved.  The not cool EEG results (positive for epileptiform activity - January) may help Q to have more hours.  For this I have a response that you might expect - rather mixed emotions, and kinda frustrated out of my mind that this is what it takes, when the standard baseline number of hours used to be 200 per month.  Since this illness, we're back to needing the nebulizer, at least for the foreseeable future, so hey!  Another item to pop into the formula!  (insert indeterminate cursing)

Somehow, amidst all this (waves arms) the girls continue to trundle along, scoring well on assignments and tests, working their little tails off for their opportunities.  They're saving to buy violins, pay accompanist fees for violin recitals, and working off parts of piano and violin lessons, as well as the summer violin camp.  I'd wish for a little less work and a little more play for them, except that it seems to be serving them well.  Sometimes organic lessons in humility can be tough to come by, but not so much these days (she says, ruefully). 

I suppose most of what we're doing these days is figuring out how to make do with very, very little, plus the occasional sweet kindness of friends and even (seemingly) random strangers (entertaining angels unawares?).  I don't know how this works, except that so far, miracles of every size and shape keep popping up, just in the barest nick of time.  (Whispering.....  To be perfectly honest, it's wearing on me a bit.  Or it could be the crazy stupid pathogen and lack of sleep...)

So that's enough of that. 

I popped in here to write a quick update, and found that my playlist is loading again for the first time in I don't know how long.  The music is playing now as I type, and making me smile.  I have no idea what I was thinking for some of these songs, but the eclectic selection has me grinning.  The heart is abloom...  See the bird with a leaf in her mouth...  It's a beautiful day, don't let it get away...  What you don't have, you don't need it now...

One wildly unrelated note...  This week several teens and preteens around the country have performed really cool acts of sacrifice and service within their families.  Whether for parents, siblings, grandparents, or other miscellaneous relatives, each of these kids has put him or herself out when all other options were exhausted.  These kids have lent succor to those exhausted caregivers, good people just trying to hold the family together and keep everyone alive, pain-free, okay enough to heal...    People, we have some really fantastic young folks about us.  Notice some of them and say so, eh?  The tasks they've taken on over the last week or so are more than many reasonably well-functioning adults can manage under the best of circumstances, and these kids have been glad to help where they can, only wishing they could do more.  May they be blessed in their endeavors.  May you be blessed for knowing them.

We've got church in the morning, busy afternoon activities, and a full Sunday after that.  Here's hoping we, et tu, successfully carve out some really quiet, really calm, really, truly restorative time over the next 36-48 hours, and in the middle of it, do take kind care of someone who means the world to you - gentleness is such a revel-worthy thing.