Tuesday, October 4, 2016


i started the day writing about quail. about the extra provision of God to the isrealites in the desert and how there can be seasons of not even seeing the quail because we are pretty unhappy about being in the desert. so unhappy that we see provision as an expectation. so unhappy that quail looks like a lot of work and a reminder of where we are, which is in a place where there is no fast food- pre-prepared anything.  i was hoping i would land somewhere good at the end of writing as often happens- but i'll tell you the truth....i've landed right back in my life.  and to be honest, my life is the last place i want to be right now.

i'm pretty sure that the term 'special needs' was invented by someone who didn't have a child with them and was an eternal optimist. or that 'special' stands for 'Some Particularly Extra Challenging Insufferable and Long lasting' needs. those are the needs we are talking about.

i'm writing this here because i think there are a lot of parents out there who may feel this stuff and never say it. they also may feel this stuff somewhere inside but not allow themselves to even breathe it into a thought- because it feels like betrayal. betrayal of the darkest kind.

the feeling is so convoluted and distorted and sharp and pointy. it's everything all mixed together- it's sorrow and anger and love and hopelessness and hope and exhaustion and fear and poignancy and blessing and terror. it's loss and forever trying to let go. it's acceptance and forever trying to accept. it's hours and hours of tears and what if's and why didn'ts and what now's. it's regret. it's intense guilt. it's lack of understanding. it's ugly and beautiful and awful and good. it's real. too real.  it's heartbreaking again, and again, and again. and it doesn't stop. it doesn't stop.

i know that 'special needs' looks like a million things and i'm only looking at one part. i'm looking at autism. and i know that autism looks like a million things and i'm only looking at one girl. but it's my girl.  i'm looking at and living with someone who sees and feels and hears and experiences things in a completely different way than i do. it's like living with someone who speaks a different language but neither of you can ever learn the others tongue. you can sign and point and try but real communication is extremely hard.

zoe is smart enough to know that she is different and that makes her feel very alone. and people who are alone often get depressed and people who feel the world differently often get anxiety. and depression and anxiety make everything worse.

being her parent is probably not as bad as it feels to be her- except that you'd rather suffer anything than watch your child suffer at all. this is part of the problem- i feel like i feel it all for both of us.

in the US i was a palliative care doctor. and i taught palliative care to medical students and residents. and a lot of times when i would teach, students would express the fear and frustration of not knowing what to say to people who are at the end of their life. we talked a lot about not saying but being. about being present. about non-abandonment. about never giving up on someone. of being brave enough to walk with someone to the end. because no one wants to feel alone and especially when things are scary. and no one wants to be given up on.

i just went into her room. she'd had a meltdown about an hour ago- over mike taking away her bambi plush toy because she was being mean to her sister. i knew she'd be in her bed. i knew she'd be sleeping, and i was right. so i climbed in bed with her and gave her a huge hug. she told me to get out. i told her no. she said why. i said because i want you to know that you're not alone.

she asked if was crying and i said kind of. she said why. i said i'm sad. she asked if i was sad for her and i told her i was sad for both of us. she asked if i was giving up on her. i told her never.

that's all it can be sometimes. be together in it. the unknown terrifying thick of it and be honest and real and try. it's about the same things we all want when life feels over in someways - we want presence. we want non-abandonment. we want bravery and belief and truth. we want to never be given up on. and that part i can do. at least for today.

thanks for listening.

Friday, September 23, 2016

outside of the box

                                                                 photo  The World

we've been bumping into the edges of things since the beginning with zoe. try as we may have, life with her hasn't fit into the box that most of us live in. everything has demanded out of the box thinking and creativity and flexibility and trial and error just to stay in the corner of the box. there wasn't a rule book. there wasn't a clear 'plan b, or c, or d'. there was mostly responding when things stopped working.

like this year. when school stopped working. we were all trying so hard- to flex and create and think and try- to make a plan g. but then we had to stop. we had to climb out of the box. and that is where we found her. 

when zoe was 10 we came to uganda to see how it would be for her and for us to live here. we went on safari up north and on the game drive we came to a tower of giraffes. giraffes are magnificent. there is almost nothing like seeing the big animals of africa in the wild. it gives you a sense that you only know so much and that things have been around a lot longer than you have. we all got out of the vehicle and watched these animals walking together across the plain. all except for zoe. she was bent down, squatting on the ground, mesmerized by these little dragonflies that had just hatched.

middle of africa. middle of safari. my girl is choosing dragonflies over giraffes. there was the beauty of her life outside of the box- appreciating something differently, sharing an experience but from an independent point of view- reminding the rest of us that, as elizabeth barrett browning said, “Earth’s crammed with heaven, and every common bush afire with God.”

her world is in many ways a complete mystery to me. i try to guide her as best as i can but i'm blind to what life is like wearing her skin, seeing through her eyes, hearing all the sounds and the words that confuse and isolate. she lives with such a different perspective, such an unshared experience, such a variable bag of what each day brings her- no wonder why she's lonely. 

for someone who thinks so literally, i was surprised when she told me last week that she is becoming a ghost. so matter-of-fact-ly. but i know why she said it.  she moves around but feels invisible, not unseen by eyes, but unseen by hearts, unseen for who she is. she talks and talks, but feels unheard, people know the sound of her voice, but they don't know what is in the words and it becomes so easy to stop listening. she feels unknown and not being known is the loneliest of lonelies.

i'm guilty of this. of being so overwhelmed by her out-of-the-boxness,  so tired of the effort it takes to try and understand her, so frustrated by the truth that is my inability to know her world, that sometimes i stick her in a box, label it 'zoe' and go on. and by go on i mean that i can have an entire conversation with her, in the box i've stuck her in, while doing something else and realize after 10 minutes that i haven't really heard a word she has said.

this is a new beginning. or it feels that way. we've left the box. we've listened and seen and perhaps most importantly we've believed what she's said about life in her skin. it's still taking flexibility and creativity and trial and error and there is no rule book out here. but her days are becoming filled with things she is good at or interested in- helping in a babies home, baking and selling gluten-free sweets, reading and researching things she's curious about and her favorite thing, connecting with a younger fellow 'brain cousin' as he learns to read and speak. we are trying to let her lead us into her world. to respect her uniqueness and to help her find that special path those of us in the box miss out on.

it was hard to climb out, honestly. we were tempted with self-doubt, and the what-if's and the fears of the unknown. but it feels less like we've lost something and more like we've found something. a way to see her better, to hear her better. we've stepped out of the box and joined her. perhaps she was always there outside and the edge of the box was between us. now we are stepping into knowing her on her side of things.

the picture above reminds me of these things. of zoe and her perspective. her gift of seeing beauty that many overlook. in insects and animals and most impressively in the people that so many ignore or walk right past. she sees and hears others who walk ghost-like through their days. who live a different version but know the lonely of not being known as she does.  these are perhaps her greatest moments- the moments the rest of us fail at because we are busy looking for the tower of giraffes on the horizon, or the people version of them. we aren't brave enough to stop and look down. to reach out. to see the value in the smaller less glamorous things.

maybe now she will guide me.


Tuesday, August 30, 2016


suubi means hope. and this picture of my driveway means hope. something beautiful where you thought something beautiful wouldn't be. flowers through cement. life breaking through hard dry ground. the reminder that beauty doesn't need much- only a small crack in the concrete, a spot of dirt, a drop of water, a moment of sun. that is the promise.

zoe is almost 17. it's hard to swallow. it's not just her years, it's her birthday. and what that means. it means planning a party and who to invite and who will come. it means gifts that aren't age appropriate. it means celebrating this girl who i love. so. much. while staring in the face where we are and where we are not.

today i was in game (a target-esque store- african style). after buying cat food, i wander through the toy section to see if there was anything reasonable that i could find for zoe. it was one of those heart squeezing moments. i was in the aisle of pink plastic things and games that say "for ages 4+" and i knew that i could get her any of it and she would be thrilled. i remember watching a video clip from 'america's funniest home videos' of a kid opening their birthday gift and flinging the present off of the hanger in the unwrapping and exclaiming with pure joy "a hanger! you got me a hanger!" as if it were the greatest thing ever. it could have been zoe. she's a great gift receiver. but there i was in the pre-school toy section trying to imagine what a 17 year old girl "should" get for her birthday.

when i was 17 i had a boyfriend, graduated from high school and started college. i had a job and drove a car. i could get myself up and dressed and fed and take care of younger siblings. i wanted things like clothes and music and travel and independence. this is not about me. her birthday is not about me.  except that it kind of is, because it is the celebration of the day that i birthed her. her tiny little 5# body with a broken wing. the beginning of something beautiful that at times has felt like it's had to push through a lot of concrete.

mike found me standing among the pink mini brooms and princess shoes sized for a 4 year old. we had just come from a school meeting with the special ed coordinator where we went over her homeschool curriculum focusing not on academics but on life skills. on ways to support her independence. but these are the things which are most terrifying for her. all things related to growing up.

it would be so easy to leave her here. in her world of disney characters with cartoon eyes and perma-expressions. she would be happy to live in a place where things are painted on clear, black and white, not the confusion of subtle reality. not the nuances of the face and the tones of the voice and the complexity that each of us holds able to be good and bad, kind and mean. it would be so easy to fill the cart with LPS sticker books and barbie dolls and tell myself that it's her birthday after all.

mike knew all this because we live it together and we have our moments as we slide back and forth trying to find that balance that provides her with safety and challenge- acceptance and encouragement, trying to hold that tension of the opposites.

"i know," he smiled, "but she has so many toys."
"so what do we do?" i said back. "what do we get for a 17 year old who still likes to watch max and ruby? whose wishlist is filled with plush toys characters?"
"she wants the hunger games books, that's what we can get her." he said.
"and some of those indian print pants." i said remembering the hanger story.

it's a slow process, growing up. i feel like i'm still doing it. so for zoe, i know it will be long with many steps backwards among the forward ones. but we will walk it with her- holding her hand until she's ready to let go. we will not leave her in arrested development. we will watch for the flowers to bloom on their own- pushing through the concrete. beauty instead of ashes. and there is the hope.

Isaiah 61:3 to provide for those who grieve in Zion-- to bestow on them a crown of beauty instead of ashes, the oil of joy instead of mourning, and a garment of praise instead of a spirit of despair.

Friday, August 26, 2016

letting go

letting go is hard. always. at least a little, and sometimes a lot. there is fear. and what ifs and something's better than nothing. there can be ownership and control at stake (or so we think). there can be identity lost, or other things lost. and emptiness- that feeling of what was but is no longer there. and the meaning in it all, or under it, or hidden in the middle of it. there can be a lot of questions, sweaty palms and curled fingers, and re-grabbing. it doesn't feel good or right, but letting go sets our hands free to see what is next. 

a long time ago, i had to let go of 'normal'. it was a long process with much re-grabbing. for a long time it felt like i was clinging to something that was slipping between my fingers, dripping like an ice cream cone on a hot day. uncontrollable but undeniable. it took years to see that i clung to something that really was never mine. i'll tell you the truth, holding onto the wrong thing brings much more emptiness than letting it go. it's true.

i never thought that zoe wouldn't finish high school. i don't mean that in a judgmental way, it just never crossed my mind. when she was in elementary school and clearly struggling, i figured it was a stage we needed to pass through. i clung to books like "a special education' by dana buchmann who's daughter also struggled with significant learning disabilities, but went on to college. went on to achieve some sort of 'normal'.  "see? that's with in reach." a part of me would say to settle the unsettled bits. but late at night those same unsettled bits would search the internet for the diagnostic criteria of autism, for other syndromes that perhaps we'd missed, for a peek into the black hole of what we were dealing with, for clarity, solutions, for anything that would either give me hope or force me to see reality, depending on the hour. holding the unknown was nearly impossible.

as years went on, zoe went along on her bumpy unique trajectory. and i went along on mine- equally bumpy and unique. perhaps equally lonely. and in many ways, our grasping ate us from the inside out. we did all that we could for her. we made choices and sacrifices. we tried and we believed in her. but what does that mean? what did we believe about her?

did we believe she could do things that didn't appear to be able to be done? did we believe that she would somehow, someday transform into or arrive at this slippery thing called 'normal'? or did we believe in the unknown of her. in the mystery of who she was made to be? 'believing in' can be clinging if we are believing in the wrong thing. and clinging is the opposite of letting go.

life has shown itself loudly enough and long enough to know that 'normal' didn't belong in our hands in the first place- it doesn't deserve to be clung to by anyone really.

someone asked me today if i'm okay- as in really okay- given zoe's challenges this year and her exit from school. it was a good and thoughtful question and i could see the sweet concern in her eyes. ' i am,' i told her, 'i really am.' but i don't know if she could see the truth in that. the freedom in my eyes.

because there is tremendous freedom in letting go. a fullness replaces the emptiness that was feared. a foundness, the lostness. what is better than false control is not having to be in control. what is better than tightness is openness. when clenched hands release, the body can breathe and what was meant to have always been, can finally bloom and grow.

Tuesday, August 23, 2016

mind the (widening) gap

life with zoe has never been easy. it has been rough since the start.
she was small and breech and i had to be induced. she was a sleepy preemie and it took her a month to gain back to her birth weight. at three months she was diagnosed with klippel-feil syndrome. at four months they found two small holes in her heart, by then i had some holes in mine. watching her and worrying about her became my normal. milestones ticked by and she didn't reach them, there was always a delay. rolling over came at 8 months, crawling at 14 months, walking at 21 months. talking was there, but it was parroted and repetitive. she flapped her hands when excited and she was excited over things that other kids weren't. at preschool she preferred conversations with herself in the mirror to conversations with the other kids. she cried and covered her ears when she heard a coffee grinder, a blender, a vacuum cleaner. and those ears could hear only a few notes and know it was django reinheardt. she was not like other children.

kindergarten was hard. it was loud and filled with challenges, like learning to read, and finding your way around, and those impossible monkey bars that everyone but her could do. there were birthday parties that happened with out her, and awkward conversations with parents at birthday parties she did go to about how their child was used to being kind to people with disabilities. friendships were few and far between. homework was agony. but she could find a lonely adult in the coffee shop and make them feel like they were queen.

the years went on like this and we had other children. other children who proved that yes, she was not like other children. things got harder. things fell apart. her puzzle-like world began to come clearly into focus and she knew she was not like other children. and that is scarey and lonely and isolating. slowly, the gap began to widen.

other kids began to ride bikes and ride to town, stretching their worlds of independence. but bikes require balance and coordination and motivation, and town requires a sense of direction. other kids began wearing jeans and make up. but jeans are scratchy and makeup is sticky. and school got harder. it wasn't learning to read is was learning to understand what you read and there were metaphors and symbolism and making connections with other books. characters became complex, they weren't just good and bad like fairy tales, they were both sometimes and that was confusing. and social things got harder. the rules became more subtle. everything was not so black and white. and the noise was still there- vacuums and weed-wackers and bells between classes and ticking clocks. the puzzle was getting bigger and the pieces were getting smaller.

in three weeks she'll be 17.

today is day 4 of 9th grade. or it was. because we have decided to mind the widening gap. to listen to the cries of a girl who is exhausted. whose world for 17 years has demanded more from her than mine ever has me. to be honest that the gap between her and her peers has widened to place where she could fall in and get hurt.  we have decided that what matters is her heart. here laughter. her sense of self. that she is at risk of falling into the abyss of that gap never to return. that we could lose her to our desire for her to be someone she is not. we have decided the best thing to do is stop pinching her into a world that doesn't fit, and adjust her world where we can so she feels more softness than edges. more love than defeat. more success than failure.

so today the three little kids went off for their fourth day of school and zoe got up and got dressed and stayed at home. we met with the school and shared where we are, what we are hearing and seeing from zoe and we all decided to take it very slowly. she will come with her aide for her drama elective, and the rest of the day will be creative learning from home. for now.

the widening gap is hard. it pinches and pulls and mocks. it says "you've failed!" it tries to shame and blame and return you to places of "what if" and "why didn't i". it calls out to your sorest, oldest spots inside - the ones that scream for value in the wrong places  - the ones that fool you into thinking that other people are responsible for your being enough- that identity is grounded in markers of our successes or our kids successes. poppicock and hogwash! as zoe would say.

yesterday after listening long and hard to zoe and her aide about the day, and listening to the voices of the widening gap, i decided to listen to God. i inquired of the Lord. and as usual, i heard the gentle but clear truth pointing me to see where my small self sat in all this. He said things like, most of the world doesn't have even an 8th grade education, and they are functioning and happy. and things like, don't you think i have a plan for her? because i do. and don't you think that it's perhaps and probably a better plan than you could have? 

this is about trust and obedience.

in exodus God commands the israelites to respect the sabbath during their time wandering in the desert. this was the time when God was providing all their food in the form of manna that would be on the ground each morning for them to gather and eat that day. and that day only. anything they tried to save would spoil. except for the day before the sabbath, when there would be enough to gather for two days and it wouldn't spoil. God provided for them to be obedient. He cared so much about their obedience that he changed the properties of the manna so that only on friday night the left overs wouldn't spoil but on every other night it would. that speaks to me of a present and relational God. a God who can be trusted and who will provide for me and give me what i need to be obedient.

17 years ago i was on bed rest. i knew i was having a girl and that we were going to name her zoe which means 'life' and that i couldn't wait to meet her. i didn't know anything about klippel-feil syndrome, or autism and it never occurred to me that she wouldn't go to college or learn to ride a bike.  but i did know this God who i could trust to provide.  i had no idea that the trust would be like the manna- that i would need to trust daily for a portion of grace. and  that i would be given just enough- enough for that day- for that diagnosis- for that parent-teacher conference- for that episode in the grocery store. i had no idea that provision would be in the form of therapists and school aides and seamless clothes. but i did know those everlasting arms that are holding us as we mind the widening gap.

Friday, August 19, 2016


i started to write the day that zoe ate 3 earthworms. i was off on a run trying to regain my sanity, which had been lost earlier in the day while homeschooling her. she was 10 years old.

on the run i thought, 'it wasn't supposed to be like this.' 

i wasn't supposed to be a homeschooling mom. i was a doctor. my life wasn't going as planned.

i had entered a world of sticky thoughts and meltdowns and medications and reactions to medications and medications to manage the reactions. there was music to stimulate the right brain and exercises to cross the midline and gluten-free diets and social groups. there was occupational therapy and physical therapy. there were appointments and waiting rooms and conversations in waiting rooms with other mothers whose lives weren't supposed to be like this either. and there was the waiting.  waiting for the appointment to be over. waiting for things to get better. waiting for the other shoe to drop when things were better. waiting for it to become like it was supposed to be. and the waiting gave time for worrying. worrying about the meltdowns, when and where and if i could only figure out the why. worrying about transitions, about the day, the next day, the year, the rest of our lives. worrying that maybe it never would become like it was supposed to be. and wondering.

the day she ate the worms, i wondered what 16 would be like.

about a month ago she ate a marble while i was watching a tv show with my other kids. she is 16. have things changed? yes and no.

last week i took the kids to eat american fast food in uganda- which is a giant thrill and a huge treat. afterwards we went to the market for a few things. zoe lost it. i mean lost it. it was over a bunny plush toy cartoon character that she didn't have money to buy. it started with a sticky thought- she wanted the bunny, couldn't put it down, tried to convince me to buy the bunny, she couldn't take no for an answer. the next thing i know she is clinging to the rack of sunglasses by the check out line shouting that she won't leave with out the bunny. that she will sell the kindle that she is clutching with her other hand, to buy the bunny. she is shouting that she can't calm down, that she can't trust me, and she is refusing to budge.

when a three year old does this- you can pick them up. people understand. people smile with that "don't worry, we've been there" face on. when a 16 year old does this- you are stuck and people look at you like, "please do something because we don't know what to do".

 6 years ago, i would have been horrified at the thought of dragging her out of a grocery store at age 16 over a bunny plush toy. but that wasn't the awful part.

the awful part was in the car on the way home as we listened to her heart pour out all the hurt and anger and fear and confusion and loneliness that she feels. all. the. time. to hear her tell us that her life is worthless, that her life is a puzzle and no one understands her, that she will never get better, that it will always be like this. that she feels like a grenade waiting to explode.  it just broke me.

it wasn't supposed to be like this. but it is.

6 years ago, i would have been so terrified, so overwhelmed, that i would have let that brokenness be covered up with anger and shame. 6 years ago, i wouldn't have listened. i would have talked. talked over her, corrected her, told her that she will get better, that people do understand her, that there is hope, that it won't always be like this. i would have told her she has people who love her and she doesn't need to be afraid. i would have denied her feelings and told her the things that i needed her to believe so that i could be okay.

but this night, i listened. i just listened. i said 'i hear you' and 'that must feel awful' and 'that must be scary and hard' and 'i'm here for you'. when we got home. we sat together with mike in the living room and the kids recounted the drama. zoe slowly calmed down. i looked at her, crisscross applesauce, snapping her hands like she does when she's nervous, and i was overcome with love for her. and then i started to cry. and zoe started to cry and she sat on my lap and we wept.

it felt like we wept tears that had been denied time together. like we finally could be in a place of feeling it out loud- and see each other in the hurt messiness of it and know it's shared. we were letting it be known that this is what it is- laid bare. it is hard and lonely and sad and scary and overwhelming.

after a while we got up and got ready for bed. i read her mog the forgetful cat which always makes us laugh and tucked her in and prayed remembering lamentations, "because of the Lord's unfailing love, we are not consumed! His mercies are knew every morning."

sometimes God allows cartoon bunny plush toys to show you how far you've come, but that 'far' doesn't look like you thought it would. 'far', i would have thought, would be the absence of bunny plush toy meltdowns. but 'far' is bigger than that. 'far' is allowing for truth to be spoken and felt and shared. 'far' is letting it be painful because it is sometimes, and letting that be alright.

so instead of fighting that it wasn't supposed to be like this, 6 years later, i can see how i am becoming who i am supposed to be, in this which is my life.

Sunday, August 14, 2016

owning your slippers

it has taken me a long time to realize or to admit that i have made a choice to live on the other side of the world.

“The key to your happiness is to own your slippers, own who you are, own how you look, own your family, own the talents you have, and own the ones you don't. If you keep saying your slippers aren't yours, then you'll die searching, you'll die bitter, always feeling you were promised more. Not only our actions, but also our omissions, become our destiny.”abraham verghese, cutting for stone

it's time to own my slippers. or more appropriately, my flip-flops.  i've been wearing them for years now and i've been wondering. wondering things like, are they comfortable?  are my kids happy that i wear them?  will i grow tired of them? are they my style? are they worth the price? i mean, i don't have to wear these flip-flops. but i have been wearing them and watching as other people move on to shoes. i've been wearing them and wondering at what point i will get so sick of dirty feet that i too will trade in my flip-flops for some shoes.

i've known inside myself that these are my flip-flops since i was 17 years old and went to kenya. i didn't know when or how or even why. i just knew. but knowing it and wearing them are different. and trying them on and buying them are different too. 

because of that knowing, five years ago when we moved here it felt like an easy choice. it felt like one of many choices we'd made in our lives- moving to atlanta, moving to san francisco, moving back to atlanta. moving to africa was another move, just a bit farther. only it's not. it's on the other side of the world and a different time zone, and i mean that in decades. maybe it would be another move if it were sandwiched between moves. if after 3 or 4 or even 5 years we decided it's time to move home and buy shoes. but look, 

i'm still wearing these flip-flops and i think it's time for me to own that i'm wearing them. 

i'm doing a lot of work these days on listen inside and holding my hands to be open to the mystery. i'm working on, as richard rohr says, 'the sacrament of the present moment, that will teach us how to actually experience our experiences, whether good or bad or ugly, and how to let them transform us.' 
i'm working on accepting that 'reality requires more of a both/and approach, than an either/or differentiation.' 

i'm working on how to wear these flip-flops, and how to wear them really well. 

sometimes they hurt if i'm walking far or too fast, so they help me to slow down. 
sometimes my kids don't like them, they prefer to be barefooted or shoe-ed, and that's okay.
sometimes they don't match what i'm wearing, sometimes i want something sparkly or heeled.
and sometimes i get tired of dirt stained feet. 

these things are true- but that doesn't mean their not meant for my feet. 

we need to own our choices. owning them gives the freedom to embrace them, live fully in them, invest, engage, and grow in them. bloom. thrive. 

here i feel most myself and least like i should be on to the next thing. i love what i see when i drive along the bumpy road. i love the heat of the sun on my arm out the window. i love the sound of the night and the smell of burning things. i love it in a way that probably makes no sense to people who like to wear sneakers. but here i'm no longer searching for other shoes. 

and maybe that's how i know the slippers are mine.