Disability

Days of Awe. Mostly Without Feathers

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Hope is the thing with feathers. 

That perches in the soul

And sings the tune without the words

And never stops–at all

Until it is hunted, killed, braised, barbecued and eaten.

–Emily Dickinson

Ok.  Emily can only take credit for only part of this….

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Three years ago this week, I was given the honor of speaking in front of my congregation during the High Holidays on the topic of hope. When the rabbi approached me 4 months earlier and told me the topic, I was sure I could pull SOMETHING together. I was flattered and thankful for the opportunity.

And then I fully realized my task.

Asking for five minutes of my time to convey what hope was like for me…in what I assumed had to do with parenting a child with a disability, suddenly morphed into the equivalent of digging for research for a dissertation. I was not sure what hope meant at all, though in fairness, I am not sure I ever fully understood what hope was.

I stumbled on the video link a year afterward and found the old me. Hearing this stranger speaking from the heart was jarring, yet familiar.

This is the (abridged) transcript from that speech.

I’m here to share my story of hope.  My family and I have been congregants here for the last 10 years.  I have two versions of the story I was going to tell today and I’d like to thank the rabbi for allowing me the opportunity to go rogue and tell a third one instead. 

So, I came here this morning with these two versions of my story of hope, not knowing which one I was going to tell.   And mostly because of Rabbi’s sermon last night on vulnerability, I decided to take the two stories and meld them somewhere in the middle to share my story in hopes that if there are people sitting here who feel the same way, they can recognize they are not alone. 

You see…sometimes its not about being hopeful or hopeless. Sometimes there is this vague middle ground, if that exists, in hope. 

I have a child with Autism and he is a sweet, beautiful boy.   And he lives with Autism.  An Autism that impairs him from a life of independence. 

I’m part of a family who is also living with Autism.  An Autism that impair us from a life of independence. 

Showing vulnerability is not particularly an issue for us because we have to wear our vulnerability very publicly.  I’m also pretty visible in the community, and because of that I sometimes feel like I am the “Autism Representative”. 

So, Side A is extra-super truthy.  It shows a side of hope that’s hidden away. That only parents with children with significant disabilities can understand. We hide away. But by sharing this truth of hope, I learned that being vulnerable or weak sometimes has a detrimental effect on my child…both from an emotional standpoint and also from the standpoint of receiving services or receiving help.  It also sometimes leaves me with a compound disappointment chipping away at my worldview of hope in a world where no one can tell me the outcome of my beautiful boy’s life. 

Side B is the very pretty version and it’s the version you might expect to hear.  Its even capped off with a prayer.  But its inauthentic and frankly on Yom Kippur I couldn’t see standing up here knowing there are possibly families I will be doing a disservice by presenting you with the shiniest, most inauthentic version that I could possibly provide of hope.  So thank you, Rabbi for giving me the opportunity to come and share my story.  To spend months studying and contemplating hope in a way that I didn’t anticipate.  Hope is not optimism.  It is not about expectation.  I have realistic expectation for my child.

It is definitely not the thing with feathers. 

I came across a quote by the playwright Tony Kushner and he refers to hope as a moral obligation.  Through all of this, that made the most sense to me. 

Hope just is. 

It’s part of our human condition.  That quote captures the vulnerability of hope as well. 

Just a few days ago I heard an anecdote that captures the best possible way I can describe what its like to sometimes sit in the shame of feeling hopeless for a perfect child living in a very imperfect world with a very scary and nebulous future.  *It’s the story a man told about his grandfather’s wife dying.  After 65 years, she was his lifelong partner and his driver and he wasn’t sure what state he was going to find his grandfather in the first time he saw him after she died.

So he walks in and says, “Hi Grandpa—how are you?  How are you doing?”  And his grandfather says “Did you know that for $4 I can take a shuttle to anywhere in the city?”

 The grandson says, “That’s great grandpa.”

And the grandfather says, “So, went to the grocery store the other day with a list and I went to the lady at the counter and I said ‘Can you please help me with this list?  You see, my wife just relocated and her new address is heaven.’” 

The grandson sits back and laughs and says, “Grandpa, you always help me see the glass as half full.”

The grandfather sits back, looks at the grandson and says, “No….its a beautiful glass.”  

So, my moral obligation today was not to make you think that those of us who have children not following the path of expectation are hopeless.  And it was also not to come up here and make you believe we are full of hope.  Because it lies somewhere in the middle.  If you are a person who sometimes struggles with hope…please know you are not alone.  Thank you.

On this Kol Nidre, if you observe, may you reflect on what hope means to you in a finite and fragile world also full of love and optimism and come out the other side recognizing the glass.

*an excerpt from the film HUMAN by Yann Arthus-Bertrand (2015)

Edited and rewritten from 9/2016

 

 

The Tail Wagging the Dog: Tales of a Therapy Dog by a Bone Tired Mom

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Originally Published as The Tail Wagging the Dog 9/2015

Our dog is playful and fun and sweet and well behaved.

Until he is not.

And then, he is a bit of a sonofabitch.

And it always catches us off guard. 30 rounds of chasing the ball and joyfully bringing it back is often followed by a random and somewhat humiliating drive-by where he passes me up, runs 3 yards over and pees on the neighbor’s dog.

The ability to look nonchalant and nonplussed at the same time after your dog just defiled someone else’s beloved pet is something that only the parent of a child with Autism can pull off with Merylstreepworthy street cred.

These times I breathlessly call his name while chasing him in circles with what I believe to be an audible background soundtrack of the Benny Hill theme song, I will often submit myself to the idea of giving him back to the service dog agency. Wally came to us in a somewhat miraculous way. I relinquished the idea of a service dog for A2 years ago when I learned that an application was only the first step in a lengthy and costly fundraising and training endeavor–a cruel (but necessary)paradox for a middle class family supporting a child with a disability. So when I saw a post in a local Facebook mom’s group about this agency’s need for foster families for their breeding program it was a no-brainer. He had been through an advanced training program, came with the bright orange “do not touch” vest (that as it turns out that as a whole people just ignore) and most importantly, neither of my children reeled away from him in fear of barking or jumping. I could get used to having to drive out to the agency on a moments notice for his doggie duty or the fact that as an intact male he has a certain
“je ne sais quoi” that at times makes me feel uneasy explaining to groups of gathering and inquisitive elementary school kids.

While this dog is not trained specifically for my child, I had notions of things. Wonderful things.

He would have the gumption of a sheepherding dog and rustle A2 back off to bed at night allowing all of us a full nights sleep. He would have Lassie-like receptive and expressive language skills to alert us if A2 wandered off…or fell in a well….or were lost in a canyon. He would be A2’s best friend and would play ball, endure endless tummy rubs and kiss away tears. But alas, Wally is not trained to endure colossal meltdowns or high pitched screaming. A2 is obsessed with Wally’s nails needing trimmed and is also wholly mortified by his noisy and explicit grooming habits.

It often feels more like they are roommates who met out of necessity on Craigslist.

We wanted Wally to be for A2, but really, we wanted him to be for us. We needed extra eyes, extra sleep and fuller hearts knowing A2 had a friend. But its not looking like this part was meant to be.

The surprise twist here is that I did not anticipate that Wally is here for A1. We didn’t see that one coming at all.

I have watched A1 learn to use inflection in his voice to get him to follow a command or gain his attention. Wally’s presence is forcing A1 up out of his gaming chair to take him on walks or throw a ball or frisbee. He is quickly using perspective taking in a way I have never noticed in questions such as “Do you think Wally likes me? How can you tell?” or “Mom, I feel so bad. I wish I could give him some of my sandwich. Is this how you feel about me with my Celiac when other kids are eating gluten around me?”

My beautiful, slow to warm boy who would rather not touch or be touched is slowly but voluntarily petting, patting, feeding and cuddling Wally. Though it took me years to understand and accept that A1’s needs and worldview are just very different than mine, I have always known that forcing my motherly agenda would only reinforce his discomfort. And in a very rare moment–maybe the second time in his life–just last night while watching TV he scooted closer to me on the couch, leaned in, and rested his head on my shoulder.

So Wally, you are off the hook.

I will humble myself as I once again issue the world’s most awkward apology and assure the neighbors that we have no intentions of keeping their dog since you have clearly claimed him as your own just as long as you keep doing the stealthy, stellar job you were given to do here with us.

Autism Awareness Month. G is for Genetics (and Guessing)

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(originally posted April 2016)

G is for Genetics

I get asked often what I think caused my child’s Autism.  I believe it is completely counterproductive to even consider it until such a time that there is solid evidence.  They are here now. I love my kids fiercely. Our struggles would be the same whether or not we knew the ‘why’ part.

Infection in mother during pregnancy, vaccine accidents,  overweight in mother during pregnancy, gestational diabetes, inadequate iodine, diagnostic ultrasounds, prenatal stress, advanced paternal age at time of conception, pesticides both before and after gestation…I’ve read those all.  And they all have the same message:  “Dad….Mom (but more likely Mom)…you did something…IT’S YOUR FAULT.”   These theories are also part of what drives the Neurodiversity movement.  That is, that individual differences and biological diversity are a normal and natural part of evolution and Autism is no different, so it is not something to be treated. Behavioral disruption is misunderstood communication and all the comorbid conditions such as GI/bowel issues, intellectual impairments, mental health issues are just that. Something not related directly to Autism (a whole other can of worms within our community….).

Regardless of your belief system…there is only one thing we know for absolutely certain: NO ONE KNOWS WHAT CAUSES AUTISM.

To demonize parents who make decisions you would not necessarily make is also counterproductive. 

As parents we have an instinct to protect our children. When a parent watches the baby she knows slip away into a world of of silence or pain in front of her very eyes and no one can tell her why or really what to do..well….just take a moment to let that sink in regardless of your parenting/political/medical stance. I don’t have to agree, I just have to have empathy.

Here is what we do know.  There is a genetic component to Autism and it is likely paired with an environmental trigger.  Just like Type 2 Diabetes. You can’t develop this unless you have the genes.  You make it far less likely to get it if you get your butt up off the couch, exercise regularly and do not eat like a regular American.

We just are not 100% certain what that common genetic component or the environmental one in Autism.  I am not going to even pretend to know anything about genetics. The best I can do is tell you:

  1. Picture a city with 20,000 streets.
  2. Now lets figure out which streets have public mailboxes, one way traffic, standard poodles and single mothers living on them.
  3. Only some people who travel down those streets buy mandarin oranges (not regular naval) and we need to find those people.
  4. (But what about the naval orange buying people!? Those are a lot like mandarins!)

That is what it is like trying to figure out the common genetic factor and environmental trigger together. When I had a discussion about this with a pediatrician 12 years ago she said to me: “Autism is caused by a genetics. Period.  To consider anything else is ridiculous.”

I sat for a moment and thought about that.  I then I wondered out loud, “Can you tell me another genetic epidemic in history that unfolded like Autism?” Crickets. I’m a pretty moderate parent…however it is no wonder that many parents are suspect of the medical system with that kind of definitive statement when the bottom line is WE DON’T KNOW.

Does it mean my husband and I have Autism? No, not necessarily…but who knows?  If we do carry that genetic material and we combined it….we no more caused the autism than we “caused” their big gorgeous brown eyes or fact that they may need to wear glasses one day. Their eyes could have almost just as easily been blue instead all things considered.   And if environment did play a role and all the Fruity Pebbles I ate during pregnancy kicked those  genes into overdrive as the environmental trigger, there is not a damn thing I can do about that now.

I have never felt the “shame of blame”…and I don’t think any parent should.

We are wired to procreate and continue population.  We can just hope that this kind of information will one day find the link that allows children who suffer in silence or physical or emotional pain to grow to be independent and happy…just like all parents want their kids to do.

Autism Awareness Month. Day 3 2015. C is for Coping

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Day 3

In the most typical of situations sibling issues exist. For sibs of those with significant impairment, these kids are often the invisible bystanders. Their issues and needs sometimes take backseat to the immediacy and reality of their sibling with Autism needs. We ask them to deal with leaving fun events earlier than they would like, let embarrassing situations roll off their backs and stifle disappointment. The rate of having more than one child with neuro diversity is high. Sometimes, the less impaired child is asked to cope and step up in ways that would challenge even the most typical and mature of children.

Day 2 2016: B is for Behavior

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Autism Awareness Month A-Z original 2016
B is for Behavior

Running through Water

IMG_2885B is for Behavior

All behavior serves one of 4 functions.  To gain attention, to escape a situation, to gain access to something (usually tangible) or a response to an internal stimuli such as hunger, illness or exhaustion.  Seriously.  Just 4 reasons anyone does anything.  Think about it…you won’t come up with a 5th..I have tried.  Of course, if it were that simple we would all live in harmony.  However, there are some times it gets tricky.  For instance, when a behavior is triggered by something internal, it can be incredibly difficult to identify.  So if a child with autism likes to clap his hands near his ears is it because he likes the sound?  Or is it because he likes how his hands feel when he claps them together?  Or is it because it creates a little wind near his face which he likes?  To make matters even more…

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Day 1. A is for Aides

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Autism Awareness Month A-Z 2015
A is for Aides

Running through Water

Day 1

A is for Aides.

Though I can’t find pictures of all of them, they have all made a significant impact in our lives. Without them, A1 would not have made the gains in language, socialization and self care that he has. They have cleaned vomit out of their cars, do not ruffle at the idea of diaper changes, and have endured power struggles with grace and maturity. They are the extra eyes and hands in a world where we have none but need 20. They are young…and move on with their lives from us but we have always known that we sacrifice longevity for love and are happy that so many reach out to stay part of our village.

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Sometimes We Smile (or Sometimes We Cry:Part 2)

Jaycee Kemp1 Comment

I smiled 5 times today.

Three times in public and twice in private.

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I smiled within 30 seconds of arrival. My boy was flapping and waving with excitement to each bus. If given the opportunity, he would have run down the line to greet each one. Not the drivers, but the buses themselves as if they were fresh out of the stations of Sodor. Joyous in his innocence believing they each had their own personality. I saw him in a sea of adolescents, heads down, pushing past each other. Like the hustle and bustle of a subway train. Commuters with backpacks instead of briefcases. Shuffling, shuffling. Off to homework or tutors or practice for being the best at something since they were three. The commute to the next thing.  He sees me and gallops with an outstretched hand. I am greeted with a smile.  Always.

I smiled 5 times today. The instinct as a mother renders me helpless against noticing every single first-time. The same first times which beckon camcorders and cameras like the song of the siren and then whose passion slowly dissipates in the way the empty space between toothless grins are replaced by teeth yet too big for the spaces filled in. Our first times never end. Just more space between. My boy said his phone number out loud after years and years of practice. With no fanfare. He was just asked.

I smiled 5 times today. As I held up a wall, socially grinning and making deals with God. Chaperones milling about-clearing dishes, filling glasses- in a last attempt to seem as if they are helping while stealthy snaps from iPhones capture stealthy photos of their angels’ first dance. I am not a chaperone. They believe they are clipping gossamer wings for grounding by hiding in the shadows,  but their swans are molting on their own and would snap at outstretched fingers offering bread if given the opportunity. Mine laughs heartily and offers a thumbs-up when he sees a raised phone in his direction.

I smile and sometimes my child sees it happen and sometimes he does not. It doesn’t matter because he knows my humanness anyway, just like he would if his genetic dice were rolled differently. Today he did not see those drops of glistening joy and pride and I am no less embarrassed, no less ashamed, no less human for it either.  And neither is he. I have won the emotional lottery. And because of that, sometimes I smile.

My child is an enigma leaving us to figure out what HIS autism means, what HIS cognitive deficits mean, what HIS communication disorder means. And there are times none of that matters at all. He traverses along his own path, one others his age were expected to leave behind long ago by both parents and peers. One lined with The Wiggles and goodnight kisses and “marching parades”.  A path without expectation and never dissapating in private .  And because of that, sometimes, I smile.

My child’s joy is palpable and my heart levitates outside of my body watching him experience it. He can display the weight of his world, but then laugh at the same time if presented with the right silly face. I am never sure which emotion is primary for him but my own worldview tells me joy prevails because I could never do that. And because of that, sometimes I smile.

My boy wants to be part of the world. He navigates that weird and still uncharted middle school territory with explicit assistance. And when that help wanes, sometimes another child sees his light from across the room and without fanfare, crosses over, takes his hand and leads him to the dance floor to be part of the world. I am front row witness to the rare kindness and unconditional love we may have all forgotten before we went mad in this world.  All because my boy is just that worthy. And because of that, sometimes I smile.

My boy buoyantly flaps and hoots and repeats my name over and over and over in the space that should be the calm of my home. He also hops and beams and laughs when I walk away from my dishes, my reports, my vacuum when I cannot keep answering him from another room. He hops and throws his arms around my neck and kisses my forehead with a joy that is supposed to shed after our souls are deposited into these vessels given a name and a face. His love is like something from another place. And because of that, sometimes I smile.

These are the words of OUR life. He and I are both doing the parts we think we are supposed to do no matter how imperfectly executed. Because he is my best boy. Because I am only his mom.

And sometimes we smile.

Sometimes We Cry

Why we do the things we do. The trauma edition.

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(originally published 3/2016)

There is a large manila envelope still sealed sitting on my desk. No matter how much I stare at it, it doesn’t:

1. Spontaneously burst into flames

2. Disappear

3. Take care of itself.

It does not contain a subpoena, a warrant for my arrest or an eminent domain letter. It was not delivered certified mail or by official messenger. It was hand delivered by my 6th grader because the teacher very graciously contacted me ahead of time to ask me how I would like the prior written notice papers from the last IEP meeting delivered so I could sign and return them in a timely manner to the school. It has been sitting and judging me silently for over three months now as it sits untouched. I am reduced to a Pavlovian dog, except my bell is an envelope and my saliva is anxiety. A crippling-can’t-get-any-thing-else-done anxiety. And I rationally know there is likely nothing in that envelope that should really cause this kind of response. But that’s the thing with phobias or irrational fears and trauma response.

Yes…I said trauma response. 

Often times prior experience attaches itself to something innocuous and we then pair our previous response with a neutral stimuli and generalize it over time. Caller ID with the school prefix, email and now apparently manila envelopes have become the manifestation of years of battles, blockades and having my already fledgling parental competency called to the carpet.

For me….my defining moment were words uttered in a meeting 7 years in….but 3 years ago:  “Its not fair for one (A2) to get more just because of your parental advocacy”  (which was agreeable…but in a whole different way given we were discussing data collection that was reportedly correct, not collected by me…and concerning). 

It is silly I suppose if you are the one who stuffed the envelope and have no knowledge of my defining moment or my other, more academically impaired child. She certainly must be wondering about the warning likely issued by the elementary school about my hypervigilance, because the experience she is having is the opposite. A parent who is late to answer emails yet bizarrely will parse apart data collection in an IEP meeting….and be spot on why it was taken incorrectly must mess with her own schema of special needs parents.   I have learned to become a very hands-off parent in hopes of preserving my own life in the last year.  I have a double-decker weekly pill case that houses my capsules of life extending medications that would impress most of the AARP crowd.  Yet I am not yet even 50.  Years of sleep deprivation and external stress can only wear so long in a genetic cesspool.

So there it sits….but not without words. It screams to me every day over the din of my responsibilities. But I am strong and I can withstand long term, unfocused wailing.

So I leave you with 3 truths….

A. I am human.

B.  I love my child more than anything I could have ever imagined.

C.  I am preparing for an uncertain future in a time that I will no longer be here to advocate in a world that does not see my child as perfect as I do.

…and there are things that get in the way of of the co-existence of Notions A, B and C.  

Sorry about the envelope.

Sliding Doors. Looking Forward. Looking Back. (2016)

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**Originally posted New Year’s Day 2016. The last 2 years have been harbingers of change, both good and not so good both as special needs families and also as citizens of the US. Every few months, I come up for air to advocate, teach and discuss some uncomfortable truths only to slip quietly under the water again to peacefully watch my children’s lives pass before my eyes.  The future looks a bit bleak for those of us who can see retirement years on the horizon at the exact same time our disabled children “age out” of the system and also our parents are elderly enough to run out whatever savings they might have.  It is too hard to dance freely on the rails without worrying about the oncoming future barreling down like a freight train. Perspective is always an odd thing, especially in retrospect.  I wish all of you the freedom of worry and the ability for mindfulness in the coming year.

 A few weeks ago I was stuck in traffic.  Albeit Midwest traffic, but a standstill is a standstill.   A1 was incensed in the same way any curmudgeonly old man dealing with road lock might with a loud “C’Mon!!!” and a quivering fist in the air.  Except he is a 6th grader who was going to be late for religious school.  And he has never  personally navigated traffic of any kind.  I calmly explained to him that sometimes life is quirky.  Had we left 15 minutes earlier we might be part of the accident slowing everything down.  Or maybe by showing up 15 minutes late he might miss the most boring part of class.  For all we know inconvenience is a blessing in disguise.

For all we know.

Netflix is showing the movie Sliding Doors this month (and serendipitously also showing Serendipity, a way more palatable existential rom-com). Gwenneth Paltrow’s life splits off into parallel simultaneous existences based on minor differences in circumstance that alter the outcome of her immediate future.

Ultimately, three things are revealed:

#1  The event that changed everything was out of her control, seemingly extraneous and unnoticed by her

#2. Everything that happens happens in parallels whether she is part of it or not 

#3.  The outcome somehow is going to be the same regardless of the path.

I showed this movie to A1 to drive a concrete point home in the spirit of control and lack there of.  I have this funny thing with the idea of omnipotence and omniscience at the same time–a notion that seems cruel to those of us whose minds cannot conform in that manner no matter how much salvation sounds like a cozy deity-down comforter everyone else can snuggle in.  It means people like A1 and me are damned from the start because we just CAN’T …and it was planned it that way.  Like being forced as a child to hug and kiss a relative even when that relative knows it makes you uncomfortable to do so.  All in the name of making that relative feel warm and special.  Except what kind of weirdo feels all the good feels by making a child squish their body against theirs against their will?   That is why I show Netflix movies to my kid instead of reading parables.  I’d rather he believe that people just think he has bad taste in movies than that his life and choices are meaningless and filled with anxiety because his synapses don’t fire in a way that will ultimately please an all knowing being who made him that way.  We cannot help thinking about how our moments might be affecting an unknown future.

A2 operates differently.  These things do not need to be explained to him because he is only in the present.  I am happy because Daddy is here NOW.  I am not happy because I want Daddy here NOW.   NOW I am happy and screw Daddy because we are on our way to Chuck E. Cheeses.  If all is no worse than status quo, then optimism and hope are not necessary if you are only worried about right now.  It really isn’t until someone introduces you to unrealized expectations or well conditioned responses that you develop a sense of disappointment, dashed hopes and anxiety of an unknown future.

In recent years A2 has also taken to obsessively asking “what is the time?” and watching any clock either as if it is a piece of art to be analyzed and admired or else as if at any time it might fly off the wall and attack him like the starlings from The Birds.  His authenticity and ability for stopping and acknowledging the moment in the the moment, realizing there will be a new moment soon is a gift.

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As we stand on these tracks together I think about how Autism has robbed A2 of a regular childhood but probably not because he views it that way but because I do. There is a lot of track already behind him but there is much more ahead and I strain to see the horizon in case a train comes barreling down the tracks…because at some point there will be a train. And there is nothing I can do to stop that.  However, A2 only looks at the rails beneath his feet being careful not to trip and he only looks back to look at me.  If he were to hear the distant whistle, I am sure he would simply step off the track in that moment so he could watch the train go by.  Because my focus is on the horizons while stumbling down the rails, I run the risk of getting my foot stuck between the slats and then panicking thinking about the possibility of the oncoming engine. I am hoping that in 2016  I can continue learning from A2 as I struggle with the concept of mindfulness, especially when the moment seems bleak.  I hope for the ability to recognize each moment as unique and not as good or bad and that I can cherish the people and things that are important to me regardless of how time seems to be treating us in the moment.

I just need to remember to point to my wrist and ask “what is the time?” and know that it will be different soon.

The Days Its About Me: The Dirty Secret of Taking a Break

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(originally posted 10/2015)

Every few years, I go on a life sabbatical. Life sabbaticals work differently than educational sabbaticals mostly because they are not real. The notion that there are people who receive paid time to disappear somewhere to have a temporary life that doubles as a say-no-more way to avoid other social responsibility is magical. “No, no, I won’t be here to chair that research project, I will be away on sabbatical.”  versus  “Well…you’ll just have to have that IEP meeting for my kid without me, I’ll be on life sabbatical. Have your people call my people” doesn’t quite have the same heady ring to it and might necessitate a call to a mental health professional.

Unlike our neurotypical cohorts, many of us special needs parents are preparing for a forever life. Though we feverishly plan for it, there might not be a high school graduation send off party unless of course that party is sending off what few resource and assistance waivers our children got before they age out of the system. Diapers and tantrums are likely going to get larger. With the passage of time I am already finding myself getting smaller, more tired and more complacent in the frenetic searching, learning and advocating as certain realities set in. This is troubling.

Apathy is the ugly stepsister of passion. While passion will gladly cut off a chunk of heel to make her foot fit into that glass slipper in hopes of a prince, apathy will do so because its easier to make do than to shop for something to wear to the ball.

Endless details and inconveniences are just part of daily life in parenting regardless of circumstance. Its like the service charge for the privilege of parenthood and an occasional break from that is necessary for even the strongest of mommy constitutions. However, there are those of us who are so steeped in the present at all times where there are rarely idle moments not spent trouble shooting, even in the middle of night as we play musical beds and double-check doors. So I am mindful in the moment and I am mindful in that moment contemplated 30 years from now. The whispers of all the things that will come in between need to shut the hell up because I simply have no room at the inn left to consider those things.

As caregivers we are told to take care of ourselves, take time off, do what we love. This seems like cheap advice and when heeded I am reminded that ultimately not much is different on my return. The airline may have lost my tagged luggage of anxiety  while I was away, but it is surely taking a circular ride on the carousel at gate 6 when I arrive home. Time away takes me to places from my past. A time when existential angst was poetic, selfishness was better defined as a deep level of internal awareness and laziness was a sleep credit I could one day consider cashing in. The dichotomy for the surrendered love for your child and also wondering what it would be like if your heart didn’t bleed through your blouse every day is a quiet and unreasonable Sophie’s Choice. Sometimes its just easier not to be a tourist in your alternate universe.

In my life sabbatical, I am lucky to be able to spend a few days away from my forever life with soul companions from my past who live in sleepy mountain towns in New England. Their lives are so vastly removed and different from mine, yet anchor me to a world where I once lived. Lingering, casual vegan meals out where my fork is already unwrapped and folded into a crimson origami pocket on the table. Conversations are still tangential but are about politics, performance art and anecdotes of escapades in places like Nice and Machu Picchu. I meet new people—interesting people who talk about ideas and experience rather than people or events. Though these conversations have evolved over the years and now include points about how difficult camping at high altitudes can be with stiff morning joints and schlepping a c-pap machine, I am transported into a life of things that were once very important to me. Supportive friendships not sullied in the day-to-day. I can have amnesia and even forget that words such as “occupational therapist’ and ‘trash day’ and ‘bus bully’ ever slowly seeped into my repertoire of significant and meaningful topics of interest.

While recently on one of these life sabbaticals, serendipity appeared in a cameo.  In an unexpected and out of my control change in travel plans, I had the opportunity to attend a reading of a famous contemporary writer with cult-like status. His prolific works speak to anyone who has ever had a family or even just been alive despite the level of quirk and shock and neurosis woven through his stories. There is a distended familiarity in his writing and when he lends his voice to the story telling it feels like you were reading the original works in the wrong dialect of a foreign language you learned in high school. That epiphany of disappointment of what was missed in the original reading is quickly tempered by excitement to re-read in the voice and inflection intended.  Book signings are often part of these events and this writer is certain to ask each fan a question and attempt to tailor a sentiment attached to how he feels about them in the moment. And he can be honest. And brutal. And weird. And sometimes all. But regardless of what is written, it is enough to brandish your signed copy around to show everyone how he thinks you smell like coins. He is a story-teller and I believe he likes to stoke fires and create the story to be told even when he isn’t directly the voice.

While he briefly engaged my theater dates for the evening, I already had a question posited regarding his physical writing process. I thought if I asked him something preemptively I could kill our allotted time without ruining my self-esteem. “You wrote for such a long time pre-PC. Was it difficult to make the transition from handwriting your ideas to typing them out? ”  He answered and asked why I was asking. I guess I should have realized that was possible as a visitor in my sabbatical of the impossible.

“I used to write a long time ago. And then I didn’t. And now I am trying again but now there are computers and expectations. And its hard.”  I started reaching for my book he had not yet finished signing, but he continued.

“What do you write?” Oh crap. I looked at my anchor friend who was smiling at me and nodding and guessing he must not have seen the poor young woman ahead of us get eviscerated over her cheap perfume. “Its just a blog”. He reached back to put something on the floor behind him and continued.  “What do you write about?” He still wasn’t done signing my book otherwise I would have grabbed and ran…..the door was still ajar.

“My kids. There are…disabilities.”

“What kind of disabilities?” he asks without pause (door squeaks open a bit more).

I run down a quick and dirty list. He then paused and thoughtfully balanced the Sharpie between his thumb and index finger while resting his chin in the palm of his hand.  “Autism, yeah. My (distant relative) has (another relative) with autism. I fucking hate him. I HATE that kid so much.”

And there it was. Door now wide open. Mouths of theater dates wide open.

Hole in my heart wide open.

I ruffled.  “What is it you hate about him so much?”
“He doesn’t play with toys. They buy him toys but he doesn’t play them. He makes a mess of everything, destroys everything. Their whole world revolves around him and its ruined their life. I fucking hate him.”

In that moment I tried to decide if he was:
A).  a creative genius and there is nothing like making people uncomfortable or angry to get to hear some real truths.
B).  a complete asshole amusing himself and disguised as a creative genius and gets people to talk about him no matter what
C). Has absolutely no filter and has potentially is on the spectrum himself. Which would make sense if you have ever read any of his stories. This one is familiar to me. And also likely the thing he purportedly hates about said distant relative.

Regardless, I had to respond.

“Well, I don’t hate my child, but  there are times I hate autism. Sometimes it feels like it is ruining my life. I want to be done still getting poop under my nails but my 10-year-old is in diapers…. I guess I see it this way. No matter how hard so many days can be there is one thing that I am sure. It must be way, way harder for him, harder than it can ever be for me . And that makes me sad for sometimes feeling the way I do.”

We stared at each other for a time that was a few seconds longer than comfortable.

“ I don’t think I would have thought of that perspective” he said. And he then finished signing my book. As he handed it to me and I turned to leave he said “Wait. Whats the name of your blog?”

After I got over the “I’m really angry and I don’t care if this is a schtick for ideas or even if he has autism himself”  I grappled with “THIS FAMOUS WRITER MIGHT READ MY BLOG!” HE’S GOING TO HATE IT!” (#humblebrag)  I spat out Running Through Water.

“I like that. It really captures what that’s like doesn’t it?” he said as I wondered if I just made him more uncomfortable than he made me.  “Yes” I told him “both on the good days and the bad ones. Sometimes you are exhausted and get nowhere …..and sometimes it makes you weightless.”

I peeked at my book where he had put two fish stickers over the writing errors he had made to both cover up his mistake and also call great attention to the fact he made them in the first place.

“You make me want to live again” he wrote.

Frankly I don’t even know what it means, but my story is right here Mr. Writer and you got me to tell it.  My writing is far less than anything I would ever want it to be, but it lay dormant for 25 years. My muse comes in the form of a cherub faced innocent who makes my soul light brighter than I could ever imagine.  He doesn’t ever get a life sabbatical.  Life sabbatical is a sham.  I love my children  but I hate my fears for them. Time away makes me miss my old life but it also makes me know if not for my experiences now I would not know that there was something to miss.  And I suppose its ok to allow those ideas to coexist as past and present collide and am reminded of poetry from my old life that I just didn’t believe:

“When you are joyous, look deep into your heart and you shall find it is only that which has given you sorrow that is giving you joy.  When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight.” (Khalil Gibran)
Every day is an opportunity to live again with new perspectives our old selves could not have imagined.