blue sky shining over

Month: January, 2015

his voice

how can i describe his voice to you? almost inhuman, its slightly husky, high-pitched tone mutters or screeches, never in between. his babble is complex, foreign. his accent is from no land and from every land at the same time. his voice is unmistakeably his; i could pick it out in a roomful of toddlers, even when i can’t distinguish a single word.

his voice is precious.
his voice is unique.
his voice is crippled.

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how can i describe what it is like to watch him as he gazes intently at a toddler his own age, and she is speaking? the sentences form themselves, whole and beautiful, from the thoughts in his bright little mind. as they travel, though, they fragment into sounds and expressions, unintelligible babbles. his eyes darken, his face falls … my heart breaks.

how can i describe what it is like to listen as someone asks, over and over, “ash, can you say…?” his body sags as he shakes his head. he cannot say it. he knows he cannot say it.

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how can i describe what it is like to watch his interaction with his world become increasingly withdrawn, as the thoughts that flit across his intelligent face are far to complex for his broken voice? my little introvert, my sensitive boy, with the huge emotions and the huge heart. the child who is always the first to hear a dog bark, to see a squirrel twitch, to see pain in the eyes of another. his world is a place of great beauty and great feeling, but it is locked within him, expressed through a few signs, grunts, and unintelligible word approximations.

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how can i describe what it is like to hear this child, with his voice and his private world, utter, unmistakeably, “mama?” he spoke his first “mama” at almost 2, and hasn’t stopped saying it since then. he says, “dada,” too. many times every day he repeats them, “mama, dada, mama, dada” … we jokingly refer to it as roll call. he speaks, “mama” in a voice of fear, a voice of joy, a voice of wonder. he has a whole language of “mama’s,” of inflections and expressions, packed into two little syllables.

how can i describe what it was like this week when my little boy, the boy who barely speaks, told his first joke? the joke was “dada.” (you kind of had to be there.)

he now repeats it, giggling at his wit.

“ash, what does a train say?”
“dada!”
“NO, silly!”
[tickle]
[repeat]

how can i describe the way the pit of my stomach felt when his speech therapist camille pulled out a tablet and started playing games with the speech replacement software, and said, “you should consider getting this app,” and i thought she was hinting that my child would never speak. i stuttered … “will .. he need it … long term?” her face lighted with understanding, and she said no, oh no, he won’t need it forever, it’s just a game, and i exhaled with relief.

how can i describe what it is like to drive him to speech therapy every week, to see his face light up when he sees camille, and to feel the reassurance of her security. she believes in him. she knows how to help him. she knows he will speak. and when my hope flags and my heart hurts, i hear her voice in my head.

“he’s so cute it makes my eyes water.”

she believes in him. and so do we.

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operation chill-the-heck-out-about-flying | week 1

aviophobia
[ey-vee-uh-foh-bee-uh, av-ee-]
1. fear of flying in an airplane or other aircraft.

the reasons i have aviophobia are convoluted, hard to understand, and difficult to explain. it has something to do with statistics and sky’s death and flying to get ash, and the randomness of post-traumatic stress and anxiety. i’ve already written about five introductions to this post, struggling to encapsulate a consuming terror into a few paragraphs of justification and backstory.

and i give up. let’s just jump in the middle of this story, to the part right now in which i’m scared to death of flying.

but i have an opportunity, a beautiful opportunity to make a dream come true. and for this opportunity, i have to fly.

i have to get in a tiny metal capsule with strangers, and that capsule is going to leave the ground and somehow magically flout gravity until it doesn’t anymore, and hopefully we all walk away from it. and i have to do this more than once!

my fingers are sweating on the keyboard.

anyway …

and so, on a sunny late afternoon, i commenced operation chill-the-heck-out-about-flying. we piled the babies into the car, and set off to find planes to watch. desensitization, for the win.

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i brought my camera to document this first step in my 10ish week journey from freaked out to flying, partly because i process through photography, and also because documenting the story of overcoming a phobia seems like an interesting photojournalistic effort.

after going to several locations, all of which cowered under looming “no parking” signs that threatened fines significantly higher than our “anxiety and phobias” budget category, we ended up on the top floor of the parking structure at pdx with two children who needed to get out and run.

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they ran, and i watched planes. and took pictures.

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being in photographer mode was a lot less nervewracking than watching the planes, so i decided to have fun with the winter sunset light and take pictures … while i was supposed to be watching planes … with kids who just wanted to run … yeah.

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i got one decent shot. one.

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and then, at some point, i realized that i was using my camera and photographer mode as a shield between myself and the discomfort of the anxiety. with a camera between me and the planes, it was easy to distance, to objectify, to disengage. darn sneaky phobia will hide behind anything if given the chance.

so i took a deep breath, handed the camera off to joel, and commenced to chase the little runners around instead of watching planes. darn sneaky phobia.

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in these pictures, the planes are mostly behind me. i am watching planes out of the back of my head.

so i learned a few things this time.

i learned that fear likes to hide. behind a camera, behind running children, behind a husband, behind a beautiful sunset. the fear will hide if i give it a chance. i have to face it head on, and keep it in my headlights, shining brightly on it as it slowly (hopefully) evaporates.

i learned that even just watching planes with the knowledge that i am going to get on one makes my stomach flop. i really didn’t think i was that far gone in the land of aviophobia … but i guess i am. i suppose it’s best to know where i’m starting from.

i learned that confronting fear can happen all at once, but it doesn’t always have to. confronting fear can happen by baby steps, one toddle at a time. i took my first little step toward that transcontinental flight in a few months, and it felt tiny and insignificant. but that’s ok. i don’t have to be the hare; the tortoise finished the race, too.

i learned that, just as my daughter will be by my side on that dreamed-of journey, my family is by my side on this journey of conquering fear. and i believe that, with their support and the wind at my back,

i can fly.

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broken

it needs to hit you with a thud, lani

my therapist’s body was taught, and her eyes were serious.

you have a chronic, progressive disorder. progressive, meaning that without medication, it will almost definitely get worse

~~~~

recently, a friend asked what i would consider my biggest non-relational accomplishment. i answered,

finally getting to a point where i can accomplish things

~~~~

“you seem exhausted.”

i am

“why are you so tired?”

i had to come off a stimulant medication that i had become dependant on

“a stimulant! why are you on a stimulant – do you mind me asking?”

um, i haven’t talked about it much, but
i’m actually on a number of medications, because
you see
i have
i mean, i struggle with
i
i have mental health diagnoses.

~~~~

post-robin williams, it seems almost passé to come out of the mental illness closet. many of us are inoculated against the shock of learning that someone we look up to, someone we know, someone we love has a broken brain. there are so many of us. despite this cultural trend toward acceptance, though, the closet looms large and inescapable for the many who are still incarcerated in secrecy.

and the worst part? many sufferers can’t muster the strength to leave the closet of secrets until their mental illness is in remission.

i couldn’t.

~~~~

i have always been afraid.

when i was born, the first words out of the doctor’s mouth were not, “it’s a girl.” no, that doctor in a little city in eastern washington remarked, “my, that child can scream.” after a few months or years, the outer scream turned inward. as a child i was terrified, intense, either up or down. there was no middle ground for my moods, thoughts, or energy.

i finished high school at 13, was working full time at 15, started college at 16, got married at 17, and at 18, i crashed. years of a secret, deep depression followed as i floundered, trying to make sense of a life that grew less precocious every year.

i worked as an office manager. i taught piano lessons. i music directed children’s theater. i started a photography business.

i cried almost every day. i struggled to accomplish even the smallest task. i hid. i faked. i begged god to fix me, to reach me, to change me. i engaged in depressive behaviors that led to a downward cycle of worthlessness. my life, like the lives of so many who suffer in the dark, was a paradox. i simultaneously loved and hated life, and my greatest hope was that i could someday escape the hopelessness.

i could write a book right here, a book of the things i did in the dark, the things i said in the dark, my fight with the dark, the ways i gave in to the dark. it would be a long, repetitive, depressing book. if you have ever suffered in the dark, substitute your book here, and we’ll just skip that part.

this went on for almost ten years.

~~~~

i follow my 7-month-pregnant belly into anna’s* office and huddle on the couch. my fingers, pale and shaking from anemia, twist into nervous pretzels.

tell me why you’re here.

i hand her a note from my husband, a note that explains how my struggle with depression has hit rock bottom. i’m not functioning, barely making an effort to care for myself, my fetus, and my 9 month old son. my photography business has crashed and burned, my pregnancy is rife with complications, and my friends are unaware because i cannot reach out. his note explains that he is worried that i will hurt myself. “hurt myself” is what he says instead of what he really means, because he is afraid.

anna’s eyes are the color of warm, her hair loose and wavy. her face, unmarred by any trace of makeup, glows with an inner light.
she is softness.
she is peace.
she is hope.

i remember nothing else from this first session with my therapist. i was numb.

~~~~

that was the beginning of a journey i had given up, a journey of hope.

this journey of hope began with a step forward, a tiny, incremental step that i don’t even remember taking.

and then another. and then another. i take 3 steps forward and 2 steps back, but i can survive the steps back because that 3rd step is lifechanging. new levels of stability, of mental acuity and emotional regulation open up; suddenly i can fly …

i make plans and execute them. i care for children and get housework done. at the same time! i remember the story i heard on the radio this morning. i am able to track with a spoken conversation and express myself verbally without losing my train of thought. i read whole books!

perhaps even more significant are the emotional changes. i can be alone with my thoughts without having dissociative episodes and panic attacks. i no longer cry every day. and that voice, that awful voice with its abusive script on constant repeat, that voice no longer has free reign in my mind. it is not gone, but it is shackled, contextualized, bound within a dark corner of my mind that no medication will ever touch … but i don’t visit very often.

why did this change happen?

it wasn’t a great effort of will. it wasn’t because i finally got my act together. it wasn’t because i finally lost those last ten pounds. it wasn’t because i abused my mind into compliance. it wasn’t a result of a great spiritual awakening, extra bible reading, or finding the right prayer.

no, at 27 years old my life was turned upside-down by hope because

i took a pill.

~~~~

this journey of hope that i’m on is wondrous … but apparently hope can have unfortunate side effects. it has also been a journey of medication trials, therapy, and diagnoses.

what are my diagnoses?

i don’t mind sharing them; i am not ashamed. i have bipolar ii and adhd. people with bipolar ii are on the spectrum between bipolar i and major depressive disorder, and often spend a significant amount of time in major depression, cycling between that and agitation, anxiety, and hypomania. women with adhd often flounder through school and work, unable to sustain ideas, remember, organize, multitask, or plan. both are treatable with medication and lifestyle changes.

i have trialed more medications than i can count on my fingers. anna calls this “failing” medications. i’ve failed a lot of medications due to inefficacy and, mostly, side effects. the side effects have been awful: crawling skin and weight gain and whacked up blood levels and headaches and exhaustion and shaking and irritability and exacerbation of the very mental health symptoms we’re trying to treat. this is not an exhaustive list.

despite this, some have helped. that 3rd step forward comes infrequently but unmistakably. i am currently taking 5 different medications, and am about to start a new one. a big scary high-powered drug that requires frequent blood tests and meticulous lifestyle management.

which brings me to my most recent visit with anna.

~~~~

it needs to hit you with a thud, lani. you have a chronic, progressive disorder. progressive, meaning that without medication, it will almost definitely get worse.

seconds earlier, i had asked for help with motivation to take care of myself. with two little kids and a house to run, it is often hard to muster the time and willpower for rest, exercise, and other forms of self care, not to mention the level of self-management required for my new medication. “help me change my mindset,” i asked, “i need a reminder of why i need to do these things.”

anna continued.

i’m not trying to shame you or make you feel bad. but we haven’t really talked about this part of your diagnosis. your life needs to change, to adapt around this. you have a serious condition that requires management.

and somehow, it did.

hit me with a thud, that is.

i did not feel shame. i did not feel defective. i did not feel worthless. but in that moment, i felt very, very sick.

you have a chronic, relapsing-remitting, progressive disorder.

i am sick. my brain is sick. my brain is broken. my brain is profoundly, incurably broken.

thud.

but i have never felt so free.

because, (and here is the secret that has allowed me to share my secret)

learning in my gut, not just my head, that i cannot overcome mental illness releases me from the from the constant struggle to overcome mental illness. i am released of culpability for this disorder, absolved of blame for my sickness. this is the grace in the diagnosis, the grace of the pills.

because we who suffer in the dark, we know that there is something deeply wrong. and we assume that it is our character. inside the closet, the script plays in stereo:

i am worthless.
i am stupid.
i am lazy.
i am fill-in-yours-here.

over and over and over. for 10 years. or 20 years, or a lifetime.

diagnosis and treatment turns this script on its head, because it acknowledges that something is wrong, but it unties the darkness from our value, our humanity.

i am broken, not worthless.
i am sick, not stupid.
i am stuck, not lazy.

there is a deep freedom in being broken. there is grace in being broken. there is hope for being broken. because no one, not even me, not even you, is broken beyond worth. as megan tietz writes in her post the depressed christian, “the dark night is no measure of your soul.”

~~~~

my journey is unfinished. life has changed, but it could change back. i have good days and bad days, good seasons and bad seasons, good moments and bad moments. and really, it’s so much more complicated than just “good and bad.” i have hypomanic days and days i can’t focus and productive days and days when i cry and days of peace and days i feel afraid. i’m currently working through a phobia of flying. (don’t judge.)

but here, i just handed you my closet. i handed you my story of darkness, in the hope that it brings a little bit of light into your life.

may we all move toward the light. and may we do it together, one closet door at a time.

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~~~~

*not her real name.

the dream

this morning ash sat in his white high chair and aida sat in her brown high chair, and i made their breakfast. in the background the eggs sizzled and the teapot hissed, and i told them the following:

ashal, aida, today is a very special day.

today is called martin luther king junior day. martin luther king junior was a man who lived about 50 years ago. he said that black people like ash and white people like aida should be treated equally.

back then, black people were treated poorly. black and white people were kept apart.

if you lived back then, ash and aida, you wouldn’t have been brother and sister. but martin luther king junior said that black people and white people should be brothers and sisters.

babies, there is still so much work to do, but sometimes we have to stop and celebrate how much work has already been done. today, we get to do that.

they said “ba-da,” and ate their breakfast. ash signed for water and drank thirstily when i handed it to him. when he was done, he passed it to his sister, and she drank too.

happy mlk day, friends.

remember, this was once a dream.

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voices from the valley: a collage

the valley of the shadow of death is anything but silent.  a cacophony of voices weave a terrifying symphony of truth and lies, doubt and faith, condolence and condescension. the lonely silent one exists in a clamor perhaps more suffocating than the cliffs of the valley itself.

but occasionally, a voice whispers, and its very humility sets it apart from the rest. these are the voices that lead us out, from the valley of death to the mountain of peace and justice.

i had a valley.

today, i want share with you the soundtrack of my journey through it, from terrified church-goer to armchair activist to gospel-inspired justice caller. i originally compiled these quotes in the aftermath of the ferguson ruling, as i searched within my heart for the root of my strong emotional reaction to this story. i found three essential elements that could not be told separately: the valley of darkness, the emergence into a faith that has room for doubt, and the call to empathetic activism.

this series of quotes tells that story through collage; it is my story, in the voices of others.

clutching

Sunrise Chapel

At its most basic, the allure of fundamentalism, whether religious or ideological, liberal or conservative, is that it provides an appealing order to things that are actually disorderly.
~ Peter Mountford

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“I am convinced that what drives most people away from Christianity is not the cost of discipleship but rather the cost of false fundamentals. False fundamentals make it impossible for faith to adapt to change. The longer the list of requirements and contingencies and prerequisites, the more vulnerable faith becomes to shifting environments and the more likely it is to fade slowly into extinction. When the gospel gets all entangled with extras, dangerous ultimatums threaten to take it down with them. The yoke gets too heavy and we stumble beneath it.”
Rachel Held Evans

 “My friend Adele describes fundamentalism as holding so tightly to your beliefs that your fingernails leave imprints on the palm of your hand… I think she’s right. I was a fundamentalist not because of the beliefs I held but because of how I held them: with a death grip. It would take God himself to finally pry them out of my hands.” 
Rachel Held Evans

darkness

“The world changes too fast. You take your eyes off something that’s always been there, and the next minute it’s just a memory.” 
Michel Faber

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“If Christ spent an anguished night in prayer, if He burst out from the Cross, ‘My God, my God, why have you forsaken me?’ then surely we are also permitted doubt.”
~ Yann Martel

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“For so many years I lived in constant terror of myself.
Doubt had married my fear and moved into my mind,
where it built castles and ruled kingdoms and reigned over me,
bowing my will to its whispers until
I was little more than an acquiescing peon,
too terrified to disobey,
too terrified to disagree.
I had been shackled,
a prisoner in my own mind.”

~ Tahereh Mafi

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“…new life starts in the dark. Whether it is a seed in the ground, a baby in the womb, or Jesus in the tomb, it starts in the dark.”
Barbara Brown Taylor

emerging

“…she taught me how to ride the Dragon Coaster and what to do when you’re flung into the mouth of whatever it is you think will kill you. Throw up your arms and laugh until you come out the other side.”
Ian Morgan Cron

I-have-learned-things-in

“Miss Annie, is it wrong for me to believe it was Jesus who asked my forgiveness?” I asked her.

She frowned and shook her head, “Lord, what do they teach you at that school?” she said. Then she faced me head-on. “Did God humble himself by becoming a man?” she asked, every word spoken more loudly than the one before.

“Yes, ma’am,” I said. I’d never used the word ma’am before, but it seemed an excellent time to start.

“Did he humble himself by dying on the cross to show us how much he loved us? she asked, waving her spatula at me. 

My eyes widened and I nodded, yes.

Miss Annie’s body relaxed, and she put her hand on her hip. “So why wouldn’t Jesus humble himself and tell a boy he was sorry for letting him down if he knew it would heal his heart?” she asked.

“But if Jesus is perfect–“

Miss Annie ambled the five or six feet that separated us and took my hand. “Son,” she said, rubbing my knuckles with her thumb, “love always stoops.” 
Ian Morgan Cron

finding

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“And your doubt can become a good quality if you train it. It must become knowing, it must become criticism. Ask it, whenever it wants to spoil something for you, why something is ugly, demand proofs from it, test it, and you will find it perhaps bewildered and embarrassed, perhaps also protesting. But don’t give in, insist on arguments, and act in this way, attentive and persistent, every single time, and the day will come when, instead of being a destroyer, it will become one of your best workers–perhaps the most intelligent of all the ones that are building your life.”
~ Rainer Maria Rilke

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becoming

“Being a Christian, it seemed, isn’t about agreeing to a certain way. It is about embodying a certain way. It is about living as an incarnation of Jesus, as Jesus lived as an incarnation of God.”
Rachel Held Evans

“For St. Paul, the core of the Gospel was about reconciliation – God and sinner, Jew and Greek, male and female, slave and free (Gal. 3:28).  This was the necessary implication of justification by faith alone.  Justification was never simply a get out of jail free card, an individualistic guilt-appeasement balm.  Justification opens the gates to freedom, to reconciliation, to wholeness inside and out.  It puts into contact with the outsider, the person who’ll make us feel uncomfortable, the different – a sexual, racial, and geographic outsider (Acts 8), for example.  It puts us into contact these cut-off parts of ourselves.  It levels the playing field; the powerful are brought down and the powerless are brought up.  And the Gospel invitation, particularly for those of us with privilege, is to go down willingly, to be crucified with Christ, to be the impoverished, broken, brought to the end of ourselves, dying like that grain of wheat that must fall to the ground to bear fruit.  All for the sake of the other. […]

Jesus crosses the barriers.  His Gospel is not domesticated, it is invasive, courageous, pursuing.  God became man, crossing the ultimate barrier, crossing into death, going down, going further than I’d ever want to go.  But we need to, now, with courage.”
~ Chuck Degroat
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“Jesus doesn’t call us into a life of ascent where we move further and further away from the things of this world. Rather, I believe he calls us to a life of descent, of downward mobility, where we move down into the trenches of real life, real pain, real hope in our lives and in the lives of others.”

“We must break down the walls that separate people, which create an “us vs. them” mentality, and actively resist the upward pull of comfort and away from pain.”

“The world is not desperate for new knowledge; there’s plenty of that to last many lifetimes. The world is aching for authentic people willing to be Jesus’ hands, feet, eyes, and heart and boldly go where he goes – to those on the margins of life and faith.”
~ Kathy Escobar

activating

James-Baldwin-Quote

“It was in my college Liberation Theology class back in 1990 that I first discovered different ‘Gospel’ perspectives – perspectives from those steeped in death and persecution, suffering and scarcity.  […]  It may have been the first ‘aha’ moment for me, the first realization that the Gospel wasn’t just about getting saved and voting pro-life.”
~ Chuck Degroat

“Love is about justice, not sentimentality. Standing on the side of love is choosing to stand with all those excluded, marginalized, and oppressed – without succumbing to hate for the oppressor. Nothing could be harder – or more essential for our common flourishing.”
~ Serene Jones

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“Sometimes I wonder how we get so up in arms and culturally empathetic with people in other countries. But can’t do that in our own backyard. We rushed to Haiti. We Adopt in Asia. We empathize with Africa. But struggle to humanize our struggles here in the states. Some people are responding out of hurt and are met with smug responses. If I tell you my brother got killed in a gang war, would you tell me “That’s what he gets! Shouldn’t be gang banging!” Of course not.

As a Christian I see a Jesus empathize with the MOST undeserving people ever. He offers a thief on the cross a home in Paradise. He dies for a rioting mob of angry killers. He looks upon a sinful world with compassion. And here we stand saying we believe that and all the while unfazed at the pain of a community. Offering statements that don’t comfort but only add salt to a wound we refuse to see.”
~Lecrae

“sky’s death was no less unjust than that of babies dying of malnutrition in 3rd world countries. his death was wrong. his death was senseless. it was unnecessary. it shouldn’t have happened. there’s no ranking in injustice. either the scale is evenly balanced, or it is tipped to one side. just as pain cannot be ranked and compared, injustice cannot be ranked and compared. we and he are victims of the same injustice that has caused every human rights violation, natural disaster, and betrayal in history.

his life released so much passion, energy, and drive in my heart. not his death, his life. now that i cannot pour it into him, it threatens to go toward fighting the feelings and the reality of his death. instead, i must consciously direct it to fighting the injustice that took my son. God did not take him, injustice took him. God keeps him safe, loves him, and will make this right in the end. God has already beaten death and injustice and continues to work through people to fight it in the world. when we fight injustice we’re really fighting death, which is perhaps when we’re being the most christlike.”
~ lani roberts; journal entry from december 2011

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special needs

ashal emmanuel is every bit of two years and one month old.

dirty face working, pudgy feet padding, bony hands becoming more deft by the day, he toddles through life pushing his toy drill around in a doll stroller, climbing onto the kitchen table, and releasing his inner rhythm on everything that can possibly be turned into a drum. his chores include cleaning up books and toys, helping unload the dishwasher, bringing shoes to everyone before we go out, and carrying dirty diapers to the diaper pail. while his spoken vocabulary is limited, he signs prodigiously, demonstrating an uncannily sophisticated grasp of concepts such as “stuck,” “pain/hurt,” and indicating his need for self-regulation.

twice a week, on tuesday and wednesday, i dress him up in play clothes and shuttle him to therapyworks nw, a physical/occupational/speech therapy center about 15 minutes from our home. his hands ball up and his little wrists twist as he signs “play” … and i tell him yes, ash, we’re going to play. when we arrive we greet molly and the therapy puppy, barlow, and ash has to stay on the blue floor until the therapist calls him back, and only then can he step onto the orange floor. he’s 2 now, so he understands exactly what he’s supposed to do.

on tuesdays we play with julie. julie is embodied gentleness, with a kind face and eyes sparkling with humor. she is soft-spoken and almost girlish, with a tender wisdom and playful firmness. after taking our shoes off, we play with swings, hammocks, tunnels, trampolines, cars, and the ball pit. sometimes we draw. sometimes we play in water. we do a lot of drumming. as for ash’s parents, julie has taught us about sensory brushing, joint compressions, therapeutic listening, heavy work, and educated our use of weighted blankets, pressure vests, and other sensory/motor objects. this is occupational therapy.

on wednesdays we play with camille. camille’s affect reminds me of professor trelawney from harry potter, but the similarity ends quickly as she displays her creative, deeply rooted, intelligent approach to our sessions. she is decisive and bright eyed, no-nonsense and warm, singing and signing her way through sessions while ash watches and participates with wide eyes. we play with puzzles, small wind-up toys, early board games, and a wealth of fascinating little objects that encourage mouth awareness and spoken communication. this is speech therapy.

how can i describe ash’s improvement since starting these therapies a few months ago? his fine motor skills have improved and his spoken vocabulary is broader and better articulated, but the biggest improvement is in those things that are hard to story and quantify … fewer outbursts of frustration, less anxiety, a sense of stability. he’s just a happier kid now.

we go back and forth on using the phrase “special needs.” it’s a phrase with so much baggage that it almost feels heavy to write.

special needs.

it is severe disability, the pain of parents, “short bus” jokes, the dilemma of labeling children, the tortuous journey of diagnosis, crushing insecurity for labeled children who understand, different classes, constant struggle, the humility of confusion, tears of futility, stares and snap judgments from strangers, the necessary paraphernalia of disability, going to music therapy instead of music lessons, play therapy instead of playing, speech therapy instead of speaking … it’s the difference between being different and being different.

is this our life?

yes and no. because for kids on the border, the line between “normal needs” and “special needs” is not a line. it is a landscape. trails of need and meadows of ability and cliffs of emotional outburst dot the terrain of our days. how can i possibly reduce that to a label? perhaps a better label would be that we are mountain climbers, with a challenging mountain to climb – but it’s not mount everest.

analogies aside, what does this mean? ashal is an intelligent, sparkling, mostly normal toddler. ashal is also a substance affected, attachment trauma-ed child who doesn’t sleep, has significant delays, and struggles through life.

it’s paradoxical, but aren’t all toddlers little paradoxes? though perhaps ours is a bit more than usual.

another huge element in our special needs landscape is the factor of ash’s adoption. rather than using my own words to explore this, here is a quote from an international adoptee friend of ours, from a message sent right after i posted about ashal’s evaluation in october:

When I came over from [omitted], it took me two years to sleep a full night. I was nine months when I came over. I know ash’s adoption wasn’t international. But I do know all adoptions are pretty stressful for the adoptive parents for sure and most specifically for the adopted child.

Like ash, I had many terrors. Even though my language development was advanced, other areas were chronic concerns for my parents. I also came with some health issues: [omitted]. After those things were diagnosed and taken care of, years of chronic illness followed until I was 10. I also had some dissociative mental health issues, including depression and anxiety, that are pretty specific to interracial adoptees. Even though I could speak, it didn’t mean I did…often. From your descriptions of ash, though, you could have been describing me, or any of my adopted friends.

Adopting a child is hard work, the kind of guess work that goes into it much of the time is nothing like what happens with most biological parents and children.

twice a week, on tuesday and wednesday, we are a special needs family, because ash has a special need for specific therapies.

the rest of the week? we navigate the terrain of the border between the lands of special and normal: cliffs and meadows and thunderstorms and scenic views with our little boy who, labels aside, is undoubtedly special.

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the park

do you ever get so tired of your own inner voice, that you just have to stop talking and writing and thinking, and just take some pictures?

i do.

today, after ash and i got home from speech therapy, we tossed sweatshirts on the kids and whisked them off to the park, in total disregard of their regularly scheduled nap time. the sunshine and cold air cleared our heads and boosted our spirits. it was a time of little triumphs: ash bravely attacked the big slide for the first time by himself after going down with daddy, and was rewarded with the special joy of big slides. aida blinked and yawned, crawled, and went down the big slide a few times too. and i took pictures.

it was sublime.

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commune

first, there was the house.

back in 1962, a young couple named mckee bought a new house on a little cul-de-sac, just a mile away from main street, in a small suburb of a large town. we know this was their name because it is the name still stamped on our mailbox, even though the mckees have been dead for years. (we’re just not home-project-y people, ok?) they raised their daughters, grew old with the neighborhood, and passed away, leaving the house to be sold by their children.

back in 2010, we weren’t planning to buy a house. but when we stepped over the threshold, the house sang “welcome home,” and the mckee sisters said they would sell it to us since i teach piano, and their mother played cello, and they liked the idea of a young couple making music in the house. it came with a catch, though. to make our mortgage payment, we had to rent out the basement. we found 3 guys who wanted to rent together, and that is how the commune was born.

it grew and morphed, and eventually we remodeled the garage so that we could cram even more people into the tan house. by 2014, we had 6 adults and 2 children living in a 5 bedroom, 3 bathroom house. maybe we’re crazy … but maybe crazy people have more fun.

we count the years by housemates: the june that ian moved in before anyone else, the year tyrone married, the winter of becky, the spring of tricia, the summer of megan and micah, the sad autumn that ryan moved out, the next year of savannah and ash, the following year of aida and hannah. if home is where the heart is, we’ve gotten used to having the pain and excitement of turnover in our hearts on a regular basis.

community living is many things.

community living is… always having someone around to go out to coffee, or ice cream, or a movie, or on one occasion, for a drive around portland during the naked bike ride (we didn’t anticipate that part) to talk about the role of gender in the christian church.

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community living is… never having enough storage. corners overflowing, goodwill trips abounding, and creativity barely keeping up. it worked before we had kids, but kids have a way of generating clutter, and when you stuff your home full of people, storage space suffers.

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nevertheless, we come up with creative storage wherever and however we can.

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community living is… having a bitterly competitive contest to determine who can design the most awesome mail sorting system in which one housemate is humorously branded as a “manipulative troglodyte,” and the subsequent cooperative construction of the winning design…

all to deal with a mailbox that overfloweth. (and don’t even get me started on how the mailperson complaineth, especially when one of our cars blocketh the mailbox.)

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community living is… having a quote book jam-packed with witticisms, inside jokes, and silliness, such as:

micah: “becky, you took a picture of my henna, right? so i can send it to my mom? … i mean, my bros back home?”

joel: “so you LIKE looking at ian’s butt?
micah: “i’m indifferent! i’m switzerland to ian’s butt!”

lani: “introverted and extroverted aren’t about how much you talk; it’s about how you get your energy.
joel: “i get my energy from cats. does that mean i’m catroverted?”

micah: “i went to the store and had a list but i forgot it, so i ended up with imitation crab, cheetos, and bathing gel.”

joel: “savannah, you need to get in the quote book.
savannah: “i’m sure i will, i say blondest stuff.”
joel: “… you mean THE blondest stuff?”

megan: “the stereotype is that osu is the beer college and u of o is the drug college.”
joel: “which one is the beard college? i want to go to that one.”
megan: “psu.”

gems, every one of them.

community living is… being conspicuous in our neighborhood. the cul de sac is littered with our cars, because we can’t possibly fit 6 cars into a 2 car driveway. new neighbors’ eyebrows climb as they count the number of adults they meet who say, “i live there, in the tan house.” old neighbors don’t bother to learn everyone’s name, and instead talk to me about “the cute one” or “the tall one” or “the one who helped us find our dog.”

community living is… a lot of mugs. because everybody owns at least a few mugs.

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community living is… a lot of board games. because everybody owns at least a couple board games.

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community living is… being a gathering place. a friend who has never lived in the house, but has visited about once a week for years, brought us this print from hawaii. she said that the birds reminded her of the vivacity and intimacy of the life of this home, which was one of the most beautiful things i can imagine hearing. it hangs in our entryway.

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community living is… accepting transitions. as people move in, and through, and out, we step into different phases of friendship. the personality of the community is constantly in flux as each member moves through the stages of their life. we rejoice in the tentative baby steps of friendship with new housemates, relax in the easy intimacy of relationship with old housemates, and mourn the changing of relationship when a housemate moves out, even as we are excited for them to take new life steps. we’ve had members move out for school, work, marriage, and adventure, and we hold each close in our heart though our feet take us in separate directions.

community living is… trading privacy for intimacy. it’s not for everyone, but when it works it transcends the individuals involved, and becomes an entity, a piece of community art, with an identity and personality all its own.

community living is…
beautiful.
and hard.
quirky.
and messy.
occasionally petty, occasionally profound, but usually mundane.
often fun, sometimes irritating.
completely worth it.

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15 resolutions for 2015

res·o·lu·tion
rezəˈlo͞oSH(ə)n/
a firm decision to do or not to do something.
or
the action of solving a problem, dispute, or contentious matter.

  1. i resolve to make resolutions so wildly mundane and so hopelessly optimistic that i cannot but fail, so that i can …
  2. resolve to take every opportunity for a fresh start. each new season, new month, new day, down to every new minute is an opportunity to turn a new page and draw something beautiful. to that end, i …
  3. resolve not to have more patience, but to apologize more, specifically and sincerely. i know i will do things that i feel ashamed of but i …
  4. resolve to stop trying to buy happiness with the currency of shame.
  5. i resolve to love my mistakes, because they mean that i am alive.
  6. i resolve to honor my anger.
  7. i don’t resolve to wake earlier, but to breathe in peace whenever i do wake.
  8. i don’t resolve to eat less, but to enjoy my food more.
  9. i don’t resolve to exercise more, but to feel the burn more acutely, to lean into the lazy, and to revel in the endorphin high.
  10. i don’t resolve to fight harder against the blank page, but to dance with it.
  11. i resolve to treat each encounter with curiosity and wonder, as if i am meeting this person for the first time.
  12. i resolve to treat each encounter with tenderness and reverence, as if i am seeing this person for the last time.
  13. i resolve to love my community with a frightening ferocity, an open hand of acceptance, and an unlocked door to my home and heart.
  14. i resolve to have more resolve, to push through fear and immobility, to find the commitments my heart yearns to make and honor the voice that calls me to them, which is an impossible task.
  15. but i resolve to live grace to myself and others, to treat grace as the grand conjunction in the grammar of the universe, that which turns, “i will try but i will fail” into “i will try and i will fail and i will try again.”
  16. (bonus resolution …) i resolve to honor the paradox that grace calls us to: i will try hard to stop trying so hard, and just be.

may 2015 be a year in which we honor the space of not trying so hard. may we breathe in peace, breathe out compassion, and be present in each grace-charged moment of our lives. happy new year, friends!