Good

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. 

God.
bless.
you.

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.

XO.

Merry

The Cherry Tree Carol

Blessed, silent night to you, lovely peeps.

Three Good Things

1.) Enough warm blankets.  We're trying to keep the thermostat low, a challenge with a kid who doesn't self-regulate body temp as well as one might like.  Over the last few years, it seems I saw some good clearance sales.  We are grateful to be warm.

2.) Running shoes.  An angel made these possible.  Our old ones were past their explorations and coming apart.  Being able to take the kids out for a readjustment of our spines, our attitudes, and literally, of our brain chemistries, is a phenomenal gift.

3.) Kindness, generally, and overwhelmingly.  The girls and Q are good workers, but they would not be where they are right now without this year's gifts and loans of books, time, clothing, music, and all things related to their trajectories.  I'm especially grateful for a gift-ed box of Puffs tissue, which is the nicest thing I've ever had for blowing my nose and wiping my eyes, a thing which I need to go do again right now.

XO, lovely peeps.

Thankful

I am so glad for Friday night.  I feel, and have felt for a few years now, that I often screech into the weekend, shrieking, "SAFE!" as I cross home plate. 

This week was busy, more busy than most, but certainly not the toughest we've ever danced our way through.  I am glad for the marching on of time, the markers of growing up and out for the kids, the busy things that add up to a life, or life here, anyway.  The work the girls put in every day adds up, moving them through music books, grade levels, proficiencies.  It's a grace, watching all this unfold, and it's pretty surreal, too.  Like a time warp, or being stuck in slo-mo.

So we skidded in, again.  Q had two EEGs this week, one awake and one sleep-deprived, then asleep.  He thought the strobes were hilarious, and we read stories about rockets, thrust, and gravitational pull on his iPad during the first test.  I held his hands still until he finally passed out during the second, the hilarious little stinker.  There's nothing like having to purposely sleep-deprive a growing, low-tone kid to re-order one's priorities.  Heh.

So now we wait for that news.  The seizure med titrations were miserable, but are finally done.  No more throwing up for awhile, thanks.  Q's new wheelchair was approved and should be here in a couple of weeks.  He has casting coming up for new hand splints, foot splints to be approved, and other equipment to be managed.  We've had small and large miracles pop up over the last several weeks, else we wouldn't still be afloat.  It's hard to adequately express how very grateful I am to each person who has participated in these grace notes.  I'm just... still a little bit in shock. 

If you're one of those people, thank you.  I can't do it justice, but thank you.

Here's hoping you're having some real rest, or soon will.  Blessings to you.

Growing boy

Q's awesome PT fixed the wheelchair today - back pulled up higher, headrest dropped, side supports measured, repositioned and tightened down, footrest adjusted, and front tire re-inflated.  The setup looks great, though the chair now needs to be partially collapsed to get it into the van, or tilted back with the footrest closed in order to get it inside before it will fit inside.  The tire thing is driving me a little nuts.  We've been pumping them up over the last couple of weeks and they're clearly just not holding air for more than a couple of days.  I had hoped they'd hold better than that, since the budget isn't currently allowing for any unplanned purchases and I think we're out of the internal tire repair goo.  I'll look again tomorrow.

The boy has grown rather a lot since the surgery and ensuing appropriate management of gastric emptying, and now needs the next size up in leg splints and pants.  So crazy!  His therapists are currently working on prescription requests for 2-4 sets of hand splints, new AFOs  (feet), wheelchair, and walker/stander base. 

Meanwhile, Q has been spelling words in pool OT.  C-A-T,  W-E-T,  R-A-T,  T-A-P.  And "Ryan" - a pool therapy buddy.  This has prompted his OT to question whether or not he's getting enough cognitive stimulation in school.  Not because the team there is necessarily falling down on the job, but because he's a subtle and complicated kid, and therefore hard to read, hard to assess, hard to draw measurable responses from.  So.  Lots of challenges.  Never a dull moment!

Here's hoping you all are having a sweet fall, a lovely time of cozying in with your people, and looking forward to wrapping up 2012 - it seems like it's flying past!  XO.

Day in the Life

12:04am - Reposition Q.
1:30am - Reposition Q.
4am - Awaken to Q giggling.
4:40am - Still giggling, shushing him is even funnier.
6:30am - Turn off alarm.
7:30am - Rocket out of bed as Q's helper arrives to feed him breakfast and get him off to school.
8:25am - Fly out the door with girls and breakfast, drive to violin lessons.  History CDs en route.
9:30am-12:50pm - Violin lessons, taking notes, make notes for history lesson plans, take several calls re: Q and meds, girls alternately in lessons, doing reading and math assignments, and cleaning/helping with punkins.
1:05pm - Freeway on-ramp, more history en route.
1:40pm - Deliver mom's cell phone to her at work and have lunch.
2:45 - After being stuck in traffic for too long, determine that there's no way I can get to Q's AAC appointment before it's over, head to get gas instead, swing by the discount plant dude.
3:20 - Arrive home, unload people, do reading exercises with one kid.
3:30pm - Q's helper arrives.
4pm - Leave for orchestra, plant research and history reading while girls practice.
6:10 - Arrive home, start soup.
6:20 - Head outside for a speed-clean and organization of garden (rain starts tomorrow), squish one kid's toe with wheelbarrow full of dirt (sob).
7:30pm - Feed the people.
7:45 - Q hits the sack with meds, research literature titles for download while one kid writes a fan letter to the author of her math curriculum.
8:45pm - Read two girls to sleep with Bunyan's original apology for The Pilgrim's Progress.
9:20 - Listen to last girl rhapsodize about algebra.  (Yes, algebra.)  (Not the same kid who wrote the fan letter.)
10pm - Last kid to bed.
11:11 - post this and dose Q's meds before falling into bed.  (thud)