Be Still and Know

i skipped all of november. silent.
but november wasn't silent. not at all.
it was, again, God calling me back to the stable.

today was the first sunday in advent. it's 4 am. i haven't slept. i'm in massachusetts. most of my family is back in uganda. zoe is in new hampshire. that's why i haven't slept. i want to be in the inn. i want to be in normal. in known. in warm. in comfort.

God keeps calling me back to the stable.

that's where He was born. where He entered the world. in humility. in left over. in no space. in poverty. He entered into without.

i've been broken of much of my "inn-ness". my expectations are no longer for normal and many of my desires for comfort are gone,  the physical ones. living in uganda brought me to the stable. it changed me, reminded me of what matters. it reminded me of our shared humanity. of how much i don't need.

but God knew i needed more of Him and less of me. God knew that i needed to go deeper. God is calling me back into the stable to meet Him where He met me, and you.

true humility is trusting Him. completely. true humility is not me deciding what i need or what i 'can' do, it's allowing Him to show me.

the stable is just that.it's humility. an example of His deep and pure love. it's transcendence. joining in our poverty (and by poverty i mean our global poverty of spirit, body, mind, our collective and multi-layered poverty). it's truth. it's real. it's basal. it's stripped down and bare and it says if i can meet you here i will meet you anywhere. it's 'where can you flee from my presence' apparently nowhere. it's 'and i am with you always, even until the end of the age'. it's non-abandonment. it's sacrificial. it's exemplary.

it's what we've been waiting for but miss because we are looking for the inn.

november was the hardest month of my life so far. november felt like someone shutting me out of the inn. cold and dark and lonely and afraid and lost. unsure. doubtful. the great unknown where feet may fail. biting wind. doors blowing shut.

no room. no room. no room.

but wait. advent.

a flicker in a far off barn. a distant glow. a long walk, but a promise of light. walls. a roof. suddenly a vision of the things that matter. hope. here is the way, walk in it. to the warmth. to a place to see. to see real. to see truth. to see the abiding Love of God. the stripped down, never ending, inescapable Love of God. 

i'm called back to remember His constant presence. His always provision. His great perspective which far outstretches mine. coming in from the cold and lonely places into the glow of a candle and into real love is beyond enough.

i've crawled to the foot of the cross before.

this is another humble crawling- but this time i'm crawling to the stable. a place of hope. of promise. i'm leaning against the wood wall, sitting on the dry straw. watching the sideways stare of the goat while he chews.

advent: arrival. appearance. emergence. dawn. birth. rise.

it is a season of these things.

today after a long long time of silence i finally sat down and began to write. i wrote because my silence was disturbing me. i wrote because i have untold stories. i wrote because it felt like agony.

it felt like autism (especially, although there is much in life these days) was eating my words.

i wrote and wrote and it ended up being about three different posts. but the internet slowed and slowed and stopped saving properly, and the one that most needed to be told, disappeared. gone.

i lost it. i ended up crying on the bathroom floor so desperately angry at God. it was as if the universe was silencing me. as if God was shutting me down. when i finally found my words- they were stolen away- and i was left with the agony of the echoing stories.

God knew i was angry about much more than the erased post, but it took me a while to see the anger i have at the stories themselves. the anger at the agony of them. that these are my stories. stories i didn't chose. my stories of broken. of never-ending-ness. of stagnation and unknowning. my same boring stories, day after day, week after month after years.

sometimes i feel completely swallowed by zoe and her challenges. consumed. autism eats things. it eats energy and time and hope. it eats relationships and libidos and futures. it eats family vacations and dinners and church. it eats normal. and it eats dreams. it eats light and breezy. lately it's eaten my words.

because what do i say? it's been 7 years and 7 months since i started to write about zoe. since i named this place "be still and know". i started it because of the agony of holding hard stories alone. i thought if i told mine, someone else might not feel so alone in theirs. but i'm still here, writing the same stories. i'm still here struggling with the same struggles- the "do" vs. "be".

when things are hard and unchanged for long periods of time, when 7 years later she's still carrying around a simba plush toy but only bigger, and needing someone to wash her hair and brush her teeth, you start to ask, "what do i do now?" you start to tread water. to put your eyes to the horizon with your feet kicking and your hands swirling and your head up, scanning for the next thing, a plan, something. but treading water can only go on for so long before you become exhausted.

7 years later, i'm still trying to tread water. but when you're in over your head and your tired- you need to flip over onto your back and float. you need to let go of your schemes and your control and let the water hold you. you need to trust and breathe deep and look up at the great expanse, the universe. at God. you need to be as you are, in the water, feeling your smallness against the sky and the sea.

be still and know that I am God.
as i was 7 years ago and as i will be in 7 more.
autism can't eat love, so don't give up. find your voice. don't let it be silenced. 
tell the stories and let them tell you of the goodness that hides inside. let them lead you back to hope, back to light, out of agony, into stillness. 
there you will find Me. and your stories will become much more.
let me show you

dear kids-

2 days ago our pregnant teenage dog lucy gave birth to 8 puppies. it was a combination of amazing and disgusting to see her instinctively navigate their entrance into the world. i watched as she gnawed off the amniotic sac, gulped down the placenta and licked the new pup and the mess left behind while nursing whomever had come before. i sat there thinking about how relatively easy your births were and that glad i am i'm not a dog. well, until 24 hours later when i was dealing with you four kids and your teen and preteen and tween issues. so i have only half the number as lucy- but i think i might rather eat my own afterbirth than take on the tremendous challenge of raising people! yes, in conclusion, lucy has it easier.

i mean can we talk? this business of helping you people grow into healthy, mature, hard working, kind, empathetic, generous people is hard work! this business of letting go of our ideas and ideals and looking and listening for your best and truest selves and then gently guiding you towards that, requires a lot of intentionality and time and energy.

don't get me wrong, i love you more than anything. and i love watching you become yourselves. all differently gifted and challenged. teaching me as much as i teach you. laughing with you. crying with you (or because of you). being annoyed and awed by you. it's all good stuff. but easy it is not.

easier, it is not.

no.

give me your crying infant self any day. give me you as a whinny 2 year old. diapers, wet bed, hours of breastfeeding, sleepless nights, i'll take it over your book reports left until 9pm, failing to hand in your science homework, your eye rolls, teaching you to read with a handful of learning differences, reminding everyone to wear deodorant, asking if you've brushed your teeth......with toothpaste (seriously???) explaining how to write a proper descriptive sentence for your vocab words....again, trying to remember long division and fermentation and how to spell everything, and answering "mom?" 1000 times a day from all 4 voices at once, usually followed by "what am i supposed to eat?"

and please, don't tell me about how tired you are because you played soccer for an hour and 45 minutes after school. don't tell me how you don't have time to set the table and do your homework. don't tell me because i'll give you tired and short on time!

did you people see me tonight practicing made up reading words with one of you while researching sloth habitats with another, and listening to the directions for another one's english assignment and while texting another doctor and a patient about a referral, while knowing that i still haven't gotten zoe dinner?

so guys, when 9:30 rolls around, i'm done.

so no, you better not have any sleep issues in middle school because my best self will be asleep and you don't want who will be waking up to help you back to bed. and you'd better learn to plan that report on sloths to be a daytime activity. at 9:30 i'm done. period. 9:30 is my time.  so don't whine about my quick bedtime tuck in, did i mention that i'm done? something else is calling me now- it might be my husband, it might be my bed, it might be work or it might be the latest binge watch pirated TV show, but it sho' isn't going to be you.

yes kids, good night. i love you  four little pups fiercely and that afterbirth looked pretty bad so i'll see you at 6:30 am, so we can do it again.
xo
mom

i listened to a talk today from a successful former life-long foster kid. he talked about the link between success and having an adult that never gives up on you. he talked about the impact adults have on kids. he showed some glass jars filled with marbles that represented the number of weeks in a life between birth and 18. then half that number of marbles between 9 years and 18, and then a very small group of marble from 16 to 18.  then he talked about his last foster dad who changed his life when he was 17 and a half. when he only had 26 marbles left in his jar. he did something bad, again, and his foster dad sat him down and said, "son, i don't see you as a problem, despite what you did and what you think. i see you as an opportunity." the power of words. the power of invested time that give the words foundation. the power of belief and support and never giving up. his point was, you always have time to impact the life of a child even if only one marble left.  of course i cried. and then i gulped because i don't have any more marbles in zoe's jar. in 2 days, she turns 18.

it kind of feels like a big deal. i think she thinks so too. she's acting mean and more stressed out than usual and instead of the excited pre-birthday gift chatter, she's ignoring it or using it as a reason for her stress. "you know i just need to be left alone! i'm about to turn 18!" as if the very act will take everything she's got. she's also using it as a way to not do things. "you know when i'm 18 i get to make my own decisions about my life!" she says when i ask her to take a bath. (tomorrow maybe her last bath ever!) i'm left with her stress, her anger, her fears, her overwhelm, her sadness. and i'm left with mine.

classically, 18 is a major turning point. it's becoming a real adult. it's independence in a new way. it's voter registration and draft registration. it's whatever movie you want to see. it's making your own medical decisions. it's not needing parental approval. it's usually move out of the house, go to college or get a job. it's thanks for raising me, but i've got this now. it's the loss of childhood and it's the brave entry into your own.

but. not. always. (and i think she knows it.)

let's be honest, adulthood is complicated. is it an age? or something you achieve? do you have to pass into it? in some ways it seems so. she's no where near independence. a part of her wants it desperately and a part of her is terrified of it. she wants to be able to do it, but she knows she's not ready and she's so afraid of failure, that she's not willing to try.

i read an article earlier today about how fast the time of raising our kids goes. how their years slip through our fingers like sand, so quickly on to the next stage so quickly it seems the separation begins, the individuation that as parents we desperately want for them and look forward to, while we simultaneously grieve the end of the needed seasons, the time when our connection was bodily and constant. it peels away slowly but when it's gone, it feels like an instant. i tearily read the article (because everything is moving me these days) and thought of jude, not zoe. he has lapped her in the independence department.

with zoe time has felt less like slipping sand and more like sticky batter that i'm trying to shape onto a cookie sheet but it won't leave my hands. none of her growing up has been easy or quick. her individuation is complex, she's clearly her own person, but dependent for so many things and so resistant to the next stage. my boys weaned themselves before i was ready and became progressively mobile until i was running to catch up with them. i had to force zoe to crawl, coerce her on hikes, even now she wants me to say "go zoe go!" just to get out of bed!

here's the thing, i'm not ready for her to go. i'm not sitting around wishing she would, but i do long for her to be where she wants to be in life instead of caught in the conflict of it. and i increasingly see the conflict. she carried Simba (the giant lion king plush toy) to the school market where she sells her cookies, and then starred enchantingly at the boys her age. she wants to make her own decisions about everything but can't responsibly brush her teeth. she notices that her childhood friend and cousin are applying to colleges and responds with expressions of happiness and jealousy. i can feel her conflict all. the. time. i try to hold compassion but not ever let it be pity. i try to feel with out feeling sorry for. i try to encourage her with out shaming her. i try to support her while being honest with her. pity, unfounded praise and false hope don't help anyone, but listening with compassion, believing in her without doling out expectations, and helping her accept a compliment given in truth, those things do help.

life with zoe has never been typical. she has grown me and stretched me in ways i never dreamed of and she will continue to. we've never hit milestones on time, some we haven't yet reached and some we may not.

maybe zoe's jar has marbles for the milestones not for weeks and we still have a lot left. or maybe we get another giant jar full when we turn 18- the adult marble jar.

but i think it's all reversed. i think we start out as empty jars and we become filled. over the years we collect things, not just marbles,  not just time, but life. beauty and pain. images and words. memories and relationships. rich flavors and broken bones. the smell of the goodness of life and tears. moments.  and all these things become parts of who we are. there is no ticking clock. there is no marble snatcher. only the slow additions. the collection. the pieces. making the incredible, one of a kind, that each of us are.

no the jar is not empty. it's 18 years full, almost.

"that's it. that's all i want."  i cried as i finished re-reading the article out loud to mike called "looking into the future for a child with autism" written by the mother of a 21 year old man with autism aging out of school and into adulthood.

i could have written it, well, up until the end. it speaks of the yearly changes in expectations and dreams but how they move in the opposite direction of what you had hoped the year before. lower. smaller. farther from 'normal'. life with a child with autism is a long road of accepting that changes in the brain mean changes in a life. changes in a family. ongoing changes. it's years on a balance beam holding a pole with belief and hope on one end and fear and evidence on the other.

in the beginning of the beam crossing, the pole you hold is about whether this diagnosis is even correct. is this autism? or is she just a late bloomer? does she need assistance or will she catch up? it teeters back and forth and then stabilizes and you accept the diagnosis and the assistance. but it's just for now. the jury's out on the future.

you're holding the balance because your job as a parent is believe in your child, to not give up on them even when the world does. to not give up on them even when a part of you does. and to love them unconditionally no matter what. to accept them for who they are, not who you may have thought they would be. our job as parents is to guide them to be their best selves- but their own selves. hoping and accepting. that can be a challenge to resolve internally.

the days, like all our days, are filled up with good parts and hard parts and what defines good is often the lack of hard and that becomes enough.

there are stories. everywhere. the temple grandins. the over-comers who find their own way, their own path to independence and the ability to fit into the world not just sit beside it. and every story like that brings hope and frustration. it can be easier to see all that she hasn't overcome - than to see what she has. 

then there are the other stories. self-harm and suicide. self loathing and depression. and i thank my lucky stars that she laughs and engages- that she's safe at least for now and i push the worry out.

as you keep crossing the beam, you find yourself letting go. you let go of college. you let go of high school graduation. you let go of independent living. your hope becomes getting up and dressed and finding something, anything that she likes enough to get up and dressed for. your belief is that she can. your fear is that she won't.

you let go of some of the dreams you had for your own life- being an empty-nester. significant travel. even increased work outside of the home. you long for the days when your special child will have her own dreams - her own hopes- something you can support her in and help her strive for. you long to pass the pole over to her- to walk beside her as she steps forward balancing her own hopes and fears.

this is the beauty and truth of the article. in his last IEP (individual educational plan) her son writes his own vision statement. he writes what she is unable to see - he writes when she no longer knows what to wish for and what this woman finds is that her son wants what she has already provided for him. he wants the best parts of the life he knows. the small joys. the moments. she learns what we all should strive for,  that "your future should look like the best parts of your present." and that is true for us all.

as i sit and look at my present, in the thick of it, the still hair-washing, pill remembering, food making, computer taking, laughing, LPS playing, joking, beginner facebooking, trying, explaining, crying, and trying again, can i see the future as the best of these with no more?

yes. i can. if that's what she wants.  i want her joy. i want her to know love, feel love, feel safe, feel good about herself. my hope now is that maybe in a few years, she too will be able to say what she wants. that the truth of who she is and always has been will come into to focus and our life will be enough- even if it looks just like today.

six years ago we began this adventure. six years ago today i wrote about waking up under african skies and what that felt like. i wrote about it feeling like home in a way that both surprised me and that i'd expected.  we feel at home when we are where we are supposed to be.

one of the hardest things about being here is the leaving that happens. expats are always coming and going and despite what they say, you never really know when someone will just pack it up and decide that this place for them, is no longer home.

it messes with you a bit. it raises the question of 'do i still feel at home?' 'is my time here up?' and then the host of practical questions that go with that. 'is this best for my kids?' and 'what about my family back in the states?' and 'what about my career?' and 'my (lacking) retirement account?'  and all the second guessing and re-questioning your 'call' here happens. it's exhausting. it makes the loss greater because now your friend is gone and you're left with the snow globe of your life shaken again.

i read yesterday that tim keller says your 'call' is a combination of your affinity, ability and opportunity. it's similar to one of my favorite buechner quotes,  

"The place God calls you to is the place where your deep gladness and the world's deep hunger meet."

deep gladness. that is what i felt waking up 6 years ago here. an unexplainable affinity. an opportunity. ability? that's the interesting part. i had some obvious abilities. doctoring. teaching. but what i didn't know then was that i lacked some pretty important ones.

did i have the ability to totally and completely rely on Jesus for everything? did i have the ability to trust Him when the hot dry season felt too hot and family felt too far and the funds were low? when loneliness hit? when my abilities didn't feel used? did i have the understanding of what 'deep gladness' really is? that it's not the same thing as happiness? that it's not things making sense perfectly? that it's not a neatly packaged life with a bow?

it has taken me a while and some dark seasons to learn that my most important ability is to be teachable not a teacher and to allow myself to be healed not to be the healer.

deep gladness is usually not neat and often doesn't make any sense and neither does the world's deep hunger. that is where the beauty comes in. deep meets deep. only with God can we hold both. can we find deep gladness in the face of a hungering world. deep gladness instead of being swallowed by it.  deep gladness by entering in to it even if we can't fix it.

a few months ago someone sent me a puzzle. i used to hate puzzles. i assumed they were boring because i couldn't imagine sitting still for long periods of time looking at so many small pieces that look almost the same and 'wasting my time' trying to figure out how they go together. but when i got the package, i decided to give it a try. to my surprise i loved it. i found it completely satisfying and obsessively not boring. i sat for hours at it's disposal until it came together into a finished picture.

in a world where so many things don't fit together, a puzzle eventually does. a piece that alone makes absolutely no sense, has a place in the big picture. but you do need to know what the big picture is. imagine how hard it would be to do a puzzle if you didn't know what it was supposed to look like in the end?

deep gladness is like this.  it's enjoying the process itself. appreciating the pieces. attending to the details on their edges and the shade of their blue. it's going back and forth between the individual and whole. it's letting go when you are stuck on a section and doing another part. it's taking a complete break and coming back with fresh eyes when you are able to see more clearly. after a while it becomes a zen thing. mediation and intuition. you become one with it. seeing a piece and feeling where about it belongs.

and this is like our process of finding and growing in God in a world that is deeply hungry. deep gladness i've found, deepens. i had an affinity for east africa, and i've been given the opportunity. my abilities now include my dependency. instead of referencing my happiness as a gauge for my continued calling, i'm allowing this place, this process, this shared hungering, to deepen my gladness.

what a joy!

you are the sea
i am the pier

you are voluminous, full, salty, swelling and retreating
moved by the moon

you crash into me
again and again
you rage
you surround

a part of me is always encompassed by you.
a part of me touches the land
the land that you will never reach.

i am a bridge
between land and sea
between other and you

it's stormy these days
and my limbs are covered by what you've brought
and what has been allowed to grow
fixed barnacles
seaweed singing it's exaggerated sweep in the push and pull of you

i hold things that are part of you
things that remind me i am foreign to you,
things that wouldn't be with me if not for you.
i am both
an intruder and a friend

your salt has flavored me
your waters have colored me
where we meet i am dark
as i move away from you
i lighten

but i will not go
no
i am here to reach you
to share you with the land
to connect

you are beautiful
you are a privilege to be part of
in rough waves and stillness
you speak truth

i am here
i am listening
always

dear jude, bryn and rose,

you've heard me say 'i'm sorry' many times for many different things, but i wanted to specifically say i'm sorry that life with your sister can be so hard. i love all four of you so much and i know it can seem like a betrayal to apologize for your having a sibling with autism, but i think 'i'm sorry' is in order.

i'm sorry that i couldn't finish the hike with you today because your sister couldn't deal and needed to go back to the car. i'm sorry that i couldn't go down to the creek and climb rocks with you because she needs someone to stay on the path with her. i'm sorry for all the times when i don't give full attention to what you're showing me, because i have one ear listening for her. i'm sorry for the times when i don't praise your accomplishments as i should because i know your sister will never do those things and she feels badly about it. i'm sorry that you get one parent at times when you deserve two.

i'm sorry that you have to bend so much. that her inflexibility requires so much more flexibility from you. i'm sorry that you have to be the oldest when you're not by age. i'm sorry for all the times when i'm too tired. when you see me crying. when you see me lose it on her. for all the times you see me fail and parent poorly. i'm sorry for the times when your needs get put on hold temporarily because her needs are shouting. i'm sorry for the times when i forget to go back to your needs afterwards. i'm sorry that the three of you are lumped together sometimes as if your combined mass equals hers, but it feels like it does.

i'm sorry that the rules are different for her, like screen-time and chores. it's not fair. it's just not. i'm sorry for the times she embarrasses you. i'm sorry when you have to explain things over and over for her to understand.

i'm sorry that my memory of your babyhood is blurry because it's seen through eyes that were often watching her fall apart. i'm sorry that we have to miss large gatherings sometimes because it will be too much for her. i'm sorry that sometimes we don't get invited to places because she is too much for other people. i'm sorry that when we go clothes shopping for you, much of the time is spent finding her. i'm sorry that you have to help clean up the aisle after she's taken down every single littlest pet shop toy. i'm sorry for the time i said no to her buying the little plush toy and she unraveled at the supermarket and i needed you three to pay and check out and get the groceries into the car while i dragged her out kicking. i'm sorry that you had to listen to her scream out her frustrations and self-hatred on the way home.

i'm sorry for burdening you with a sense of premature responsibility on saturday night when your dad and i escape for date-night so we can process this life of ours and that it made you feel caught between wanting to support us and wanting to escape too.

mostly i'm sorry for not being the parent to you that i thought i would be.

here is the thing that i'm not sorry about- i'm not sorry about the people i see you becoming.

i'm not sorry that you are seeing Real. that you are understanding that life is unfair, it just is. that you are learning about different first hand. that you are gaining a deep sensitivity for others. that you are seeing that life throws us curve balls all the time and we have to learn to catch them. i'm not sorry that you know that things are broken, that we are broken. that there is no perfect anything. that we make mistakes. that we fall and rise again. that we keep going even when it's so hard. that we believe in each other. that loving people isn't easy. i'm not sorry that you are learning patience. learning responsibility. learning to be thankful for all the things you can do and do well.

and you do so many things well. i'm so very proud of you. you are doing a great job of living a life that requires more of you. you are practicing tolerance. and having a sense of humor even in the hard stuff. you are able to roll with it, to give up the front seat again. you learn to pick your battles, and avoid unnecessary conflict. you exhibit grace and forgiveness.

so my three little ones, you are amazing, unique individuals, and these things that are shaping you, growing you, stretching you, they are part of what makes you who you are- they are hidden gifts from your sister. just know that you are deeply loved, incredibly valuable and cherished as is your sister.

xxoo,

mom 

God speaks to each of us as he makes us,
then walks with us silently out of the night.

These are the words we dimly hear:
You, sent out beyond your recall,
go to the limits of your longing.
Embody me.

Flare up like a flame
and make big shadows I can move in.

Let everything happen to you: beauty and terror.
Just keep going. No feeling is final.
Don’t let yourself lose me.

Nearby is the country they call life.
You will know it by its seriousness.
Give me your hand.
                             -Rainer Maire Rilke



it's the little things that break me.

the signature in a yearbook "we made it! (heart) your very best friend ____" and feeling the absence of that for your 17 year old who stopped school the first month of 9th grade because it was all too much. who has no very best friend, not really.  it's not the proms and the drivers license and the college tours.

it's the loneliness.

it's in the remembering of my life at 17 and how important it was to break off from my parents and become my own. how differentiation was desired and needed and happened like every other milestone. milestones i've been watching and waiting for since her birth- some reached delayed- some never attained.

this summer she's going to sleep-away camp for 5 nights. it's a a camp for kids with special needs. she's terrified. for the past 6 months she will wake in the night, "what if i'm bullied?"  "what if people are mean teasing me?"  "what if then i become mean?" it's the same questions over and over. a deep fear of rejection. a fear of her own failure. a fear of the loneliness that sits at the the bottom of both.

i put on a good face. i listen. i tell her that she won't be bullied because i really believe that she won't. but inside i'm scared for her. just like i was when i dropped her off her first day of kindergarden with her giant hello kitty backpack down to her knees and kissed her little blonde head and watched her limp walk into a giant elementary school to be eaten by life. and she was, we heard years later, by kids who did 'mean tease' and bully, leaving scars on an already wounded girl.

it is what it is.
this.
for her. for me.
in the savory moments and the sour ones.

she will go and i will settle her in. i will believe in her. her goodness. her bravery. i will give her back to God like i do everyday, and pull my ego from hers and let her be who she is.

and God will speak to her as He made her. and speak to me as He made me.
and walk with us (both) silently out of the night.

may she find the limits of her longing, and go to them.
may she flare up like a flame
may she keep going, in the beauty and the terror, both
may she never lose the One who made her
may she take hold of His hand.

i have a middle-schooler. it's exam week. we leave for the USA in 3 days and that needs another post. but the middle-schooler and the exams are interesting. according to "captain fantastic" "interesting" is an illegal word. it doesn't say much. it's kind of a cop out- it buys time, maybe waiting to see if the asker is really interested in the answer. so what i mean is this week of midde-school exams has shown me things about the dynamics of our family. mike takes math. i take science. we rotate on history. we share english. bible, pe, music, IT and french? he's on his own. because we're too tired.

so i was reviewing science with him today.

conservation of mass: in a reaction, the total mass of reactants is equal to the total mass of the products; matter can be changed, transformed, but mass is neither created nor destroyed.

i'm looking at my child who 13 years ago was created in my body. and if he was created, his existence must mean that something in me was destroyed. there has to be balance. some things in me gave themselves to become him. i know technically it was the extra food i ate, but that went to his bones and muscles. parts of me gave him life, my breathing grew him too. my spirit spoke to his.

a very long time ago i was a nursing assistant on the neurosurgery floor of an academic hospital, when i was also in the process of thinking about becoming a doctor. there was a young woman on the floor who had a bad brain tumor growing in her head and a baby growing in her belly. it was complicated. trying to kill off some of her fast growing cells and trying to encourage the growth of others. trying to save her life and the life of her baby. after a while it became clear she wasn't going to make it, but there was still the baby. she was incubator-like. a giant nest. the unlikely protector. semi-conscious but functioning as a garden for this potential life.

it was weird when the obstetrician would come on the floor to scan her belly and see how this baby was doing when she was doing poorly. something dying. something trying to become a life. a floor riddled with endings, and a doctor that helps those beginning. we were all trying to get her to viablilty, 25 weeks at least. and it seemed somehow more significant that anything else happening there. getting that baby to live would somehow validate her living. in a place of loss and questioning of the meaning of things, this would feel like victory. a tangible piece of her to keep breathing her breath. a way for her cells to walk on out and kiss death goodbye. an exchange. conservation of mass. conservation of spirit.

she was about 22 weeks. i remember the code well. i think i may have even been the one who found her not breathing, maybe not, but it felt that way. standing to the side while the already doctors flooded the room and began to resuscitate her. she was already gone. everyone knew that. like for an organ donor, they tired to perfuse her heart, her liver, to pump the blood, to get the oxygen into the baby. maybe she could be kept alive on life-support for a few more weeks- just long enough- just until we could cut the baby out. just so things could somehow be okay.

but that is not what happened. i think that baby got more than nutrients. that baby got a taste of death before it was even born and that was too much. no thank you. i'll head out with my mother. this world is not looking like something i want to be a part of. i'll say goodbye now too.

it was tragic. it was heart wrenching. to hear the words- "she didn't make it, and the baby died too." to imagine the double loss her parents would feel. but there was something sacred about it. something that felt right. they would be buried together. flesh of my flesh. bone of my bone. paired forever. together.

conservation of mass.

there was a time when my baby had a brain tumor. this one. 12 years ago.  this one now studying conservation of mass.

the world is giant and small and terrifying and yet wonderful.

we pour ourselves into each other. when our children leave our skin we are transformed. we have pieces of ourselves walking around outside of our bodies. and we have space created from their leaving. we are open, possibly vulnerable, but available. what do we fill it with? we have multiplied. they are ours yet completely their own. unique. not extensions of our selves- but separate selves - battered and bruised by the world and loved and held as well by love and light, by God- so much bigger than me.

and i? i am who? who i was? who i will be?

i am here. reading the science 6 semester 2 study guide, with a boy made up of me.







 

today i got up just before the sun to talk to God. there was a beautiful sky, the coming light. the changing from night to day. He is all about new beginnings in a real and deep way. i know that. and if i get up early enough, He reminds me. it's so worth it.

as i sat out on the porch, alone, watching the day begin, i truly felt nothing but joy. i had no great reason, just the moment itself. cool air. the fading darkness. the early light.

and i listened to that transition and i heard: "God doesn't make mistakes".  He doesn't make mistakes. i sat with that for a while to be sure i believed it, because that's huge. i mean it has ramifications.

it's opening a can of worms about suffering and why God allows it and is it His will or not and what kind of a God would... to which i say i don't fully know. but what i'm pretty sure about is that we are put on earth to find God. and when we find God and i mean really find God - like we want to sit and have a conversation with Him/Her, not like we decide to go to church, not like when we find religion - when we find God and begin to know and trust Him,  we find Joy.

but we don't have to. by all means it's our choice. we can try to make our own way and generate our own version of happiness. which people do all the time, successfully, but i think God has so much more for us. we can be really busy at doing many other things- like working hard and sacrificing things for that, like making money and enjoying that, like focusing on our relationships, like traveling and building things and making things and reading and writing things. good things. all the parts of our life can distract us from finding God, or they can be used to point us to God. the things in our life are not bad. but if the main purpose on earth is to find and know God, the paths that take us through suffering are part of that and they are often a more direct route.

i don't think God meant it like how we think of it. i don't think God wants us to suffer and come crawling to Him. i certainly don't think suffering is anything related to a punishment. sometimes we suffer because of the natural consequences of our choices, but often suffering is random, or because of someone else's choices.

God didn't fall asleep when Zoe was conceived. He knit her together in my womb and she is fearfully and wonderfully made- with her scoliosis and her sprengels shoulder and her autism- because God is so much bigger than our little made-to-last-80-years bodies. He made me with a straight back and even shoulders and a neuro-typical brain, and a great need for attention and affection and a tendency to be secretly selfish, and a great many other struggles. mine are just invisible.

so much of life is about avoiding suffering at all costs. i get that. do i wish for zoe that her world could be easier? that she didn't have a limp? that she understood facial expressions? yes. but i wouldn't change her because i am small and only see so far. because i'm often wrong. because i don't know in this great spinning world the potential importance of her challenges for her path to God, or mine, or anyone else's, maybe yours.

what about the most vile of crimes? does God allow those? yes. because people have choice and people hurt other people and we should do everything in our power to prevent and protect. can God heal the deep wounds from those crimes? yes. fully. with the tears that He cries while holding us in our pain. does God love the person who inflicted those wounds? yes. fully. as unfathomable as it seems He can't help Himself, as i would love my most broken child at their worst.

what about illness? why does God allow that? in a child? a young parent? i don't know why except that sometimes we don't make it to 80,  we all end. the great suffering that comes from that? i think it breaks God's heart too. but He doesn't avoid it, He joins us in it. and i have felt His tears and arms when i've walked though some of this suffering.

sometimes our best intentioned responses to potential suffering can move our paths away from His plan and make it harder to find God. when i was pregnant with jude and things looked very bleak, that he would be severely handicapped, many people mentioned abortion. it was their best intentioned response to help us avoid suffering. yet i would have missed encountering God in a powerful way- during the dark days that followed. i would have missed the opportunity to see miracle. my world would have gotten a bit smaller, a bit more controlled, a bit less about the mystery. and with out a jude.

when we open ourselves up to suffering we open ourselves to experiencing things beyond us. we gain a perspective that is only from the privilege of loss. when we die all our small deaths, of unmet expectations and dreams lost, we free ourselves to see a much bigger world. blinders come off and what kept us tethered or treading water in our understanding of what's important, changes.

from that place i can thank Him for all of life. from a place of trust and some personal experience, i can say thank you even for hard things, because i know God doesn't make mistakes.

last night was the prom and i have a confession.

i've had my finger hovering over the "like" button on my friends facebook photos of their beautiful, sweet teens all dressed up together, but i've been unable to push it. why? because it's  complicated. because there aren't enough emoticons. because you should be able to click on several - like 'love' and 'sad'.

i knew this day was coming. i've known it for a long time. it is another piece of different. not going to a party. not going to the mall with friends, or the movies. or whatever.

i know different is hard to be around. it's hard to know what to say or do. there are eggshells involved and not walking on them. it's easier to avoid altogether. but for the heart underneath that different skin, those awkward words, what is that world like?

i'll admit that it used to be about me, the loss of things. i would grieve my not getting to go clothes shopping with my daughter because everything was too scratchy. not going to large gatherings because it was too loud. not doing the mani-pedi because it hurts. but i've long let that go. i've learned that it's me that must enter her world. and her world is fun too.

she loves stories and movies with chase scenes. all animals. most sweet things. and anything soft. she loves conversations and asking questions especially questions about people, are they dead or alive, how old they are, where were they born. and she loves music. even parts of music. again and again and again. she's kind to insects and gentle with people, especially people who others aren't gentle with.  most of all, she loves to make people laugh.

today is palm sunday. the day that Jesus began His decent to the cross. it was His high point- there was singing, praising, palms waving, hope abounding- even then His humility spoke as He entered jerusalem on a donkey. His humility, not His humanity- because that is not how humanity would have done it. we would have done it in a gilded carriage- reclining while being pulled through the streets.  we keep getting it wrong.

Jesus hung out with different. He saw through skin and words and money and health and He looked straight at the heart. He called people out for their inability to do this. He saw in the vulnerable, in the different, an ability for them to see things more clearly. perhaps they were already broken by life. perhaps they couldn't hide behind their skin or status. perhaps they were free-er. perhaps they were real.

i know Jesus loves all of us, but during his 33 years wearing skin, i think He would have especially loved to meet zoe. i think He would have hung out with her. He would have defended her inside out shirt wearing (it is less scratchy). He would have welcomed her questioning. He would have laughed at her jokes, let her help with His miracles, let her sit beside Him and taught her to wash feet. He would have appreciated her spirit of looking out for the least of these. He would have loved her then just as He loves her now- exactly as she is. maybe he would have even taken her to the prom.

zoe and friends at 'a night to shine' prom

zoe has broken me of some of my blindness. my tendency to forget the donkey and look around for a gilded carriage. my ease of getting lost in humanity. my challenge to see different with out pity. to see the reality that our hearts are absolutely beating just the same. that the bodies and minds we borrow for 80-ish years are so inconsequential compared to our spirits which bloom and grow forever.

so it is with a joyful heart that i will push 'like' on the pictures of my friends kids. because i do love them and i do love this day for them.  and i will wish instead of pushing both 'love' and 'sad', i could push both 'love' and 'haha' as i imagine Jesus taking zoe to the prom on a donkey, which is of course exactly the way they would go :).

this morning i woke up and decided to stay in bed, which was exactly what you would have done if you'd been at my house last night.

oh dear.

i arrived home to her sitting paperclip style on her bed in front of the computer, she greeted me with 'what do you want MOM?' nothing new here. we talked for a few minutes much to her chagrin and i left to see the other kids.
the afternoon was going swimmingly. i love fridays. no homework. no pressure. no big deals. a grilled cheese and tomato soup night. rice krispie treats. but then her brother wanted to use the kids computer. it was about 4pm. she'd had it all day. it was reasonable. it was fair. it was his turn.

but to zoe, none of that matters. reason, fair, turns, all go out the window when she is convinced that she NEEDS it, whatever it is, to deal. you would have thought she was 2 years old and i'd given away her blankie. she yelled and slammed and stormed and obsessed. it's the last part that is actually the hardest. because the obsessed part grows worse with time. with each minute that she is not getting what she has convinced herself that she needs.

she did "okay" until dinner. it was a slow escalation. i watched her trying to distract herself with the TV but it was upsetting that her sister was watching too. she demanded to turn the TV off if she couldn't watch it alone, then refused to turn it off when asked to come to dinner. she fought her way through dinner. after dinner she was appeased with the rice krispie treats and engagement with her dad for a few minutes but the obsession kept coming back. an unwanted intruder that would not leave her alone.

we were trying to watch the news. she couldn't stop talking. she couldn't stop herself from insisting that she get back the computer. i tried to explain that her turn was over, but she couldn't take no for an answer. i tried to tell her i knew she was disappointed but that disappointment isn't the end of the  world. except that for her, that is what it felt like.

she was so unreasonable. so loud. so hysterical. we got her to her room and sat on her bed. by now it was 10pm and we were trying to get the other kids to bed too. there was so much drama and emotion in the room that it throbbed.

"i'm going to kill myself if i don't get that computer!"
"i know you're really upset and this feels awful, but it's important to learn to sit with our disappointments."
"I CAN'T!!! I CAN'T!!! DON'T YOU SEE THAT I'M SUFFERING!!!"

our presence was escalating her. our leaving was traumatizing her. it was like a 2 year old who has no idea how to soothe themselves- who wants you to stay and then go- who wants to do anything they can to not feel this bad. at this point the feelings have taken over- hijacked her - reason is out the window. so we put her in the bed and shut the door while she wailed.

the other kids were suffering too as we were asking them to go to sleep as the house pulsed with confusing emotion.
"poor zoe."
"i feel so bad for her."
"what's wrong with her?"
"i hate how upset she gets"
"what is she like this?"
and underneath is a lot of unsaid things. things that kids feel but don't say. things like 'is it my fault?' and 'is home safe?' and 'why does it have to be like this?' and 'where am i in this?' and 'i wish it was different' and 'i feel guilty that i wish it was different'.

i did my best. i tried to sit with them in their beds and answer as best i could and address the undergarments of their questions. but my heart was breaking.

i went back to zoe and sat in the dimly lit room on the edge of the bed and rubbed her bent back. "you know that i hate you right now" she said calmly, " can you handle that?"
"yup. i know." i said, "do you think you could play nicolette larson on your phone?"
"okay but it won't make me feel better."
'i know', i thought, 'i might make you feel worse.'

nicolette larson sang a lullaby album we listened to when zoe was a baby. she loved it.
and there it was. welcome to the world.

a few weeks ago, someone came outside dripping wet, wearing only a towel and a lone-ranger mask that says 'trick or treat' beneath the eye holes, and announced that she wanted me to meet the new her. "butt-naked girl."

i'm not making this up.

i was standing in the doorway, at 1pm, looking at my 17 year old in her mask and towel. i listened to her rant about wanting to be a rebel, to "run around outside butt-naked and throw things and break glass."

it was both hysterical and sad and it brought up the usual questions for me, "oh dear God, what is my life?" and "what got her all riled up?" and typical thoughts like, "here goes the next hour of my day" and "well, at least she's finally finished the shower, that's something."

the funny part is the lone-ranger mask that says 'trick or treat' and that her superhero alter-ego is called "butt-naked girl". the sad part is what's behind it. the words expressing the frustration of being 17 and feeling trapped and angry, of wanting to individuate but knowing you're also still dependent in many ways- afraid to bite the hand that feeds you. the beauty of it is the truth in her choice of superhero.

emotionally she is BNG (butt-naked girl). she can not keep a secret. she says whatever is on her mind no matter who is listening. she tells on herself when she does something wrong. her emotions ride beside her mouth and we get the joy of listening to every. single. raw emotion. she says what everyone else is feeling but know they shouldn't say. it's both endearing and disheartening. it makes her friends and enemies. it's one of the biggest ways people know that her world is different. because nobody talks as frankly, opening, and vulnerably as butt-naked girl.

a few nights later, i woke up quickly out of a dream where zoe had pulled one of her BNG moves. i don't remember the specifics, i only remember my response which was to quickly dismiss her, to separate myself from her while subtly requesting recognition for my struggle.  i said something like, 'oh she has autism, don't mind her.' with the air of 'and look what i have to deal with, poor me.'

what woke me up was my discounting of her personhood. what woke me was this sleepy realization that i do that. i make her struggles all about me.

ouch. this brought great pause.

we spend all this time as parents talking about how much we love our kids. how we would do anything for them. but what i saw so clearly in this dream was how much of the time, especially with a kid with special needs, it's focused on me. it's about poor me. i'm not seeing her. Her. with a capital H. i'm focused on, 'what can i do to make this stop? to get to normal?' and somehow those questions have felt like i'm caring about her- but in truth, from the 30,000 foot view, they are about me.

so in my mind i looked back at her peering out through the eye-holes of that mask, and i tried to image what it would feel like to be her. i tried to give her back her personhood. i remembered what i felt like at 17 and how hard it would have been to have needed my mom to wash my hair, and open my soda. to have no idea at all if it's am or pm ever. to have no internal clock, no sense of when i'm hungry or cold, to rely on others or i might get lost. how scary would that world be?? it would be terrifying. how absolutely frustrating. and yet, how often do i forget all of that, and think about the next hour of my day and the inconvenience of spending it talking to her about wanting to break things and be BNG.

it felt like a moment. like the time had come for something but i didn't know what. i was looking down the barrel of the rest of my life and had no idea what really to do? we'd come to a standstill. no longer in school, not doing 'much' of anything, struggling with what ever that 'anything' was. i was hearing myself acknowledge this in my reply to questions like, 'how are you?' with, 'i don't know what to do with zoe.' to which 99% of the time, there is no answer.

this is where God comes in.

divine orchestration lead me to an on-line support group for people on the autistic spectrum and their families . this specific one. after watching some of their videos and reading some of their articles about her issues - managing sticky thoughts, hygiene issues, getting overwhelmed and frozen, i thought it would be perfect for us to do together. i could understand her and she could get some tools to help herself. but that totally backfired. because she's 17 and wants to be a rebel. because she doesn't technically want any 'help'. because she already understands herself, it's me who has the problem.

she's actually right.

after 17 years (6 of which you can read about on this blog), some things have begun to make sense. i have shelves of books, i've read thousands of articles, i've met with many people- all of them focusing on understanding the autistic brain, creating systems that "work" for kids like zoe, trying to help her with diet, learning techniques, adaptive environments, exercises, and medications. all of those things can be important pieces but they are just pieces. they are not the root.


so i've begun to flip this whole thing on it's head. to focus on Seeing Her and fixing me, not the other way around. and let me tell you people- it works! 

it works because she is a person with legitimate, equally valid feelings and sensations. a person who may be so unfathomably transparent that it seems she can't possibly have real feelings or how could she verbalize those deep, shameful, emotions outloud?? she says things like subtitles- painful truths without the face or voice to match the words - and this makes me forget. i forget the very real connection between her actual words and the truth of the feelings underneath them- because of the missing voice and facial expressions. that is what is deeply sad.

what this group in their words and videos and advice and support has given me, is a giant reminder that while yes her brain is differently wired and her sensations are on overdrive all the time, that she is Real. she notices everything i do and say and while she may not show it, it is impacting her greatly. i can only help her by changing me.

all the shelf books and articles and fix-it's are not going to the root. what i have been doing is focusing on the fixing- now i need to go deep to the root. the root is acceptance.  moving inward. being with my pain of not being able to easily identify with my first born child. being with her in her pain of struggling to connect. experiencing joy as i learn to see Her and learn to relate to her as she is, not change her. experience the freedom as i stop fighting what is.

i don't think finding this website when i did was a coincidence. 
          
God was listening. God was watching the BNG moment. He was in the delicate timing of things. symphony like. if we look, we see the divine hands all over our lives. but we have to be attentive and intentional.

i'm working on an inside version of BNG. to be vulnerable and transparent within my self. to expose all the feelings inside, to hold space for all of them and be with them. i'm working on acceptance.
for zoe, the feelings themselves are so overwhelming that she spits them out her mouth to avoid feeling them. what i spit out of my mouth is often coming from similar overwhelm but hidden in blame or anger.  i'm hoping that as i learn to be butt-honest with my own feelings,  i will be able to help BNG to not just verbalize all the stuff inside her but allow herself to feel it too.

something is beginning.

what if things, whatever they are, were enough.
as they are.

what if i could let things be enough?
what if i could let me be enough.

i've been in a funk the past few days. why? it's nothing new. it's the myriad of things. the weeds that grow around the growing seedlings and choke them. the things in life that are just really hard and not fixable. the things that most of my life i've spent doing everything i can to fix or soothe or at the very least, ignore. i'm sure i'm not alone in this- this process of avoiding, or escaping the overwhelming bits of life. it's this process or lack of process that drives addictions and drives thoughts and words and actions we later regret.

yesterday in the car with mike i was going on and on about my funky mood. i'll be honest, i was annoying myself. i was tired of the sound of my voice and the attitude beneath it. i was tired of feeling the feelings of sad and stuck and 'i don't know what do'. and after several minutes i began complaining about my complaining and then apologizing for my complaining. and then mike gave me a gift. he showed me something that i couldn't see on my own. he basically said that it was fine to complain, to vent, to feel these things, that he didn't mind listening because now, i wasn't asking him to fix it. i wasn't grappling. i wasn't turning my life into a rubix cube and shifting rows back and forth frantically trying to make all the colors match up. he showed me that actually, i was feeling it, sitting with it, processing it, and that was good and new for me.

it was like someone turned on the lights.

because i could see it and i could feel it- even though it didn't feel good- it felt real and honest and necessary. and then i began to remember how i 'handled' this kind of thing before. i would gather all the kite strings of the problems in life that were flying helter-skelter overhead, and channel all of them into some grand singular puzzle that had a solution. there would be desperation (which i would have called passion). it would involve sacrifice (but really some sort of anxiety turned excitement masking as sacrifice). all of the nervous energy spent chasing the kite strings would now have a purpose and the drive behind whatever grand idea i had would be very hard to reckon with. poor mike.

there are problems with this type of "handling"- many of them. for one thing, it often didn't get past the research stage. for example. the fatigue of life here, the fatigue of special needs, the unknown of rose, of summer plans, of zoe's life, the challenges of work, of fundraising, of being a parent, of marriage, the season of not knowing what feels like many things, can become " i need to find a school for zoe".

in my mind it goes something like this, "if i find a school for zoe, everything will get better. i will feel better. she will have something to do, something will be settled, everything will get easier. it could lead to her independence. it could lead to my freedom. (and greatest of all...) i will have some control!" so there will go my afternoon.

this specific example has happened a number of times- okay way too many times. it ends with me circling back to where i started. there are no ideal schools. not here. not in our budget (which is really nothing).  which reminds me that i'm here. in a place with no services. sometimes i'll feel better briefly, i've done my due diligence. sometimes i'll feel worse. but i won't have done the harder part of looking at things as they are. feeling them.

of letting things be.
and be enough.

this is where God comes in- (okay i know He should have come in earlier, but i'm in process).

God's like, "give Me the rubix cube. here is a paint brush- stop trying to solve and fix- take what you have and create. let Me mend. it's not to be solved. it's to be lived."

the other day rose and i were watching a 'next top designer' type show. the finalists were given a mystery fabric and had a given amount of time to make an assigned clothing item. it was honestly pretty stupid- make an undergarment, secret ingredient....movie theater seats (didn't make that up) and it's kind of applicable. because sometimes i feel like my life is trying to make an undergarment with movie theater seats.

i'm like, 'God? did you see what you've given me to work with here?? my life stuff doesn't even make sense. i'd like to sit here and argue and complain about how impossible it is to make clothing from seats!'

and God's like," have you seen what i've made that lives at the bottom of the ocean and no one ever really sees except because i've created someone who would actually go down to the bottom of the ocean and take a picture of it? now, go! this is your life, your chance, create-it's actually more than  enough."  

sometimes life feels impossible. the tasks overwhelming. the effort exhausting. sometimes i would rather sit in the movie theater seats then deconstruct them and create something totally different. but this is what i've got. and here is the trick. it's not a mistake. what feels like brokenness, can become a gift. it's a gift. so is yours whatever your movie theater seat equivalent is.

"Three times I pleaded with the Lord to take it away from me. But He said to me, "My grace is sufficient for you, for My power is made perfect in weakness. " 2 corinth 12:8-9

i have begged to get a new secret ingredient, for God to change out the theater seats for some normal fabric, something easier to work with, something that doesn't smell like popcorn. but. but God says, here's the deal, your sufferings can be about something bigger than you. give Me what you've got. take what you have there and let me help you make something beautiful- you are fearfully and wonderfully made- your life story is in My hands- I make all things new- I am in the business of restoration. it will be hard. it is not easy. it will hurt. but you have been given the opportunity to do something different. the opportunity to see things differently."

what if my greatest struggles, my wandering kite strings, are more than enough to grow me into someone who loves so well, people know it can only be grace? what if all my weakest spots - shine light on the faithfulness of Jesus. that actually is enough. my story, as it was and is and will be, could be the most amazing, unique, work of art. so could yours.

but to live it well, i have to feel it first, all of it. not avoid or ignore or soothe, i have to accept and embrace it. that is where it begins.

i just found myself researching affordable colleges. the problem with this, is that my college bound kid is in the 6th grade. this is so not about preparation and proper planning, this is about me feeling out of control.

we were invited to a newish friend's house for swimming and lunch. it was going to be a chill afternoon with just our family and her and her husband.  i knew it would be a good thing for zoe- not too much stimulation, not too many people, not a lot of noise, not a lot of expectations.

lately i've become very lax about letting zoe stay home. if there are going to be a ton of people, or it's a new place with new people, or it's loud, or even if she's already done a social event for the day, i will oblige her and let her stay home. but this was a 'safe' event. and it was the only event for the day. and she missed cookie selling and bible study last night - so in my book, there was no excuse.

she didn't want to go. she was on her bed, folded in half like a paperclip, watching a show on her computer. "i can't go! i can't handle it! let me stay home!"

pause.

this right here is the dilemma of my life. the dilemma of having a child with special needs. because by far the easiest thing to do is say, "okay" and walk away. and that is also, honestly, what i wanted to do. it would mean an entire afternoon with out sticky thoughts and with out long side conversations about her disability and with out the repetitive need to appease her with those comments that feel so fake but somehow make her feel in control when she's clearly lost to herself. comments like "thank you for reminding me of those other choices, yes one choice is going to the bathroom if you have to go", or extra niceties that seem to settle her, "zoe, do you mind if i get myself some water? you don't? oh thank you!" but the dilemma is: do you do the easier thing? or the harder thing and challenge her to face the world and then risk the fall out? do you chose 'safe' or do you chose challenge, and support her through the challenge? do you let her take easy or do you try to grow her?

and then your mind goes back to all those places. and you convince yourself that if you hadn't taken that year off and pushed her to crawl, she would probably still be immobile, sitting on the ground asking for everything to be brought to her. you convince yourself that you do know what's best, that she has some anxiety but that anxiety is not really 'legit' and once she gets there she'll see that and have fun. you feel badly about not having family time and guilty that it's easier to not bring her, and so you muscle up with her kindle in one hand and an LPS in the other, and you force her to go.

and then you pay for it.

it started the moment we insisted she come and it persisted until we got home 5 hours later. in between she pulled all her greatest moves. she jumped in circles and flapped her hands, she screamed (literally), she threw her shoes (crocs, but still), she cried, she required several long one-on-one 'conversations'  with one parent, then the other, she didn't come to lunch, and the only thing that settled her down was watching 'go diego go' on their laptop.

"see! i told you i couldn't handle it!" she says. here comes the next dilemma. is this because she is autistic and right? or is this because she's a bratty 17 year old who just wanted to watch her show? HOW DO YOU KNOW?

i know enough about autism (although i apparently forget it often) to know that she didn't 'mean to' unravel to this extent. that her behavior was coming mostly from a place of feeling unsafe and for zoe, feelings are facts. she can't untangle from them. if her internal system screams 'danger' it doesn't matter what the reality is, she responds in high threat mode. the additional problem is, that i'm human. and i'm on the more human end of the human spectrum. i technically 'know' that getting angry at someone in high threat mode doesn't work, in fact, it makes things worse. reverting to pre-school cartoons is what works.

the human part of me really hates this. the human part of me wants her to live in my reality. wants logic to work, not diego. wants a nice family afternoon with a friend at her pool with out all this. but the mom part of me saw her sitting on the couch watching diego and my heart ached for her. no one wants to throw shoes and yell. no one wants to feel out of control. not her. not me.

perhaps i put her in an impossible situation. i took someone already feeling out of control (for whatever reason) and made them go somewhere they didn't want to go, exacerbating their out of control-ness. the problem is leaving her home alone folded in half like a paperclip all day feels terrible and reminds me that most of this is out of my control. but forcing her to leave her bedroom and bringing her on a family event, is not going to cure her. it's not going to make her world less threatening. it's not going to fix a broken family dynamic where she she dominates a lot of life.

it comes down to me feeling out of control. thus the frenzied college search 4 years too early. and this is where i have to be careful.  is this my psyche trying to 'fix' things? i have a college application age kid who has only finished 8th grade. am i trying to do what i would be doing if my life was like i thought it was supposed to be? am i pushing jude to make up for zoe? am i grappling for 'normal'? and am i struggling to find something that feels like control?

that's messed up.  that's where there real damage can come. so i needed to pause. to x out of that website and to let myself feel the sucky parts of the afternoon and the wonderful parts of it.

henry nouwen says that brokenness isn't beautiful, it's the compassion around the brokenness that's beautiful. 

so i pause. to look at it all. and to hold compassion. compassion for her. compassion for my other kids. compassion for our friends who put themselves in places of discomfort because of our situation. compassion for myself. and again, and most of all, compassion for her.

i must admit, i am verklempt, and i get to say that because i passed a facebook 'test' that said i was 100% jewish after answering 10 questions. i owe that to all you mensches out there who taught me well- (Frank and Coris families- you know who you are).

i am verklempt because of the response to the picture i posted of zoe yesterday. zoe all dressed up for the tim tebow foundation event- "a night to shine". a night for kids with special needs to dress up, walk down the red carpet and be crowned queen. to be not just accepted but celebrated - as you are- beloved. God's beloved child. as she is, as i am, as you are.

 
















the love and care that came out of people from her entire life and even from my entire life was overwhelming. it was over 150 "loves, likes" and over 30 comments of love and support. people who have known me since i was 5, people who have known her since birth, people who have worked with her, taught her to read, taught her to hike, taught her to listen inside and know herself. people who have prayed for her and with her and me. people who have stuck by her, who believe in her, people who have told her consistently that she is valuable and beautiful and capable. people who don't avoid her differences but welcome them. people who have helped me up off the floor of my life, who have given me hope, who have just listened, who have cried. people  who have invited her into their lives and showed their own children that differences aren't scary or to be avoided but included and learned from. people who only know her story, my story from reading about it here. people who zoe has inspired.


















the list of names is like a collage of our lives- people i haven't seen in years, people from all over the world, people i haven't even met, and people i see everyday. it reminds me that we are in each other lives. we touch each other more than we know. we matter to each other. and we have such an opportunity to help each other and be less alone. it also reminded me that while sometimes our belovedness can be lost behind special needs fronts, so can our loss of belovedness get lost beneath our non-special needs fronts.

sometimes we look like we must feel our worth because we look good, or we at least look "normal". but we so often don't feel our worth. we so often loose our awareness of ourselves as beloved- as we are- because inside, we feel and see our own handicaps that mar our believe that we are loveable.

i've written before that my two fears as a child were that God would "make" me be a missionary, and that God would give me a child with special needs. hahaha. well, here i am with both now true.  why did i fear these things? safety. that is why. one, the missionary thing, was about fearing being in dangerous places, places with less security, less control, more risk. the second, was also about safety and control.

as a child i had a 'bleeding heart'. i felt for those who were different. i thought i was empathizing. that i was compassionate, but what i felt was pity.  i was treating people with disabilities not like they were like me, but that they had my sympathies because they were not like me. i'm so ashamed to write that, but it's true.

to pity is to feel sorry for or compassion for someone suffering.

why was i assuming that people who may look different or be differently-abled, are suffering? and was i assuming that all those with an intact body, clear speech, a smooth gait and no intellectual challenges are not suffering? 

i think my pity was about my own shame and my own fear. 'what if someone sees how disabled i feel on the side?' what if i couldn't hide it, and my challenges or weaknesses or differences, were out there for all to see the moment i entered the room?'

i saw people with differences or special needs as fully exposed and that was terrifying. as i've done a lot of internal work over the past few years, i can see how much of me i hid that i believed was unacceptable. how i picked through the parts that i would show, and tucked away the parts that brought me shame. what if i didn't have that option? how scary is that.



















having zoe has changed that in me. i don't pity zoe.  i have moments where i feel sad with her, when i hear and see her frustration and i so wish i could take it away. but i also have moments when i feel a tinge of sadness about something in her that she is not sad about- about her shoulder that sticks up and she can't put down, or her limp when she walks. and what i've learned in those moments is that they're about me not her. that tinge comes from my deep and often hidden insecurities - my interpretation of how i would feel if it were my shoulder and my limp. it gives me an opportunity to pause and inquire inside what parts of me are afraid of exposure? it gives me the chance to reflect on my brokenness, and to see myself and her in a different light. a light that shows we are the same.

some of the most beautiful  or whole looking people, if turned inside out, would look empty or crippled. and some of the most scarred people turned inside out would blind us with beauty. it speaks to our bodily limitations and the possible freedom of our souls. we miss the point, we get it wrong. we look at the frame and miss the artwork.

so God, who knows what is best for me, gave me the gifts of being a missionary and having a girl named zoe. the gift of seeing the world differently and learning to see people differently. to see wholeness and brokenness differently. to let go of safety and control and trust Him. 

but now i'll stop the long speil and the kavetshing and thank all of you menshes for your love and support and bid you shalom.

yesterday i lost it. not out loud. just inside.
it was zoe. again.
it was not that big of a deal. not that out of the ordinary. but it was a straw breaking moment for me.

it was 1 pm and she still hadn't brushed her teeth. it's not that her delayed brushing is this horrible thing or the end of the world - it's that her reaction to my asking became that. something minor and simple, something that should be a regular small part of her day- it becomes this massive monster of a thing.

let me explain the straw-breaking-the-camel's-back-ness of having a special needs family member. the camel's back is perpetually full. battened down. layer after layer. no more room in the inn full. it's packed with all the little holding of things together. all the accommodations that everyone makes all the time. all the put up withs. the things you overlook, the exceptions, the things tolerated that you wouldn't tolerate in anyone else. it's packed with the emotions that go with this. the grief. the fatigue. the gearing up for each something that you know will likely cause a meltdown. the asking of yourself, again, 'do you have it in you', and knowing that the only answer you can give, that you have to muster up, is 'yes', even if you don't. those are the bags on the camels back.

so sometimes it just takes something so small as the tounge sticking out, yelling 'i hate you! no one knows how i feel, can't you see i'm struggling?' refusal to brush teeth in mid-afternoon, that breaks you.

yesterday breaking me meant i indulged in a 30 minute internet exploration of housing options for autistic young adults. i let myself go there. i let myself feel that possible freedom that could come from not living with her. i told myself if things get too bad. if it becomes too impossible. if the other kids are suffering- there could be options.

to be honest, sadly, there aren't many. and the ones that are, are super expensive and located on the other side of the world. i just wanted to know what was out there because sometimes the answer to that internal, daily question of 'do you have it in you' is a resounding 'no'.

today i got up early and prayed. i exercised and mike helped with her morning routine. i let the day be full of accommodation and overlook, and inclusion. she spent the day with me, not off in her room, but next to me.

there was a moment when we were eating lunch, when i was reminded again of why i love this girl so much. on the table was a tiny, lego dog belonging to her brother. zoe loves tiny things so she was holding it while she ate and when she was finished looking at it, she carefully put it on the table and walked it across to join the other lego pieces. she didn't pick it up and move it, she animated it silently to herself, somehow respected it's toyness. maybe that makes no sense to anyone else but me, but it was enough. it was her being herself. her uniqueness on display. her attention to the things that matter to her. it was like i could see into her world for a minute and i loved that.

tonight i found her lying on her bed. i went in and lay beside her and rubbed her back. i could feel the knotted muscles and the curve of her spine and her left shoulder raised and tucked wing-like by her ear. i remembered rubbing her back when she was just a baby, and a little girl and wondering what life would feel like in her body- from her skin. wondering what her experiences would be? what would challenge her, pain her? what would break her heart.  i felt such a deep love for her and i wondered why it can be so hard to forget. to get lost in the bags on the back of the camel. to get lost from my perspective and forget her personhood. tonight, it broke me in a very different way. it was powerful. it was beautiful.

i began to write instinctively on her back, ' i-l-o-v-e-y-o-u'. she said, 'i know you just wrote that you love me, why?' 'because i do!' i said. and i told her. all those reasons - those completely special zoe reasons- her humor, her trying, her toy dog walking across the table, her expressions, her putting up with my failing to see her as she sees herself, my failing to know her behind and beneath all those camel sacs. and as i lay there rubbing her back, all i could think was that i would never, ever want her to go away. that i wouldn't want to miss out on really knowing her-and these moments- these little times that make the weight of the baggage lighter. that make room from more straw.

i used to write a lot. that was 6 years ago. i would sit on my back porch at 5pm, with a cold glass of white wine, listen to pandora and i would write. my kids were 3 and 5 and 11. the homeschool day with zoe was done. the boys had had their naps, eaten their snacks and everyone would play outside or sometimes watch 'noggin', which was fine with me and far enough away from the porch that i didn't hear it. i would run here to write. for solace. i would write because i had a lot to say. i would write because i needed to. i would write because i could.

i. miss. that. hour. truth be told, i miss that glass of wine and i miss pandora's music. i miss that porch and those giant water oaks that shaded it.  i miss those ages when people didn't have 'devices' and didn't talk back and came to me for a hug not with a request for something else to eat. i miss not having to run back and forth to school to pick up kids from sports and play practice. i miss not having house help and not having guards- the spaciousness that comes from just me and my kids.

that hour was a time for me to breathe. to remember. to appreciate. to make lemonade with life's lemons.

right now, i am in the house alone. completely alone. it happened accidentally and it's fantastic. i can't remember the last time i was completely alone, but in sitting here alone, i have realized how much i have missed it. i also realize how constantly noisy my life is.

last sunday the sermon was on sacrificial giving. primarily financial giving. about tithing and giving to others. it was a challenge to think about what sacrificial giving would look like. living in africa, we are surrounded by opportunities to give. we are surrounded by need. my perspective of 'enough' is in comparison to 'not enough', not in comparison with 'more than enough'. we are constantly bombarded with people who have less than we do, and with the knowledge that one latte is someone's daily wage. it's a hard thing to live with. we are all called to tithe and we are called to give on top of that. we do the best we can. we try to listen to the Spirit and be obedient. i'm sure it seems schizophrenic at times, but for me the greater challenge is not having a hard and fast rule about extra giving but inquiring of God and listening. we are also missionaries. we've given up some things to come live here, there has been sacrifice, and people are making sacrifices to support us. so what do we do with sacrificial giving?

i began to pray about it. and as usual, God had a bunch of good things to say. He reminded me that it's not about my money, it's about my heart.  it's about detachment from things. things that i may cling to. it's about trust- and trusting Him not myself to meet my needs. it's about living intentionally not fearfully or defensively.

so i asked if He could please be more specific and as i reflected on what i'm attached to or what i crave and cling to, for me it's not money, it's time. He asked me to look at how i could sacrificially give my time.

now my kids are 10, 11 and 17 with special needs. and there is another one who's 7. now they are big and the house is smaller and they take up a lot of room and a lot more energy. they have these amazing opinions about everything- all of which must be shared- even their opinions about me (not usually asked for). they want to tell me about every single dream they ever had in great detail, they want to share each minute event in their plants vs. zombies game, and they want to recount every tv show they've ever seen, and quiz me on the ages of various actors. honestly, i love them, but 'i don't care!'.  it's painful! they still give hugs but there is a lot more asking for another bowl of cereal or a ride somewhere. but for me, mornings have become the worst. i stumble out of bed after jude has woken me and before i even have coffee i am immediately expected to listen to three people telling me there is NOTHING to eat, and asking the location of lost uniforms for the game that day, or help with a costume for 'spirit week' "but what am i going to doooo? i have to leave for school in 15 minutes!" (i don't know why didn't you figure that out last night when i asked if you had everything ready, instead of yelling 'of course i do!' when you clearly didn't). the noise of life.

sacrificially give your time. give it to Me. give it to them. that is what God said and these days i'm all about obedience because i've tried the other way and it doesn't work. so today i got up at 5:30. that's an hour and a half earlier than usual. i had coffee before anyone was awake. i got myself ready for the day, read and prayed and watched the sun come up- in silence. i figured out breakfast and lunches before anyone was awake. i was totally ready for the chaos- uniforms, spirit week, bring it people! and they did. but it was fine. it was calm (er). it was an opportunity for true giving and in doing that, i was given the gift of stillness, of that sunrise, of a quiet cup of coffee.

people grow and life happens and sacrifices look different at different seasons as i cling to different things and then am reminded again, of the letting go of them. in the sacrifice, the release, is the freedom. and maybe in starting my days like this- i will somehow find my way back to here. back to the porch at 5pm with a glass of wine, beside the banana plants, with my now big children coming and going. to breathe. to remember. to appreciate. to make lemonade with life's lemons.