...to sleep, perchance to dream...

Can you see me?

I think I'm fading.  All my edges gone soft and gray.

Can you see me?

Am I dreaming?  Or am I just caught here...in this moment...with no beginning or end?

No rest?

No sleep?

The sleepless nights have been piling up again.

One day bleeds into the next...with nothing to staunch the flow.

I drift and doze, in fits and starts...stirring at some sound or other...some furtive shift from dark corners...or the restless toss and turn of the toddler beside me...

I startle awake...gasping, sometimes...shaking off cobwebs.  My subconscious having found reason or resolution to any number of stressors it's been working at.

I try to count...100 down to 1, then back up again...but my mind interrupts with

did you?

could you?

have you?

should you?

It churns away in the midnight hours...leaping from one query to the next.

Determined to solve it all by morning.

I turn my head slowly to where the clock beckons from the corner.

Numbers aglow.

A groan from deep within as I watch the minutes flick by.

The room is wreathed in blues and greys.

Weak yellow finds a path along the floor...bringing moonlight in to taunt me as I abandon the closed lids of wishfulness and stare into oppressive dark.

I try to turn it off.

To tune it out.

To silence the sigh and the snarl.

I call upon the ghosts.

Summon the day's quiet pleasures.

Try to breathe life into the moving pictures of memory.

But they fade. Go dark.

Leaving words and images behind.

Items to address.

Problems to solve.

Challenges to overcome.

My days are so full of the movement from one person's need to another's,

that rational thought has fallen into the dark place.

Night-time has become 'office hours' for the mind that never sleeps.

When order and hour melt into the shadow, it begins the untangling...pulling on one thought or another...one thread that unwinds then jerks at a knot...

Sleep is impossible.

Breathing slowly...

Counting...slower...

Blinking open when the weight of thought becomes too heavy on the lids.

Within these walls, all others sleep.

They rest and they dream.

If I hold my breath, I can hear theirs through open doorways.  Steady in and steady out.

I try to match the pace with one or other, and choke.

I rise.

Countless times.

To scrawl out some reminder.

To note some clarity.

To schedule some task.

I rise.

And return.

Curl this way...then that...

Hot...then cold...

Digging my toes into the soft blanket...then kicking them free...

Staring...once more...and again...at the clock...

Unspoken dare to stop.

Tick...to-o-o-o-o-o-o-ck it blinks.

The room fogs over as lighter greys push out the dark.

The pale moonlight streak fades back into itself.

The room re-emerges...furnishings coming back into solid form and walls climbing.

I am awake.

Still.

Not again.

I am awake and I am tired, unrested.

I am tired.

Bone weary.

Brain addled.

The work of night having worn me to the bone.

I am tired.

And terrified that another sleepless night will follow...

...why empty pages should stay that way...

It's a 'sit with the empty page' kind of an afternoon here.

~~~
With September just round the corner, I've dragged out everyone's planners to make sure we're all on the same page and spent the last hour or so synching up all the appointments and activities.
I've always found that while having a planner app on my phone is certainly useful on the go, I feel far more organized when I've a paper planner in front of me.

~~~

Having enforced a 'break' from homeschool/home-based therapy for July and August, I've got to get things back in order around here. We needed the break, for sure.  It just so happened to coincide with possibly the most overwhelming and stressful period in life, lately.  So, what I'd first framed as a 'break'...a 'summer vacation'...turned into just a significant reduction in practice as my energy was drained elsewhere.  Now, as I look up at the bins and boxes holding all my lesson plans and supplies, I'm forcefully tamping down feelings of mom-guilt and trying to psyche myself back up for the challenge of 'being all the things'.

~~~

All my healthy practices have run to seed.
I'm exhausted, and drained, and running on caffeine fumes.

No.

I'm running on cortisol.

And it shows.

~~~

I need to learn how to disengage.

I need to learn how to say no. 

I need to disembark from the 'stop drop and roll' routine I've been riding, of managing everyone else's crises while ignoring my own.

~~~

Empty pages.

Because making plans seems...brash...tempting of fate.

Because I can't handle anymore disappointment.

Empty pages because I need to rest.

Empty pages.

Because words untapped might rush out too quickly, too meaningfully, too truthfully...

Because I might write the anger onto the page.

Because I'd make a target of myself to turn the oncoming storm away from one who calls me sister.

~~~

My queue is full of half-formed posts.

Abandoned fits and starts, left to molder.

The problem is, one thing leads to another. One string pulls on a tangle.  One post opens up a floodgate of things I don't know how to write about...things I don't know how to feel about...things I haven't recovered from, or grown past, or healed.

~~~

I want to be selfish.

I want to set aside everyone else's need, and just curl up into a cozy tangle and sleep until I'm rested. 

...come what May...

Sounds of exuberant play and gentle chastisement float in from behind the closed door where two of my brood are re-engineering a gear train...and I am...content.

The house is otherwise still and silent...household chores abandoned halfway through...and I've time to step away from the must-do's and make space for the want-to's.  

I've written here but a few times...no plan in place, or rather...no plan come to fruition.  Rather...the flow of discordant thought spilling onto the page.  Which is fine, and necessary on occasion, and...a release.
But my posts have been neither steady nor intentional, and I dislike that.
My gears are rusty...I think. The talent for word-wrangling gone to seed, from lack of use.

A funny observation here: of late, when I'm struggling to come up with the intended word, I find myself looking upward and squinting.  An action to attach to the search. 

I don't think I did that before.

Before.
When words came easily and I wasn't so wrung out.

At any rate, this little window of time is here and now, and as good a time as any to 'put in the practice'.

So...here I am...here I go...here I write...

There's been so much of May that went by unnoticed.  The soft, sweet moments of tangly-limbed book-nests and snuggle-in-mornings.  The peaks and valleys of day-to-day toddler temperament and young-adult catch-and-release.  Thrift trips and daytrips and down-the-stairs trips. New signs and new words (or...close approximations at least!) and fresh utilizations of signs and words and skills already learned.  Kitchen-craft and breakfast-failures...paint splotches and play-doh sculptures...cleanups and cleanouts and deep-cleansing-breaths.

Yes...there were bees.

And crises.

And emergencies.

But in between...there was just May.

And May was okay.

...may-bee, may-bee not...

Writing, like seemingly everything else in my life these days, comes in fits and spurts...

That previous post?
Was
Not
What I sat down to write.

Not at all.

But out the words tripped...fingers clicking away...mind swirling through memory...

It's fine.

I'm fine.

Sometimes the quiet words just write themselves out.

~~~

What I intended to sit down to write was this:

May has been full of bees.

And because May has been full of bees, I am on overwhelm.

Okay, may-bee not just bee-cause of the bees...

~~~

Spring sprang a leak this year...making a muddle...or should that be puddle...of all my 'big plans'.

Life, leaking out all over the place...one spill running into the next.

I've been jokingly referring to myself as a 'crisis manager' of late...because, seemingly, every day brings another to my doorstep.

And the bees are witness to it all...buzzing about each window and watching me unravel.

I'd like a redo...right about now...write about now...a rewrite of May.

One in which I can make plans and keep them.

One in which progress is both linear and exponential...and altogether measurable.

Instead of a maelstrom.

Instead of a meltdown.

Instead of a let-down.

~~~

May has been full of bees.

At the windows.

In the doorway.

Worse, yet, the ones who find their way in through some yet un-caulked crack.

From sunrise to sundown...a constant presence...a constant threat.

The "landlord" solution has been...less than ideal, so the swarm remains, having simply moved to higher ground and sworn on revenge.

They've kept us indoors, more often than not, and stalled our usual outward expansion of spring.

~~~

May has been full.

Of bees.

Of crises.

Of emergencies.

May has been full of effort and failure and things that just don't work.

~~~

I'm learning the hard way, I suppose, that the trauma-based coping mechanisms I've relied on for too much of my life really-truly aren't meant for long term sustained use.

It hasn't gone unnoticed...that the year in which I finally resolved to heal, has brought so much of the damage right back to the surface.

It's as though the calendar saw my resolution and said "I'll raise you...let's do it all at once!".

So rather than parsing things out...bit by bit...sitting with one wound or another and letting my inner child cry it out...May has been a "throw it all in a blender" month.

The therapeutic approach, of course, is to tackle one thing at a time.

But that doesn't account for the moments or weeks or Mays when it literally all hits at the same time.

~~~

This quote found its way to me recently.

“Break often - not like porcelain, but like waves.”

― Scherezade Siobhan

I read it...once, then again.  Clicked through to copy/paste/save.

And then promptly forgot about it.

But today I happened upon it again, and this time I really...really read it.

There's no doubt that this healing requires breaking...requires not only feeling the old wounds, but picking away at the scabs and scar tissue they've been covered in.

So if breaking is required, may-bee...

Maybe I'll break like waves...relentless, unceasing, changing the terrain with every move.

Maybe I'll break like waves and heal as I flood out all the wounds at the same time.

...phone a friend...

 Clarity, these days, seems hard to come by.

Whether it's the sleep deprivation or the 'crisis management mode'...or just the gears rusting in this brain of mine...the ability to step back and observe the whole has been lacking lately.
Tracking the unpredictable but perpetual motion of too many balls in the air has caused me to get stuck in laser-focus mode, and I've found myself floundering when it comes to big-picture planning.
Despite lists and calendars and planners and organization...I've been (poorly) jumping from one action task to another, with no attention for the outcome.  It's plugging one hole in a sieve, while the rest pour out unstopped.

Until right now. This very moment.

(Okay, truthfully, not THIS very moment...but a few moments ago, before I thought to write it out here.)

There's an annual phone call I make, to an old...friend.  Weird, that. Not sure what the label is.  Former boyfriend.  Of eons ago.  Long-distance by phone alone...but somehow, connection...to a previous iteration of me, to a shared past, to parts of my experience that only he could understand.  
Ugh...I digress...

(As I do...)

Every year, the birthday calls.  Mine, outgoing, at the end of May. Returned a week or so later when it's my turn to celebrate.  Always a moment of startle in my mind when he picks up and the voice is both familiar and stranger.
Every year a rushed recap...a few laughs...perhaps some insight shared in one direction or the other.
A feeling of normalcy, because so much of what formed me...he was present for.

~~~

The call was a few days late this year.  Belated...my doing.  The birthday fell on a Saturday. I didn't want to interrupt.  And then it was a holiday weekend, and...  So I called today.  And had that moment of familiar but strange all over again.  Always marveling at who we carry along with us.  Forever navigating the momentary discomfiture of...is it muscle memory...or auditory memory that stirs up emotion long passed...

Our conversation the standard sort of catch-up.  His successes and health.  My children.

And in the middle of all that back and forth, there it was:

A reminder of what I already know...but daily forget.

An outside voice...outside perspective...

An acknowledgement by someone so very far out of my focus...that my feelings of alone...solitary...at a loss...are, in their own way, both valid and not.  An understanding of the different path....different timeline...my eldest is on.  And the gift of encouragement by way of his experiential knowledge and singular path to success.  

I'm over here marveling at the 'weirdness' of that.  Once upon a time, I was in love.  Once upon a time, I was deeply hurt.  And here, in the present, we're...friends...of the genuine sort...  And of all the people who could have set me back on my feet in 'this moment in time'...

Weird.  Just...weird.

Thank goodness for the weirdness.

I'd almost called him, months ago, when life took an unexpected turn and the past 'knocked on the door'.  I almost picked up the phone then.  Because he alone knew the players of this particular game...he alone knew how I'd been changed in meeting them.  

But I didn't.

It felt...unfair to unload that particular emotional baggage on a once-a-year phone-a-friend.

I wanted insight...or, guidance...a pointed 'yes...throw in' or 'no, back away slowly'.

What I wanted in those early moments was to pull from the past and have a friend beside me who knew how emotionally attached I was to the idea of birth family...to feeling a part of something... and who knew equally how it nearly broke me. 

There she is...the me of that part of the timeline.  Gosh, she was young and naive.

But that isn't fair, is it?

To dredge up the old.

To call on a shared moment in the past as reason for interrupting the present.

So, I didn't call.

But it came up today.  Unfiltered.  Stream of consciousness...much like I write here.

And in me...a perceptible shift...a sigh of relief to hear a familiar-to-the-original-experience voice remark on the present.  A flickering of 'not alone' in this, too.

~~~

I isolate.

Not news...certainly not new news.

I batten the hatches and shore up the barriers.

I lockdown and work at the problems in solitary confinement...coming up to breathe only once I've found resolution or solution.

No one would accuse me of having healthy coping mechanisms.

I've always had this sense of needing to handle things on my own.

Not be a burden.

A disruption.

An interruption.

Not to cause worry to anyone else over what I might be struggling with.

~~~

But...

This year...

I'm working on healing...

And today, that meant a phone call to an old friend...and opening up...at a comfortable distance of both miles and years...just enough to receive a sprinkling of clarity atop a tangled mess of crises.

...just let me bee...

 "It's not paranoia if they're really after you."

We've been invaded...again...

Or rather, we've BEEn invaded again.

The bees are back, in full force, in the front garden.  Staking their claim and burrowing deep.
Into the walls, and in through the cracks...literally, to our annual horror.

~~~

I'm allergic, you see.
To bee stings. (To wasps and hornets as well...such luck!)
I'm allergic, and they know it.
They've found the weakest link (it's me!) and are clearly determined to take me out. 

~~~

"Paranoia!", you say.  As they build their nest up against my front wall.  As they swarm round my front door.  As they sneak inside through cracks and crevasses and send in scouts to assess the weak points.

~~~

They arrived, baggage in hand, on the first warm day in April and set up camp.  A few grew to a hundred, and then grew again.  We noted their arrival from our front window...their humming and buzzing interrupted by a few dizzying crashes into glass. 

I surveyed the interior wall, bending this way and that, angling myself to check for any cracks where the sunlight was visible.

They waited.

Satisfied, somewhat, with my once-over, I settled down to nurse Henri.  Warm, dappled light through the window.  Soft lullabies.  A slumberous child.

...and...

...a bee...

...that wriggled in from some unspotted hole and whizzed right under my nose, colliding with the window, before furiously buzzing about the room.

I froze, there in the chair, with babe at breast and cold sweat pouring down.

I shrieked, then stifled...aware of but two things...my absolute vulnerability and the safety of my son.

I called for my eldest, then harshly warned him to slow his approach.  Slowly and carefully nudging Henri off the nipple, and into his brother's arms.  Swiftly pulling down my top and grasping for the closest shoe. Waiting for my boys to make it to the safety of the other room and a closed door, before I tentatively stepped forward, shoe raised. 

Okay, okay...let's cut the drama and skip forward to...

1 bee...2 bees...3 bees dead.  Sprayed with household cleaner to stop them in their flight and then thwacked into the great unknown by my shoe.  Pulverized into oblivion by my adrenaline.

Phone calls...three in a row...as each bee died...and my panic at the home invasion.

Caulk, squeezed out in a messy glob, to fill the new hole we found.
Barricaded in the bedroom, behind a door, stopped up with a towel barrier at the floor.

The would-be heroes arrived in...maybe less than due time, but arrived nonetheless, spray cans of poison aloft...and trudged into the front garden bracken.  A hiss of foam...a splash of spray...as the picture window went black and two man-shaped clouds of buzzing sped past, both yelping. 

Oh!

That's a nest!

We...both boys and I...watched in horror as thousands of bees swarmed our home.  The sound of their bodies beating against the windows and door...a roar...

We curled into one another...watching, waiting, spray at the ready.

~~~

We stayed indoors that day.

~~~

The following day, the pest removal company sent an assessor.

Who came.

Who saw.

Who declared himself useless...

Because. Honeybees.

 

Yup.

Honeybees.

A massive colony of honeybees.

With, apparently, more rights than the rest of us.

So off he went.

(With a few phone numbers of potential honeybee-movers.)

~~~

We waited 'til dusk to brave the outdoors.

~~~

A storm rolled through, and pushed the unseasonably warm weather back into summer where it belongs.  With the chill restored, we found ourselves a bit braver, and ventured out of doors during daylight hours. 

A few early morning walks.  A few hours of rock collecting and chalk drawing and stick hoarding.
A few days' reprieve.

...and then the flowers bloomed, and the bees woke up.

~~~

So now we wait...on a knife's edge.  Hoping that they won't find a new way in.  Judging our walking time by both breeze and shade of grey.  Waiting for "the ones who will remove them" to come.

We wait.

I wait.

To feel safe and secure.

To venture out without the need for hyper-vigilance and poison in hand.

I wait for spring's second-coming, and wonder if we'll be able to enjoy it...

if they'll just let me be...bee-free...

...time out (in)...

The house is quiet.
Nothing but the ticking clock and the clicking keys.

I'm home...alone...for a brief moment while 'the boys' are out.
A rarity.
Nay, an impossibility.
I can count the hours of alone time I've had in recent years on one hand.

I don't know what to do with myself.

I'm avoiding the toys strewn on the floor, and the kitchen mess, and the ever-growing list of chores. I've stepped over the toys gingerly and blinkered my eyes to the counter in my periphery.  I'm avoiding it all...because if I gave in to that urge to clean and tidy and fix, I'd still be serving them...not myself.  And they'd arrive home to the same exhausted, touched-out, drained version of me that I've become of late.

But I don't know what to do with myself.
I don't know what to do for myself.
I've fallen out of the habit of time out.

So I opened this page...the blank white expanse in a dimly lit room...just enough to force my focus.

But what to write?

What to think about?

What's left of me that isn't someone else's person?

I'm spread thin...which is funny, as I'm the heaviest I've ever been.

(Perhaps I should be using this time to cycle and burn this me back into the shape the old one had?)  

I don't know how to say no...or how not to give 100%...or how to delegate to someone else.

So I'm spread thin.

And everyone is getting less and less of me...as I slowly wear down to nothing.

~~~

That wasn't where I thought we were going, there.

Let's wrangle these words back together.

~~~

The house is quiet and I've an hour or so to...

do???

What, exactly?

There's nothing that's just mine...just me...anymore.

Old habits...old hobbies...old daydreams...

They've been naught but cinder for years now.

I spent the first few minutes of my "time out" picking things up and prepping to clean.

Then, I startled into the realization that I shouldn't do any of that...not now, not with this precious 'one time only' opportunity.

So here I sit....fingers flying...mind...ummm...blank?

I don't know who to be if I'm not theirs.

I've spent so long postponing...myself...that I can't remember what she likes.

~~~

Is this part of the healing?

It feels more like depression.  Situational depression. Nothing permanent or chemical.  Just...the ebb that comes with the flow.  The emptiness of pouring everything out into others.

~~~

I've reasoned my way out of every notion that's flickered through my subconscious.

You're sleep-deprived. Take a nap! /Can't...won't be able to sleep tonight if I do.

You could take a long, hot shower!/Nah, waste of water.

Watch something? / I'm not current on anything current.

Read! / Um...the only books here are Henri's.

So here I sit...filling space and taking time.

Not very well.

Not in a way worthy of the occasion and the rarity.

Not with the fanfare and fun of "time out...in".

Just...here...

Here, on this page, where my mind unspools through my fingers and leaves a trail of words behind.

Perhaps I should have gone with the cycling, instead...

 

...copy/paste and expand...

What follows, in bold, are the words from a recent series of my personal Instagram stories.  Having shared them in that format on a vulnerable whim, I've copied them to here as a 'stepping off point' for further conversation around our family's current situation: navigating young adulthood and social-constructs around success and productivity, disability, support needs and resources....and the ever-unfolding dynamic (complete with seismic shifts) of hope, expectation, and delay.

Just taking a moment to sit with these thoughts while Henri nurses.
That previous slide barely scratches the surface.  Johannes is brilliant...brilliant in ways most of us can't even comprehend or measure.  That's not bragging. It's actually the complete opposite.  It's complaining.
Because high intellect is met, in society, with great expectation.
And in the case of high IQ autistics, that expectation can be devastating.  Because it too often assumes that the individual can 'push past' or 'break through' the very real limitations of his disability and somehow, miraculously, 'behave' as a neurotypical.  It casts them in the light of failure if they aren't 'making the most' of their intellectual gifts and potential within neurotypically-designed/understood parameters.

Since the very earliest days of Johannes' public-school education, it was recognized that he was 'gifted'.  His mind is a wonder to behold. Conversations with him on most any subject take to staggering heights and glorious descents.  His capacity for data...for knowledge, is...beyond.  And his ability to reason and extrapolate and expand upon that data is limitless.  I often think of him as the ultimate problem-solver.  His mind takes a problem down to all of its basic elements and then forms a string of sequential 'fixes'...all innovative, all reasonable but not necessarily probable...  He's able, at a moment's notice, to draw from anything he's taken in (read, heard, seen, experienced, etc...) in order to extend the dialogue into unexpected areas.  

He is, as I have often said, the most interesting person I know.

He is 'gifted'.

He is also disabled.

(As my personal "editor in chief", he has approved the above use of terminology.  But...and this is big...we don't tend to use that phrase in that manner, because language is nuanced and language around diagnosis and disability has been so misused in society.)

Neither cancels out the other.

Disability, or, rather, the specific support needs he has, are wholly separate from self-or-intellectual manifestation.  They are not 'over-ride-able' or 'dismissable' or even 'set-aside-able'.  They are part of his core-processing system.  

To imagine that logic and reasoning can somehow overturn the basic coding of neurodivergence is...laughable.  And yet, that very notion has been a constant.

Because, you see...

...he's 'gifted'.

Gifted: given something 'extra', exceptional

And...

Exceptional means...

...the rules don't apply.

???

Wait, what?

So heading back to the above....from the beginning, he was singled out as 'gifted', as exceptional...and therefore as someone to whom the rules wouldn't be applied.  The fight for services and supports was bitter and bloody...an ongoing battle whose #1 casualty was always, always his self-perception...his confidence.  Both sides manipulating language and diagnostic terminology to suit their end goals.  Far too often, the 'path to IEP' was littered with shame.  The 'team meetings' we had here at home, strategizing how to utilize specific anecdotal evidence of support needs while utterly ignoring his many, varied strengths and skills...  The conversations, ongoing even now, in which I repeatedly told him that he would have to listen as 'so called experts' defined him by terms that never, never applied to him...broke him down to a series of deficits and problems to solve and useless, rote 'skills' to drill. 

He was gifted.  He was exceptional.  He was...an exception to the expectations.

He was...in fact, expected to intellectualize his way into neurotypicality, one AP class at a time. 

And here we are...some 10 months after graduation...

And he remains gifted.

He remains exceptional.

He has, in 10 months' time, been living an exception from the expected.

Because he didn't matriculate at the Ivy Leagues as expected.

He didn't fast-track his way through freshman year to an internship.

He didn't submit his first prosthetic design for consideration.

He hasn't yet recovered from the battle.

And he hasn't miraculously intellectualized his way into the neurotypical life with all its functioning requirements and demands. 

Creating an environment in which Johannes can continue to learn and grow...using both his talents and his passion...to build his own best life, is an ongoing challenge.

There is no structure in place, now that he's graduated.  There's no daily responsibility to show up for...no grading system in place to carve out the failures and successes.  There's no desk at which he sits and performs the exercises of ongoing education, because the areas on which he's working...studying....applying...aren't found in textbooks.

He's learning how to be exceptional in a world that's built for the unexceptional.
And he's breaking himself into pieces, trying to mimic the habits and skills and routines of neurotypicals. 

And, frankly, so am I.  Because the support system...is me.  The support person...is me.  The daily living skill driller...the calendar...the timer...the reminder...is me.  The office manager and social media director for his business...is me.  I handle the books and the schedule and the stopwatch on every project, every proposal, every venture.  I am the clock. I am the (sometimes, hopefully) stable ground.

It is a full-time job.  The "managing" of this talent.

A full-time job squeezed into limited seconds...minutes...never hours... 

Because I have other children...other responsibilities...other jobs....all of equal importance.

And, in what's perhaps the most important piece, it's completely unpredictable. There's no guide.  No applicable rules or schedule or system.

There is just whatever each day brings.... incalculable stimuli and overwhelm...and the ongoing need for ever-reversing, ever-evolving response. 

~~~

Watching his former peers 'moving on' in their freshman years is a heartbreaking lesson in this parenthood...of managing my own expectations and wishes, of reordering my life around his very real and present ongoing support needs, and of not experiencing what is the norm for so many others.

It feels like an end.  A death of a dream. 
Even though it's not. 
It feels like everything we both worked toward was just suddenly ripped out of existence.

It does not feel like a postponement.  A 'gap'.

This gap year feels like failure.

Because it's not, likely, just this one year.

The assessments I have to do as his parent and his support person have made it very clear that he is Not Yet Ready...and that feels like a crushing blow.

It feels like the road to a bright and beautiful future just hit a dead-end.

Feels.

Feelings overrunning fact.

Feelings, with roots in the fear center of motherhood, that have been allowed to fester and run wild. Feelings that find red flags and justifications in the minutiae of daily life. 
Feelings that drown out hope.
Feelings that cloud my judgement.

It feels like an end, and it is.

An end to this particular chapter.

This first-10-months-after-graduation chapter.

The next page is...blank...

And that is just as terrifying.

The lack of characters and lines conjuring up insecurity and doubt.

Johannes and I are in a very different season right now.
It's been challenging.
It's been devastating.
It's been beautiful.

We move in colliding circles around each other daily...never too far from the other.  The points of intersection wearing away like friction burns as we both try to scratch out patches of independence.  He, chomping at the bit...wanting to assert his young adulthood and sit as an equal at the table.

Me, desperately trying to shake off my ever-present-shadow and have a single conversation that he doesn't push his way into.

Both of us, at the end of each day, finding comfort in our routines and our silent companionship.

We're learning to find grace in the uncomfortable.

We're learning how to acknowledge disappointment while managing to not emotionally invest in it.

We're learning how to grow a whole new partnership.

Years ago, I wrote of his growing up and growing out in terms of a relay race.  I wrote of how we'd come to the part where the baton is passed, from me to him.

What I didn't realize was that there's a time...extended in our case...where the baton is held by both.

A time where both runners...the one exhausted of effort and the other, just now catching up and hoping to overtake...are equal stake-holders...err...baton-holders.

The partnership...the teamwork...is both a mutual effort at keeping that baton aloft, and a tug-of-war between two runners, both intent on crossing that finish line.  

And most of the time, we're both failing to keep it together.

That friction of intersection?

That tug-of-war?

Daily.

My suggestions and supports so often in conflict with what he wants to be able to do 'by himself'.

His lack of independence or, rather, his ongoing support needs in conflict with my need for him to grab that baton and let me take a slower lap.

More pointedly, his still-constant need of me...a drain on my energy and resources and an interference in attention owed to my other children and my other responsibilities and my own self.

This is NOT what I envisioned.

It's not what I thought we were working toward.

It's not what all those therapies and IEPs and support plans were for.

It's not what those straights As and test scores led me to believe.

This 'gap'...this, between...and after...and before???...and undefined passage of time?

This wasn't expected.

It's become a lesson in pivoting.  In...taking our team out of the race even through it looked like we were in the lead...  In slowing and even stopping our forward movement, in order to assess damages...treat injuries...and readdress the cost/benefit analysis of continuing in the next heat.

It's something else entirely.

And you know what?

It's really, really hard to come to terms with where we're at and what's in the immediate future.  Because I was never planning for him not to overcome.

That's my own crutch.  My own 'reckoning come due'.

It's my 'toxic trait'...meeting each challenge overcome with one bigger and bolder...and in some cases, completely unreachable.

It's NOT ON HIM.

It's 100% my own failure to realize that Effort In does not guarantee Output.

It's my failure to wholly accept that his support needs are the core-processing system...non-negotiables.

It's my own completely inappropriate Great Expectation.

And it's been with me since the beginning...since the first diagnostic test.  It's been the rod in my spine that kept me standing when the rest of me fell to pieces in early days of diagnosis and behavior. It's been the light at the end of the tunnel when my own overwhelm has swallowed me up.

It's been a Friend.

A Saviour.

A Hope.

It's been a lie.

Because there was, in fact, never an Overcoming to be had.

Nor needed.

I never accepted that there might not be a 'breakthrough' and full, functional independence.

I had pictures in my mind...possibilities of 'life after' highschool/college/career.  An off-campus residence for daily support.  A two-family home with regular reminders and assists.  A car service account...a grocery shopper...an automated evening shutoff.

Independence, by way of met support needs.

Hands off...while hands on.

That's Not where we're at.

I never paused in my efforts to acknowledge the very real possibilities of what mothering an adult autistic person might look and feel like.

And neither did he.

We're both taking tentative 'first steps'...wobbling and grasping for support, as we try to plot out not only where we actually are right now...but also, what might come next.

So here we are...scouting out this new territory and trying on hats for size, as we rewrite our team's playbook.

I'm finding myself chafing at the feel of those hats...those responsibilities that I thought I'd have been able to pass off to him 'by now'.  They're old, familiar companions...sure.  They're rote and routine and almost mechanical.  But I am tired of them.  They require energy that I feel drained of right now.  They require me to split myself in two...one side always observing/analyzing/reacting in advance to perceived areas of support...the other just trying to be all the things to all the other people.

I wish everyone else would just stop expecting my neurodivergent son to follow a neurotypical path.

"Silence!", I want to shout.  "Silence. Your unsolicited opinion has no place here."

Silence, please?

Stop forcing your way in. Stop adding the weight of your 'disappointed expectations' to my already overloaded travel-pack.

Yes, he's gifted.

Yes, he's exceptional.

He is all three...gifted, exceptional, autistic...and so very, very much more.

The standard path...the expected, is Not For Him.

And likewise, it is Not For Me.

I wish we could just breathe easy and know that it's all coming together exactly as intended, and neither he nor I need to hit benchmarks of 'normal' progression.

I wish we could.

I think we should.

Let's just do that.

...spring cleaning...

Much as I would like to think that some echo of my former self still lingers, the truth is that this chapter of motherhood has effectively killed her off...and with her, all sense of scheduling, organizing, and planning.

That's not to say I don't still try.  The planner sits atop the kitchen table, full of hastily scribbled "reminders to self" and checklists and calendar notations.  But at the end of every day, the page tells the true story...a few lines of text checked and crossed off in the early hours of caffeination...and then, abandonment.  Each day rolling over into the next, with a growing list of to-dos and want-tos...and, worse yet, should-have-alreadys...

'Twixt toddler-hood and the (now) 20 year old, my days are a precarious balancing act of tasks/goals and chaos control...and that's before adding in the "crisis management" that has been the operating system of recent months. 

Come night...or, rather, midnight and her shadowy sisters, I pause long enough to copy the lines of one day over into the next and shake loose the disappointment-irritation-shame of having failed to accomplish once again.

So here I sit, with planner beside me, full of 'best laid plans' and the traffic snarl of 'good intentions'.

Here I sit, in contemplative silence (of inner self, not surroundings...ha!) marking the passage of days and idly scrolling through my handwritten notes.

Wondering, as always if I'll ever get back on track.

Wondering just where and when and how I got off track to begin with.

And then I hear the hushed murmurs of my two boys, from but a few feet away, where they play.

Two boys.

One young adult.

One newly minted three year old.

Playing with all the wild abandonment of boyhood at trucks and dinos and transformers.

Ah.  Yes.  There it is.  The off-ramp.

Of motherhood.

Motherhood of this variety.

The "drop everything to be in the moment" motherhood.

The "tend to the curiousities" and let the rest fall away motherhood.

The "wear all the hats" motherhood.

The "embrace both skills and deficits of disability" motherhood.

The...

Stop

Drop

and Roll With It

motherhood.

The...pause now to pick up the pieces and wonder if I'll ever even get back to finishing this post motherhood.

6:37 a.m.

...tidying up...

It's a gorgeous day, outside, today.

Crisp and clear...sunny and bright.

The pull of fresh air has my fingers itching at window sashes and doors...the impulse to fling them all open and welcome in the *idea* of spring almost too strong to resist.

It's gorgeous, outside.

But here within these walls, as I pause in the middle of a frantic morning clean up, the bright sunlight highlights all the flaws.  The hairline cracks and chipped paint.  The mismatched touch-ups and faded spots.  The cat hairs and stains.  The fingerprints and finger-paint-prints and nose-prints.

The light streams in from the picture window and draws out dust-bunnies from their dark warrens. It forces its ways in, casting the front rooms into stark relief...multiplying contrast and saturation...drawing the eye to the shabby of our chic.

I've walked away, for a moment.  Taken a time out to stop the rising tide of anxiety.

We've *company* coming today, to celebrate the boys' birthdays.  Company, with a capital C.

C:
for criticizing
for condescending
for comparing
for correcting

And I've taken to the page to exorcise (or, perhaps, exercise) my self-loathing spiral...to step away from the hustle-and-bustle and tousle of rearranging and relocating that 'needs must' when welcoming anyone into our small space.  I've felt the anticipatory panic bubbling up and given myself an 'out' of blank white space and silence for a moment or two...or ten.

Around me, the chaos builds.  A battle of dueling vacuums in the living room.  Drip-drying dishes on the counter. Bin on the floor, overflowing with "clutter": those bits and pieces of daily life that would be scrutinized and sneered at.

Beside me, here at the table, a hastily scrawled 'to-do' list that seems to double in size each time we each set off to complete a task.

So much effort...
So much work...
Just to avert...
No!
Just to minimize the damage of the pointed barbs that will be delivered with such deliberate intent.

So here I sit, breathing in and out...slow and steady...and getting rather heady from the lack of oxygen.  Forcing myself to write it out rather than act it out in slamming drawers and hard-flung doors. Deliberately taking time out to get out...of my own head, of my own way.

It's a gorgeous day, outside.

There's nothing to be done, inside.  Nothing but a quick tidy and rinse. Nothing but a cake to bake (please, oven, don't mess with me today) and decorate. Nothing but a table to set.

Nothing to be done, inside.

Except...that's not true...because Company is coming and no matter what I do, they'll find fault.

 

...headed for a breakdown...

It's been...a minute...since my fingers hit the keyboard in *this space* and I'm not all that sure, as my fingers fly, of where the words will go or what they will decide to say.

I started this year with fresh perspective and lessons learned.

I started it with an end goal, and the strategies to get there.

I started it with a word.

And here I am, start of March, covered in scabs from freshly-picked wounds.

Mother-wounds
Inner-child wounds
Trauma-wounds

February was a whole thing.  A month. 
A slow-motion crash? A journey? A karmic joke?

 February was a bubbling up of things I meant to address...someday, somehow...not now... 

Ha!  'Cause that usually works out so well for me!

February was the stretching of scar tissue and tearing of stitches and the knowledge that my journey to healing was going to involve reliving the past and getting wounded all over again.

February was a month of connection and division.
 Of frantically trying to snuff out both little sparks and raging wildfires.
Of trying to clear all the refuse and somehow compartmentalize each action item despite the impossible tangle of intersections.

February saw my intention to heal and said, "Great idea...so, hey let's go ahead and break you all the way down to your original parts first with a series of completely overwhelming experiences."
And I had no choice but to turn myself over to the process.
This time...opening myself up to the realness of it all...feeling the feelings and poking at the damaged parts...allowing that pain to wash over me afresh...

Because...
Healing means:
   breaking bad habits
breaking down unstable barriers
breaking toxic patterns

Healing means Addressing It All ~ Analyzing It All ~ Accepting It All...

...and only then, Releasing It All and moving forward in wholeness.

~~~

So here is March, and I'm slightly woozy from the wounding and rebandaging.

But I'm on my way.
Little pieces I'd left in shambles are...reconstituting...resurfacing...reanimating.
Little bits of me I'd buried are coming back to the surface, and I'm learning...daily...how to share the beauty of them with my family and with myself.

I'm healing those wounds and those patterns and those foundations.

It's slow...and altogether unsteady...with sudden gaping drop-aways...but it's happening...

Healing.

...cauterizing the wound...

 The irony is not lost on me that I went into January with a focus on healing...as first my youngest~then my eldest~and now myself (and my partner) all succumbed to the viral Winter '23 virus surge.  Presently, I'm curled up in the recliner, blankets wound about me in perplexing tangles, with a veritable pharmacy on hand beside me.  I'm medicated, and then some, and slightly hazy around the edges.

Yesterday was, among other things, the perfect counterpoint to my word for the year.  It was a bitter reminder of how far I'd allowed myself to fall.  And a lesson, by deed/not word, of what not to do, for my children.  In fact, later in the evening I very intentionally said to my eldest " Don't EVER let one bad thing that happens to you jostle you so off-course that you wind up here." 

Talk about shame...and self-loathing...and...
...terror.

And the self-feeding cycle of all those emotions as I struggled to come to terms with what I already knew...

My focus this year was going to be on healing.

On my terms.

At my pace

In safe, gentle ways.

Was.

But here and now...my hand was being forced without time to process.  I was...sick.

My youngest came down with cold symptoms and eye-discharge first.  Then my eldest spiked a fever, chills, congestion...and pinkeye.  A week later, I woke up with a burning throat and a steadily rising temperature.  Excruciating throat pain with every breath...post-nasal drip...pressure in the sinuses...etc..
But I "soldiered" on...tending to my children and my partner, easing their discomfort, convinced I could power through mine. 

Just pop the Aleve and keep the citrus coming.  I can fight this off myself.

Mind you...we all just got over RSV which paid a visit in November and over-stayed its welcome.  I'm nursing, still, and I'm quite convinced that my body is putting more effort into making milk then it is into healing itself. 

But I digress...

I was sick.  I needed real medicine...not just fever-reducers and clear liquids.

But the very idea of stepping through the doors of a medical office made me want to cry.

I'm not a crier.  I'm a blink it back...swallow it...never let them see you hurt...

Perhaps learning how to cry is part of healing?

So, something happened.  Once. One bad thing.  Horrific, really. 

You don't need to know, and I don't need to write it out.  Not here. Not now.

It was a bad thing.

One bad thing that I have, in my post-traumatic avoidance, allowed to fester and grow into an all-encompassing terror that stops me in my tracks.  It defies reason and logic, and the pursuit of health. 

One bad thing happened.  To me.

And I have spent all these years, trying to protect myself the only way I knew how...but in reality, just continuing to be a victim.

Because I just stopped.

I have tried.  Please know that.  I have made the appointments, and from time to time, I have managed to force myself to go.  But eventually the fear overrides my earnest attempts, and the years go by.

This is trauma. And it has always been stronger than my will.

So I have gone years without a check-up...without dental interventions...without primary and continuing care.  Because I am weaker than my fears.

Yesterday, I was so sick...so weak...that my fear-response weakened, too.

I made it in the door.  I made it to the counter.  I asked if there was someone on-call for sick visits.

And I was turned away.

Because, you see, my fear...my fear had kept me out of that office for more than three years...the outside window of time that my practitioner has for considering someone an established patient.

There I was.  Inner monologue firing off warning bells as I held myself rigid so as not shake.  Having fought a battle just to cross that doorstep.  And...no...   No, I couldn't be seen.  No, I couldn't get help.  No.

I said "thank you" and walked out.  I got to the car and collapsed inside and broke into a million little pieces of self-loathing and shame.  This.  This was what I had done to myself.  Here and now, unable to get the medical help I needed because I hadn't been braver...sooner.  Why was I so weak...so pitiful?  Oh, how I hated myself then.

(In hindsight, with a cocktail of pharmaceuticals in me as I type this...it's the man that I hate...the one who did the thing...the one who made a victim of me.  But yesterday, I could only see my own shame.)

Home again.  In defeat. In shame.  Sick.  Exhausted from illness and from the fight to get past the fear.  Feverish and dizzy and weak after weeks of caring for everyone else while ignoring myself.

Aiming for stoic on the outside, but hysterical beyond the point of return on the inside.

Thankfully, my youngest was still napping.  My eldest helped me into the house...settling me down and wrapping me up like a burrito...tending to me as I've tended to him.  I hid my face as I cautioned him to not let fear ever disrupt him.  I hid as hot tears spilled out of my burning eyes.

I hid my shame. My fear.  My weakness.

I was an embarrassment.  A broken, useless thing not fit to be his parent.

And he tended to me.  Cool water and warm blankets and soft hands on my forehead.  Lights out and silence and whispered reassurances.

(He's a miracle, this one.)

Some time later, my partner returned, having found an urgent care that would accept my insurance. (Most don't, and we don't have the financial security blanket to cover medical emergencies.)

Back into the car...inner dialogue of tough-love resumed...and off we went.

I made it in the door...over that threshold.  I filled out the tablet-intake screen.

Followed the texted prompts and typed in the necessary fields.

Sat in the chair, waiting, repeating over and over...stand up, walk in, don't cry.

Finally, my name was called.

I stood up.

Walked in.

Gasped in a breath of face mask and cold, sterile hallway as my temperature was taken, and found myself in triage...counting the black dots on the wall in front of me as some part of my brain answered the assistant's questions.

Temperature, again.

Step on the scale. Ouch...my brain registering a number higher than I used to be.

Sitting down...blood pressure cuff.  I froze in panic as it tightened...feeling invisible fingers clenching my arm.  Black dots. One...two...twenty-seven...  Done.

"Follow me."

Back in the hallways with bright lights buzzing and astringent smell.

Then the gaping silence of a small room.  My adrenaline firing at every crinkle of the paper beneath me.  My breathing suddenly so loud that I didn't hear the footsteps or knock or door opening.

"I'm Doctor ____.  What brings you in here today?"

Rote answers.  Rehearsed in my head in advance.  Hands clenched around each other to no one could see the claw marks my fingers were leaving.  Pain to override freezing panic.

Checking me over.  Checking my chart.

Lights.  Swabs.

Gagging and tearing up.

Apologizing, over and over, and asking for a moment.

The doctor...older...stepping back, confused but waiting for me to gather hold of myself.

A second try at swabbing my throat.  I stayed rigid this time and didn't break.

He said "good job" and I felt a flush of...embarrassment...pride...something...

The assistant vanished to run tests while the doctor checked my ears and nose and throat again...palpating glands sore to the touch.  Asking again about my children and their symptoms.

He stepped out and I yanked my mask down, gasping for unhindered air.

Then chastised myself for that weakness and hoisted it back up.

The door opened again.  Rapid results all negative.

Caution to quarantine until the next set.

Diagnoses as he checked my sinuses again.  Directions.  Pressing in on those swollen glands and cautioning me to take everything as directed.  A moment's pause as he stopped to look me directly in the eye.  Then a hand-pat of reassurance..."It's all in my notes.  You don't have to remember it all."

Still nursing, so only one kind of antibiotic allowed and only at a lower dose...so...

Antibiotics.  Eye drops. Rinses.  Fever reducers.  OTCs for the post-nasal drip and cough and sore throat.  Homeopathy for increased comfort and symptom reduction.

"I'll put it all in my notes."

Referrals to specialists in case I need them.

Another hand pat.  "I don't expect you to need them."

Then out the door to discharge.

Features arranged and held on pause....blank...waiting for paperwork.

Back to the car.

Safe.

Collapse.

I did it.

I did that.

I made it through.

~~~~~~~~~~~~

I'm sick.  Medicated.  Fuzzy and feverish.

I liken it...yesterday...to cauterizing the wound.  A painful, but necessary sealing.  Burning to stop the ongoing bleeding...just long enough to store up energy for the next step.

(In my limited, layman's understanding of that process.)

A beginning to healing.

There will be more.

They may hurt more...or less.

But now I know what it feels like.

~~~~~~~~~~~~~~~~~~~~~~~~~

This year I chose heal as my word.

Apparently, it chose me back...and upped the stakes...forcing my hand, maybe before I thought I was ready...but in its own perfect time.

Yesterday I was full of shame.  Full of self-loathing.

Today, I'm full of meds and a little bit of pride.

Just enough of each to write it out of me.

Just enough to take note of the triumph.