Stronger than…

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Were I to wax metaphorical about her strength, to your ears it would sound like so much hyperbole.

No, I’m much too close.  I have borne witness to it, stood in its light and been seared.  I can’t be trusted to pace myself with any poetic flair, so just the facts…

Two pure souls brought into this world, and I see her instantly transform into a person that would pay any price to see them flourish.

Stronger than childbirth.

The devastation of learning her child will not flourish, not like other children.

Stronger than a metabolic diagnosis.

The endurance to cultivate the skills of speech and eating and walking and… when typical development is not promised.

Stronger than her child’s developmental challenges.

A pillar keeping the family upright while I repaired confidence in my professional career.

Strong for me when I am weak.

The utter lack of any hesitation to sacrifice flesh, ingest poison, absorb radiation, anything to be there for her family.

Stronger than cancer.

When faced with anxiety and depression she inevitably chooses the third option, to go forward.

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Afflict the comfortable to comfort the afflicted

With the diagnosis of PDH deficiency Cara is the victim of a staggeringly unlikely series of unfortunate events.  While it would be momentarily palliative to use this occasion to restate my own agnosticism that would be self centered and counterproductive. However, this event has still prompted me to think about what we as a family need to thrive going forward. We thankfully find ourselves in a wellspring of medical support and therapeutic interventions, but given there is no cure we’ll continue to need emotional reserves and spiritual support for the long road ahead.

Of course, pity and platitudes will not get us to where we need to go. I would even go as far to say that we don’t need friends on this journey insomuch as we need allies.  Conscripts in the fight to carve out a corner of the world where life need not be as difficult for Cara as it would otherwise be.  A place where folks have the courage to practice empathy. Simple actions like dropping the word “retarded” your vocabulary, holding the door for someone in a wheelchair, or joining the “Carawatts” our Energy for Life Walk team.

Innovations have a hard time flowing from environments where there is a culture of denial of the problem space.  You don’t have to bring solutions to the ongoing difficulties faced by those among us with atypical abilities. Having the conviction and awareness to not be part of the problem is enough.

Goals: A Toxicity Spectrum

By one definition, a goal is a promise to internalize a sense of failure until some future instantaneous moment of achievement… that may never come.  It is all too easy to focus on the achievement and overlook “the process” as the primary source of benefit from the practice of goal setting.  It is all too easy to lose sight of that component vector of true success and enrichment when monetary gain and social consequences are attached to an outcome, not the process.

How anyone could land a job at Facebook, a new house in the bay area and not find happiness is a long story…

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#SuckItAetna

git-log

Commit Count != Impact, but…

…suffice to say I had several things that kept me moving forward after the stark realization that the future required backtracking.  I have an irreplaceable, indomitable rock of a woman by my side that kept the ship running at full speed in my emotional absence.  I had wonderful colleagues at Facebook that afforded me every opportunity to grow and excel at the company.

In retrospect, the goals of “working at Facebook” and “living in ‘The Silicon Valley'” were point accomplishments disconnected with the momentum and trajectory of the past 10 years of my career.  For the first time in my life I had set a goal, achieved it, and not moved “forward”.  It was actually entertaining at first, watching from a distance as my arrogance was mercilessly obliterated in an open field.  Decidedly less so and frightening when that faceless predator rounded on my self confidence…

In any event, I am happy these days.  Getting back on track with full awareness of my abilities and limitations is inexplicably empowering.  However, the point of telling this story is not as a cautionary tale of navigating the technical job market.  It’s a point of reference on the toxicity spectrum.  Yes, the ubiquitous American pastime of setting goals and achieving dreams has downsides.  To a parent of a special needs child, this folksy sentiment is exceedingly venomous.  “Goals”, to a parent of a special needs child, have the capacity to be more destructive than something that makes you move to northern California for a year.  The consequences of wielding goals incorrectly in this context are devastating and the method of deriving any benefit from them at all is counter-intuitive.

It is the rare person that, when I tell them my daughter may always need a feeding tube, may never walk, or talk, does not fall into a bargaining-denial loop probing me for a happy ending.  “Please, could you be so kind as to excuse me from my budding feelings of sadness and helplessness?”  Inevitably, when the questions cease, they end up making a face that is half pity and half annoyance that I don’t know how to play the “Blind Hope and Reassurance” game.  However that’s when I get to feel pity for them as yet another person who sees life as a bag full accomplishments… akin to how small children measure the spoils of their Halloween trick-or-treating.

No, as the parent of a special needs child I have no use for disappointment or anxiety, dreams or hyperbolic positive thinking.  It’s a quantum super-position of emotional states where my wife and I are hell bent on the pursuit of eating, walking and talking while having absolutely zero attachment to the end game.  Every step in that direction is another fruit ripening on the tree.  If a certain branch stops growing and no more fruit comes we pause, step back, give thanks, and take pride in our beautiful tree.  She has earned the right to never feel “I am a disappointment to my parents.”

…and then we notice “hey, what’s this new little branch over here doing?”.

So, the old adage “Never lose sight of your goals” is completely backwards.  *Always* lose sight of your goals, be on the lookout for branches that bear more fruit, and pray that you never reach the end.

How to Not Be a Dick to the Special Needs Community

But first, a test to find out where you land on the spectrum.  “Please don’t use the r-word (retard, retarded, -tard suffix, etc), it’s hurtful.”  If your response to that request is “ok.” then go ahead and move on with your day.  Sure, you might gain an insight or two about the community by reading this article, but you are likely in no jeopardy of ever being perceived as a dick with such carte blanche respectfulness.  If your response is “why?”, that’s actually great.  You may find some salient points here to help you probe that question.  Though, if your response is “sigh, why! …just another example of political correctness run amok!” then, sadly, there is a high likelihood that you are a hopelessly irredeemable asshole.  This article may be a waste of time for you.  The curious thing about people that espouse the PC-run-amok position is that they wear their ignorance and lack of basic human empathy like a badge of honor.  This loud proclamation is so very helpful, it makes PC-detractors easy to spot in a crowd so I can disassociate, de-friend, and distance myself from them and my family.  Please leave.

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Ok, now that we have the right audience, let’s proceed.

Step One: Please don’t use the r-word, it’s hurtful, just find another word

Truth be told in 2004 when the Black Eyed Peas rephrased their song from “Let’s get retarded” to “Let’s get it started” my honest initial reaction was disappointment.  I’m ashamed that it took 6 more years and someone handing me a membership card to the community that finds the r-word offensive for me to finally see how fucked up that reaction was and to see how insidious and poisonous that word has become.  There’s no better article I’ve seen than Catherine’s on the R-word for illustrating why that word feels like acid poured directly on the heart.  I can only hope that if a friend had sat me down and explained it to me I would have made the change earlier, hence this article for you.

Now if you read the above and still say, “but ‘retard’ just means ‘slow’, I do not mean any offense by its use, it’s just english”.  Sure, I get it, you’re straining to rationalize your word choice because you’d rather feel righteous indignation than guilt.  Just be aware of the massive power imbalance of you being able to choose another word and the special needs community’s modest request for respect while they deal with an affliction that has no cure.  Please default to being respectful when it costs you nothing lest you be perceived as a dick.

Step Two: Accept the fact that you too are disabled

Don’t believe me?  Then please proceed with me to the dance floor where we will perform a Cha Cha routine.  I imagine many of you saying “Oh, I’d never do that I would look totally retar… …foolish”.  By the way, thank you for catching yourself.  Yes, it’s a simple fact that we many times avoid attempting tasks that make us look foolish.  Now imagine that the tasks that revealed your disability were the ones we take for granted for living life.  Beautifully complicated tasks like maintaining balance while sitting and motor planning to grasp an object.  Truth is, those of us without neurological impairment are granted the gift of not having to consciously hold our frame and balance while sitting.  “Retarded” is deprecated as a medical term precisely because it is actively ignorant of reality.  Someone with neurological impairment appears “slow” attempting this simple task, but what that term denigrates is the beautiful capacity of neuroplasticity and the feat of compensation taking place to actively maintain body stability, route around the brain injury, and find another way to do what we all take for granted.  Be thankful for the privilege of avoiding tasks that make you appear disabled.  When you do attempt something where you feel foolish I hope that people offer you encouragement and understanding as you struggle, those that don’t you can rightly call a dick.

Step Three: Maintain a healthy skepticism of your ability to classify people as inside or outside of the special needs community.

Some families struggle for years to find out what is afflicting them only to lay a child to rest before being granted a label.  Others are lucky to get the label and, similar to how you and I actively hide our own disabilities, do their best to keep their disability private.  Sometimes they do such an effective job of pushing through the pain that they are rewarded with nasty-grams from people that believe they are committing fraud when they consume disability resources.  Rest assured that borrowing your grandmother’s disabled placard or renting disabled children to cut in line at Disneyland most definitely makes you a dick.  However, the only time I would trust your judgement to identify such abuse is if you witness Lebron James slipping into the last disabled parking space while Stephen Hawking is forced to circle around.  Outside of that I cringe at the injustice of you clumsily and literally adding insult to injury.

This cuts even deeper for parents of children with behavioral disabilities.  Sans a wheelchair people tend to turn off their compassion for disabled persons.  It’s sad and perverse that I occasionally feel grateful that my daughter has an obvious disability compared to the struggle of parents with children on the spectrum of behavioral disorders.  Certainly, for disabled and unaffected families alike, there is nothing more annoying than unwanted parenting advice.  Shocking, yes, well meaning *advice* can be unwanted and uncomfortable.  With that in mind I can only imagine how painful it is for a parent when that “advice” becomes admonishment and blame.  More obstacles lobbed in the path of a family struggling for and mourning a “normal” life.  Please don’t be a dick to these warriors.

Our lives, yours and mine, special needs or not, are already hard.  Just try your best to not make things worse for someone else.  Apologize if you make a mistake.  Be comfortable feeling uncomfortable that you don’t fully understand what special needs folks are going through.  Try your best to be respectful and you will easily be considered part of the solution.

the good in bye

it is hard.
but not as an obstacle
it is fundamental to the way forward.

we stumbled off a cliff
…and poured all deliberate energy into a fight against gravity
minor course corrections to a fall, until we were caught.

caught by professionals
who despite their best efforts could easily be convicted of loving her
caught by neighbors who embraced and engaged us
when they could have been forgiven for pitying us from a distance
leading us by example
rounding the sharp edges
being silly

collected co-travelers
among those ready to collapse to liquid when she takes her first step
they prepaired us for this
restored us to the ranks of those able to accept life’s opportunities

this is wonderfully painful.
not the pain of loss, or fear of what’s next
no, it is the pain of a coiled spring or drawn arrow
flight capacity granted by this love and care
where we once struggled to keep walking

goodbye is a gift to speak what goes without saying

your faith is beautiful

joyful selflessness, an able-hand to lift one that may never know that ability.
sacrifice ignorant of reciprocity.
humility to leave what little remains to a higher power…

“my prayers are with you”

…from you, those words soak my hands with the agony in which they were steeped.
i find my self able to sip from the strength you draw from your faith.

but from you,
oh from you the fear and insincerity crowds my nose and piques my cynicism.
used as an exit when you realize you’ve crossed the train tracks
and now clamor for the safety of your unaffected life.

the prayer to genie to add “never feel his pain” to the wish list after “pony”

you incite the lonesome pleasure of my absent faith:

free from the obligation to rationalize Cara’s suffering with a cosmic benefactor.

comforted by the hope that rejecting your prayers
and the mystery of your god’s plan
pries at least a finger from that farce that you cling to, and true faith you desecrate.

She Is Not Yours

She is not yours

insidious intimation intra lines of devastation

a statement left unspoken wrapped in clinical verbosity

“your daughter’s brain is injured”

{and I fear she is not yours}

every breath another question, until mind and breath succumbed…

as if interrogation could rescue us from our strangling new reality

all of them asked and answered,

save one a depth below our despair … she is not yours??

we sat betrayed and battered and mourned a promised life

Natalie, breakfast, diaper, bottles, chores, work…

New doctors new questions

and then we quibble about the name:

“well, we don’t want to call it that

{on the chance she is not yours}.”

we learn that fear cuts through a professional’s mask

and now we know the face

“she is not yours”

it spins and wrythes against the weakening restraints of denial

struggles, until it is silenced

silenced by the smiles and laughter of sisters

dismissed as irrelevant

fearless is their example

…a fearless life…

we spend our courage to embrace that joy

and as we smile and laugh and hug and dance we say no.

no, fear, she is not yours.

she is ours

and she is loved.