What I want...What I will do to get there

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What I want...What I will do to get there

I want to live in a world where children are not scared for an absence of a loving hand to soothe.  I will offer my crooked hand to my boys, with all my imperfection; wishing them to be reaching creatures stretching out in times of need & times of giving, learning they are of one & the same.

I want to live in a world where children can raise their voices to the insanity which wreaks havoc.  I will live in a house full of loud chaotic children and instead of muffling their voices in fear of what the neighbors might hear, I will be glad my children are not afraid to be perfect monsters.

I want to live in a world where I find my voice and own legacy as a woman, beyond mother and wife.  I will keep writing, painting, making, and again and again, no matter how many false starts, to remind myself I can still grow creatively, share humbly, and lead a full, rich life.

I want to live in a world where we seize and throw out the politics of cruelty and ignorance.  I will join a thousand revolutions until I find one which catches flame and becomes a wildfire of kindness, of song, of laughing truth to power, of magic which spells I M P E A C H M E N T.

I want to believe I can again find my way out in the world, feel sunshine rain smiles voices; less pain.  I want to see my brilliant sons reach for their dreams, play their music, build their robots.  I will soak up these moments, I will take comfort and pride in baby steps, I will be kind to myself in the rebound days immobile with hurt, I will not give up.  I will not give up.  

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Where reality shows it's edges...

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Where reality shows it's edges...

I used to know MAGIC.  The unseen wonder that occasionally, albeit rarely, slipped into the peripheral space beyond the senses; the same space which holds love at first sight, gut reactions, grief, deja vu.  Magic to me encompassed all of the above and the surest faith that these transient moments were the mere tip of the magic iceberg.

Lately, I tend to rely on dark chocolate, and though it is not to be slighted, it's flavor does not linger nor offer hope.  

The magic I miss had a timeless nature, which accompanied those shifts where reality showed it's edges, around which a hush of pink sang a lyric of more.  A more which was infinite and good and Now.  Never other, magic, when it appeared was simultaneously within and without.  Never the puppet master, rather it held the suggestion of an everlasting, "everything is, has been, and everything will be OK".  I hold a handful of these moments as sure and real as a polaroid, yet yellowed and with curling edges from being tucked away in a box.  I feel some shame that my spirit is the box.

I am the fortunate parent to two mystical boy creatures; talented, beautiful, funny, and so much more than I ever would have hoped or thought to dream up.  They bring me up so close to magic's windows, the view can be cloudy with fingerprints and moistened by tears.  Be it the forced habit of the younger claiming my arm as his own, propping himself against me while we read, or his still certain refrain of I love you voiced as often as he sees me no matter how frequent, an echo of pure absent-minded heartsong.  My recent teen, the elder, makes me work harder as he has little use for me of late.  I know nothing of sports stats, cannot tell a B flat for an E major, and I have the unfortunate role as the mother who believes he should get more than 6 hours of sleep.  Homework of which he has piles, leaves him exhausted but none less committed to the over- zealous nature of marching bands; add in hormones and well he can be a hard nut to crack. Still, likely because he is too tired to remember his restraint, occasionally he forgets and starts a story about a new song, and next sharing a riff he has learned from playing his bass after school, and before he realizes he is enchanting me, he is humbly boasting under his hair in his eyes, baseball hat hidden glory of the friends he has made playing the music he loves and is ridiculously good at.  I sneak in a hug, which he allows for five seconds longer than the usual one, and I see he is well.

Writing reminds me I still know magic.  I still am lifted by the wonder of grace and serendipity.  Maybe the older glimpses of stopped hearts and awe-inspiring sensations of the world standing still were simply the product of a life with room for the profound.  Life today is busier, but still full of wonders beyond reason. Whether it whirr or whimsy, rhythm or melody, fussing or fuming, bass or tuba, each day has a plenitude of polaroids which will serve me in the future when I have misplaced the magic of that moment. 

And dark chocolate has a certain value in a home full of precocious teenagers.

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I protest, I am blessed

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I protest, I am blessed

No longer certain if it is my own unease, haunting
Held breath, homesick after rare time in good company.
Am I so insecure, projecting onto you my fears? 
Or do I see in you so clearly what I wish I was unaware.
Nervous eyes, awkward pauses and ever worse, Pity;
Pity full of questions of what has become of me.
My plan to be a good listener works well to a point,
Smile through your new houses, lawns, jobs, and your 
Pride and joys; blessings in flesh, this I know and exhale.
Reticence forgotten; my lonely, loose lips brag on my 
Husband and two boys. I have been told I boast too boldly, 
Put them on pedestals.  I know this; I also know what they endure.  
I think this is where I forget myself, begin to share our story.  
I hope it's human nature.  It's why I listened to yours. 

They are the goodness which stands down the terror for how
Could anyone loved by these gems ever wish for different air.
And no matter how squeamish I make you or visa verse, at
Home I am mom, I am known, nothing more, nothing less.
This I am sure of, witness in their ordinary childlike glee; 
And if my doubts leave me uncertain I can count on their immaturity.
They can be my holy terrors, in the ever so routine way two boys
Behaving uncensored can bring a parent to their knees.  They bicker
With perfection, by my side is their daily preference; even with
Three floors to roam, they position their noise and commotion
Under my stationary nose.  No pity allowed, little time for shame, 
We simply had to adjust how we lived within our space; I protest,
I am blessed, our King Sized Life Raft has held so much more love than pain.

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A face I cannot face today

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A face I cannot face today

I would rather forget the phone I touch or computer which nestles in my lap

Has an eye which can betray me with a finger misplaced, a prompt to update. 

Not once has the image caught resembled the me I knew; even now, I just looked.

The bathroom mirror does not misbehave nor mock and lock in the shocked disarrange.

Is it as simple as vanity to flee from this self technology or is it more perverse,

So awkward to look unrehearsed.  Disconcerting at least to see the reverse cheek,

Backwards me, only to switch and find no side which I don't want to delete and hide.

 

Behind the camera I delight to chase; snap dragons, elusive, mischievous, distracting.

Challenging to not miss the breath of life, trying to use cheese, to trap smiles in a frame.

They escape, of course; was it because I asked, or even worse yelled cheese and

Forgot to say please?   Forced memories, evidence, inside rectangle boxes

With one boy looking at his lap and the other as his eyes crosses.  The next frame no

Better, back of heads and faces so grave; I get it and put the damn camera away.

 

The question then is why I expect others on cue to face the lens when I protest,

Would rather pretend?  Post a chance glance half a decade old where my face 

Accidentally smiled right, looked the way it should.  I do not understand the

Fad of facing the phone proud and glad, nor the product it seems all but

I can obtain; symmetrical faces and smiles posted again and again, no shame.  

A face I cannot face today; I am vain, still it is a bit silly, I must proclaim.  

 

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Revision

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Revision

revision

noun  re·vi·sion  \ri-ˈvi-zhən\

Simple Definition of revision

  • : a change or a set of changes that corrects or improves something

  • : a new version of something : something (such as a piece of writing or a song) that has been corrected or changed

  • : study of information that was studied before

The past few days found me waxing poetic; a combination of spring fever and the overdue calming of a recent series of severe lower back exacerbations,  on what was declared in 2008, after a 3rd lower back surgery, a "failed low back".  I have gradually adjusted to living with the chronic pain, and the hills and valleys; still, over the past few months I have had flare-ups which forced me immobile. Days separated the January tweak* and the February tweak, and the February tweak made the extra Leap day in the month feel as long as a month of sundays. I experienced the awaited respite, calm of healing just a week ago. 

The very real shift in pain and mobility which signals a healing pattern is so reassuring, as sometimes in the early days,  long nights of these reinjuries  I have a very real fear I may not heal; return to the level of lousy I had found an acceptance.  

I spent several years looking for solutions for the 'intractable/chronic back pain, failed lower back' diagnosis; physical therapy, aqua therapy, injections, second through umpteenth opinions.  Each and every opinion concluded there was nothing to do which would improve my spine, and many suggestions that further surgery,  even therapy would cause greater damage and decline.  My  surgeon suggested a three plus level fusion "may" stabilize the area, yet he was very hesitant and honestly stated it could make things worse.  A year ago he suggested it may become a necessary discussion.

The above backstory truly bores me, and only serves the purpose to try to convey how it feels to have yesterday afternoon, with no obvious provocation, my lowerback to go downhill in a barrel.  It is still declining, the pain gathering severity and momentum, each hour today.  

Yesterday morning I was planning my bath for today; I had hoped to finally attend my son's brainbowl match Thursday afternoon.  I have not made any other match this season.  I cannot rightly address how excited I was to feel not only stable enough for Thursday, but confident I was healthy enough to go without significant backlash, ie. provoking another flareup.  I would have gone even knowing the likelihood of increased pain for the next handful of days.  I have learned and relearned adapting my life this way; prioritizing activity with a calendar in my mind, always choosing events in a window which leaves me room to recuperate from the tiny amounts of activity which ridiculously impact my pain.  Yet this past winter (continuing a lousy 2015) this system has fallen through the cracks.  I have been lucky to get out of the house once every three weeks, when before this past year my disability still allowed me to see a friend once a week at a meeting, take a son to an activity (maybe even stay and take him home).  The difference between getting out of the house once or twice a week, not every week, but most, the difference between that and the past year is incomprehensible even to myself.  In a word it is 'bedridden'.

It is so much more than my life being compressed between a rock and a hard place.  It is my husband's and sons'.  My elderly mom who I have seen less than a handful of times this year, when a few years ago I could occasionally take her to some of her doctor appointments.  Every activity I cannot assist or engage in falls to someone else, mostly my husband, but also my saintly brothers. My younger brother has become the best uncle in the entire history of the world, more than partly for helping us maneuver life with two active boys.  My older brother put his life on the back burner to move in with my elderly mom.  And I recline in the supine. The kids barely blink when I miss an activity, which bothers me more than obvious disappointment. Yet my thirteen year old boy who is so good and smart and friendly and funny often seethes a resentment at me which even my husband has begun to notice.  Why, he wonders.  I know.  I am the mom from "what's eating gilbert grape".  Yes, an exaggeration, yet with a grain of truth which seems to keep crystallizing, accumulating negativity my quiet son internalizes.  He hasn't even seen the movie! 

He nor his brother have seen any movie, tv series, lecture in school, paradigm which can give them a construct to make sense of my immobile life.  What he and I and everyone see are parapalegics racing, athletes facing excruciating physical therapy to later win a gold medal.  I cannot even hold my situation and all those heroes in the same thought without shaming myself.  Yet I have done the grueling physical therapy, more than once; it did more damage to my back and was discontinued by PT and Doctors each and every trial. 

My surgeon has consistently helped me get to the real root of these problems, but as he has said repeatedly over the past handful of years, there are not positive outcomes available at this stage; any surgeries are only to prevent further damage to the spinal cord itself, not to mention the many many nerves which travel up and down and exit into my extremities.

So the whole REVISION concept not only applies to an openness to a surgery consult (again), but to a long and hard fought acceptance of living with spine disability and severe daily pain. It has taken months but eventually I get 'ok' with things.  I learn my limitations, I learn to plan accordingly, I slowly slowly at a snail's pace learn to accept myself as a decent, even courageous human, doing my very best, instead of living in shame.  And then I begin declining again.  F---!

I have to say though I still have the confidence of spirit which had slipped through my fingers for many months this past year I am not at all feeling ok about this.  I want to heal, get better! I want to have time in front of me when and after I have learned to live and accept shitty daily pain and a life unexpected, (without most of the activities I had always associated with joy and adventure and how I would parent).  I want to have TIME to LIVE with what I have ACCEPTED! NOT TO GET WORSE!  I AM TIRED OF GOING FROM BAD TO WORSE!,  SCARED SHITLESS of what is in front of me!

So revision.  I studied, really studied Buddhism.  I understand life is nothing but change.  I understand the root of all unhappiness is suffering, and that some of this suffering is optional, especially if one can get rid of their expectations and accept life as it is each day.  Thank Goodness I studied Buddhism.  

Revision.  Today my boys are healthy, typically self-centered enough to not suffer my suffering too much.  Today my husband still loves and cares for me and maybe knows as much as he has ever known how very much I love him and how he is the most courageous person in this house. Tomorrow my son can stay after school for brain bowl and likely get a ride home, so no more or different transportation problems than any other week this year.  My brother has offered to help next week when we might really need some help with rides, not to mention a cheerleader in the crowd.  I have many meaningful things I can do here in my comfortable bed, without moving: creative writing, going through my creative writing book of all books, WONDERBOOK, drawing with my gorgeous birthday pencils.  Writing on this blog; learning the patience to 'save as draft', reread, and post tomorrow.  Revision.  

Revision does not come easily to me; I am a first draft sort of person.  It has taken much time and more regret for me to learn that anything I create gets better when I take the time to reread,  revise. When I put aside any attachment I have to the first draft and trust I will not lose what is golden, I will only have the chance to shine it up a bit.  Maybe I can trust this process with my life as I have slowly but surely learned with writing and art.  Maybe I can apply the concept to my parenting, because in all honesty I still judge myself most often with my original expectation of myself as an able bodied mother.  I am not.  Able hearted yes; body, not even in the same ball park.  Maybe I can revise this; at least learn to pause, center my heart. But in the meantime, today I can be glad for a life spirit which reminds me in the midst of increasing pain, revision can be ok.  Sometimes it can even make things better.  

I thank you from the bottom of my heart for reading this far; comments welcome.  Until tomorrow!!

 

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