Another week done

Hi.  Q slept exceptionally badly Friday night.  He went down uneventfully, but was up and squawky by about 2:30.  S joined us shortly after that and we were all fried by sunrise.  I do not know how, but we did manage to get dressed and get to church.  The sermon was so good (David being a man after God's heart, though he was far from perfect), the kids had orchestra practice, I handed off boxes for a person moving due to illness, and we came home.  Q kind of gritched all day.  He'd have been ever so much happier if he'd have just had a nap, but he's stubborn (snort - resemble his familyy much?) and wanted to be awake.

I'm up now because I have a heavy heart for some friends who are suffering.  Life has delivered extraordinary levels of stress to several individual families in the last several weeks.  Some are filing for divorce, some trying to prevent it, others facing terminal diagnoses plus wretched pain.  I wish that we could all take a break from the pressures of the everyday.  Perhaps if we each had a small shift, we could see the awfulness for what it is:  fear and exhaustion.  Those things shouldn't be allowed to take the day.  We should have good pain meds to go along with hospice, ordinary kindnesses to help us ease through otherwise difficult relationship issues, and restorative tenderness to keep us from ever approaching the brink to begin with.

I've been chatting with the kids lately about what it means to "suffer well" - that is, to do the best we can, or better than we suspected we could have, with that inevitable rain which comes our way.  It isn't that we should deny suffering or ignore it when it's making us miserable.  It's that we get more say than we think we do in how we survive or thrive in tragedy.  After leaving church today, I was thinking about what comprises happiness.  My conclusion is this:  one must possess metaphorical tools with which to handle difficult, painful, and even joyous events; one must make good choices; and one must possess good brain chemistry.  Beyond those things, a healthy balance between internal and external locuses of control allows us to take responsibility for our share (taking more than our share is better) of the blame when or if something goes wrong.  Hopefully then, people can take their tools, their good choices, a balanced locus of control, and do something magnifique with it.  Like hold their family together.  Like manage to suffer well through end-stage illness, grace and dignity intact.

We're not so special that we get to avoid the pain life so often offers.  But we are special enough to marshal our resources and manage what we must, grace and dignity intact.

I should send a shout out to all those who aren't hearing from me or anyone else at this house.  I'm not calling anyone these days.  Unless it's a matter of scheduling I'm not picking up the phone.  I don't go anywhere but church, therapies, medical appointments, groceries, etc.  I'm missing some peeps!  Wah!  So:  Hey!  Hope y'all are well!  I would love to be catching up and hanging out, at all.  But some of this has to ease, right?  I have a round of dentist and medical stuff to attend to and then it's just regulation craziness.  Maybe we can manage something by the time the daffodils are coming up?  Call me, people!  We've already established that I'm not managing to reach out, so call and we'll plan something.  Okay?  'S okay.  A'right?  S'a'right.  Okay good.

Love you all, and thanks for the sweet comments of late.  I'm finally winding down, so fingers crossed and eyes heavenward, and I'll come chat some more when I can be awake.  Smooch!

Howdy

Long time no write.

Q is a busy boy in this new year - riding the bus to preschool three mornings a week, using his big boy bed, sleeping a little earlier at night.  The bigger kids spent two and a half weeks with their dad and are back now.  We're almost moved in.  Does this process ever really end?  I have three or four large boxes full of stuff waiting for a cul-de-sac sale, probably in June.  I expect that number to rise significantly. 

It's been pretty weird, getting into the kitchen stuff.  I've been scrubbing a lot as I unpack.  I'd forgotten just how sick I was when pregnant with Q, and just how incapacitated.  So it's been strange, getting into stuff from a former life.  Very Twilight Zone - I'm not nearly as much that person now as I would have imagined myself to be.  And yet, I'm more "her" than I thought I'd ever be.  I don't know how to say it better than that, but there it is.

So I'm sitting here at the bar/counter, with papers to the side of this, E's ancient Dell laptop.  My little stack contains paperwork to sign, some 20% off coupons (wishful thinking - we shan't be shopping anytime soon), Q's triangle (for Christmas, part of his new percussion set) a glue stick, iTunes card (Q's), pencil, HOA info, and a little yellow pad, on which is scribbled:  Tenderness is greater proof of love than the most passionate of vows. - Marlene Dietrich (shamelessly lifted from a friend).

On the fridge there are photos of smiling babies, the dishwasher is full of clean dishes, airdrying, there are scones from Grandma and fruit on the counter for breakfast.  There's medicine and handwashed dishes, now dry, awaiting a return to their respective places.  A small fox wearing My Generation doll workout shoes is perched against a package of Q's wipes.  I see that S left the pickles out, silly goose.  There's fresh basil growing next to the sink (thanks, mom), and towels to take to the laundry.

The living room floor has a blanket for Q and Lincoln Logs - which all the kids played with all week long.  There are stacks of Q's equipment and toys along the walls - still working out what to do with all of this.  Some things are tough to organize so they're quickly accessible and yet stored attractively, you know?  More work to do there.  The violins are perched next to the piano and the music stand holds court mid-room.  Q's strollerchair waits for him for breakfast time, and his little adjustable table sits patiently, ready for the next onslaught of paint or marker.

It's quiet now, save for the last kid trailing slowly to bed, having spent quality time with a screwdriver, trying to figure out batteries for the solar desk lamp.

It's a good house.  They're good kids, and much-loved.  I am blessed.

I'd best be off - pickles to put away and dishes to manage, you know.  Hoping good things for you and yours, especially amidst the chaos we've all had this week.  Here's to healing, and to Life:  L'chaim.

Hey

I thought I should try and get a post in before we hit the halfway mark in December.  Heh.  So here's Life, in a nutshell.

I was privileged to spend a little time in the capitol recently, listening to some very smart, thoughtful, kind people from both sides of the aisle speak about issues on the fore of everyone's mind these days regarding this state's Developmental Disability community and emergent issues therein.  I can now talk for hours without ceasing about budget composition, Medicaid personal care hours, and why the waiver waiting list has 18,000 people on it, each of whom needs actual help.  You may wish to avoid asking me about this, depending on how much time you have to listen to the minutiae.  Or you may wish to learn about the minutiae yourself.  Happy to help - if you can catch me.  (eyeroll)

We're moving.  I have a squid sitting in the garage over there at the new place.  A preserved squid.  And dissection tools and goggles and maybe even a fetal pig.  And sea star.  And some worm.  That last one?  I am totally not staying in the room for that one.  I really enjoyed dissection in high school and would have enjoyed the cadaver lab in massage school, had I not been pregnant (urf).  So yes, I am looking forward to this - all except the worm.

Rabbit trails.  So we're moving!  Lots of trips over there this week, hauling stuff out of Mom and Dad's house.  We'll be having the big push to move beds, bookcases, and clear out storage during a forecasted deluge.  Hooray.  (Picture Ben Stein, presenting with an extra flat affect.)  I have moved in the midst of two feet of snow and frozen gutters.  I'm sure this will be fine - lots of rags and towels to clean things up as people carry furniture into the house.  I think I'd rather move with ice and snow.

Q's IEP meeting is happening next week, so I've been prepping for that.  He's playing matching games with his teacher at 100% accuracy, so she's thinking it's probably time to move on to sight words.  Hooray!  We're working on adapting the iPad further for him, a better bed situation (crib too small, regular bed too low, not low enough, etc.)

A couple of single moms with kids who have developmental disabilities have had some rather urgent needs on the one side, and a need to be helpful on the other.  So cool.  It seems like good things are coming out of ashes there.  Both are in the midst of wait lists and medical appointments, looking for that diagnosis, whichever one it is, that will by virtue of existing unlock the door to services within their school districts and local therapy facilities.

Speaking of urgent needs, I do believe Q is out, finally.  I'm toddling off to bed.  A cranky SI joint made the first part of this week really just awful for me, but it's smoothing out a bit, as long as I walk in a straight line and don't lift too much (ha!), so that's my big concern for now: getting sleep and having less back pain.  I am, as one of my cousins said, "a responsible person" at church tomorrow (which will let up over the coming weeks), in addition to all the performances the bigger kids are juggling.  So off I go.

Stay warm and dry, and be someone's soft place to fall.  G'night and God bless you.

All about

This week brought snow, record low temperatures, a power outage, and odd miscommunications between an otherwise very reliable doctor's office and the pharmacy (which bent rather far backward in resolving the issue).  The house stayed pretty warm the night the power was out - aided no doubt by the addition of four extra people, happily marooned here by slippery hills.  The wind chill that night was around zero, but it only got down to 60 inside before the heat came back on.  The following night was colder - I woke around five thinking that my face was startlingly cold and listening for Q to complain about the same, but buried myself immediately in the soft and warm blankies and passed right out again.

It has been a fun week, despite some unusual frustrations.  It's been a fun year, really.  New responsibilities for me at church morphed into a unique service opportunity which seems to be showing lasting effects.  Creative projects popped up all over.  We're all learning, growing, doing - and efforts made have given evident results.  It's all good.

Many of you know some part of this family's story over the last five years.  Heck, some of you have known the whole story, from before there was this family.  The last five years have been something rather indescribable.  Certainly nothing like I'd expected.  And yeah, if I had a do-over, there are major things I'd change.  But life is very good, despite the undeniable holes (they're how the light gets in, after all), and for this we are profoundly grateful.

Things are shifting a little here.  Q continues to grow, which means escalating physical needs.  He's also about to have another round of appointments with specialists, new ones this time.  Other family members are experiencing upticks in accomplishments and output.  The combination of these factors means that we could use a different look at how life proceeds at our house.

So first, a short, annotated wish list (it always helps to make a list and throw it out there - one never does know what will come of it), then one of gratitude. 

Things Which Would Make Life Easier in Some Way:

• Perhaps the most useful "thing" would be a sort of housekeeper type person.  I'm coming to realize the sheer number of hours I must spend functioning as some level or type of specialist in order for the individuals in this family to succeed:  massage therapist, personal care provider, nursing, administrative tasks, organizer, supervisor, chef, chauffeur, buyer, bookkeeper, events planner and coordinator, accompanist to music practices, teacher, tutor, official snuggler, and on and on.  At some point I run out of hours and collapse.  If there were someone who could take a little bit of the plant services/housekeeping portion of my job description?  Oh, wow.  Just thinking about it makes me all misty-eyed.  This item is something I'm musing on, more than listing, really.  The kids are big helps, but they have their own stuff to do too, like learn, play, and be children. 
• IT specialist, also not a "thing."  At this time I don't have what it takes to add this to my list in the Job Description.  We have stuff going on here which needs attention from someone who knows his/her stuff, and that person won't be me in the foreseeable future.

Gratitude:
Cake.
Lovely and loving people.
Running.  (And sweating.  There, I said it.)

Snow and the melting thereof.
A warm place to keep the brood when it's horribly cold outside.
Money.  Enough to manage the important things.
A nice bag of Brussels sprouts.  Which K is going to roast for me.
Paperwork, because it means that there are solutions to otherwise thorny problems.
Resources and a brain which links them up.

Dissection kits.
Carmex and lotion for early winter weather.
Hugs from punkins.
A fun time at the movies with friends.

And now, to bed.  Hope your wish lists and gratitude lists collide in spectacular ways.

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.