Memoriam

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.

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.

XO.

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.

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.