Widgets, maybe

I'm adding a widget here so I don't have to reach through the screen and flick somebody's nose at Google.  The last time I tried to do this, Blogger had little wrenches and one could select areas of a template to work on, using those little wrenches.  Was this too easy?  Because I could use something being just. that. easy.  GOOGLE.  Hmph.

Let's see if this works.  We all should be able to use this to shop on Amazon - fingers crossed!

http://www.amazon.com/b/ref=as_li_qf_br_sr_il_tl?_encoding=UTF8&camp=1789&creative=9325&linkCode=as2&node=679360011&tag=durmat-20

I don't think that worked.  Let's try this...

http://amzn.to/1ePTC46

One more time...  AMAZON LINK

Oy vey.

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.  :)

Rundown

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. 

Lately

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.

XO.

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.

XO.

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.

Inspiration

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.

XO.