the difference between butterflies and moths

tomorrow we fly to san francisco.  tomorrow we see yoyo! the first time since i met him in ethiopia.  it's been 6 months- it seems far off- but it seems so close.  it's all coming back.  the bizarre flight on ethiopian air, the dusty city, some dilapidated bits, goats and cars and people sharing roads, our glamorous hotel, beautiful people,  beautiful language and script, the orphanage, the routine, the order, the kids, yohannes.  meeting the people who were birthing themselves into parenthood.  the privilege.  our morning coffee and pastries while the BBC blared on and on about the trapped miners and the murder of the kidnapped english aid worker, with our view of the pool and in the distance the city and the slums.  and me, feeling so tired by my life, that for the first time i lacked the conflict that follows me into the third world, for the first time i was nothing but thankful that i was living at the sheraton for the week.  and i was able to let myself go.  sometimes i can close my eyes and go back there- to all the foreignness and escape and removal and freedom - to the exit of my life and the entrance into other peoples lives.

today i realized how desperately i need another break like that.  i realized it because i was snapping over things that shouldn't be snapped at.  that i'm loosing the mystery of the little ones- it's being covered in logistics and todo's and so i need to break - and to then return.

today i found myself responding with way more words than were necessary- i was responding to zoe's need with my own need.  i was going down that path of ' it might be boring, but it's either boring now or it's boring for the rest of your life.  because if you don't learn- if you don't try - you'll be stuck doing a really boring job'.  it wasn't helpful, it fell on deaf ears.

then i saw a butterfly outside the boys window- except i was pretty sure it was a moth.  i called zoe over to look at it.  she thought it was a butterfly, and was sure it was a 'she'.  it was brown on the outside of the wings- perfectly camouflaged- i thought it was an old dead leaf-  but revealed a cool orange pattern on the outstretch. i thought she was kind of thick and furry- moth-like, but held her wings like a butterfly- proud and vertical, like if you were lucky, she'd show you what was on the inside.

so we went to the computer and researched the difference between moths and butterflies- and decided that it was a butterfly.  it comes down to antennae shape, wing position while resting and the time of the day or night that the insect is out and about.  and while we ran between the computer and the butterfly, and i listened to zoe describe it, listened to zoe respond to my questions:
'i wonder what it eats?'
'it doesn't eat it drinks- it drinks the juice of fallen fruit.'
'how do you know that?'
'from go-diego-go.'
'oh'

i remembered that this is the best way to learn. especially for her.  that i have been really boring as a teacher lately and unengaged with her learning these weeks.  and that i need to trust her more.  she's not staring blankly at the TV, or a book, or at the backyard.  she is taking it in, storing it somewhere and able to recall it.

i thought about the difference between the two insects. the butterfly so elegant and graceful and purposeful and welcomed.  an insect that people create gardens to attract, that are thought of as good luck, that we chase and observe- almost bird like.  but the moth- we're annoyed by.  blindly flapping towards whatever looks most like a light- bumbling and unfocused and icky- eating sweaters and scarves.  something to be avoided, to scare off with distinctly scented balls and cedar chests.

but when still, when sitting, they are hard to distinguish.  a check list is needed.  there is cross-over.   our extreme versions of what comes to mind when we hear 'butterfly' vs. 'moth'- is not as extreme in nature.

a few hours later, when the boys were home, zoe called down from her room that she was supposed to be cleaning,   'come quickly! something beautiful just flew into my room!'
'is it a butterfly?" shouted bryn.
'i hope it's not a bird' i said.
' maybe its a dead mouse!' exclaimed jude hopefully.
' how could a dead mouse fly into .. oh never mind!' i said.

and there in zoe's room was a moth- desperately flapping and banging itself into the one closed window trying to get out.

'see how beautiful she is!'
'lets free her zo' and i grabbed the guitar to unlatch the window so i wouldn't risk it flapping on my hand.
and we watched her fly away.

' i guess i'm pretty lucky with butterflies and moths today!' zoe said.
' i guess so'

there it is again.  her blind ability to just love.  to not be bothered by furriness or antennae shape or wing position or purpose.  and there i am, quick to classify, to react to, to judge.
and i thought about her friends- her moths and her butterflies and how they are all just as valuable to her.

and i thought of the first insect we examined today.  about my limited little self- my quickness to assume 'moth' before i noticed the subtleties- and how she (correctly) titled her 'butterfly'- noticing, attributing, assuming an elegance. but how the second one, the one in her room, was just as precious to her.

i'll see yoyo with his mama- i'll see his new routine and his home - a home i know so well.  i'll see lisa in a new way- her world with someone little in it. tomorrow we'll be back in that city that i love so much.  we'll walk our old paths and see our old places and visit with our dear old friends and in some ways we'll say 'goodbye'.  and i'll have a break, some space, to re-group again, to refresh, revive, to see, i hope, the butterfly-ness of zoe and also, embrace the moth.

days like this

today was one of those days.  the kind that starts in complete confusion.  i woke up and had no idea what day it was or what i was supposed to be doing.  i must have been having a really good dream.

mike said it's monday and we need to get up and get jude off to school.  i was pretty sure he was wrong and that i should go back to sleep- but he was right.

the stuff i'd planned to get done today had to take a back seat to dealing with our neighbors tree that had fallen over onto our fence and was dangling over our yard.  to make it more challenging, the tree is actually in an old 'alley' between our yards- not really on my neighbors property. so i had to call the city parks and recreation department.  but they aren't responsible for trees in city alleys.  they aren't responsible for the trees that fall down on their property if it's an alley.  and it was all matter of fact, as if it's OK that we're not allowed to build a fence in that alley, but they don't have to dispose of fallen trees.

zoe was slow.  and i was trying.  i was deep breathing.  i was remembering patience.  i was envisioning the view from the sky.  we were trying to do copy work and finish breakfast and get the teeth brushed and the hair combed and things that should take 5 minutes were taking 30- and i could feel the temperature rising.  then  i punctured my fingertip trying to put the rubber band on her braces. it really hurt and it still does and i was trying to just be patient and not get mad that my finger hurt and not get mad that she can't put her own darn rubber bands on-because i know she can't.

i had an appointment at the apple store to learn how to use their software to make brochures and envelopes and form letters- to try to maximize our communication with people while we're living in Africa.  while there i got a missed call from a pharmacy telling me that my license to prescribe certain medications had expired.  great.  another road block in my day.  i spent hours calling various federal agencies to try to figure out my standing.  super.

i'm also working on an application for medical school loan repayment while in Uganda, so i had to call all my loan companies and find out how many more payments were left.  i had to call my medical school and find out how much it cost per year to go there.  so i must have said and spelled my name 400 times and given my address and my phone number and my social security number and my email and pushed "1" to continue in english another 50 times.  all while various children are wanting to explain their beautiful pictures, or ask if they can eat more easter candy, or argue over who likes which dolly parton song.

it just left me feeling like life was backwards.  i wanted to look at the pictures.  i wanted to eat candy with them and listen to dolly parton and not give my information over and over in the same conversation.

i had annoying errands to run.  returning the wrong printer ink i bought, with out the receipt, while trying not to get annoyed that it costs more to replace the ink than buy the printer.  a new toothbrush and some mouthwash for zoe.  things you don't want to go do and things you don't want to spend money on.  and while we're at the store, zoe begins her 'i just want the 'polly pockets' doll from that painful target dollar bin.  that micro-aisle where old stuff made in china lands to tempt all children and because it's so cheap, ends up in our houses where we then curse it, because it's left somewhere and we have to either pick it up or holler at the kids to pick it up.

when we got back in the car, i decided to make it a teachable moment.
'zoe, i understand that you think it's cute.  there are lots of things i think are cute, but i don't buy everything- so why do you think that is?'
'i don't know.'
'well take a guess.'
'because you don't have that much time.'
'no, it's not really about time.'
'oh, because you don't have that much money.'
'true.  that is part of it.  but even if i did have all that money- i still wouldn't buy everything because we have to be careful with our money.  we need to be responsible with it- we need to think about other people.' 

i went into what i thought was great example of what it costs to buy one starbucks small latte every day- and how that adds up to about 84 $ / month and how that money could be better spent on someone who needs something.  and that need is different then want.  that need trumps want.

she said she got it.  but then started bemoaning me for not letting her buy the one dollar polly pockets doll.

ugghhhh!

we got bryn and came home for me to spend more time on the phone with the federal drug administration.

got jude.
got caught in a rain storm on the way home.
someone got a bloody knee.

i still don't know how much my medical school tuition was per year.
'it's been archived'
'what does that mean?'
'basically, that it's gone'
great.

my dea number did expire, two years ago!

but they did let me exchange my expensive printer ink. i even got 5 dollars in change. enough to buy a polly pockets and a latte.

but i won't.

everyone decided they like 'he's alive' best on the dolly parton cd.

and i've developed this habit of letting the kids watch a show and sitting out on my back porch with a cold glass of wine and potato chips (the gourmet ones- not 'lays', ok- so they're still chips- but i picked it up in italy).

so here i am sitting.
and....it's just a day.

happy easter!

today is easter.  and i have a celebratory migraine- either from too much left over easter bunny chocolate or my not-routine-over-exertional run, or not enough water and having wine with my easter dinner.  but despite my headache, it's been a good day.

the sermon was about the road to emmaus, about Christ showing up on an ordinary road to some of the ordinary guys who hung around with him.  it was not spectacular, it was not monumental or full of pomp and circumstance-it was plain and simple- kind of like the way he entered the world the first time- in a stable- with some hay and animals.  the point being that God shows up in our ordinary lives, where we are, not necessarily where we'd expect, not only in a church or a cathedral or a temple.  i have felt God show up three times, in an undeniable way, in very non-dramatic ways. but all of them were in san francisco, so maybe God likes the bay area as much as i do.

the first was late at night in my friends apartment when i felt really alone and tempted to reach for something i'd let go of, to deal with that feeling.  i was wrestling with this and i felt this strange sense of 'presence' that i can only describe as God.  i didn't hear any audible words, i promise, but if the feeling could be put into words it was saying, 'i am enough for you'.  

the second time was when i was pregnant with jude and had just been told at my 20 week ultrasound that he was likely going to be severely handicapped (see post from last year 'happy birthday jude').  that night i had a dream and God showed up in the dream dressed like a young doctor.  i was crying and said to him, ' i can't handle this'.
he replied, ' you have no idea what you can handle'
i told him, ' but i don't want this'
he replied,  'i know.'
and reached out and held me and cried with me.
when i woke up, i felt peace- i felt no matter what, with out a promise or even a word that things would be 'ok', i would not be abandoned.  that i was known, held, comforted.

the third time was in the basement MRI suite at moffitt long hospital- while jude was being swallowed by that giant magnet to look into his little head and see how much his tumor had grown- and we paced- and bit our lips and didn't make much eye contact to hold in the tears- and there it came- that sense of 'presence' followed by peace.  no words, not even a sense that the scan would be fine or that all would be well- just a promise that in the pain and crap and fear and suckiness of life, we are not abandoned.  we are not consumed.  and that is enough. 

basement hallways, my bed at night, a friends living room- ordinary spaces- but places of great need.

there have been other times though, other seasons of great need, when i wanted to feel that 'presence' and i didn't.  when i even asked, or cried out, but i felt nothing but the echo of my own need bouncing around.  and i don't know why this is.  i've wondered about it.  but in those times when i have not felt the 'divine', other people have showed up.  friends or family have responded to that need.  people who know me- who get me, or even if they don't, they try to.  sometimes it's even been people who don't know me, random strangers, or minimal acquaintances,  but some how, somebody has shown up.

maybe in those times when we know enough to know we are in need, when we know enough to cry out, God shows up in other people- our answers come in human words and embrace, a phone call, a letter, sometimes just a smile. 

maybe we are that answer for each other in this great spinning world.  so we need to be still.  we need to be 'present'.  we need to pay attention- even when we walk down ordinary streets- on ordinary days- beside ordinary people- who might need for us to show up.

saturday morning hemingway quote

All I wanted to do now was get back to Africa. We had not left it, yet, but when I would wake in the night I would lie, listening, homesick for it already.

Now looking out the tunnel of trees over the ravine at the sky with white clouds moving across in the wind I loved the country so that I was happy as you are after you have been with a woman that you really love, when empty, you feel it welling up again and there it is and you can never have it all and yet what there is, now, you can have, and you want more and more to have, and be, and live in, and possess now again for always, for that long, sudden-ended always; making time stand still, sometimes so very still that afterwards you wait to hear it move, and it is slow in starting.  But you are not alone, because if you have ever really loved her, happy and un-tragic, she loves you always; no matter whom she loves nor where she goes she loves you more.  So if you have loved some woman and some country you are very fortunate and, if you die afterwards it makes no difference.  Now, being in Africa, I was hungry for more of it, the changes of the seasons, the rains with no need to travel, the discomforts that you paid to make it real, the names of the trees, of the small animals, and all the birds, to know the language and have time to be in it and to move slowly.

Ernest Hemingway- Green Hills of Africa

good friday

it's Good Friday. 
my day started early, in the dark, after a night of loud rain.
after a day when our house when under contract.  after a day with events that lead us thankfully closer to living under african skies. 

yesterday i checked my email, hundreds of times, every 10 minutes, to see if we had a reply to our counter offer, to see if the potential house buyer was still interested. i was even driving myself crazy. but i couldn't stop, i just kept checking.  finally, at 6pm we had another contract to look over, a counter, counter offer.  i was so jazzed up from my day of anxiety and anticipation and fear that i couldn't even relax and rejoice- all i could do was go down the 'what if' path and the 'yeah but' path.  i sat on the porch with mike, a beautiful night, with my foot twitching and my mind racing. 

that is not peace.  that is not trust.

i realized what a season it is of humility- of knowing that we don't really have much control. because we don't.  i like control, i like preparing, i like knowing, planning.  i don't like limbo and waiting and things not being clear.

the funny thing, the frustrating thing, the ironic thing, is that this must be my biggest lesson in life.  this must be my biggest stumbling block.  this must be the lesson that my character in the story of my little life, needs to learn.  so i'd better hurry up before more drama befalls me!

you'd think, having a child like zoe- would 'learn' me.  but even that i try to grab tightly onto and force into the direction i think it should go, although power steering is clearly missing and i'm using all my pathetic strength to turn the ship around.  you'd think going through the experience with jude would double teach me.  to be still.  to let go.  to live in the moment.  i did it for a while- i even got pretty good at it. but, like an addict, if i miss a few meetings, if i get cocky, i'm back to my own ideas of how things should operate.

so now, i'm in the passenger seat- i might even be in the back seat.  it's up to the bank to decide if our short sale will go through.  its up to other people who want to support us, to decide when the funds come together and we can book our plane tickets.  really, it's up to God.  his timing.  his plan.  and my heart knows this, trusts this, believes this- but do i ever try to help it all along.

today is Good Friday.  today at work there was a Good Friday service.  i never get out of clinic before 1 let alone before noon.  but today, i did.  today i got out and headed for the chapel to be reminded of transcendence, to be reminded of why my attempts at control really don't matter much. 

and it was beautiful. and i sat in that pew and i cried.  i sat in that chapel with patients and nurses and administrators, sat down right between a maintenance guy and a visitor- and i, in my quiet way, transcended.  seven people got up and spoke about the cross, about the guy who hung on it, about his last words, about what they meant.  words that were both divine and incredibly human.  words of forgiveness- translating as love.  words of promise, of healing. words of relationship of caregiving. words of honesty-crying out to God with feelings of abandonment.  words of thirst. of closure. of entrance.

'forgive them- they do not know what they are doing.
today you will be with me in paradise.
here is your son, here is your mother.
my God, my God, why have you forsaken me?
i am thirsty.
it is finished.
Father into your hands, i commit my spirit.'

and hearing these verses, hearing these chaplains speak on these words, with power and depth, broke it down for me.  broke me down.  opened up my tightly clenched fists.   and opened up my heart. in this season of lent, this season of letting go, of leaning on God, i realized that i have been balled tight and trying to steer the ship.  the whole 40 days came crashing down in those 40 minutes and i sat and took in words like the dry dirt in the rain last night, pooling and then drinking in the pool, until i left soaked and saturated, until i was no longer thirsty, until i realized for me, it is finished.  i commit my spirit.

the words that mean the most to me, the words that bring me the most comfort, are the cry- the agonizing cry- why have you forsaken me.  that is a feeling i get.  that is a cry, i've cried. that is real and guttural and unifying. those words make Jesus more real perhaps than any others in the whole bible.  those words make me know that God, gets it. that God can take it.  and sunday, three days later, i know, i'm not comsumed.

i left light.  i left that heaviness in that room, beside that cross.  i left with a swollen heart of thanks that in giving up the control, there is freedom, lightness of being, joy and peace and all goodness.  i left knowing that i can't even give up the control with out help- the ultimate irony.

it is friday.

it is good.

tizita

today zoe and i watched Gone With the Wind.  it was a home school move. a little bit of history, old southern culture and a lot of romance.  i hadn't seen it in years and i wasn't planning on watching all of it- just slipping in and out while i got other stuff done. but i couldn't resist....that rhett butler and that scarlet and all that intensity.

scarlet is such a picture of drama. always wanting what she can't have. holding on for ashely, although he's married, although his lovely wife is her dearest friend.  and only in the end- the very end, when ashely's wife dies, does she realize that ashely has never really loved her and that she actually loves rhett- but a day late and a dollar short- he's gone- and she's left again, wanting what it seems she can't have.  tragic.

as i'm reading 'cutting for stone' again, it made me think of the ethiopian word- tizita- it's a type of music or song- about memory and love and loss- memory mixed with regret- nostalgia- perhaps best described as longing.

"The longing in tizita is without resolution, since the possibility of restoration or return is always thwarted." (Dag Woubshet)

i guess that is how it is in the great love stories.  not the more recent hollywood-feel-good-happy-ending ones- but the poignant ones that leave you wondering- leave you torn- like 'gone with the wind' or 'casablanca'.  desire and honor and passion and respect- all competing.

you can feel so intensely that longing- that rick is left with in casablaca- and that ilsa takes with her on the plane with laszlo.  knowing it will never be satisfied- holding on somewhere to what was- a beautiful little agony.

tizita is not just about romantic love, or for people. it can be for a place, a season in life, a beautiful moment- that has past- that is lost only because time has moved on.

i get it.  the tizita resonates with me.  i'm super nostalgic. i enjoy the complexity of our emotions.  and i savor my memories.  i revisit them- i pay attention to creating them.  i try to imprint the little pieces that make a moment.  the feeling of sun on my left arm resting on the edge of the car door while driving, the layered coolness of sand in the morning-slightly damp, and the soft whistling sound it makes as it squeaks under bare feet.  the outdoor smell of my children's hair when they come inside from playing.  the choice of someones words.  the view from the top of a hill in san francisco that i saw everyday after dropping zoe at school- and the path home from there.  because you don't always know what you'll be longing for- until it's gone.

so i take those things and sometimes i lie awake at night and i remember.  i drive back from her school and try to recall all the bits- the color of the houses- the street signs- where the trolley crossed. i go back to other countries- or seasons or days or even seconds.  the more you take in the more you have to take you back. 

reflective nostalgia- love and loss and longing-in some ways the 'tizita' is the art of life- the deep joy tinged with sorrow, with passage, with the unavoidable linearity of our lives. so we say to those places and people and memories the first line of 'tizita':

tizitash zeweter wode ene eye metah
i can't help thinking about you.

what?

it's passover.  it's holy week. 
i love the interlocking of the jewish and christian calendars.  both celebrating the intervention of God in our world.  both celebrating redemption, freedom from oppression, sacrifice, miracle. 

i close my eyes.
it's 10 degrees warmer.  the birds sound different, the darkness comes predictably at the equator, it's darker because there is less light noise in the town.  the mosquitoes are out.  the sky hazy- you can see the remaining sunlight if you look straight up- but in the shade it's growing dark. 

i open my eyes.
there are two robins on my mailbox.  someone walks by smoking. the 'for sale' sign in my yard is just a white post-one dimensional from my straight on view on the porch.  the street lights are one.  i can smell the smoke from his cigarette and people down the street are singing in english.  we have an offer on the house.  our mattresses are on the ocean.    i haven't gotten the mail yet.  there are two cars parked in our driveway.  it is paved.

i close my eyes. 
my friends have moved- they now smell the sweetness of the tall california summer grass and the licorice scent of the wild fennel and in the distance they can see the ocean.  they will feel sand between their toes, even if it's cold, it's still sand.  a small part of me is jealous. they inhabit where i left my heart.  their house costing 10 of my african years.  we are so far away now.

i open my eyes.
dogs are being walked.  people are running in their marathon tee-shirts in the left over light.  it is still and familiar.  my kids are reading books with their dad after dinner, after swimming at the pool with their friends, after school.  the leaves are not green now, just silhouettes wiggling.   i can find west by the shade of the blue and its' grip on the last of the light.

i close my eyes.
far away.  in the heart of where i'm meant to be.  the kettle will whistle and i'll have some tea with milk and maybe a biscuit.  the kids will be in there beds, with their nets, and the sounds of that night will become familiar.  the stars will be so bright with out street lights and city lights and the sky will be that deep known blue and the moon- it will be the same- just visible before it is for many people who i love.

it all goes so quickly- where ever we chose to lay our sleepy heads- and spend our sunny days.  and the meaning is the same whether scented with fennel or eucalyptus or burning leaves or petrol.  and we look for that intervention of God in our worlds, in our lives, to understand what we do, and why.  and under that blue sky and the laced outlined trees, under that same moon, we feel our smallness- and yet our miracle.

it's about perspective

a beautiful night.
the sky is light cobalt and the tree frogs have replaced the birds- a constant soft hum.
the kids are in bed. 
the day is closing it's eyes.

today was good in it's hardness.  it reminded me of things i needed to remember. 

mondays are always our toughest, readjusting from the weekend, and zoe was especially 'off'.  she was easily annoyed, things were 'scratchy', questions were being repeated, she had a far away look in her eye, there was disconnect.  i responded poorly.  i responded with high expectations and not a lot of understanding.  i responded out of a much bigger frustration than the monday morning challenges.  out of a 'need' for her to be normal, out of a desire to not have her be different.  i responded out of fear, not out of faith.  of course, none of that helped, either of us.

at around 11 am, my aunt called and asked if she and my uncle could take us to lunch because they were in the neighborhood.  sounded perfect.  we weren't getting very far at home anyway, and zoe tends to do well when she gets to socialize with people who like her, especially with people who love her. so i was hoping this would help reconnect the circuits.  it didn't.  she was stuck there too.  she sat at the burger place and talked american girl dolls, and played with her littlest pet shop pet.  she wasn't engaged- she was just 'off'. 

i was annoyed.  i just wanted to talk to them with out being interrupted.  i didn't want to hear about her dolls and i really didn't want her inability to participate to be so glaring.  i wanted them to see her and see progress.  i wanted them to see her on a good day- all circuits firing together-the system working in unison.  so it just added to my frustration with her, she wasn't living up to my expectations for the day. 

after lunch we got dropped off at bryns school and walked home with him.  i held his hand, zoe trailing behind, complaining about how it was so unfair that i wouldn't let her pet every dog we walked by.  i was so irritated.  i couldn't get out of my head either.  i went to my happy place.  i returned to ethiopia, to the pool with my book, and lisa, and happy hour and people who speak other languages and don't know zoe, with people who've never heard of a nonverbal learning disability.  when we got home bryn ate his snack and she went upstairs to play with the dolls and i got on the computer.  i wanted to catch up on emails, and to make myself feel worse by checking facebook, where everyone always seems to put there best face forward, where other peoples lives always look pretty. but that backfired.  someone had posted a youtube link about a girl with severe autism who is 14 and has never spoken, but recently learned to type and has been able to express herself incredibly well.  as i watched this girl and listened to her story and heard her words through the computer about her life-her perspective- her feelings- her sensory system-her isolation-her desire to fit in- her overwhelm by life- her inability to hold it together even when she knows what the right thing to do is because she just can't. 

her words were similar to how zoe will explain her world.  yes, this girl is an extreme example, but i realized, zoe's world is on that spectrum.  and then i felt complicated emotions;  thanks, sadness, impressed- but mostly i felt like an idiot.  how quickly i forget how much zoe does, given a differently operating nervous system, how far she's come.  how quickly i dive right into 'lets be normal'.  she gives me an inch, i want to take a mile. the worse part is that on her most challenged days, i add to her struggle by being annoyed with her- and i'm her mother!

i hung my head and went to talk to her.  she was sitting beside her cd player, playing the first 6 notes of a miley cyrus song, over and over again.  i told her i loved her and i was sorry that i was having a sticky day.  that i get stuck not understanding her.  i asked her what it feels like when she's having an 'off' day.

"it's hard to explain.  today it just feels really quiet.  like i have a bubble around me, and i'm safe in my own little world."

at least she said safe.  at least she didn't say 'i've created this bubble to protect me from my idiot mother who just doesn't get it!'  but i don't get it.  and when i think i might- it's for a moment or a day if i'm lucky- and then i forget again. 

it's about the perspective. 

is this a table or two people facing each other?

how do i see her? do i look at the image that appears obvious? or readjust my eyes and see the image formed in the negative space?  do i look at her as disabled normal or super highly functioning on the spectrum?

it's about framing it.  wrapping it up.  packaging. 

ironically, it's the frame you don't want - it's the label you fear- that can give the greatest sense of appreciation and thanks.

maybe someday i'll 'arrive'. 
maybe someday i'll be able to take her out of a binding and just for once and for all, see simply 'zoe'. purely. maybe someday i'll remember.

understanding backwards

i've decided it's the gray wolf.  our spirit animal.  we're all sitting out here on the porch - the five of us- our little wolf pack.  the kids are pups, always skirtling around at our feet- doing there own thing- but with us in reach.  i've got the spot in the sun.

there is a lot on my mind today. about our movement, our choice of motion, our need to not settle in, our need to push, to be in near constant challenge.  it's a funny combination of a natural process and one we also repeatedly question, mike perhaps more than me.  he'll say, ' do you ever wonder why we can't just have a challenge-less season?'  or 'why can't we just live our lives?'  i kind of know what he means. we're always stepping into something else- pushing the boundary-just when we get to a place where things are more comfortable. but does God ask us to be comfortable? i think not.  He asks us to follow him- even when it's uncomfortable- even if it's knowingly uncomfortable.  so, why are we surprised.  i also think that when you step into it- you keep going.  one choice leads to another choice, you move closer to one place and farther from another.  you go with that nudge- whatever you chose to allow yourself to be nudged by.  so i've been looking back at our decisions, at our nudgings.

i remember when we moved to san francisco.  we loved it.  if there ever was a 'spirit city' that would be it for us.  when we landed there before i started residency- i looked around at the wild calla lilies and the quick growing lemon trees' in our neighbors yard and that strong earthy smell of eucalyptus and knew that as foreign as it was- i'd found my home- my past life home. i remember thinking- we'll never leave.

when i finished residency and fellowship, i had a job as faculty at UCSF and mike was well employed as an architect.  we had a third baby on the way.  we had great friends and a great church and a small but great apartment.  we had good doctors, and zoe was well plugged into the san francisco public school special ed world.  we sat in the little breakfast 'nook' and talked about our future.  we knew we could 'make it' out there - we could stay- we could someday buy a place or move out of the city, but there would be cost.  there would be limited flexibility. one of us said if we stayed it would be a lot harder to move to africa.  we knew that choice would lead us in a certain direction.  not a bad direction, but a direction that would be different than if we made another choice. we knew it would discourage a move to uganda and we knew where our hearts were. we knew that while now wasn't the time, east africa was hopefully in our future.  we're not good planners, but we are good at listening to the stirrings.  we never had 'a plan', but we know our priorities. 

when we decided to home school zoe- for me to basically leave the academic medicine track- we knew it was letting go of some things- we also knew it was embracing other things.  the great shift.  the change in focus.  i wrote in my journal - ' is this getting us closer to uganda?'  in an almost subconscious way.  like if we drilled to find water for a well, we'd be closer now.  a choice, made for the right reasons, for zoe, hard as it was - but aware of the possibility of it leading somewhere else.  and it has.

but it goes the other direction too.  because i could spend my whole life with my identity, my purpose wrapped up in having a child with special needs.  she, her issues, could become my "M.O"(modus operandi).  i found this happening (as many of you know) especially when i was her mother and her teacher and her friend and my hours and her hours were the same, and my work was working with her, and my view of the world became small and limited.  it became an intense and detailed focus, and it was about right and wrong ways, and my control was key to the success or failure, and her happiness and my happiness was dependent on me.  and it was kind of awful.  overwhelming and i would even say, wrong.

when we decided almost a year ago, to move to uganda- the focus shifted and i stepped way back.  i began to remember that we are one small family in a great big world.  that she is one girl with some needs, in a very needy world.  that i am one person who is, yes, her mother, but also a person with other skills and gifts.  that in the grand scheme of things, we are really small, our problems pale in comparison to most of the worlds problems and looking out at the rest of it all gives a beautiful and freeing perspective.  that God doesn't call us to 'easy'.  he doesn't say- just get comfortable and relax.  He doesn't give us one challenge per lifetime.  He calls us to 'do'.  to love, to serve, to make it better, to get dirty, to ask hard questions, to lean on Him, to let His grace be sufficient.  it took me being broken by it, to lean into that grace.  and relinquishing that control brings peace, unclenching my fists, frees my hands.  that turning away from myself- opens me to give out of that grace.

i'm still understanding it backwards. 

because someone asked why uganda of all places

that is what the new leaves are doing- celebrating.  it's this gorgeous, perfect, dry, blue sky, crisp and windy day. a day to be celebrated.  but, we needed to do the stuff we've been doing every saturday for the past 4 months- clean and work on the house.  my mom and dad took the kids to their house for a few hours for us to finish up and we did and then mike and i went out for a long walk.  our house is sandwiched between two parks that both have festivals today, so there were lots of people out celebrating this day.  we just walked and walked and i felt very quiet.  i was thinking about how we just can't seem to sit still, he and i.  how our shared spirit animal is less organized than the migratory bird, we are some nomadic animal, an animal that goes where the food is, carrying it's young on it's back, monogamous, not rooted to it's surroundings. i was thinking about how all the movement, the lack of static, forces you to either draw closer together or to push apart- and i am thankful for our being drawn close. 

someone asked why uganda of all places to move and teach and work.  to start with, i believe God speaks to us by stirring things in our hearts, and before i met mike and before he met me, our hearts had been stirred with the same sticks.

when mike was 18, his family went to kenya to visit with family friends who were missionaries there.  his heart stirred.  sometimes you don't know why you feel connected to one place and not as much to another, even if you love to travel as we both do.  he felt something during that month- a stirring- that made him want to return.

when i was 17 i traveled to kenya with my dad and had the same stirring.  i remember the dusty streets and the tea fields and the great rift valley and the sun setting and the scents of carved wood animals and the richness of the people in their smiles and their skin- the toughness of their often bare feet and the bumpy road- and i knew i wanted to return- to be there- to know it.

mike and i had met a few times before we fell in love, but i knew when i was 18 that he was who i wanted to spend all my years with.   we got together when he had just lost his best friend in a car accident - our mutual friend- and our world was weighted. we spent our time trying to understand a God who would allow such an inspirational,vivacious person as matt to die so young.  there was an intensity to our love that needed to counter act all the sadness we'd felt.  those heavy months drew us close like magnets.  he had very few things in his little apartment in western massachusetts, but the two things i remember were an african tapestry and two carved african ebony book ends.  i had similar artifacts.  of the things that were meaningful to us - somehow east africa was in there for both of us.

we married young, in our early 20s and began our crazy decade of studying architecture and medicine.  but we didn't go back to africa together until we'd been married for 10 years, had our degrees and one child, zoe.  and we went to uganda.  we worked there for a month and began building relationships with people who are still there- people we've known now for 7 years.  we have returned several times alone and together, with the same sense of not questioning 'where' but questioning 'when'.

the fact that we've both been stirred in the same way- even in different professions- speaks to us. the fact that both of us feel - despite being in our now 40s, despite having 3 little kids, despite the appearance of being 'settled' - that we are meant to return to uganda, means something- it's not random- and it's rare. it is where we feel led to go.  all those other places mentioned in the comment sound fabulous- to visit- to see, but i don't feel drawn there, we don't feel drawn there- not now anyway. 

i think we'd both like to 'be' there for a while.  to stay a bit.  to not pack up.  to celebrate the response to that stirring we've both felt for over 20 years. and to allow the new challenges to draw us nearer again, in a new season, in a new home.

saturday morning poem

this was sent to me as a 'pass it on' email.  it is a poem written by a teenage girl with terminal cancer who wanted as many people as possible to read it.  she wanted to remind people to live life to the fullest, because we often forget, time is short.


slow dance:

have you ever
watched
kids 

on a merry-go-round?

or listened
to the
rain?

slapping on the ground?

ever followed
a butterfly's erratic flight?

or gazed at the sun
into the fading night?

You'd better
slow down.

Don't dance
so fast.

Time is short.

The music won't last.

do you run
through each
day

on
the
fly?

when you ask how are you?

do you hear the reply?

when the day is done

do you lie
in your
bed

with the next
hundred chores
running through
your head?

You'd better
slow down

Don't dance so fast.

Time is short.

The music won't last.

ever told your child,
we'll do it tomorrow?

and in you haste
not see his sorrow?

ever lost touch
let a relationship die
'cause you never had time
to call and say 'hi'

You'd better slow down.

Don't dance so fast.

Time is short.

The music won't last.

when you run so fast
to get somewhere

you miss half the fun
of getting there.

when you worry and hurry
through your day,

it's like an unopened gift
thrown away.

Life is not a race.

Do take it slower.

Hear the music,

before the song is over.

a night of blues

last week at work, one of my patients mentioned that his father, age 84, is a relatively famous blues musician who just returned from touring in europe. 

what? 

that is too cool.  this guy is 60, and his dad is alive, and around, and making music?  so, i coudn't help it- i had to ask if we could meet him, if we could go and hear him sing and play.  my patient was elated- he immediately set up a time and a place.

so last night, zoe and i, went to a little blues venue and chilled to the beautiful music of 'eddie tigner and the chicken shack'.  it was fabulous.  my patient met us in the parking lot, in his granny walker, with a giant grin on his face when he saw us pull up.

"i didn't think you was comin'!"

"of course! we wouldn't miss it for anything."

zoe was of course, star struck and loving it.  she danced and sang and shook to the music and met the whole band and left with a signed CD from eddie himself.  my patient, his son, was thrilled, he sat on the seat of his walker and rocked out, playing 'air piano' and moving like he'd done this his whole life, as he probably had.

and i just sat there loving it and thankful.  that barriers get erased, that we're all just people having fun together, as his dad went out for a smoke break with his 'More' brand cigarillos.  he returned to play the song 'Georgia sweet georgia' this little 4 foot 11, 84 year old african american power house, with his 6' 4'' guitar player and his white drummer and bassist.  i sat there and moved to that beat that gets in you, and loved all of it, the sounds, the smiles and the history.  i kept looking at his old hands as they slid over that keyboard with that glitzy diamond ring and a knowledge of those keys that demanded no sheet music, those hands played from the past, as his eyes followed the crowd.  i thought about his hands and his eyes and what he'd seen in his sweet georgia over the past 60 years that he's been playing music.  and i loved the south in a way that i hadn't before.  i loved the transformation and the way music can tell a sweet, sad story.  the way the notes can talk beyond the words themselves, and i understood why songs can hold so much, how they can stroke the soul.

i don't know who was happier, me, zoe or my patient. 

but it was a night we won't forget.

TEACH IT, LIVE IT

this day i've been inspired, tired, thankful, disappointed, re-energized, and reflective. 

this day i started writing about about the matching of socks while folding laundry and how mike and judes always match into pairs and the rest of us, rarely.  and wondering what kind of a metaphor that is about us as people- about predictability and the lack of it.  i started writing about zoe's week, about her three amazing days and her tougher last two days.  about how the scratchiness of her clothes acts as a thermometer to gauge how challenging the day will be.  i started this day thinking about being thankful for the three fantastic days- because they provide the hope that she has it in her- that we will "arrive" someday.

this day i spent a lot of time doing and re-doing tasks related to moving to Africa.  a lot of time trying to get our fund raising letters out.  branding ourselves- who are we- what are we doing- why are we doing it.  trying to make it make sense- and make it pretty. trying to explain the great need for higher education in Uganda- the great need for medicine and for public health- for people to know how to prevent malaria, and HIV, and how to get clean water.  trying to explain why architecture and engineering are important.  how these things are related.  how people who are educated well are empowered, how education is translational if people are taught how to think and not just how to repeat information. how education spreads knowledge and creates empowerment, how knowledge and empowerment fight injustice and injustice fights poverty and poverty is so big and wide and consuming and deflating.  how poverty dis-empowers people and spreads disease and violence and sorrow. 

and as i was rushing my all my kids into that giant rental Suburban machine, to truck them over to paper-source to buy my green stickers for printing our logo "TEACH IT  LIVE IT", i saw a facebook post from mukono, uganda, where we'll be living in 5 months if people decide to support us in this work.  it said there were riots in the little town where we'll be living and in the capital, with bullets and tear gas.  and there was a cobra in the neighbors house. 

and it gave me pause.  i had a moment.

what?  what are we doing? 

me in this fortress of a car, abandoning all, choosing to live with real instability- with danger.

my little green TEACH IT, LIVE IT stickers might be pretty, but the reality might not be.  teaching it and living it, might not be quite as pretty.  it's risky.  it's risky for all 5 people in our family- those who's socks match up and those who don't.  and does scratchy really matter when people are dealing with riots and tear gas, or bullets? 

but the truth is, there is a huge need for higher education in uganda, for empowerment, for the fight against injustice, for the fight against poverty, for medical care.  cobras and tear gas, riots and bullets don't change that.   in fact, they scream it.

so, we will go.  to TEACH IT, to LIVE IT.   to do our best to humbly meet the needs we can, with the tools we've been given.  and who we are as people will have very little to do with matching socks and and scratchy clothes, and it will all be unpredictable.  and we will live in the days of hope we see- that let us trust in all of our 'arrival'.

WWW.KRISANDMIKEREID.COM

hang up the coat

the mornings are so beautiful now. full on spring. the sun shines in shy from one side of the yard like a spot light on the azaleas who are standing up so straight, proud and pink and full.  it's all screaming to be appreciated, to be embraced, to not be forgotten.  the coffee tastes better out there in the outside air. 

this morning i was taking it in, and thinking about these crazy days we're living now.  about our beds and our pots and our books sailing across the ocean ahead of us.  about how we're buying things over there from people who are returning to the states- even though we don't have our plane tickets yet, even though we have no offer on our house, even though we don't have our funds raised.  i was thinking about some of our friends who are doing cross-cultural moves too.  friends who's companies are paying for their move, their housing abroad, their housing at home while they're abroad, the kids school.  i was comparing our situations and i was feeling kind of sorry for myself. 

i was thinking about this season we're in as a family and as individuals.  it's really easy to get overwhelmed and to loose sight of the goal. it's easy to get tired, to clamp down and be 'done', to give up, because it's not getting easier, because none of this is 'covered', none of this has any 'guarantees'.  i'm pretty good at getting bogged down in the details.  i'm really good at getting frustrated by the little parts.

then i remembered the karate kid.  i watched it with my boys a few weeks ago, the new one with that adorable jaden smith.  i remember the monotony of the seemingly pointless work he did- pick up the jacket, hang it up, take it down, put it on, hang it up, take it down, drop it, pick up the jacket--- on and on---for hours, then days, maybe even weeks.  i remembered how frustrated dre was, how mad he got. how limited was his view.  and then the power in that great moment when mr. han reveals the big picture. when mr. han, his tutor, his teacher, shows him so beautifully how all those misunderstood hours brought him to exactly where he needed to be to fight well.  the perfect orchestration by one who knew, one who could see the forest through the trees, who knew exactly what the training needed to be- even though it was disguised in the mundane details and the little parts. 

that's where i am right now.  tired of hanging up the coat.  wondering why putting it on and taking it off again even matters.  getting frustrated by just seeing the leaves and bark in front of me, forgetting that my view is limited.

and i thought about faith. about a confident belief.  about the necessity of confidence in faith.  like zoe with her goldfish miracle.  i think the opposite of faith is fear- at least that's how it feels to me and those tend to be my two operating systems.  i prefer faith, but fear is so much easier! 

but what beauty in remembering that, in remembering who my tutor, my teacher is.  that these baby steps of faith, these routine exercises in being dependent, in living in the unknown, in our seasons of frustration, of asking why? and are we crazy? and what are we doing? the seasons of seeing through the glass dimly, of walking to the end of the road- because that's all the direction we've been given, and of then waiting for the next move; all of it,  it's all practice for what comes next.

so i finished my coffee and the sun was a little bolder and all the pink flowers seemed to whisper- 'we're fuller and brighter after the rain, it's not that different'. and for the rest of the day 'hanging up my coat' became a pleasure.

pink cadillac

this week i'm driving around in this giant chevy surburban rental, courtesy of mr. paradise, while my car is in the shop. i must look like the total soccer mom- but i'm totally fooling everyone. it's not me, i don't have enough kids and none of them play soccer.  if i were to drive a big car it should be a mini-bus- the small yellow one that the special students rode on, (and my friend lisa who lived on a windy road with not enough kids for a big bus).

when i was a kid- i wanted to by a used mail truck as my car.  it had to be something quirky and different.  but it was  pre-internet and i really had no idea how to find one. i think i called the post office to find out what they did with all the run-down-but-still-functional postal trucks.  being that it was a government agency, i didn't get very far.  then i decided to save up and get an old VW bug. 

i had a job three nights a week serving dinner and washing dishes at the Champion Center- a home for retired priests. i worked mostly in the kitchen with two other punk kids who'd been there for a year.  they wore black and spiked their hair and had tee-shirts that said 'minor threat' and chains to hold their wallets and listened to the 'dead milkmen' and talked about having sex in the graveyard behind the center. i was a fairly innocent-retro hippy-ish kid my senior year.  i listened to crosby, stills, nash and young and wore moccasins with soft leather soles and balloon-y transparent pants from india.  i 'hung out' in harvard square and liked silver dangley earrings with teardrop shaped semi-precious stones in the center.  my boyfriend loved the grateful dead, smoked cigarettes and had been kicked out of rehab, which thrilled my parents. he smelled like tobacco and strawberries and patchouli, and my mother said that she could tell by his eyes that he'd seen more things than i had in life. she was for sure right- but i loved him.  not in the permanent sense that they worried about- but in the way that you do when you're seventeen and you really kiss someone for the first time.  the way you do when you find someone you connect with who is completely different from you- but you share some desire to know each other at the same level.   the way you do when you spend hours listening to music in a hot attic room of the house of a boy in who's eyes you stare into and see a different world.  and it was with that boy that i skipped school and went to hang out in harvard square the day after i'd purchased that VW bug, temporarily costing me my parents trust and permanently costing me the loss of my first car.  there were lemon laws in massachusetts and my senior skip day prank stole the attention away from a proper timely inspection of that car.  so i was out about $600 and my seventeen year old freedom.

my friend johnny was a car guy.  he worked at a gas station and had a couple of old cadillac's in his yard that he worked on and drove around in.  the best one was an old gray one with red leather seats and a plastic lobster strapped on to the front grill- the 'wack-a-lac' (his last name was wacker).  that car had personality that could carry someone who needed it.  johnny didn't need it, but it was a good match for him. we spent a lot of time driving around in that car and listening to bruce springsteen while he tried to convince me that my boy from the other side of the tracks was no good for me.

that boyfriend of mine drove an old blue pontiac bonneville- he hated it, but pretended not to.  then when he turned 18 he came into some money, waiting for him since he was 5 and was hit by an orange VW bug, and he bought a honda prelude.  i think it ruined him sort of- like me in the suburban- it just wasn't him.  things changed after that.  he had to figure out who he was again.  that's why car's should just be what they are- vehicles.

i've many other cars between 17 and 40 and i don't consider myself a car person.  i think of them as functional- if they get a ding- i don't get stressed out.  i've never waxed a car, or even had one detailed.  as long as it gets me there and has heat in the winter, i'm OK.  but when we had bryn and needed something with enough room for 2 parents and three car seats- we had to at least look at the dreaded minivan. (for a great post on minivans- see my friend kim's post: http://www.gradydoctor.com/2011/01/dirty-little-secret.html)  thankfully, i got fully carsick while riding in the back during a test drive.  phew!! and we got the honda pilot.  i like being up higher off the road- i like the perspective.

so that's it.  me and cars.  now we're getting the pilot all pretty to sell and the old CRV too (mike is very honda brand loyal).  pretty soon we'll be buying a car that rides on the other side of the road and expects to see more dirt than pavement, more bumps than smooth.  and this time, i'm just hoping for seat belts and maybe an airbag.

four-leafed clover

i was sitting in the grass in my yard in front of a mountain of our belongings.  i was supposed to be tallying the contents of the boxes and their weights- but instead- i was looking for a four-leafed clover.  i wanted some little blessing sprinkled next to me.  i wanted some magic.  of course whenever i've gone looking for luck- i've never found it.

i remember being 10 in 1980, with my turquoise rabbits foot hooked to my levi cut-offs and my giant back pocket comb (with my name on the handle), exaggerating how tiny i was back then, my sports socks pulled to my knees and a powder blue san diego chargers football jersey. good times.  i remember looking hard for four-leafed clovers and shooting stars and wondering if they ever even really existed because i never found either. 

then two summers ago, the summer i decided to home school zoe, i found two right next to each other.  i literally stumbled upon them, which i guess is the point.  i was walking home from somewhere with the kids doing the half-listening but answering gig, while thinking about something totally different.  you know that, 'oh it is a really big bird! wow!' which is an appropriate response, but if asked a minute later what you just said, you'd have no idea.  it's amazing how the mind and the body can go on automatic pilot.  i remember learning to drive.  i would pay so much attention to every detail in the car and outside the car- but now i just drive while doing a few other things and end up somewhere and the driving part was completely incidental. well i can be that way with my kids sometimes- not usually- but sometimes. so while answering some question with part of my brain, most of my brain was processing this massive change i was making- to be home- to be a home schooler- with zoe. i was thinking what a ridiculous idea this must be and i was praying silently for a sign or an answer about what was the 'right' thing- because for me and my kind- there is a haunting feeling that there is always a 'right' thing (singular)- you just need to find it.  so as i thought and talked and pushed the stroller up the hill to our house, i looked to the right and in the middle of a large patch of clovers was a four-leafed one!  the first one i'd ever found- in my 38 years.  i bent down to get it and right next to it was another one.  double luck! at the time it was an affirmation.  a little tiny blessing- unsolicited.  perhaps in retrospect, it was a premonition- good luck, you're going to need it!

but i don't really believe in luck and superstitions and astrology.  i've had patients come in with a nose bleed that won't stop and when i asked if they pinched it and tilted their head back.  'no,' they say, 'why would i do that, i put my keys on a string and swung it around so the keys dangled down my back.' right,  i'm dying to know where that one came from.

patients have told me that if a bird flies into your house it means someone in the house will die that night.  the one time a bird flew in my house in san francisco, i had a miscarriage that night.  so what do i know, it's still interesting to think on these things sometimes.

according to astrology, as a sagittarius woman, i'd do best with an aries man, and my worst combination would be with a capricorn (which is mike.)  we did get a good laugh over some of the 'coincidences' of our descriptions and our challenges.  lucky for us, it said if we work at it, we can achieve greatness.  too funny.

so i don't know why today i was sitting there looking desperately for a leafy piece of luck- but i was.  maybe it's what happens with great change near by. we go looking for physical cosmic confirmation.  but as our stuff goes off 5 months ahead of us, uganda still feels right, even with out a four-leafed clover.

is a preying mantis good luck? 'cause there is one hanging out on my screen porch right now.  rats.  on closer inspection its just a grasshopper.

recovery

better.  i'm better and just in time to pack up our lives.  we found a way to ship some things to Uganda for pretty cheap.  so mostly books and some toys and all our pots and pans are going on a crate tomorrow.  the kids are kind of freaked out.  zoe especially.  she keeps saying 'you don't know how this feels! it's harder for me- because of my 'you know', my nonverbal learning disability!'  but i do know.  i know it's another step closer.  i know it's becoming more and more real. but for me it's more exciting and less scary than it is for her.

but yesterday when i was feeling so sick i kept thinking about how hard it will be when i get sick in uganda.  when i get sick far away from 'home' in a new 'home' with a few less of the comforts.  where ginger ale and chicken noodle soup aren't available 24 hours a day.  and where my mom is on the other side of the world- because when i'm sick, i still want my mom- or at least two husbands- one to take care of me and one to take care of the kids and do everything else life requires.  i also thought about how hard it would be to be old and sick- or to be chronically ill and then get sick on top of it. i thought of my patients- the ones i'd seen that day. 

mr. n who has such an amazing attitude despite someone neglecting to place a feeding tube before radiating his neck cancer so that he lost 40 pounds during treatment.  still smiling, full of hope and joy.

mr. a, lying cockeyed on his bed, saying 'come on in darlin' and have a seat' with his white hair sticking straight up, chatting on the phone with someone in costa rica.  he got divorced 10 years ago and moved to there at the age of 50, and has now returned to get treatment for his cancer.
'hey, i got to get off the phone, there's a nurse in here to see me.'
'doctor'
'oh- see- now i went and insulted her pretty lil' face- sayin' she a nurse'
a total character.

mr. p with end stage heart failure and schizo-affective disorder, staring straight ahead while i sit on his bed.  i ask him how he's feeling, how his breathing is today, if his feet are more swollen, if he's having any pain.  his answers are single words.  i'd never met him before- but his disconnect was bothering me.  i scootched closer and looked him right in the eye,
"are you sad?"
he laughed- 'yes. i am.'
i asked where he was from, how long he'd been in atlanta, and a few other questions.  he made a few comments that sounded off and since i'd just helped him into a wheelchair, i was worried he'd get up with out help and fall.
"mr. p, are you confused?"
he laughed again, "not anymore than usual."
"ok- just promise me you won't get up out of this chair with out help. i don't want you to fall."
"i promise."

mr.s and his wife of 56 years, 4th admission for pneumonia and a copd exacerbation, sharing how they've driven 100 miles to the VA every thursday for 12 years for his post traumatic stress disorder group for WW2 and korean war vets.  still coming- even that far- even with his oxygen- even though moving steals his breath.

i really hope i didn't get any of these guys sick.  i look back on my hours with them and see in each a lesson.  mr. n,  choosing optimism.  mr. a, living life to the fullest.  mr. p, engaging in his own way.  mr. s, perseverance.  but how could i forget, mr. r.  from mr. r, i learned the lesson again of treading lightly, and the importance of hope, and non abandonment.

mr. r was there last month when i was last on call.  he was there in march with what he thought was possibly a curable cancer- getting radiation and chemo.  he'd gone to a rehab center to get stronger and was then to come back for more chemotherapy.  but instead he came back with a bad infection and a big swollen shoulder.  it turns out that his cancer had spread. yesterday morning, he'd just heard the news before i came into his room.  those moments when life changes forever. the cosmic shift.  i sat with him for a long time.  i didn't say much - i just waited- i let him talk- and cry- and be still.  i was frustrated.  the news was kind of dumped on him.  there wasn't a plan given, there wasn't a way for him to frame it, and he was all alone, in his bed, with a sore shoulder and rain outside.  he was talking about going home to die.  he was talking no hope. he was assuming this was his very end.  he asked me to give him something to 'knock him our for a while'.  when i did talk, i told him he wasn't alone, we needed to find a way for him to frame this, we needed to know what the options were, we needed to hear from oncology.  i told him i would treat his pain, and his anxiety, and that i would stay with him, but i wasn't going to 'knock him out for a while'.  even those few words gave him a new context- a bit of hope.

in my own little 24 hours of illness i learned to be so thankful for health and recovery. , as we all live and learn together on this great spinning world.

another saturday poem

i'm sick. like sick to the point where you wish you could just stop breathing and be put out of your misery sick.  i'm also on call, and rounded (medical word for going to see patients in the hospital) on 8 sicker people before i came home and got sick. i really hope i didn't make them any sicker.  but after 8 awful hours, i think i've turned the corner- which means it's my kind of an illness- the sprinter kind- violent, terrible, perfectly horrible, but short lived. now i'm in bed and achey- which is way better than not being able to get up off the cold bathroom floor.


so because it's saturday and because i'm feeling badly...here is a poem by rainer marie rilke


You come and go.  The doors swing closed
ever more gently, almost with out a shudder.
Of all who move through the quiet houses,
you are the quietest.

We become so accustomed to you,
we no longer look up
when your shadow falls over the book we are reading
and makes it glow.  For all things
sing you: at times
we just hear them more clearly.

Often when I imagine you
your wholeness cascades into many shapes.
You run like a herd of luminous deer
and I am dark, I am forest.

You are a wheel at which I stand,
whose dark spokes sometimes catch me up,
revolve me nearer to the center.
Then all the work I put my hand to
widens from turn to turn.

the fish story

this is the story of a little girl and a great big faith.

a few years ago, zoe wanted a pet.  it was before the days of clover the dog.  with three little kids, one being zoe, we needed the most low maintenance of all pets.  say it with me now..... the fish.

we went to the pet store.  we got the traditional 'fishbowl' bowl.  we purchased some colored rocks and a single plastic plant and the kids picked out three goldfish, "whitey",  "finny", and "sparkles".  i was impressed at the names actually.  zoe names most things exactly what they are.  "this is my turtle, i'll call him turtly" .  so i was expecting "fishy1, 2, and 3".

"whitey" was an all white goldfish.  "finny" was black, and had fins (but so did they all).  "sparkles" wasn't really sparkly but she liked the name- and so did i.

whitey and finny died with in 2 days.  perhaps they were over fed. perhaps they were traumatized by three faces starting at them and tapping on their bowl all day.  perhaps they felt badly that sparkles had the better name.  but there they were- belly up.

the boys were really little and didn't yet appreciate ownership or death.  they were more fascinated that the fish had stopped swimming and now could only float.  they were more fascinated by their next trip down the toilet to fish heaven. technically, whitey was bryns and finny was judes- so zoe wasn't that upset- because at least sparkles was still alive, at least sparkles swam on.

i realized that fish weren't like plants (although i kill most plants in my house too) they might need something other than just water.  i also realized that i might be in for regular trips to the pet store if i didn't figure out how to keep a fish alive.

so we went back to the pet store and got the fish tank upgrade- the one with the aeration system.  now sparkles would have small bubbles to freshen her water.  (i know it was a her- because all zoe's animals and any other object in her possession, are always female).

sparkles was happy.  zoe was happy.

this went on for a while.  months actually.  she'd get fed, too much one day, then not at all for a few days.  every so often a pondish smell would waft around the house and we'd realize it was time to change the water and so we did- gently.  always slowly transitioning sparkles into her new environment- a bit of the old with a bit of the new water.

but one day we came home from church and noticed sparkles was belly up floating at the top of the fish bowl.

"zoe,"  i said, " i'm so sorry, but sparkles has died."

"no mommy, i think she's sleeping."

"no, zoe.  remember whitey and finny?  this is what they looked like when they died.  see?  she's not moving." i said while tapping on the bowl and watching sparkles body float with the shifting water.

"i know the Lord can heal sparkles. i'm going to pray to the Lord."  said zoe emphatically as if she were never more sure of anything in her life.

"oh zoe," i said, " i know this is hard.  you've had sparkles for a while now.  i know it's so hard to have her die.  but God doesn't really work that way.  He doesn't bring fish back to life."

"well, yes He can."  said zoe.  again, no doubt.

'OK God,' i'm thinking.  'here is a little girl with a great big faith.  how are you going to handle this?'

"oh dear Lord Jesus,  please heal sparkles!  please bring her back!  i know you can."

i was holding my breath, wondering how long this was going to go on.  how many prayers would need to be uttered before she'd accept sparkles fate and we could flush and move on.

zoe stood there transfixed, frozen beside that bowl, eyes on sparkles.  i stood there beside zoe, watching her watch her fish.

"mommy! look! look at sparkles!"

i looked.  and there before my doubting eyes was the wiggle of a sparkly tail.  there before my grown up eyes, sparkles flipped over and swam around the bowl mouth opening and closing- alive as ever.

i was shocked.  i think i stood there with my mouth opening and closing too.

"i told you mommy! seeeeee"

sparkles had indeed come back to life.  i saw it with my very own eyes.  this happened 3 more times before sparkles finally did die months later.  who knows, maybe sparkles had a fish seizure disorder, maybe sparkles had narcolepsy.  maybe sparkles had a really good sense of humor and could play dead really well. 

but for zoe, God had heard her.  for zoe, God had answered her prayer.  her faith was honored.  possible reasons didn't matter, explanations were not important.  a little girl believed in the intersection of the spiritual and the material.  but i don't know if it was more for zoe or for me.  to be reminded of transcendence.  to be reminded of the importance of faith, of the need to believe.  to be reminded that miracles can happen.  to reminded and taught that life is full of surprise.  that parents don't know everything.  and that God hears little girls.

wonderful

today we went to the dentist.

well, the kids did.  i was chauffeur, hand-holder, reassurer, payer.

good times.  no, really, they did great.

i love the predictability of the boys.

jude was first.  of course, since he will barely let me out of his sight, i went back with him, sat on the window sill, just to be there, "just in case i need you mommy".

bryn was next.  last time we went to the dentist, i had to lie down in the chair with him lying on me, to actually get the teeth cleaned.  x-rays were absolutely out.  but this new 4 year old independence was fantastic. he was all about doing it himself.  he climbed right up there, mouth wide open (even though they were still setting up).  ready to show how tough he was.  x-rays all alone- mouth still wide open (because you are at the dentist).

i told them that i'd saved the hardest patient until last- zoe.  the sensory-troubled one.  the one with braces.  the one who doesn't like 'feeling upside down in those dentist chairs'.  the one who gathers all the stuff animals she can hold from the kid-friendly waiting room, to join her in the chair. 

no, they said, no- you saved the sweetest one 'til last.  "we love zoe!" they said. "she is so kind.  so gentle.  so sweet."

if there is one thing i've learned from that girl, it's that compliments will get you everywhere.

the beauty of zoe not having much of a filter, and her being typically happy, is that she speaks her happy, appreciative mind without hesitation.  she exudes positivity most of the time, and about 100% of the time with strangers (except for the fish counter man at publix with the lobsters- see post 'begonias and little agonies.')

i'm not sure where she got this, but a year or so ago, zoe began ending many social activities with  "goodbye,  your wonderful!!" 

people LOVE this.  and in turn, people LOVE her.

perhaps the beauty lies in that she absolutely means it.  she usually then gets in the car and says to me, "that wonderful barbara mcclure- she is wonderful!"
"those wonderful brewsters!- they are wonderful!"

who doesn't want to hear that they are wonderful?

she might have gotten it from my mother- who also exudes positivity- who can be filter-less and loving and sincere.  i remember getting off of many flights, not even having been gone that long, and my mom waiting at the gate (back when you could) with a giant grin saying "YES! you're home!!!"  as if i'd come back from war.  i'm sure the other people watching thought i was, i was just gone for the weekend, but boy did i feel special.

so i've begun to spread the love.   to be OK with affirming people even over small things.  because positive, loving energy is good- always.  because everyone wants to be reminded that they are wonderful.  because when someone says you're wonderful, you feel more wonderful, you treat other people better- you think maybe they are wonderful too, you think maybe this whole great spinning world is wonderful.  it gets paid forward. 

i love that she tends to shout it back at the person she's leaving, with her hand beside her mouth like a megaphone.  i love that she says it with a big grin. 

i love that i know my girl just made someones day.

sweet world

i'm sitting here, and i'm just thankful.  thankful for the sun and the shade.  for the patterns made by the light and the leaves- the negative space- i'm thankful for the contrast.  i'm thankful for the good days and even for the bad days- because they too, provide contrast.

this week has been a week of being reminded of many things.  some in memory, because of the warmth and the pool, and the book i'm re-reading.  and some in lessons re-learned. 
and the top ten are:

1. i'm not in control of much at all

2. kids are really funny- they will totally make you laugh, and laughter is healing
"mommy i just banged my eye on the crust of the window"

3.  at least when you feel like you hit the bottom, there is no where to go but up

4.  the fact that life is unpredictable, is predictable

5.  the greatest pleasures in life are found in the smallest moments- in the little things

6.  people will surprise you- there is beauty everywhere- look for it

7.  exercise is always good, for all parts of us

8.  God is faithful

9.  "the uneventful day is a precious gift" (cutting for stone)

10.  i'm not in control of much at all

there they are- the things i continue to relearn. 
it's a sweet, sweet world.

my little petunia

"i'm a lonely petunia in an onion patch la la la la la la"  zoe's favorite song of late.  (listen to it on the sidebar)

zoe's kindergarten class float in the san francisco cherry blossom parade (she's in the center)

so i asked her what it meant to her.

"well, it's about friends and feelings."

"tell me more about that" i said.

"it's like this, i'm the petunia, and there is this onion patch.  the onions are all friends, and i'm alone.  but then one of the onions becomes my friend, and i'm not alone anymore.  isn't it so nice and relaxing? it makes me calm."  she said.

little insights.
sensing of a difference.
acknowledgment of the feeling.
awareness that it only takes one onion to be happy- not the whole patch.
hope.  calm.

zoe (in 1st grade) with her friend alec

Grace at the pool

it's late now.

a gorgeous day.  first day at the pool.  the kids playing, me reading.  close my eyes, feel the heat, i'm back in ethiopia.

after that crazy night, zoe had one of her shining moment- reminding me that she does have legs to swim, hands to clap, a voice to speak, and a heart that warms others.

i heard her talking to a young woman in the pool.  she was 22 and hadn't learned to swim so she was cooling off by walking around the shallow section.

"why are you walking instead of swimming?" asked zoe.

"i don't know how to swim."

"perfect! then i can teach you- come on- it's not that hard!" says zoe.

"we'll that would be something because no one has ever been able to teach me how to swim!"

there they were on the side of the pool- zoe is breaking it down, giving her the steps, telling her to hold the side and kick, now to let go of the side and kick.  zoe was calm, encouraging, and clear.  at one point the woman said:

"maybe i need some floaties to hold me up."

"no worries" says zoe, "the water will hold you up."

after about 30 minutes i see this woman doggy paddling around the pool.  zoe is following her, her little head bobbing to keep above water as she claps for her student.   so i'm clapping too, and this woman she is just smiling.

zoe says, "now how do you feel?"

"great!" she says, "i can't believe it!"

"well i knew you could do it!" says zoe.

there's my girl.  my unpredictable, mixed up girl who acts like a 2 year old then like a 20 year old.  a girl who can't get herself to let go of her fear of the vacuum and gets overly frustrated by losing her pool toy, can gently, patiently, teach an adult to swim.

i'm reminded again of her gifts- that they're in there- that she can shine in such a special way.

and there, in that afternoon at the pool, was the Grace.

warning- bad moments still exist

oh dear.

there was a very bad moment near bedtime.  bad.  bad like i could have won an oscar for my performance in a lifetime movie about the struggling parent of a special child. bad like even after i'd walked around the block to calm down, i still did the crazy- angry-turned-to-weeping thing, in front of her.  just plain bad.  i will spare you the gory details, but it left me spinney headed and grappling.  

i went to the hopeless place first.  the "i really can't **%&^$^ believe this is my life".  it's like that movie 'groundhog day', stuck in repeat.  it's never ever, really, going to get any better. little things yes, but really, it never will.  i'm way out of my league.  i don't know how to frame this.  we go forward, we jump backwards.  gain ground, lose ground.  it's never ending.  i feel the lines on my face deepen.

i went to the angry place, OK, i'd already been there with her, but i went back.  angry at her for being so challenged sometimes, causing me to feel so sorry for her, so worried for her future, for my future.  these words actually came from my mouth, " why can't you be normal!!!"  angry at myself for letting all that ugly out and into her ears.  angry at God- because i've had enough- really.

and i went to the pity place.  poor poor me.  poor zoe. poor mike.  poor boys.  what a lot we've all been dealt.  nobody understands how hard this is.  nobody gets it. it will never get any better.

then to the place of fear.  what does all this mean? what if things really don't ever get better- what if things keep getting worse?  what if she fully decompensates in Africa?   will life ever feel normal?  when will this not be so hard?

i tried to go to my happy place- escaping-  imaging being on a plane- being far away, somewhere warm- being alone.

then i went to the 'try to be rational' place.  you got off the 'normal' path long ago- don't keep trying to get back on- your life, her life will never be this typical path you expected. there are people who "get" her, people who have degree's in this sort of thing- call them.

i went to the bargaining place. what would i trade in for her to be less challenged?  definitely money and things- i'd give it all up.  what about one of my limbs?  maybe.  as if i could- as if this mental exercise does any good at all.  it's generated out of all the other places- out of hopelessness, desperation, pity, grappling.

then i stumbled and fell down at the cross. then i remembered what i wrote just two days ago.  what i said to zoe last week when she asked my 'why?  why is she like this?'   i said that she is perfectly made.  that she is exactly who God wants her to be. 

so i told myself that this life, with her in it, in all it's struggle and frustration, and joys and humor, is exactly the life i am supposed to live.  it is messy and broken but it's divinely orchestrated. i can't do what God wants me to do, without being shaped by this, by her.

just then a message popped up on facebook from someone who'd read 'the question' post, someone who's sister has downs syndrome.  it was a story about her sister asking her mother 'the question' and her mother giving a very similar answer- but more.  her mother reminding her of what she does have- legs to walk and arms to wave and a voice to speak and eyes to see.  and her sister began to dance saying 'i'm so happy i have these things- i'm thanking God that i have them!'

so i finally landed in the arms of a God who can handle my fragmented pieces.  who can handle all our brokenness.  who did make her just right.  who put us together in this family- for a reason. who will not abandon, whose Grace is sufficient.

balance

i love the dimensionality that the leaves bring- both to sight and sound.  it gives a voice to the wind and personality to the trees.  life feels more balanced.

i just cleaned the whole house-top to bottom- for the house showing today.  and there is something about the doing of work that feels so good.  it's different then the work of the mind.  when your body is engaged in scrubbing and sweeping and dusting, the mind is free to go where it wants.  when i was a girl and arguing about not wanting to study and saying that i didn't care if i went to college because i just wanted to be a mom and stay home, she would say "well college will give you something to think about when you're changing diapers or washing toilets!"

i'm glad that i get to use my mind at work- but it's good to do the other work too- freeing in a different way.  so while i cleaned my mind wandered to an email i got last night from a good friend.  she was talking about the incongruity of accepting things and being at peace, but also pushing forward and almost fighting against the challenges that we face.  which tactic should we embrace?  how do we find a balance there? 

it is a very hard balance.  i was thinking about balance itself.  how much effort it requires while sometimes appearing to require none.  in the book 'let the great word spin'  when the tightrope walker talks about walking on the wire- balancing- he talks about the constant micro-adjustments of his body- knowing to move his abdominal muscle slightly will straighten up his shoulder- but overdoing it will throw him off.  even for a professional, it takes subtle but constantly corrective little moves to maintain balance.

my moves aren't subtle.  i'm quick to lose my footing, falling too far to one side, over correcting, followed by lots of wobbling- hands out- feet wide- eyes down when they should be straight ahead.  it makes me think about peter wanting to walk on the water - he could do it as long as he had his eyes on Jesus- but if he took them off, if he looked down- he began to sink- walk by faith, not by sight.  and yoga is about balance, finding your center, alignment, micro-adjustments.  but you need to do it by feel and awareness, not by sight. if i look down and use my eyes to try to correct my body - i always wobble and fall.  

i do think that peace and pushing can be harmonious.  acceptance and fighting to overcome, can go together.  i think the peace and acceptance part informs the pushing, fighting part.  and i think if you dissect each individual situation, you find sections you should accept and others you shouldn't - things that aren't worth a fight and things that you'd be a fool if you didn't say 'No' to.

i think about martin luther king jr. (again!) he used peace, he accepted the law and it's consequences but he said absolutely "No" to injustice.  he pushed- but peacefully.  he fought- but with love. 

i think about my patients with tough illness.  i watch them struggle to find peace- but also fight to their cancer.  the man that comes to mind is a patient that i can say i love.  really.  i love him and his wife.  they have been with me for a year and a half.  he has stage 4 colon cancer- he's had it for years.  he has been able to really live with his disease.  he has found peace - he has begun to appreciate what he loves even more than he ever knew- gardening, barbecuing, playing poker.  he has continued to 'fight' his cancer- he's now on 4th line chemo.  he accepts that he has it, yes.  in his case, he accepts that it's not curable.  but he chooses to live with it.  to still enjoy each day.  to not focus on the cancer, to not focus on the end.

but, he will speak it.  there is this thing i've seen in the south, especially among southern christians, where they won't "speak" it.  they won't let you "speak it".  there is a fear that talking about the cancer, or the likely progression of the cancer, or the fact that it is incurable, will make it "be".  silence is protective to them.  vocalization has power.  i can honestly say, i've never seen good come out of this, and i've seem much harm come out of it.   it's imbalanced.  it's fear based.

i interviewed mr. b in front of the medical school class.  he wanted to share with them that it is possible to live with cancer- even his cancer- even cancer that is incurable.  it's about allowing the process of finding peace and acceptance.  and it is a process.  it's about doing what you need to do to push it back, to fight it off, to slow it down.  i've seen it's hard to be at peace when you're not "speaking it" and you're only fighting it.  calm and pushing, they go together, yin-yang.

i think about this in my walk with zoe.  it is hard for me to figure out what i need to accept and what i need to challenge.  how much can she really do? how hard should i push her?  what should my expectations be?  are they too low and i'm devaluing her? are they too high and i'm setting us all up for failure?  it's a struggle for sure.  i do better with peace.  i do better with love.  i do better leaning on God and not on me.  it's easier for me to let go when i see how truly small my hands are anyway.

wobbling, stumbling, steadying, holding it, losing it. starting it all over again.  that is my balancing act.