killing me softly

that's how it felt this morning.  she was killing me softly. or maybe slowly- but none the less, killing me.

i might be being overly dramatic- it's possible- but do we REALLY need to have the conversation AGAIN about how you're bored with copy work, how you think it's stupid, after you've sat at the table making scribbly letters for 15 minutes.  Really? it's two sentences to copy - how boring could it be?

it was one of those mornings.  and the thing is- i mildly care about her learning to write- i mean- it's more important that she learn to type- but i care about her learning the other things that go along with copy work.  things like- time management, attention to detail, staying on task, sticking with it even if you don't like it- having pride in your work.

maybe it was a morning like- the wii game (see post reconnecting the circuits) where her processing was off- but i think not.  because after many patient attempts to cajole her into doing her work- including a) the understanding sympathetic approach, b) the humor approach, c) the understanding but firm approach- i was left with d) DO YOUR **#***!!##**  WORK!!!!.  and the unfortunate part is, that's what always gets her to snap out of it and become full of remorse and in 15 minutes she's finished her copy work and done her math- and done them pretty well.

and this is what is killing me softly- or perhaps loudly.  i don't want to have to yell at her- i don't want to be that person.  even more, i don't want to establish a pattern where she responds only to anger- where she needs someone else to motivate her- and in a negative way.  i don't want a pattern of her requiring feeling bad and guilty and ashamed- to get it together.  because it can become that all those negative feelings - form her self image.  yikes.

the funny part of this was the copy work itself.  it's a quote that says :

"People are successful at the things to which they devote most of their time and effort.  It's a question of deciding what's important in  you life and working hard to achieve it."

i think she'd made her choice.  and copy work wasn't on her top 10.  unfortunately googling powerpuff girls won't get you very far in life.  (which i impulsively shared with her).

i asked her why it took yelling for her to respond.  she didn't know. i told her i was done yelling.  she can just sit and do it until it's done- the consequence of taking a long time and doing silly letters- is that she'll have to sit there longer and redo it- not that i would come through to realign her with shouting.  i told her that you can lead a horse to water but you can't make him drink.

she gave me the confused face. and i was again reminded of the difference between our brains.  she is baffled by metaphors- she is literal- concrete- specific- so why am i talking about horses and water in the middle of this conversation? 'killing me softly' would be a challenge.  i am the complete opposite- to a fault.  i use and abuse language and i love it.  to me, words are magical- you can transform them- sometimes even make them up- you can manipulate them - take them out of one context and try them in another and it can work.  or get  you in trouble.  words are musical and sentences - well, you can hide things inside of them.  there are layers of meaning- in the order of our words, in the spelling, in the emphasis, in the punctuation.  i love this.

but i forget this all the time.  i speak to her in metaphor- i use random associations and make crazy links between things that probably don't go together.  it's just who i am and it's hard for me to remember that this use of language is hard for her to understand.  but maybe it's good- i usually explain it- i usually don't get frustrated- i usually can laugh at myself for generating the silly phrase or association- i don't criticize her for not knowing it- for missing it- i can't expect people to climb inside my head - especially zoe.

right now it's warm and stormy.  i'm again outside on the porch.  the trees are wiggly, the sky darkening- i can smell the rain coming and the air is talking.  before the storm- when it was a calmer, sunnier kind of beautiful- i made the kids go out and play for an hour- i told them i didn't care about homework- i cared about them moving their bodies and using their imagination- i told them to make something, find something new, build something, fight something, climb something.  i told them to lie down on the ground- to smell the earth- and to look up- through the leaves on the holly tree that holds her leaves year-round- and see the patterns of the sky- i told them to pay attention. to embrace their worlds- because it's in those moments- under trees or up in trees under the sky- that you figure out what's important in your life and what you want to devote your time to - where you should spend your energy. outside is the magic.

don't close your eyes

i'm home sick.  that virally fevery thing when your spine hurts and the nerves ache and you have that creepy chicken skin feeling.  when i get sick it give me such pause, as i think about the lives of my patients- about how hard it would be to live sick.

it's again beautiful outside and i keep wanting to get up and pull a mattress out onto the porch and sleep out there- but then i fall back asleep in my bed. i'm planning on it though- after my next nap.  mike and the kids have gone to church- so i decided to listen to an andy stanley sermon my brother had sent me a few months ago.  it was so good!

he talked about the overwhelm we all feel  in this giant global world, where we all know each others business.  we hear about all the sadness and the wrong and the disasters and the wars and the hunger.  our response to this is often to shut down- we feel helpless- swallowed by it- and in our smallness we hide or avoid the need.  we don't give a dollar to the homeless guy because there is another one down the block and then we'll just keep giving dollar after dollar.  so we decide things like "i only give my money to legitimate causes".  we make assumptions like " i don't give to street people because they're just using the money for drugs".   we look for ways to manage our own sadness about the problems of the world.  sometimes we close our eyes, walk on the other side of the street, turn off the news, don't answer the phone.

his point in the message was: "do for one, what you wish you could do for everyone."  his message was to 'go there'-to help 'one' -  to dig deep, go long, and invest in someone- with not just your money but also your time.  that caring on that level for someone will change lives- it will make a difference. it will make a difference in their life, but it will also change ours.

a few years ago the ONE campaign was begun as a grass roots advocacy program to fight poverty and preventable disease in africa . the campaign idea was we are ONE world- and we should all care about and for each other even across an ocean.  and that is so true.

i love that we can double the meaning of ONE.  ONE world, and 'do for ONE- what you wish you could do for everyone.'  and if we all did this- if we all invested in one- wouldn't that begin to change our ONE world?

one year

it's the blogs first birthday today- i still hate the word blog.  there are so many other better sounding words- bliss, blue, splendid, sky- actually most words.  but that's ok.

last year i started to write because i needed to.  it started on a day when i felt pushed over the edge.  the day that zoe ate those 3 earthworms that she'd dug out of our backyard. and i finally felt the drama and the humor of our lives in such a way that i couldn't not say something, to someone.  so i jumped in.  and it has been birth-like. because giving birth is a creative experience- perhaps the ultimate creative experience.  out of your body comes another life.  there is mystery and unknown and getting to know and it's the beginning.

last night i was at my book club.  i really shouldn't call it my book club- because it was the first one i'd made it to all year and i only made it 1/3 of the way through the book we were reading- which was olive kitterege.  we talked about how all the characters you meet in the book exist in attempt to define olive- and then you never see them again- there is no wrap up. most of the characters live sad lives- they've had trauma- they are damaged- most of the marriages break up or are marked by infidelity- there is little redemption.  olive remains a hard, heavy woman- married to a man she's not really that in love with- who seems to fear her and love her but perhaps out of a sense of 'ought' or nostalgia.  olives process seems to be that she gains insight into herself- see's what others really thought of her.   most people in the group (who actually read it) didn't love it- didn't feel connected to the characters- and were troubled by all the sorrow. 

i like books and films where there is redemption- or growth, progress, or transformation. i also like when the characters are woven together and you see how they've affected each other- when you see their relationships influence their development.

driving to work today i was thinking that we never really know or stop to appreciate the impact we can have on one another.  those little things like holding the door for someone - or paying the toll for the person behind you on the highway- random acts of kindness.  we never know where people are at a given moment- and how one look, one smile, one extra word of thanks- can be a defining moment for someone else.  the guy on the over-crowded bus in costa rica whose arm rested on mine for a few stops-that 'accidental', nothing, event at a time when i was alone in another country, longing for the presence of another, made me feel hopeful- less alone.

and i wonder if the answers to our prayers aren't even for us- maybe they're for someone 4 steps removed - who needed to see a miracle or not even, who just needed the outcome of what ever resulted from our answer.  there is a magical interconnectedness to our lives.  there are no accidents. maybe the people we sit next to on the plane or meet for a few days or randomly bump into- are little opportunities- to influence each others lives.  and i wonder how many of them are missed opportunities. 

 zoe doesn't miss them- she's like a magnet for them.  she lives in the moment.  she pays attention to people at the cost of almost all else. she's never in a hurry.  and in this, she gives and gives and gives again.

a year ago i started writing to get some of the mess out of my head- to share some stories that isolated me, with the hope that others would feel less alone with their messes.  and in this birthing of something new i have come to see my life, all of it, in a different light- a brighter, more hopeful light.  and i have come to see zoe differently, as one who can teach me as i teach her.  i'm beginning. i'm moving into acceptance of certain things- and i'm accepting continued dependence-
to be still and know.

God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.

just because you are

right now the boys have the voice of my childhood summers- the noises of outside playing, barefoot, warm, finding themselves in sticks and leaves and rocks- coming home with dirty feet and hands - with the smell of air and grass and the goodness of life.  i'm mildly envious.  the other day i climbed a tree to free a batman mask they'd tossed in the air and had gotten stuck.  the spontaneity of jumping up and grabbing the branch and swinging up- inching along- hands hot- stomach showing with the stretch of my body- bark in my eye- but connected with the tree- it felt so good (and won me instant heroism).  i could live outside- fo' reals'.

last night mike and i went to a panel discussion on human rights in a pluralistic society. it was frustratingly stagnant- full of politically correct language and people speaking to sound intelligent- but empty of true questioning- mostly empty of passion. but there was one man who spoke with a grass-roots knowledge and the perspective of years with his white hair and tanned skin- someone who lives in the trenches- who lives with risk and danger- for the sake of others who don't have a voice.  i loved him.  i felt (or assumed) his frustration at this ivory tower dialogue- that sounded pretty and kept peoples feet clean.  at the end- when i was extremely ansty for someone to shout something about how we hadn't really learned anything- how we hadn't been changed- or even challenged- he began to ask "what are you doing about human rights in this world?"  and students began to share about the meetings they were having, the human rights interest groups that had formed.  but he was relentless,  " what are you doing about injustice?" i so got it.  no i'm not claiming to be an older south east asian human rights advocate - but i understand that feeling of being overwhelmingly frustrated by the endless talk and talk and intellectualization of other peoples deep suffering- and our lack of willingness to humbly find our role in it. i sensed his sadness in the complacency of  not moving beyond words and into some sort of action.

afterward, it drove us to discussing our connectedness in this issue- and our differences, which was weird and kept us up too late. but it left me all day thinking about what are rights? how are they related to responsibility? how do we function as a world community around this issue? should we? do we?

and it raises issues of justice and equality, and the hierarchy of needs- and the possible universality of poverty- poverty of what? poverty of the material? of the spirit? of the soul? of community? and it raises questions of inherent human value- and what do we deserve just because we are a person?

after zoe's orthodontist appointment we met mike for lunch and saw his beautiful, new, cool architecture office.  at lunch mike and i were back on the topic of how we should define human rights- and zoe was interested in this- she thought it was only fair that everyone should have food.  so i asked how we should make that happen? "well we could take the cold food and put it in a cooler, and the rest and put it in boxes, and send it to the places where poor people live."  yes, zoe- give.  if you have two, give one to the person with none.  but who are the poor exactly? and where are they? and how do we feed the poverty of spirit?  how do we feed the de-valued person?

as we walked back from lunch we passed a guy setting up to play the saxophone on the sidewalk. he had his case open for dollars and change.  zoe couldn't resist.  she stopped and listened and told him his music was wonderful- what was his name? how did he learn to play so well?  who had taught him?  what was his favorite song to play?
she's so good at touching the lives of others- of giving value- of reaching into places of possible need.

last week when i gave my lecture on homelessness- someone asked the question- "what do they want? what is it that the homeless want?" i was kind surprised and tempted to say- what don't they want? their need is great- for housing and food and access to health care.  but i paused and said that i think they wanted to be treated with the same dignity, the same voice and expression, the same hope and faith, that you would have in the president of a large company- or a colleague- or your dad- because they are human- they have inherent worth - they were created in the image of God and are loved by that God, just as you and i are.

so that just might be it- our human right is to be valued as a child of God.  and zoe's gift is her pure vision - her ability to value with genuine equality.

hearts and thoughts they fade away

i just dropped off the kids with my mom for a few hours- and i have that same "what should i do first" feeling that  i used to get when i came home after a night on call during residency.  when i finally arrived home after 36 hours straight in the hospital.

it was a feeling that might be even better than christmas morning- because you're kind of high from sleep deprivation.
it was the feeling that the world is my oyster. the possibilities endless.
should i eat? sleep? take a shower? play with zoe? hang out with mike? go for a run? go to the market? walk up to haight street? (i was living in san francisco).  because doing anything that felt like i was a normal person again was fantastic.  i had my life back- after those endless hours of others needs (appropriately) being first- of grabbing food when you could, sleeping for 20 minutes in a chair, not being able to go to the bathroom for hours when there was an emergency- which was often.  when you're on call- the adrenaline is on - the stress hormones are up- so, coming home, turning off the pager, and not having to worry about anything was ultimate luxury.  mundane tasks were a pleasure.  sitting on the couch and watching dragon tales with zoe was heaven.

and i some how managed to forget that in 12 hours it would begin again- but only for half as long.  it's amazing what we can get used to. what we can survive.  what 'normal' can look like.  i can't imagine going back to those days.

there were a few times when, in the middle of the night, i would look longingly at a sick person who appeared comfortable in bed and wish i could trade places.  i'd think- so they have pneumonia- not so bad- i'd take it if i could just get some sleep!  isn't that terrible.

there were other nights when you were part of something big- you nailed the diagnosis early- got the treatment started and saved a life. or nights when you were really able to spend time with a patient who was alone and scared and had all the night terrors and worries that come on at 2am- only their worries were grounded in their terminal cancer.  nights when you "cross covered" someone else's patient and chose wisely and the 'crumping' patient did well- when the steroids worked- when giving blood was the right thing to do- when getting the stat CT scan gave the answer.

and other nights when you ran the 'code' for an hour- following the PEA protocol down to sticking a needle into the area around the heart in a blind attempt to drain a possible pericardial effusion, in a last ditch effort to save a life you knew 30 minutes ago was gone- but you couldn't give up. nights when the giant blood clot straddling the main pulmonary arteries refused to be broken- and you couldn't squeeze blood fast enough into someone bleeding out and you had to make phone calls in the middle of the night to new york to tell someone you're so sorry- you did everything- but their 29 year old daughter was now dead.   and so leaving that world- emerging from those halls and smells and florescence lights- felt like leaving a battle field- sometimes victorious, sometimes in failure.  gaining perspective was hard- because you had little time to breath- to step back and to reflect.  you were afraid if you did- you'd break to bits. because you're facing brokenness- you're looking death in the face- you can't run away from the deep suffering all around.

so you jump back into conversations about play dough and mermaids and life at the office for your husband- and if the electricity bill was paid- and what kind of food to eat.  and you crave a good glass of wine and a "friends" episode.  and you dream of being a baker or a window washer or something with less consequence- something that doesn't wake you up at night worrying that you wrote the order wrong- and accidentally someone died- dreaming that the worse case scenario is burned bread- or window streaks. 

humor helps.  and knowing other people who get it.  who share the pride and fear and anxiety and joy of helping sick people. and there were times when you needed to surround yourself with these people who lived it with you.  but many and most times you needed those who didn't.  those who'd known you before you wore green scrubs most days- before you had lost connection with what was happening in the world, before you knew the lab values of 15 people by heart.   those who lived across the bridge and taught yoga and hiked- those who came bearing brownies and small gifts for zoe, and necklaces, those who dressed funky and worked in sushi restaurants- those fantastic friends who didn't need to get it- and loved me even when i had nothing interesting to say- when i would fall asleep during dinner at a restaurant.  those who'd loved me before i'd even wanted to be a doctor- and stuck with me through the thick of it.

community gets you through.
because  we all need reminding of our old parts when we're beginning to wear a new part.
it's true for all of us- in each stage. for me getting used to life with zoe's needs, homeschooling, moving to africa.  it's true for my patient with ALS- not wanting himSELF to be lost in his disease.  it's true for my funky dressing, sushi restaurant- working friend, who is now a stay at home mom.

so i end with pearl jam

lifetimes are catching up with me
all these changes taking place, i wish i'd seen the place

hearts and thoughts they fade, fade away...
hearts and thoughts they fade, fade away...
i swear i recognize your breath
memories like fingerprints are slowly raising
me, you wouldn't recall, for i'm not my former
it's hard when, you're stuck upon the shelf
i changed by not changing at all

reconnecting the circuits

spring in february is fantastic.  my yard is covered in daffodils, the trees are really budding, i'm spending most of my day outside on a porch- loving it. if only i could move my bed outside- i would sleep there- right there under the moon.

we had a good day.  a day of peace.  zoe came down stairs dressed instead of in her pajamas - without being woken up- without clothes spread out the night before, without being reminded.  it might be a first.  when she arrived downstairs i was on the phone - raising my still hoarse voice with a broken system at work- trying to get something ordered and pushed through the bureaucracy- for one of my patients - the one with ALS.

i had gone to his appointment with the ALS clinic on friday- to make sure he was getting what he needs- that things weren't falling through the cracks.  it was long and hot and he looked much worse than 3 weeks ago when i last saw him.  now he can't hold up his head- his arms are stiffer- he can't lay down without feeling like he's suffocating.  he looks like he's aged 15 years in the past 6 months.  looking at him, you'd not think he understands everything- perfectly- which he does.  he is literally trapped in a body that can't communicate. he has no speech.  he can't eat. he's losing his ability to write.  he's beginning to lose his ability to breath on his own.  it's really hard to see.  i know he needs me to talk to him as i would anyone- and i do.  he needs to feel like a 59 year old man- not a preschooler- which is how he is often treated.  we had to make plans- to get him some breathing assistance- to get him to be able to sleep at night.  i can't imagine the frustration he lives with.


zoe waited patiently for me to finish the call and got herself some cereal- asking all about the patient and what caused ALS.  after rocking through math she wanted to play a frisbee game on the wii.  she plays this maybe once a week (ie: it's not new) and she's pretty good at it.  and the weirdest thing happened and i had this incredible insight into her life.  in this game you move your arm as if you're throwing a frisbee and hold down two buttons which you then release when you want to let the frisbee fly.  right away she starts calling to me, telling me it's broken- the frisbee won't release.  but it will when i do it- so i realize that she's not letting go of the buttons and i remind her.  i'm really surprised that she has forgotten this.  well, this goes on and on.  she can't get the message from her brain to her hands- they just won't do it.  i was baffled.  i can't imagine how frustrating that would be.  so we broke it down into steps.  we just held the remote and held the buttons together and then released them- over and over and over again.  then we moved our arms like we were throwing the frisbee- over and over- then we put it together- practicing moving your arm and letting go of the buttons together- again, and again- then we started the game and put it all together- it worked!

the good thing was she was in a good place mentally.  she wasn't upset about getting help- she wasn't mad that she couldn't do it.  if she had been it would have been a full on disaster.  and, our plan worked- once her brain reset the motor process needed- she played for half an hour and did well.

i'm sure this happens all the time.  it must be why her copy work is so hard for her sometimes- why her she struggles to get things opened- or buttoned- or tied.  even if she knows the steps- the motor neuron connections aren't always functioning properly.  and what if that's similar to what happens in her brain when she has a meltdown- she knows she shouldn't react a certain way- but she just can't get her voice and her face to do what she wants.  i don't know.  but she handles it with more grace than i would. i can't imagine the frustration she lives with.

when i was her age my dad decided it would great for me to learn tennis.  a sport you can play for life- he said.  our neighbors had a court so he could teach me.  after a few lessons they nicknamed me McEnroe.  i had such high expectations for myself.  i knew where i wanted the ball to go and i couldn't get it there sometimes and i would throw my racket in frustration.  so how would i handle dealing with zoe's issues?  definitely poorly. 

what was kind of funny in the whole thing was she kept saying, "mom- i don't know why i can't just let it go! i know i need to let go- but i just can't do it!" it sounds like me. why can't i just let it go! 

i might not struggle with the her motor planning difficulties- but i do struggle with behavior planning difficulties.  i struggle with knowing how i want to act and then not doing it.  how i want to be and not be- and doing the opposite.  and i get so frustrated with my inability to put it into action!  so i'll try to remember this- that in many ways i do get her.  and i'll try to be more gentle with her, with me. 

breath deep- the outside air- where ever you are.

long may you run

endurance.
living with the life you have.
not asking always 'why?'.
accepting why not.
accepting because.

there are some things about certain groups of people that amaze me- vietnam era veterans are one of those groups.  several of my patients have showed up to their appointments with a woman at their side, and when i ask who she is- they say "my ex."  i've seen it many times- these guys will get sick and out of the woodwork will come their ex-wives.  these women will then stop what there doing and care for their ex-husband who now has stage 4 cancer.  after years and years of no contact.  after years of time together that was often affected by alcohol and drugs and cigarettes and infidelity.  these women come back and care for their man.  a few of them have even remarried.  and there is an attitude of 'why not', or 'it's the right thing to do'.  it always gives me pause. i've often wondered why?  what's going on?  what's the real story?  is it a story of redemption? has there been a righting of wrongs?  apologies and forgiveness? or  is it a story of true love?

on friday i saw one of my patients who i knew was living with his ex.  last friday she came to the appointment too and i got the scoop- i heard the story- finally a window of possible insight.

"30 years! we hadn't seen each other in 30 years! we had a son during the three years we were married and he told me dave was sick- he had cancer and was living in a hotel." she said. "so i says i need to help out.  i had a boyfriend, a marine, i told him that my ex-husband needed help and i was going to take him to his appointments and his treatments at the VA hospital."

i'm thinking- you were only married for 3 years and you haven't seen the guy in 30 years and your stopping your life to take him to and from his chemo and radiation?  and you have a boyfriend who is OK with this?

"you know what my marine said?  he said, no we're going to take him to his appointments together- you don't need to do that alone."

what?

then the amazing thing- dave (name changed) was in the hospital and 'her marine' found out that he would be discharged to a nursing home - he said "no fellow veteran is going to a nursing home when we have an extra bedroom- we can take care of him."

so the three of them live together.  my patient, his ex-wife and her fiance who take care of him.

my patient spoke up- he said- "when you've lived to this age in life- and you've seen what we've seen- you just begin to let go of the things - you see what really is important- you learn to laugh at things that used to drive you crazy and you forgive each other- you move on."

such good wisdom.  i envy that perspective.

if zoe was a race, she'd be a marathon.  if zoe was a piece of candy, she'd be the everlasting gobstopper.  if zoe was a sentence, she'd be written by charles dickens.  if she was a sports event she'd be baseball.  if she were music she'd be beethoven.  if she were weather she'd be sunny, but if she were a natural disaster- she'd be an earthquake- not the warning winds and rain of a hurricane, not the visibility of the tornado on the plains, not calculations of the volcano- just a few tremors then the big one.


she needs to be surrounded with endurance- stamina- patience- like a long run, and wordy paragraph, and extra innings. but she's complexly beautiful like  moonlight sonata - intense and traveling like the notes- moving you- drawing you in- pushing you back, slow and creeping then vibrant and passionate.  she's cheery and sunny and warm like good weather- but she can have the unpredictability of an earthquake- shaking herself to the bones- with little warning.


i'm a sprinter- our 4x110 relay team won the state championships.  if i were candy (and couldn't be chocolate) i'd be poprocks.  if i were a sentence- i would be a fragmented poem line.  if i were a sport i'd probably be ping-pong.  if i were music- i'd be played on the harmonica- not fancy but soulful.  i hope i'm sunny.  if i were a natural disaster, i'd be a hurricane- at least you could get out of the way.


so i don't like the pain of mile 20, i don't like the unpredictability- but i do live it.


today at the zoo- she had a little earthquake moment.  we were with one of our favorite families.  she got overwhelmed in the gorilla house. a lot of people and a lot of noise- and she freaked out a little.  ran out- ears covered.  it took a while for her to calm down- and there were after shocks- she was angry at me in all of it, which i guess is good, i guess it means i'm safe.

but there were two positives in this.  one is that i'm learning to pace myself- i don't burn out after 50 yards- i might be up to 7 emotional miles- and this is good.  and i'm not avoiding the long words in the long sentence- i'm not skimming it- i'm trying to understand it fully.

the other thing i saw was, again the beauty of my friend erin.  that girl gets it.  we were reflecting on the day and she said- 'wow! the kids did really well!"  "except for zoe's meltdown" i said.  "no- every time we're at the zoo, one of my kids is crying about something."  she normalizes it.  no big deal.  no ones injured.  no ones gone missing.  no ones dying.  you accept your life, your path.  and you move on.  she brings me back to where i want to be.

sometimes mike and i forget this.  sometimes we get overwhelmed with her overwhelm. sometimes we fear we've landed our lives on a fault line.  we can blow moments, into forever.  we can turn 'once in a while' into 'always'.  we can worry about what those zoe quakes will look like in a few years, or how the girl who doesn't like change will handle moving to uganda. 


but i want to let it go- to laugh at the things that drive me crazy- to forgive each other and move on.
and it is beginning- slowly-i'm trading speed for endurance.

long may we run.

remembering

trust. and faith. trust follows- or is it first?

i've been thinking about the importance of rituals and disciplines and holidays.  how they are more than patterns. more than frames to hang our days on- they are triggers to stop.  they are flags to remember.   they are pause- if we allow them to be.  they are opportunities to not forget things that we do forget. the things that often matter the most- but get stuck on the back burner of life.  so we need to dust them off- the important things.

holidays and traditions are also important sociologically- they are a group experience- they are collective memory- they are ways of teaching the next generation what was learned - passing on the story- histories of lessons- uniting us- calling us back to our people before- when the same dna was there and the same blood types and the same need for love and the same feeling of pain and the same desire to be known and valued.  they teach us where we came from- where we've been and might not want to go back to- they remind us that there is nothing new under the sun, or the moon- that we're not alone.

martin luther king jr day.  veterans day.  tomorrow is presidents day.  and there are religious holidays- all religions have them and we are told to keep them.  i'm most familiar with the christian and jewish holidays.  i love the purity of the jewish holidays.  they haven't been squashed by reindeers and easter bunnies.   i've been fortunate to celebrate passover many times with my jewish friends.  i love the many parts and symbols- that each have a lesson and a memory. and that it's about remembering God and his protection and provision- that they were not a forgotten people- that the celebration is to be a reminder that they still aren't forgotten.

Passover took on new meaning to me when i was in the eighth grade and my best friend, the one i'd celebrated passover with, became sick unto death.  and it was the week of passover.    i remember the D.C. hotel room - where i was sitting- overhearing my father on the phone getting the news that my friend was perhaps dying in the ICU. we were driving back to boston from our family vacation visiting grandparents in north carolina. it was the worst thing that had ever happened to me.  i remember looking out the window for the next 8 hours in the car- but all i saw was the rain- the drops on my window- how they start at the top and then fall -making a track that joins other drops- sliding together until they land at the bottom of the window and become part of the river leading  back to the air again. that was it- the blurry countryside and the crystal clear rain and my tears and my prayers. i would send one on each rain drop that i watched fall, and i begged.  i begged God to please allow death to pass over her.   i had faith that He could- but i wasn't sure that He would- because even at 13 i knew that bad things are allowed to happen- that we don't always understand it- that we are small- that life is fragile- that things aren't fair- but it didn't make me question God's existence.  so i cried and i begged and i hoped and i believed and i waited and i cried some more.

by the end of the week- we knew she was going to live.  she'd had her own passover.  we all had.  but we still didn't know what survival would look like.  would there be brain damage- would she talk and walk?  so i cried and begged and hoped and prayed some more.  it took a long time for her to come back to us as we knew her- as we now know her- but she did.  she walks and talks and spends her days helping other people as their doctor and their mother and their wife and their friend.  as my friend.

so passover is a really important season to remember.  it's a 'double'.  it's religious and personal.  we all have our own practices, or our own dates of remembrance.  i'm thinking back to the times that i forget.  those of deep wonder- of crying out and being answered. of when the answer wasn't always what i wanted - but even still, i wasn't abandoned. judes birthday is in a few weeks (see post 'happy birthday jude' for details).  how quickly i forget those months when we wondered if he'd walk and talk- when we lived in a season of waiting and hoping- when we lived with a daily sense of our fragility- and yet the gift it gave us of perspective and the importance of real things- family, friendship, faith and smiling.  i live with jude- i see him all the time- but i still forget.  bryn was born with a hole in his lung that kept him in the ICU for a week- i cried and begged and prayed- and thank God, he's fine, but i still forget.  i see zoe all day and see how far she's come- and again- i forget.

maybe i need to turn remembering into a practice. a daily ritual. 5 minutes to reflect on where i've been- to be thankful and not be stuck in the minor details.  uncover the important parts and live in them. because i am small and life is fragile- but God is not.

same moon

what is going on in the arab world? i'll be honest- i'm ignorant about the roots about what's happening over there- i also don't have a TV so i'm lacking the many options and updates- i've been reading CNN and the New York Times- but i feel like they just touch the surface- i need more substance. i want to wrap my mind around it.

and in my mind i've been living near there. i just finished reading 'a thousand splendid suns'- i loved it- but it was really depressing- and shocking- and made me feel very, very small.  my problems withered and i realized how lucky i am- how deep is the suffering of others.  how love can have many faces- how sacrifice is an unbelievable gift. 

the two main characters are afghan women- the older one born illegitimately with a broken self esteem- and a broken heart- the young one born into a world of hope and education. their stories begin separately, but they share- fathers who love them (one daily, one from a far) and mothers who don't value them.  the young one knows love- the love of her childhood- who flees kabul with his parents but not before a moment that will stay with her forever- a moment of forbidden passion- years of yearning- satisfied- and she is given a daughter.  after much loss-these two women's lives are woven together as they end up married to the same man- an awful abusive man- an unhappy-jealous-man.  their friendship becomes their lifeline as they survive in a world of war and death and violence. but they find themselves bettered by the other- they grow through what the other brings and there is healing even it the trauma.  then the lover returns- and the husbands wrath ensues and after pages of abuse- as he is about to kill the young one- the older woman ends his life.  it is her moment of self- actualization, her moment of empowerment, but it's still murder, it is self-defense.  the lover and the young one flee with the children and marry, and the old one stays to take the full blame- to die for her deed- to sacrifice herself for them- all of them- her moment of purpose.

in reflection- leila the young one- describes her older friend 'like a rock in the riverbed, enduring with out complaint, her grace not sullied but shaped by the turbulence that washes over her.'  leila and her family return to kabul- to give back- to teach- to face it- to pay homage to the loss- to this woman who gave up her life- to free leila.

that's a lot, to say that i love that description of miriam. her grace being sculpted by the rushing waters of life.  these women lived through waterfalls of grief - but they still laugh and smile and drink tea.  they each find their place to give.  and i love the image of the stream- the smoothness of the rocks in the riverbed.  i can hear it- it's endless movement- the sun catching in the water- a sparkle. 

may my life be grace.  may i be gracious.  may i allow the rushing and the harshness and the pain to wash and shape me- to bring transformation and then betterment to the lives of others.

because we all live under the same moon.

sparkly ( i love that word)

it was a really long day at work- at the end of a long week- but i'm home now- out on the back porch. the evening is spectacular- warm and quiet and sparkly as the house and street lights begin to come on and the sky darkens and the trees are still naked so you can see through them to more little lights- from other peoples houses.   so i can feel alone- but surrounded- at the same time.

it's been almost a year since i began writing here and i'm so thankful. much growth that has come out of it.  writing down the days of my life, the minutes even, forces me to pause, and breathe, and step back and see it differently.  where i start when i write and where i end up- are different.  i gain perspective and meaning- i see it clearly- the ugly parts become more beautiful- the beautiful parts become more special and life-giving, and i become happier- renewed-able to go on.  if i was walking- i leave running, standing- i leave skipping, or sitting- i might leave crawling- but at least i'm moving- and my soul, stills.

a lot has happened this year.  i've found some parts that were missing, and let go of some parts that were weighing me down and i feel much more whole- put together.  i think zoe does too.  it's been a good year. for her. for me. we've grown and changed.  and we will again. 

i've been thinking about the orchestration of things- about divine intervention- and how things have worked together- about what i've learned.  looking back now i see how zoe's dark season- led to life blooming in a new way.  stepping off the track of academic medicine and into the life of homeschooling and home-making and spending hours with my kids- has given me so much more than i ever thought (despite my grumpy valentines post).  it's given me time and space and knowledge - not just about zoe, but about each of them- their needs, their strengths, their struggles.

it's given me small things.  small, very valuable things- a moment walking to school in silence except for the rain- making a paper house for a lego man- explaining about how a horn works- listening to someone thank God for the heater coming on- and a cake being baked. holding them, smelling their hair- watching their independence grow.

and all this time and space and change has freed us to think about life outside of the box - to let go of the things we thought mattered, or should matter- and refocus the lens on the things that really do matter.  listening to our lives.  giving to others.  living fully into what we're called into. not being afraid.  taking risks.  trusting God. and all this has opened our hearts to uganda.

writing here has enabled me to process and to find balance.  to remember who i am- and why we're doing what we're doing- to have hope- to choose joy- and that it's OK to forget that and have to start again the next day.  and i've found a beautiful community of people who get it- who walk a similar walk.  yet what's become most clear- is that we all walk the same path, different versions, different speeds, carrying different amounts of baggage at different times- but none the less, the same.  i share this path with my patients living with terminal illness- and i share it with my friends and their appearingly perfect lives with typical children.  it's just not so complicated.  it's just not so separate.

i've learned i'm not alone.  far from it. i'm surrounded. there is unity, and peace.  out of the darkness has come light- little white lights- of possibilities and hope.  sparkly lights.

night is full now.  but it's still warm and through the leafless branches, the sky is twinkling too.

happy valentines

happy valentines day! 
mine started with strawberry red vomit all over me, my light colored couch and my rug.  it was followed by zoe not doing her work, hiding, then not responding to me calling her multiple times- and me, finding her, snatching her stuffed hello kitty valentines gift out of her hands and bonking her on the head with it.  not good. it's been this way because everything bryn sips he throws up- and i woke up and still had my cold-foggy head, demi moore voice and all, and  a 'vestibular migraine' which means my balance is off and the room is spiny (and the neurologist said not to take the migraine medicine if that happens because i might have a stroke- that's really what he told me). and because i need to work on my talk for tomorrow- my talk for work- my talk about homelessness and palliative care. 

"so today we're going to talk about the intersection of homelessness and palliative care.  and this is really fun for me- because it's the intersection of two of my passions.  when i was a research fellow- i published a paper on housing instability and homelessness, and access to health care......."

back in the days of san francisco- the days when i was a doctor and quite possibly going to be a research oriented academic doctor- back when i was just pregnant with jude- before the knowledge of good and evil- before my life with zoe fell to bits.........back in the days with out a diagnosis, back when she was not-reactionary over everything- when she was flexible- when she wasn't ever mean (really)- when i had my own life- when she was in childcare from 7:30-5:30- in her life- back in the days before we needed medications, before we needed special schools, before we were kicked out of the special school, before i lost myself in her life- in her world- before mine began to fade away.

"and now i do palliative care- end of life care- care for people who's illness doesn't have a cure."

is that what i do? it is - day in and day out.  not just on fridays- because this stuff we deal with at home- this stuff she deals with everyday- it doesn't have a cure (even off gluten and dairy- better, not cured).  it's living with a life threatening disease- depending on how you define 'life'- depending on how you define 'disease' or  'dis- ease'.

"so lets think about what these things are separately- what is homelessness?  who are the homeless?  and what do people need and want at the end of life?  how do we do palliative care?  and then lets think about their interaction- about what might be unique and challenging about delivering palliative care to the homeless- what barriers must we address- what things do we need to think about differently?"

lets think about my life even 6 years ago, five or four years ago- other lifetimes ago it can seem- in those times when i studied people with out homes.  there was still struggle, yes-  there was unknown- but it wasn't like these years. it wasn't foot stomping, tantrum throwing, wailing- because you can't go to your friends house.  and you can't go because your poor little brother is vomiting his guts out- and your mom (who should have been writing her talk) can't leave his little side. those were the days when even if you couldn't empathize with him- you didn't get angry and explosive.

what do people want at the end of a life? how do we provide palliative care?  how do people live with life altering- life damaging- career wrecking change? the end of a life.  a life style. an expectation.  life as we knew it.  to palliate means to cloak- to cover, to protect.  is that what we're doing here? what i'm doing? not today.

it's 2:30- someone is snoring beside me after having the dry-heaves- and someone else is upstairs having lost hello kitty, and all her american girl dolls because of her absurd over reaction to not being able to go to her friends house today. because of her unwillingness to at least try to be sensitive to her  sick brother.  because of her storming upstairs yelling, "i just can't take change!"
oh really??

really?

tough.  because life is what happens when your busy making other plans.  because life is change.  because if you want to talk about having to adapt to change zoe- lets talk.


so he slept and she came down stairs and we talked about change- about the naturalness of it- the constancy of it, whether we like it or not.  we talked about trees and seasons- about what happens to the leaves in fall and winter and spring and summer- about the loss in the change and what you gain in the change- how you can't have one without the other. that plans changing can be disappointing- but there is always another opportunity. when a door is closed- somewhere a window opens.  and then i started listening to what i was saying, and i started believing it, and i stopped feeling so sorry for myself.

she said it was hard.  that she didn't know how to adapt to change.  i told her it's about making a choice- it's about how you look at it- what you focus on.  do you choose the sadness of the lost leaves or anticipate the buds of spring? do you choose to stay in that angry place of not getting to see your friend or do you make new plans for the afternoon?  do you twirl and twirl over what you thought you'd get and didn't or do you embrace the gifts that surround you now- different as they are, changed though they may be?



i'll choose to embrace.
happy valentines day!

twirling to stand still

it's quiet. completely quiet- i think for the first time in over two weeks.  mike just took the kids to the park- so i can do work- but my mind is foggy and full of cold medicine and my heart is full of needing to feel things and my soul has been so thirsty for the sound of nothing- that i'm just sitting here enjoying it.

you notice silence only in relation to it's absence - noise- which we're surrounded by.  my 'alone time' is usually in the midst of a lot of noise- laughing, crying, music, a movie in the background.  so this is delightful and i will indulge in a moment of peace.

last night i kept waking up.  i was thinking how easily 'africa' roles off the tongue when you say it at a party- when you tell people you're moving there- but how the reality of it won't.  i've had this cold and a little fever and when ever you're sick you just want to be home- and have your mom.  you don't want to be in a strange place, a strange, foreign third-world place- far away from your mom by an ocean and almost a continent.  so at 3am with a cough- 'africa' didn't sound so good. 

it was also because yesterday zoe and i went to a valentines party hosted by one of her friends who has autism.  i only knew one person- the host, but i felt at home, because i was.  i was with a community of people who get it and are still OK.  and i realized that saying we're moving to africa and moving to africa are very different.  we are leaving our resources, we're leaving our community,  we're leaving people who get it- who get her- who sometimes even, get me.

the party was a mix of typical kids and spectrum kids and zoe who was feeling 'off'.  (i know it sounds crazy- even to me- but i think it's because she ate a large gluten filled lunch the day before).  anyway, there were a lot of great parents to talk with- parents who, like me, stay at a drop-off party, because we're not sure how our kids will do.  parents who's kids also don't eat gluten or dairy and need to take medicine to help them with the anxiety of fitting into a world that doesn't make sense. parents whose kids notice every sound in the room and are easily distracted by them.  parents who have spent years worth of hours trying to understand their children and do what's best for them.  parents who spend many many thousands of dollars on testing and treatment and schooling and therapy and tutors and food.  parents who know that this is not what they signed up for, but it's what they got.  parents who live with the uncertainty of the future for their child, and themselves.  who live with the uncertainty of each day- sometimes of each moment, and the frustrating predictability of unpredictability.  parents who must decide whether to avoid social situations or encourage them, to stay home 'cause it's easier- or go and risk a melt-down, risk looks of confusion, of pity, risk being seen with the reality of your life lived with your underwear showing.

and as i watched these kids, my kid, i kept seeing their strengths and uniqueness.  i could see the joy in their dancing- and hand-flapping freedom- the brilliance of number and sound memory- the ability to be in the moment.  and as i watched their parents i was even more amazed, by their strength and uniqueness.  there was joy and there was peace.  there was an acceptance and an openness.  there was an overall sense that life is just life, people just people, a party is a party, autism is just one part of things.  there wasn't consumption, there wasn't shame, there wasn't embarrassment- well, except for me.

zoe was kind of off- and i knew it. she's also been going through this season of self-discovery.  trying to understand her nvld in relation to autism, to typical kids, to aspergers.  she's been asking a lot of questions- she's been trying to categorize people- to understand.  so i reminded her to please not ask people or their parents if they or their child has autism.  of course, after 15 minutes, she'd started.  i could tell people were a little thrown- because zoe is kind of hard to place.  she's not 'typical' but she has great eye contact, she's hyper-verbal, and she can engage in a pretty good dialogue now (not just the one sided thing she used to do).  the other parents were very understanding, of course.

i began to see, again, that i have problems.  that i seem to continue to twirl through the stages of 'grieving'.  but these parents all seemed to have arrived somewhere that i want to be.  like they'd found platform 9 3/4 to get to hogwarts express, where i just keep crashing into the brick wall.  but in harry potter's world, you need to look for it and believe it exists and be a wizard- muggles can't see it.

then in church i began thinking about the difference between faith and belief.  i tend to think i have a strong faith in God- but now i'm wondering if i have a strong belief, but not as much faith as i thought. "Faith makes the choice to trust based on the joining of heart and mind." because faith chooses the thinking of the heart over the thinking of the mind. and faith is what's transformative. when i look at my struggles with zoe i'm not sure i have full faith in that. and i want to. so badly.

i want to more than believe it exists, i want to have faith it exists.  faith that despite all the difference and challenge- it will be OK. faith that i, too, will 'arrive'- stop twirling- and just BE STILL.  faith in Gods universal provision- even in africa- even in illness- even with a nonverbal learning disorder.

it's in the letting go.  i know this.
it is in the loving. i know this.
it's in the brokenness of the heart- that there is more room.
so i will wait.

"I said to my soul, be still, and wait without hope
For hope would be hope for the wrong thing; wait without love
For love would be love of the wrong thing; there is yet faith
but the faith and the love and the hope are all in the waiting.
Wait without thought, for you are not ready for thought:
So the darkness shall be the light and the stillness, the dancing. "  TS ELIOT

but maybe, in the dancing-
the acceptance of her flapping-
the tolerance of my own twirling-  shall be the stillness.

good things and a challenge

it was another day of blessings and thankfulness.  

but there have been many seasons in the past few years, of self-pity and inward glance- of feeling the sting of my own trials and forgetting the rest of the world.  when i felt too tired to look anywhere but straight ahead. but in that, you can  miss the blessings that are tucked in between the moments of overwhelm and you can miss the quiet beauties that lighten the sting of the rest of the world. 

my cousin posted this on facebook today.  it made me happy cry.
because of this man's beauty and choice.  because of his 30,000 foot view.  because his head is screwed on right- and his heart is big.  because sometimes i forget that there is goodness hiding out there in the dark, and i just get overwhelmed by all the bad stuff.  and because it challenges me to live right, to think, to do- something.  i know it's dramatic- but it doesn't have to be.


then someone posted this on the home school group email that i belong to:
"Cleaning for a Reason:  http://www.cleaningforareason.org If you know any woman currently undergoing chemotherapy, please pass the word to her that there is a cleaning service that provides FREE housecleaning-once per month for 4 months- while she is in treatment."

it reminded me that we can all do something.  we can clean, or make food, or we can organize groups to do these things.  we can tutor refugees. we can rake someone else's leaves.  we can use whatever resources we have- because it's really about willingness not how much you have.  we can all affect change in the lives of others.

we can care.  we can love.  we can give.
like martin luther king jr. said, we can all serve.

sometimes because i have a special child who zaps a lot of energy and time, i think i should be on the receiving end.   but then i think about my fridays and why they are so good.   because i'm off center stage- my focus is elsewhere- i'm thinking about other people.  and when i grab onto something else- it forces my grubby little hands to let go of my own self-occupying troubles- which is exactly what is most needed and what brings the peace.  there is joy in the giving.  there is freedom in expanding beyond the borders of our lives.

what if we all had just one hour a week to give to someone else- someone not related to us- and we built it into our schedules?  what if we all found one cause to support or invest in? what if instead of being consumed by our own needs, or overwhelmed by the needs of the world, we just did one thing to make it better? how much would the world change? how much would we change?

"everybody has got 5.5 liters of blood. i am just a human being- for me, everyone is the same.  there are 1000s of people suffering- what is the ultimate purpose of life? it's to give.  start giving.  see the joy of giving."

what's it going to be?

blessings

sunny and cold- too cold, but i'll not complain because of the sun. it just smiles down and things are better - no matter what.  the sun gives options- it differentiates- there is brightness and shade and in between- there is dimension. there is hope in there- in those parts. and when the wind blows- the light moves on the leaves and things change and you realize that life changes, nothing is static- even when your heart can't feel it- the light can remind you, and the wiggling leaves, and you can see the possibilities that on a closed gray sky day, you might not.  so i'm thankful.

mike is home.  i'm thankful.  he's refreshed.  i'm thankful. i'm not yet, but i will be.

zoe has had a weird few days-which i'm going to chalk up to the change in mike's going and returning.  once she'd adjusted to him being away (about 2 days into it) she did great.  i mean- last week was great. i also had taken her off gluten.  this should be a post in itself.  i, at risk of offending, have hated this whole gluten- casein free autism spectrum thing.  i have probably hated it because it seems like one more thing to do- or one more thing to feel guilty about not doing.  someone's words hang the air and ring in my ears- 'oh- you'll try it someday- trust me'.  yeah right.  not me.  not us.  whatever.  then two thanksgivings ago- i did- for a week- and that was it.  i'd convinced myself that i'd done it- and now could resume life with bread and feel OK.

then we did brain balance- which i also thought was hokey- and it really helped. we took her off casein.  it really helped too.  so i noticed that when she eats bacon and eggs instead of pasta she does better.  i decided to do it, again, fo' reals. and it's not that bad- it's not that hard- and i seriously think it helps.  i'll admit it.  i'm not proud.  anything that helps her process her world better- is good.  hokey or not.

but just when i'd become a believer in the GFCF diet plan- she had a bad sunday, the day mike was coming home, and a bad monday.  this was really discouraging.

but... there were two good things.  first of all- i was reminded of how far she's come- how bad it used to be- and so i could be thankful.  secondly - i saw how quickly she can now turn it around- and i saw her ability to now reflect on her behavior, to think through the reasons why and to apologize in a real way- not the ' i'm sooorrryy mom!!' but the really apologetic sorry.

then today- she was great. i mean great.  she sat for 45 minutes and completed putting together an esher puzzle- with out a moment of frustration- with out a blink of sticky.  this is actually remarkable for three reasons.

one: this child is visually spatially challenged. she can barely do a regular puzzle let alone a visually confusing one.

two:  it was a set up for frustration- a really hard thing for her to do- me flying around her freaking out about getting the house clean for our realtor's caravan, me vacuuming around her- literally- and she just kept going.

three: she just kept going.  this girl- gives up at the slightest whiff of failure- this girl gives up when the going gets anything but easy- this girl has very limited focus.  this girl sat and focused and did something super hard for her for 45 minutes!  i was so proud of her! but better yet- she was so proud of herself. 

mike is almost home from work- like opening a present- we get to go out tonight.  we're excited like teenagers because absence makes the heart grow fonder.

while he was away- i got to feel the love, but from others.  friends came over.  friends brought dinner.  friends called to check in.  friends helped me with zoe at church on sunday during some major stickiness.

so i feel so blessed- for where we are, for the growth that comes from where we've been- even in the shadowy spots- those dark, lightless, cold spots, and for where we're going.

blanketed in grace.  and so, so thankful.

when it rains

good morning- i guess. i really struggle with the rain.  it attaches to me and i can't get away from it. it follows me around and around and i rain down on everyone else.

'Strange how hard it rains now
Rows and rows of big dark clouds
When I'm holding on underneath this shroud'


patty griffin 


i think it's also because i'm just done with being without mike.  really.  i miss him so much.  for the first week i was in the mode of getting the one parent routine down- getting super organized- to maintain our lives.  lunches ready the night before, coffee on the automatic timer- dishes done before we eat- toothpaste on the brushes before breakfast is done.  but after a while- i let my guard down- and i allow myself to think about my life with out him and how awful it would be- in my heart.  because after a while i've proven that i can physically handle it- even the yard work- even lugging those giant trash cans up the driveway hill- even getting everyone everywhere they need to be and paying some bills- and getting the house ready to show in 30 minutes- and finishing up some basic painting.  and right around that time that i know i can do it, i realize how much i don't want to do it alone- and not just alone- but without mike, that man who's gently held my heart for 22 years.  and i remember that it's not just hard to take care of three kids alone- what's especially hard is taking care of three kids when you're only half here. and that is how it feels. incomplete.

i watched 'out of africa' the other night.  that's when it started for me, when africa became real.  1985- when 'banana republic' was about safari clothes and had a hand-drawn catalog,  when 'live-aid' happened and suddenly the US was looking at africa- and my eyes were opened a little bit more- to world and her needs- and to the beauty and mystery of a far away place.

as a movie i loved the music- and the images-  it's ability to transport us to 20th century colonial kenya- and it's romance.  but i've struggled with the characters.  denys finchhatten seems selfish in his desire to be totally free- and not tied down- not "owned" like karen's crystal and limoge.  karen seems to crave and need stability, routine in the chaos, partnership in life, a guarantee.  she began to care for bror because she hoped he could offer that.  after her first night with him in africa- he leaves without a goodbye- and she is told that he'll be back when it rains.  'will it rain today?' she asks.  ' it can be many days before the rains.' and when it does- she meets him out on the path- in the rain- 'i want you to come home now'.  ultimately his wandering and infidelity cost her her heath- her ability to bear a child- and she is left- with her farm- and her unwanted freedom.  her life is hard- especially her life in love. denys cares for her- but cares for himself more- for his separateness- a contrast she ultimately can't live with- and again, she is alone.

we're left with the question: if you love someone do you set them free? or if you love someone do you allow yourself to be committed- to be perhaps less free? 

if i've found anything in last 22 years- it's both.  there is freedom in boundaries- more than in roaming.  and yet, in the safety of commitment, you need to allow each other to be set free.  to support each other in the search for evolving identity, to know when the other needs to 'roam', to trust their process, to trust their return, to look forward to the newness that come in that.  to be gentle, to do no harm to the other.  that was my trip to ethiopia- such a needed time- for me- without the kids- even without him- and i came home more whole.  and that is his trip now- to be in uganda with out us- to see it with different eyes- with just his eyes.  and to walk the streets of amsterdam- alone.  to not have the noise of his life for a few days.  noise that he loves- but now with a new ability to remember how much he loves it.

so i will wait for him- in the rain. and tomorrow we'll be together again- with that newness embracing the old connection- enjoying together the joys of the freedom in the commitment.

the world's asleep downstairs

"The place God calls you to is the place where your deep gladness and the world’s deep hunger meet."
— Frederick Buechner (Wishful Thinking: A Seeker's ABC)


"We must be careful with our lives, for Christ's sake, because it would seem that they are the only lives we are going to have in this puzzling and perilous world, and so they are very precious and what we do with them matters enormously." — Frederick Buechner

"To journey for the sake of saving our own lives is little by little to cease to live in any sense that really matters, even to ourselves, because it is only by journeying for the world's sake - even when the world bores and sickens and scares you half to death - that little by little we start to come alive." 
— Frederick Buechner (The Sacred Journey: A Memoir of Early Days)


"The life i touch for good or ill will touch another life, and in turn another, until who knows where the trembling stops or in what far place my touch will be felt."
— Frederick Buechner


i love frederick buechner- i especially love his book, 'the alphabet of grace'.  i have written down many of his wise words.  for some reason, i'm thinking on these things. about what we do with our years here- our months- days, and, hardest for me- minutes.  when i read these quotes, i automatically think large scale- i think career, or calling, or difference making.  i assume he's referring to macro-level choices.  but that's probably because for me, it's easier to think big.  to dream or wander into goals and purpose.  and there is nothing wrong with it- but i'm totally humbled by the minutes. what i can be really bad at, is the seconds even.

the word 'life' seems so big- until you see the last breaths- we are made up of them, the rise and fall of our chests- and with out those breaths - there is no life.  the micro-scale can not be forgotten.   character should be measured out by how we live in the mundaneness of our lives, not in the bright lights.  why is this so hard?  why do i get so bothered by the moments that disrupt my big picture?  why can't i live into those moments- those which are actually real- present-happening, when who knows what that next moment will even bring?  maybe i won't make it to the years.  maybe this is all i'll get. squandered by my planning.

this morning i was trying to have devotions- to read the celtic prayer book, the bible and to pray.  bryn kept climbing on me, my chair, jumping off onto the dog and making noise for the sake of making noise.  i was getting irritated after asking him to stop several times and explaining what i was doing.  finally i just snapped, " bryn! be quiet! get out of here! i am trying to pray!"  not a good moment.  what kind of a touch was that spreading? not a loving voice- not peaceful- but resentful, annoyed, selfish- and of all things, it wasn't because i was making dinner or talking on the phone- but praying.  i can just see God shaking he head and laughing at me- "oh, will she EVER get it?"

humbled by the moments.

i began to think about these quotes- and what if 'the world' really means the lives of my children- my friends-my neighbors. because it does. not necessarily glamorous, but the world starts at home.  my touch begins with three blond heads getting crabbily out of bed, missing their daddy, and changing their minds about which shirt they want to wear three times.  am i thinking about their 'deep hunger' or are my eyes looking to africa?  it has to start at home. am i journeying for their sake?

sigh. rats. foolishly i stumble through my days- amazed at my own inability to live out what i know, in the moment.

the grace, is in being loved anyway.  the grace is in forgiveness despite the absurdity of it and the repetition.  the grace is in another day- to slow it down, to remember a breathe, to live in that breath for a minute, to take pause, and then, to try again.

"Listen to your life. See it for the fathomless mystery that it is. In the boredom and pain of it no less than in the excitement and gladness: touch, taste, smell your way to the holy and hidden heart of it because in the last analysis all moments are key moments, and life itself is grace."
— Frederick Buechner

lessons from the high

today we went to the high museum of art.  as hard as it's been for me to let go of copywork and math sheets and reading summaries and our history text- i've decided that we need to embrace the freedom we have in homeschooling- and explore and embrace atlanta before we leave it.  this was met by resistance from zoe- before she knew what the change was going to be- because she announced, that she just hates change- no matter what it is. but i actually think she liked today- except for the fact that i was too cheap to pay for parking and we had to walk in the 'cold' for a while.

when we got there- she was being a brat.  everything was a problem- the path we'd walked was different- it was too cold- she wanted to see mikes work (even though he's not there)- then she did the wiggly walk when we arrived at the museum.  i was super annoyed.  can't we just go to the museum and enjoy ourselves?  then she admitted that she was feeling kind of nervous, as she clutched her 'powerpuff girl plush toy' (as she calls it).  she felt like there were a lot of people around- which was weird because there really weren't.  and i had that tremendously conflicted feeling.  the feeling of completely not getting it, not understanding how someone could feel anxiety or anticipatory anxiety, in a nearly empty art museum- but also of knowing how bad anxiety feels and hating it for her. but the larger feeling was truly, annoyance.  

we were going to see the toulouse-lautrec exhibit.  to get there we walked through the modern art collection.  this was nice space- big, bright, and empty except for the  gallery guards.  the paintings are also large and it's quiet and zoe began to calm down.  in the toulouse exhibit, there was a tour group - a bunch of high school kids and people talking loudly about the paintings and zoe didn't like it- she wanted to go back to the enormous white walls, and scalloped renzo piano ceiling of the modern art section- and so we did.  but zoe wouldn't be zoe with engagement.  so she be-friended the haitian guard and the two of them discussed each piece on the floor. 

which was his favorite and why?

what about the next piece? who had painted it? where were they from?

how did the get the canvas into the shape of lips?  

and on and on.

he loved it.  and as we got ready to move to the next floor she thanked him so much, asked him his name, and then thanked him again, by name.

"zoe" he said, " you've made my day!"

again.  my girl.  je ne sais quoi.
her greatness- in her servanthood- putting others first.  

she seems to know what she needs to do to calm down.  she also seems to know what other people need.  after her stroll through modern art- she was done with her anxiety- she had transitioned and we were off.  

as i watched her- i tried to step back and and see her through their eyes.  hundreds of kids come in each week and how many of them stop to speak with the guards?  how many stop to ask which paintings they love as they stand in that gallery all day?  i realized, knowing zoe, that her questions aren't generated out of a desire for  knowledge about the paintings themselves.  in fact if we were on a guided tour, she'd either tune out, or say it's boring.  what she loves is hearing about other peoples lives- she loves connecting with them.

my annoyance melted away and my pride in her grew.  we'll get there - i realized- 

with some grace and some love- we'll both get there.