Remembering

Today would have been a beloved Auntie’s birthday, and it is very much with us. Perhaps partly because it’s the first since her passing. The awareness of loss is great.

I happened to need to leave a vehicle for a kid at the park ‘n’ ride today, so I plopped it there and ran home. This is the first planned run I’ve done in eons, and the layers of significance just keep washing into my head now, like a rising tide. First and most obviously, my Aunt was a runner at my age, and having people in your life who Do Hard Things helps to create in kids (me) the idea that Hard Things Can, Should, and Must be Done. That my mother ran through her whole pregnancy with me - alongside my Aunt - is a detail I find most delightful. My Aunt died of pulmonary fibrosis, a hideous disease, after having successfully, concurrently, fended off lung cancer (for which she had no known risk factors). We spoke of running often, and how glad she was that it had become part of my norm, and then those of my daughters. 

So today I thought about her while I ran. I have what seems to be exercise-induced asthma, and not regularly running makes it worse. It reminded me of that pulmonary diagnosis. Sucking air, bronchioles on fire, remembering, searing, mourning, counting, crossing, up, down, wave, breathe...

I though too about my friend, amidst her Guillain-Barre fight/journey/whatever story it will turn out to be. Whilst trudging uphill, slowing as the wind blasted harder, scrubbing my numbing face, speeding up over the rise, legs going numb from a cardiovascular system pushing past its baseline... Then flying down, down, praying that my bones would fall just so, GodBlessMuscleMemory, as the feeling returned to my toes.

I thought about writing, and the futility of planning to. And the absolute necessity of doing it, with or without the opportunity - just like running. Just like running, writing can play a major role in the saving of one’s soul. I remembered our conversations about spiritual and mental hygiene, about clarity and self-checking, about care for vulnerable populations, which are all of us. And about how to cram those hundred grams of protein into one person, every day. 

I thought about the hydrangea budding in my backyard, my first ever, and how my lovely auntie’s bushes would be fluffing out now. I thought about our laughing at chemo, over cupcakes we took to share with the nurses - celebrating our respective wedding anniversaries amidst general hilarity, and being so, so grateful for our respective kids that those marriages produced. 

I thought about the solitariness of running - a double-edged sword, and a persistent, highlighted feature in parenting, especially with kiddos who are medically fragile and/or have any kind of special needs. We talked about that, she and I. Alone time can be precious, and it can be just plain piercingly, exhaustingly lonely.

Good things, today... Being able to go. The wildness of the wind. Waving daffodils, a la Wordsworth, a la beloved Auntie. Remembering. Grief work in actual motion. Knowing how to spit carefully on an exceedingly windy day. Family with whom to remember, and to celebrate. 

This evening I’m heading to an event that my Aunt went to annually, as long as she could. It’s a resource fair and legislative forum for the local disability community. There’ll be Kleenex in my pockets. 

Go hug somebody, go read Lonely as a Cloud, and go, go, Go because you can. Smooch. 

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.

Good things

Q had a fun week.  In addition to his usual stuff, his Tuesday morning therapies were all cancelled - a big meeting for the therapy place - so he had four mornings of preschool.  He was thrilled to hang with his peeps for an extra day.  Wednesday afternoon, he had a clinic visit with pediatric/special needs dentists in training, and he thought it was pretty spiffy.  He stayed in his chair for the exam and cleaning, only bit the nice lady once, and had a teeny cavity filled (they expect it to sort of heal itself up).  His only regret?  Not getting to play with all the lights and other stuff that were hanging over his head.

Everyone's out, the washer just stopped, the place has been cleaned about as thoroughly as it's likely to be while the kids are these ages, and all's right with the world. 

Three Good Things:
- More running happened this week.  I do not like to run and suck wind, but when I do it more frequently, I love it.  Truly.  It's awesome to feel a little burst of speed up that last hill, to revel in muscle tissue that wasn't there for the last run, to have all kinds of strength that needs stretching.  Love. it.  Interestingly, my knees are okay with it, so far.  Fingers crossed, eyes heavenward.
- This house.  I've been taking inordinate pleasure in cleaning the baseboards, having an organized drawer full of All the Things In the Kitchen that Cut (including knives), and keeping spaces tidied.  The kids seem to be following suit.  Well,  except for their own rooms.  Aherm.
- Friends who drop by and chat.  It's so lovely to have the opportunity to do that, and it's becoming more and more difficult to go anywhere else to just hang out.  Q's needs aren't likely to lessen.  So I'm just grateful for people who make time to just be, you know?

Hope you're looking forward to a lovely weekend, maybe savoring the sun, watching the skeleton trees turn into springtime cotton candy.  XO.

Progress

Q has had an interesting run with professionals lately.  Tuesday he saw his pediatrician - all is well, though my definition for such things may not be the same as that of the general population.  He hasn't used the nebulizer this season (fingers crossed), his skin is unbroken (except for the self-inflicted scrapes and bite marks on his hands), and he's happy.  No small thing, that.

Today his new caseworker from the Department for Developmental Disabilities spent three hours here, doing the initial intake interview.  How much help does he need dressing?  Managing grooming?  How about feeding?  In learning and play activities?  I think the more effective question would be: what doesn't he need help with?  It would certainly have made the whole process shorter.  Heh.  I have no idea what the expectation should be for the outcome with this evaluation.  The caseworker will return tomorrow with the completed plan so we can have the option for care coverage for the month of March.  As of today, the estimate for care hours is 86.

I have two reactions to this.  First - thank heavens that there's an option for this.  At all.  I may choose to have someone spend the night to turn Q and reposition him, should he awake, between the hours of ten and six once or twice a month so I can sleep.  I can think of other very useful applications for this as well.  This poses such a huge blessing that contemplating it makes me a little light-headed.  I'd be giddy if I were less tired.  Second - so, um, let me get this straight.  It takes eighty-six hours a month to care for Quinn?  What?  No comprende.  Eighty-six hours?  In what context would this be true?

The caseworker is a very nice man.  He spoke of his own experience helping to care for his cousin who had severe and complicated CP.  He said that I'm doing an excellent job (blush) with a very time intensive and exhausting situation.  He found Q's smile engaging, touching, beautiful.  He considers the result of my efforts and my knowledge of Q's specifics, as well as the human body generally, to be remarkable.  He's spending some time tomorrow morning going over the notes to fine-tune Q's profile and will return the final results to me quickly, so that we can get this moving, as I mentioned.

Eighty-six hours.  I'm guessing that this means that an algorithm has decided that a typical five year old requires eighty-six hours less care than Q?  When the nice man asked about the biggest needs for Q, I told him that our challenges here right now center around the fact that Q, himself, is a full-time endeavour.  Add in the medical and therapy management and administrative issues, plus his sibs, and suddenly there's more to do in a week than I can realistically complete.  For example, we still don't have window coverings up.  Deep breath.

And yet.  (You knew I had one of these, didn't you?)

The kitchen is pretty darn clean, though a crevice tool would be welcome under the edge of the stove.  The whole house was vacuumed yesterday, including many of the baseboards.  The kids are excited about their Greek temple models.  Everyone is making some kind of measurable progress in learning.  The bathrooms are pretty darn clean, though I suspect G's shower could use some scrubbing.  The ubiquitous boxes are becoming less so.  There are pictures on some walls, and slowly, steadily, more things are finding their homes in shelves.

Q has an orthopedics appointment at nine tomorrow.  Both his therapy center and school PTs as well as his OT would like to see the lumbar testing and possible placement of the Baclofen pump before any potential surgery.  Management of both pain and spastic tone would be much easier post-op with the pump, resulting in a vastly better experience for him.  (Head between the knees... hating the prospect of all this...)  I'll have more info tomorrow about all kinds of stuff.  Knowledge is power.  Tra la.

Three Good Things:
My shower squeegees.  Such effective little tools, and they make less work for those cleaning the showers.  Win!
Things I've learned over the years from certain people, some of whom you might not suspect I'd include in a gratitude list.  Thanks to those people, I have encyclopedic level stuff in my head, and it ends up being useful in all kinds of situations.
My kids, the punkinheads.  They're smile-inducing, work-creating, attention-deserving, organizationally-motivating, daily challenges, in all the right ways.  They prod me onward, require that I be brutally and painfully honest with myself, and they bless me incomparably.  All at the same time.

More soon.  XO.

3GT

One: that we live in a country which supports the often uncomfortable airing of one's opinions. The kids and grandparents and some in-laws and various extended family members traveled to the state capitol one evening this week and were present on behalf of Q and those who couldn't be there because their families are spread so thin already in their care. We were there to protest proposed cuts to adults with special needs medical coverage. We need to figure this out and quick. The persons most affected are the most vulnerable among us and if it means living with some potholes, so be it. If it means digging into our pockets to subsidize our neighbors' life-saving meds, so be it.

Two: Neil Young styled parodies. Love it. :o)

Three: good pharmaceuticals. I am so grateful for effective meds. So grateful.

Hola

It's been a big week in neuropsych land:  visits and meds and blood work.  Poor little Q got stuck twice and now has a bruise on at least one of his arms from the phlebotomist chasing the wee rolling veins around.  Q took it well at the time (he usually does), but was feeling fragile by the evening.  Meanwhile, I'd like points for not crying, throwing up, or passing out while holding his arms still.  I watched the needle the whole time, praying over it a little, willing the guy to just get it, already.  Sometimes the curse words should be bigger.

We seem to be in the middle of the yearly misunderstanding re: healthcare coverage and processing of paperwork for the kids, so I laid an unholy amount of money out for prescriptions, with fingers crossed that at least part of it will be covered.  Feeling rather nauseous about that, now that Q's blood draws are done.

Three Good Things, and then to bed.

First, that we have really, truly, incredibly good doctors.  Funny, smart, and they get it.  Awesome.

Second, that I have made the week run on very little sleep.  I may be on the verge of maxing out my lifetime caffeine allotment, but at the moment I'm just seriously grateful that we managed ALL THE THINGS (with some well-timed help, thank you so very much, you angels know who you are) and we're all in one piece, we're all friends, still on the same side even, and everyone seems to be really doing very well.  I worry about that part, you know.  So I'm glad for the lovingkindness I see in my punkins, especially when it's spontaneous and between the siblings and when I'm this wiped out.  Does a tired mama's heart good.

Third, I'm going to bed now.  The rest of the perpetual Q laundry will hit the washer in the daylight hours, somewhere between church activities (which would be the fourth good thing, were I not almost asleep right now) and bedtime next.  And there will be bleach and soaking and (TMI alert!) various bodily fluids will be washed away and all will be fresh and pleasant once again, and I don't even care about any of that right now because I'm going to my bed and shall try not to pass out in the middle of a face plant into the pillow.

XO.

Whoosh

Sliding into home again.  The week is done, but for the push through church and all that entails.  I'm glad this week is over - too many enormous things piled up too easily upon my head.  One shouldn't have a week which involves an urgent trip to the IRS office.  Even if the reason is ultimately good and even beneficial, which I think it was.  Still, no.  "Urgent" and "IRS" plus foiled expectations do not make for a week of bon-bons and pedicures.

Rowr.

Three Good Things, then, with which to spin my brain and heart around.

The weather has been shockingly warm and lovely.  It hasn't felt like November, though it's dripping a bit out there now.  We've been running in the midst of twirling leaves, settling themselves down to the ground.  Their colors are saturated burgundies and bronzes, lush greens, toasty browns, and then splashes of juicy yellows.  The sky has ranged lately from turquoise to lapis and then dipped into all those lovely shades of cornflower.  I've wanted to bite it.  Because it looks luscious.

Warmth.  Friends, family, fleece pullovers, sweaters, hot drinks, hats, inspiring reading, shared moments, a post-run shower.  All so nice.  It's good to have the autumn nip in the air as the sun sinks for the day.  And good too, to have the option to be warm in all the important ways.

Progress.  I love it so.  I'm thinking tonight of friends who have struggled over the last several weeks, in their relationships, inside their heads, in their life's work.  Each of them has pushed with everything they've got for the too elusive progress, and they may not yet know it, but their efforts have already paid off.  Their clients are happier, their spouses and children more settled of soul and grateful to be so, and their interior lives already feel calmer and more kindly disposed.  They've each engaged in a Herculean effort, one which often feels all too Sisyphean in nature, an undertaking that has required more of them than they thought they had, and?  The results are trickling in.  There's been a slight but elemental shift.  Their work has been rewarded and will continue to be so as it builds on itself exponentially.  And I am awestruck, watching these things unfold.  To desire change, to commit to being that change, and then to do it...  It is a stunning thing to behold.

Thank you for being here and for reading. 

May you too experience a shift, may it be whatever you truly need - even more than what you want, and may you know a bottomless renewal in that shift.  Take a new grip with your tired hands, baby, and strengthen those knees.  Mark out a straight path for your feet so that those who follow behind, though they be weak and lame, will not falter but become strong.   (Hebrews 12: 12, 13)

XO.

Hiding

Yes, I am here because I should be doing something else.  I'm taking a few minutes off from being a grown-up. I'd like to be cocooning somewhere, welcoming in fall while wrapped in a blanket in front of a fireplace and reading, or something.  Whine.

Q's had some trouble sleeping over the last couple of weeks.  I'm hoping it was the virus he seems to be over now.  I do not do middle of the night on call mommy like I once did.  I may be slightly past my peak in that regard.  Whine.

Perhaps what I really need to do is three good things.  Yes.  If I were a grown-up, which I will not be for another three minutes, that is what I would do.  (She sits, still, waiting for the time to elapse...)

Okay. 

First, some amazing contacts have been made lately.  County and state developmental disability people are just incredible.  Good things are afoot and miracles abound. 

Second, school is going pretty well for all concerned.  Some of us have some speed to pick up, some of us have some organizing to do (spreadsheets are a girl's best friend), but overall, wow.  Q loves Preschool.  S loves her new math book.  K loves the opportunity to be silly with her English.  E loves thinking about never having to do schoolwork ever again.  And G loves that one day he won't have to discuss Latin or Algebra or writing with me ever again.  And I'm a little bit floored at how quickly those days are approaching.  Yikes!

Third, time with the kids.  We've been running together, averaging three times a week, using the Couch to 5K layout.  The app for the iTouch is pretty cool - K and I have made playlists for the runs and the C25K app shuffles the songs for us and then rings bells at us and hollers "WALK" or "RUN" when it's time to switch out the interval.  It is an experience that sort of knocks me over, running with them.  We start out all together, so we can hear the music in the cheap little clip-on speakers that hang from the back of Q's chair.  We can't make it too very loud, or Q will go deaf and people who pass by us will get snippy, but too soft and no one can hear the bells and voice or the music, both of which we've all decided we have to have or we just won't make it.  As we warm up and then run, we spread out a bit.  G's legs are so incredibly long, he can outlope us all and make us look just silly.  S's legs are so short, comparatively, but she runs hard and often passes some or all of the rest of us.  And whomever is pushing Q has harder work to do - usually me - and mostly ends up in the middle, trying not to lose sight of anyone.  We begin in a clump, cheery and full of extra wind, so that anyone more than a few steps away will be brightly hollered at when it's time to run:  "We're running!"  By the second round it's, "Running,"  and by the third a flat, "Run."  This cracks me up every single time, though I'm not laughing because I'm too busy gasping, "Cool down!"  So when we're out there, and I'm watching them moseying around a track or down a trail, I think about how blessed I am to be there with them, watching them do this cool thing, and participating in their growing up.  It's so big that it's almost too much, like accidentally getting an eyeful of the sun itself.  It makes the runs feel short indeed.

I'm heading to bed because I can.  :o)  Hope you're getting good rest and plenty of renewal.

P.S. We helped some friends last week who had flooding in their house.  I still don't have words to express how horrifying it is to see a home so terribly disrupted.  And I cannot imagine having to be the people in charge of whipping various subcontractors and insurance issues into shape so they will all produce what has to be a livable space once again.  It's heartrending and completely overwhelming. They could use your prayers, and probably some dinner if you're in the area.

Three Good Things

Q should be sound asleep by now. I watched him earlier, sliding down into stillness. He patted his Scout toy, which was singing him lullabyes for the sixth time through, and then laid his fat little starfish hand down on the pillow next to his friend Scout's nose. His eyes had been fluttering, but stayed shut during the Brahms lullaby, only to pop open again with a wide grin as he anticipated the music stopping a few notes before it did. When the next piece began, the eyelash frills slowly fell again. When that piece ended, he sighed, but didn't stir again.

He's just beautiful, lying in there with a little round cheek pressed into his pillow, snuggled up to his favorite toy. Watching him tonight, I remembered, for what reason I do not know, telling his papa the story of the Velveteen Rabbit. We were friends at the time, in college, had been out together a couple of times, and were flirting a little over the phone as I finished design projects and he avoided writing something (my grades suffered, his did not). I mentioned the story to him and he confessed to never having heard it, a fact I found somewhat stunning. So, while all splayed out on the floor amongst paper bits and mat boards and glue and x-acto blades, I told him the story. About toys learning lessons, a rabbit becoming Real, and how having one's hair loved off is quite integral to the whole process, allegorically speaking, of course. A few weeks later, he sent me a Christmas card with a bunny on the front, and referenced the story. I was thoroughly charmed.

I'm not spending any time with my head between my knees or breathing into a paper bag. This is very good. I am glad that I'm not. I'm glad that we have a warm place to be when the wind blows and the rain strikes. I'm glad that I know people to be capable of great kindness and have in fact both witnessed and experienced it with some regularity. I'm glad that I have the opportunity to practice letting go of preconceptions, misconceptions, and certain ideas to which I may have become altogether too attached. Mostly though, I'm glad that I don't feel like I need to panic right now, even where it's perhaps more or less warranted, and that I can still make choices right here and right now; one always has the choice of response to one's circumstances, yes? Yes. It is good to have those choices and to be aware of them. (For reference - I might, one day, wish to become some sort of novice in, say, a quiet, monastic setting. Because I imagine that I might eventually need to go somewhere very quiet and just lie still for awhile. It'll be that or the table dancing.)

Trois.

Three more

The kids are coming home today. Whoopee!

And... the kids are coming home.

Did I mention that the kids are coming home?

Good news

After about an hour of unmitigated panic, two boys were found safe and sound.

The repairs to the van were about one third the expected expense, with the understanding that the poor thing requires persistent babying through it's golden years.

The concussion is "relatively mild." The teeth can be pretty well repaired. These things have occupied us rather thoroughly over the last week, but less so now. All is not precisely well, but grace covers things, and it will be well. Phew.

Thank God, thank God, thank God.

Edited to add: At 1:30 the next morning I'm still burning adrenaline like it's kerosene over the first good thing on the list. What a week, huh?

Three More

One -- The oldest four of my children are having fun with their daddy.

Two -- Remember my friends who've been pulling with all their might to keep their family together? He moved home last week. Home.

Three -- Today, a new charity was born. The papers are filed and soon someone will have her not-for-profit status.

Three Good Things

One -- Dinner: Chiles Rellenos with quinoa cooked in vegetable broth. Stupendous. Dessert: Chocolate Croissant Bread Pudding with homemade raspberry freezer jam. A fabulous reward for the efforts of the day.

Two -- Tonight a sweet and precious little guy, not yet three years old, came flying through his ninth surgery for Chiari issues. He may be allowed to leave ICU early, having come off his ventilator quickly and popping back more easily than expected. Sing with me -- Ha-lle-lu-jah.....

Three -- Q is asleep. G'night.