last day lessons

it's a really good thing that today was december 31st and not january 1- because of all my thousand little resolutions- i broke most of them before noon- and had to lean heavily on practicing forgiveness (for myself), and then out of pure desperation- i went for a run.  i ran because my engine was out of whack. because i was being mean and setting a bad example.  because i was asking everyone around me to do the things i was incapable of doing- which was being kind and loving and patient.  it was the first run in a long time- and as usual, it felt really bad for a while and then it felt good and then my knee hurt, but i kept going.  and it worked.  i came home- reborn- ready to try again- i apologized- i smiled- and went outside with jude.

having children makes me realize how hard it is to live the way i want.  it's easy to be nice to adults- they don't whine. they don't hit each other, or call each other 'stupid' and they can entertain themselves for long stretches of time.  they don't walk in on you when you're going to the bathroom.  they shut the door when they come in from outside.  and they generally want to be helpful.  at least most adults i know.

my children right now are inside fighting- i can hear them - someone is screaming and some one else is crying.  they need to work it out- i'm not going to jump in- it's an important part of the process- learning to make peace.  sometimes i forget that my job is to focus on setting the example and then retreating.  live it and pull back.  be the backdrop in their lives.  the safe haven to run to.  not the ring leader.  not the entertainer. not the constant intervener. this is hard for me.  anger comes quickly and so do words.  being quiet, being still- takes patience and purpose.  i will try.  i will.

right now i'm in the middle of 4 books. i seem to need choices.  i seem to not finish what i've started before beginning something else-and it takes a while for me to get fully engaged in a book.   zoe does this too- but she often doesn't ever finish the book- and then she'll go back to it and re-read parts of it- her favorite parts- which drives me crazy.  i don't know why. i should be happy that she's reading- that she likes to read- i didn't when i was 11.  i'm  so tolerant of my own idiosyncrasies and so intolerant of others. i see it as another manifestation of her distraction and assume it contributes to her inability to grasp the big picture. i fear she sees little snippets of life and misses the context- so i want her to just finish the book she started.  it will happen- i need to trust her more and live less anxiously.  

right now i'm slowly reading 'the poisonwood bible' and 'third culture kids'. both are in preparation for living in east africa with kids. this is my second stab at the poisonwood bible- so i'm determined to finish it.   i'm almost done with 'the dirty life' that mike gave me for Christmas (it's about love and farming and life changes).  i'm waiting to hear more about her love and struggle with this man who she left manhattan for, to wake up at 4am and shovel manure with; and less about the difference between types of cows and how to build a pigpen.  and i just started re-reading anne lamotts 'bird by bird'- about writing and living.  i love her.  she's not afraid to be honest- and if she is afraid, she chooses to be honest anyway.  it's inspiring.  i love these pieces i read last night, "writing can give you what having a baby can give you: it can get you to start paying attention, can help you to soften, can wake you up."  "writing motivates you  to look closely at life as it lurches by and tramps around you." 

these things are true. and i'm so thankful.  thankful for my children who do teach me to pay attention- to become a better person, to soften, and to grow.  thankful that writing helps me to process it,  learn from it and engage deeper in my life as it pitters and speeds by.  

thank you for listening this year.

1,000 little resolutions after all

the house is quiet, the guests have gone, the sky is pale.  there is that empty feeling - of readjusting - when the space that was filled is now drained of visiting people and their voices.  and while you're actually left with what you started with, there is now a sense of void.   and christmas is over, the tree is drooping, there are needles on the floor- it looks tired- like it's asking for the ornaments to be pulled of and put away until next year.  but it will have to wait another day- because i need it's little white lights while i readjust, and it's piney scent.

next year.  we're in that in-between week. the week of endings and beginnings.  a time of wrap up and preparation- to process and to plan. a kind of empty and excited feeling.  i'm not a big new years person. i don't like to stay up late- i don't like champagne, and i don't make new years resolutions.  i think a year is too long- and my attention span too short.  i currently don't have any habits i need to kick, no weight to lose, if anything, i need to gain some weight, of course i could exercise more- but i'm honestly not that determined.  and i'm usually too stuck in processing to get my act together by new years to have formed a plan. or i have a million plans- because i know my short comings- well, most of them.

a resolution is a formal expression or opinion, a determination.  this year i do have a tangible, concrete goal- to get to Uganda. saying that, writing that, is a formal expression of a determination- but how it will actually happen is a big mystery. even what needs to happen to get there is a bit of mystery- what needs to happen in me.  so i'm actually left with the same things i'm always left with- me trying to be still- me leaning on God-me relearning the same lessons i'm always learning- about patience and kindness, gentleness, not being angry, forgiving, trusting, hoping and persevering.  and this is why i don't make new years resolutions- because i have daily resolutions, maybe even hourly sometimes. a year is too big a chunk. i'm intimidated- like approaching a long book.

i do want to play more and to laugh more.  i want to live more in the moment and less off a todo list. i want to think about others more- and to live that in action- to show it - both to the people who's lives touch mine- and the people of the world, in the choices i make.  to live more mindfully. to pay attention. to walk more and drive less.  to separate the paper and plastic reliably. to consume less stuff.  to give things away to people who need them more and not replace them. to ask other people how they're doing and be less concerned with my issues. to wear another sweater and turn the heat down in the winter, and embrace the sweaty heat of the georgia summer with a fan and lemonade instead of air conditioning. to not buy shoes because they're cute- when i don't need them (at all).  to have more conversations and less computer time.  to write notes of encouragement. to not yell. to dance and sing with my kids and be goofy and enjoy their goofiness. to let go.  to let go of my control over things.  to let go.

one of my birthday presents from mike was a golden circle with the letter "Z", to join the M, J, B on my necklace.  when he gave me the letters for the boys, they were out of "Z"s- and i wore the little bird for her.  i love that i'm starting the new year with everyone together around my neck- not her parsed off requiring her own separate symbol and story. that is a good start. this year i want to maintain myself apart from zoe, to not let her challenges consume me, to not live in her issues. to let her her go.

so i want to get up everyday of this new year, and remember all these things. i want to live in the challenge of it. to practice life, as i practice medicine.  and to get back up after i fall down, as i will, as i do.

because someone asked why the cherry blossom

there have been times in my life when the relationship between my body and mind have been confused. times when i felt that to communicate what i was feeling- i somehow needed an outward physical expression of it- one that had permanence or semi-permanence.  these times usually coincide with a life change- something that i'm wrestling with- something around identity.

my first year of medical school- i got my belly pierced. i was 26 and i needed to hold on to the non-doctor part of myself.  i thought it was cool, subtle, and not a big deal.  i didn't plan it- i just made the decision and got it done.  it was for me.  i needed a physical reminder that i was more than just a girl who studied 20 hours a day. i needed to be myself- and hold onto something that was being transformed.  i was becoming a doctor- but i wasn't going to start wearing preppy conservative clothes and become completely absorbed in doctorness.  i was an older student, for my class.  i had spent most of my life not wanting to be a doctor.  a semester in costa rica had changed that, and at 21 i'd decided that to engage the world in healthcare- i wanted to do it as a physician.  i'd enrolled in a biology course to see if i could handle the science of it, loved it,  got an "A", and began to see myself in a different light. mike and i got married a year after i finished college.  he was in grad school and i spent the next 2 years taking the rest of the science courses i needed, while working full-time.  when i got into medical school and mike finished at MIT, we left boston, moved south and i dyed my hair platinum blond. we spent 6 weeks traveling in europe before our lives began again.  before he began his first professional job, and i began the process of becoming a doctor.  it was like a honeymoon.  we had space and time - that we hadn't had since being married and being so busy and absorbed in our school/work/ med school application process.

the acculturation process of medical school freaked me out.  i was with 100+ kids (mostly right out of college), who were fulfilling their life long dream of becoming physicians.  they had spent their lives getting perfect grades, SAT scores, and finding the balance of volunteerism and summer lab research jobs.  they belonged to honor societies.  they were biology majors.  they were used to delaying gratification and spending hours in books and libraries and knew how to take meticulous notes.
this was not me.  i was doing it backwards and i knew it.  i'd spent my life not focusing on grades or studying, but on friendships and self discovery.  i'd spent my time studying outside the library - in fact often outdoors- and i'd studied sociology, not biology.  i didn't have perfect grades or SAT scores.  i did have the perfect resume - having worked 4 years in a nursing home, and 2 years doing clinical research in boston.  and i did have a complete love for what i was doing- as did they.  but i wasn't going to lose myself in this new group. i took notes on giant posters with colored markers.  i studied at coffee shops.  mike and i lived in a loft at an arts center on the other side of town.  i painted and sketched to balance the lopsidedness of my left brain use- and had a little art show at a coffee house.   and to physically maintain this identity- i pierced my belly.

when i was 28 i was pregnant with zoe- another transformation.  i was about to become a mom.  this was  a lifelong dream.  this was in the plans.  we'd been trying to get pregnant for a year.  we were thrilled.  but with any big change- any shift in identity- there are many emotions mixed in.  the loft we lived in was an old plow making factory that had been redone into live-work loft space.  it was on the freight train tracks.  we had 2 giant factory windows that looked out over the railroad tracks and several times a day, when the trains would go by, things would rattle and shake and the conversation would have to stop until they'd passed and the loud, squeaky noise was gone.  i spent a lot of time sitting in those giant windows and watching the trains. there was something about their movement and their constancy that felt freeing.  they were slow and steady and determined.  they held things- moved things-there was purpose and function.  they left and returned.  in those first two years of medical school, i often felt trapped.  it was so intense- there was so much information- it was such a different type of learning than i was used to- that watching the trains was an escape.  when i would see an empty boxcar moving slowly past my window- i would imagine timing it, running beside and jumping in.  to see where i'd go.  to have that space again.

one day when mike and i were driving back to the loft, going over the train bridge, with zoe kicking my ribs from the inside, belly ring still in- i said i wanted to pierce my tongue and jump the train.  i had that feeling again- the identity challenge. his response was classically mike and exactly why i love him so much. he addressed the outsides and the insides of my comment.  "if you really want to pierce your tongue-that's fine- but you should really think it through- i don't think you'd really like it. in terms of the train riding- not a good idea- you're 6 months pregnant and do you know who rides empty trains? people who have no other way to get around- criminals-people escaping from things."  " kris, what's really going on? are you stressed about having a baby? about becoming a mom?" as often is the case- my mouth spoke before my brain caught up with it.  and he nailed it.  i never pierced my tongue nor jumped the train- but i still wonder about the train part.

when we moved to san francisco, zoe was almost 2, i was starting my residency, and we felt like we'd finally landed in our town.  it felt like home- quickly.  the feel of it, the people, the scent of eucalyptus, the wildly growing calla lilies, and the ocean.  we were living for the first time in our 8 year marriage, away from our families, on the opposite coast, and this felt important, mostly symbolically.  we had space, and grew and we became solidly our own family.  we had two more children- and my belly got so big and tight with the boys that the belly ring had to come out. piercings and tattoos are more prevalent than not in san francisco.  it was much weirder that i went to church than that i had a belly ring. so not having these things is defining.  the six years we spent there bound mike and i together like never before.  we faced many challenging seasons with zoe, and infertility, and jude (see post happy birthday jude)- but  God grew us together, not apart, and our faith and dependence on God became central.

when bryn was born and the 5 of us were living in a small, yard-less apartment, scraping by on our full time professional salaries- across the country from most of our family, we decided to move back east.  this was a hard decision. it was hard from an identity standpoint. we had fallen in love with san francisco.  we had fallen more in love with each other in san francisco.  we had defined ourselves professionally there, we had formed wonderful friendships there, we had grown a lemon tree. we had delivered our boys looking out over the golden gate bridge, hiked most weekends in marin, walked the long cold beaches year round, and developed a love for vietnamese food. leaving it was scary. i began to think about getting a tattoo- a piece of san francisco that would always be with me- on me- forever. and i began to think about it would be- what it should be.  it needed to be beautiful and significant- in a permanent way.

san francisco has a strong asian influence.  one of the ways to tell when it's spring is the blooming of the cherry blossom trees that line many streets in the city. there is a cherry blossom festival where zoe's public japanese bilingual kindergarten class rode on a float in the parade.

the cherry blossom is a beautiful delicate flower from asia. it blooms intensely, fragrantly, rapidly, and then the flowers fall.  it is a symbolic flowering tree with two different meanings. in japanese culture it represents the fragility of life- the transient nature of living things- that beauty is found in the brevity.  in chinese culture it represents femininity and strength.

i never got the tattoo.

but i love these meanings and i love the delicate image on this page- that reminds me of so much.  it reminds me of san francisco, of our years there. it reminds me of the parts of myself that are important-and strong- strong enough that i don't need a tattoo or a pierced navel to hold on to them.  it reminds me of the truth - that life is fragile- humanity delicate- little moments of beauty to be savored- because they go- but they return.

now another season of change is on me, an identity shift.  africa. missionary.  but this change feels whole and uniting. my mind and body are connected now.  there is clarity and resolution. i don't need a symbol or mark to bring definition or to hold on to myself- i am intact.  but these pages can carry the process- can record the transiency- the delicacy- the beauty of life, beside a little sketch of cherry blossoms.

blue green flame

snow makes everything so unbelievably quiet.  you can see the passage of time by the inches of white on the tree branches- on the railings. and things seems smaller, closer and i feel smaller.  foot prints just left, soon gone- our impact on the world, covered.  we are reminded of the earth as it was before us, and as it will be- which feels forgottenly natural.

merry christmas!

the winter in north carolina feels very edwardian.  in the living room, there is a fire in the fireplace constantly and people sit and read, and play and talk.  people go off for walks after meals and then return to sit and be around the fireplace.  there is good food and lots of it, and surprisingly little media. time for being still with others.

today zoe was sitting by the fire, just staring into it pensively.  she was noticing the different colors of the flames- the small flickers of green and blue that sometimes appear. she was quiet- which is rare, she had no toys around her, which is rare.  i asked her what she was thinking about.  "nothing."  but she was thinking. a few minutes later she asked if i really wanted to  know what she was thinking about and i said yes.

she said she'd "let her feelings get the best of her".
i asked what she meant.
she said she was thinking about living in san francisco and remembering people there and certain memories- some which were good and some which were bad and some that made her mad.  she felt confused about it and overall- sad- and then bad that she'd let all this affect her.

i told her this feeling was called nostalgia.  what a complicated feeling it is.  a feeling made up of so many feelings- a feeling i know well.  she had interpreted her confusion with it as isolating. as part of her nonverbal learning disability.  no, i told her, it's a confusing feeling for all of us- it is something we all share. i told her she'd described it really well.  that her affect- her somberness- her pensivity, was very appropriate.  she had beautifully shown and spoke of her feelings.

this is a big deal. this is a big change.  usually for zoe- complicated emotions are overwhelming- and their sum is anger or frustration- and that is what gets communicated.  she doesn't like the confusion- she doesn't know what to do with feelings that seem to contradict each other- joy and happiness mixed with sadness.  she already doesn't like feeling sad- so confusing sad- really gets her mad.  this is another step in her growth, like watching 'where the red fern grows'.    (www.bestillandknowkw.blogspot.com/2010/10/where-red-fern-grows.html)

this is a really important step in her right brain development.  to allow herself to feel and process complex emotions- to not just react to them- to not avoid them.  i explained to her that feeling nostalgic is a normal and important human emotion- that feeling it connects her- it doesn't isolate her- but that when we're feeling nostalgic we often do feel alone in our memories- and that is OK.  that is part of the feeling.  she had a brief moment of mild stickiness- she calmly asked why i hadn't told her this before. (that is one her "sticky thoughts"- the "why didn't you tell me that before?" said randomly over very silly things like in response to me saying " i just had a delicious muffin".) i explained that it's a more grown up emotion and it's the first time she'd really expressed it in a way that we could talk about it. i told her i was so proud of her for sitting with the feeling- for letting herself be in that place i know was uncomfortable for her, and then for so eloquently sharing it.

i'm looking ahead to this next year.  this year of major preparation- of house selling and fund raising and packing but of also of living and working and teaching.  i'm looking back at this first half of our homeschooling "5th grade" year- at what we've accomplished and what we've not finished.  i so easily get lost in the specifics, in the schedule, in the grammar of it- the minor keys.  so it's good to have this break - this time of reflection- of step back- of big picture viewing. a time to be reminded of our real goals.  to sit by the fire with her as the snow falls.  to see a flicker of her deep learning- that blue-green flame in the midst of the roaring fire.

endings and beginnings

christmas eve- up in the north carolina mountains.  some children are sleeping. some are outside.  people have gone walking.  dogs are running. meat is cooking. a fire burning.  music playing.  me writing.

peace.

this month, i've been living in my own head.  thinking about endings and beginnings and hellos and goodbyes and pasts and futures. we are made up of all these. they are pieces in us like the colors in a kaleidoscope but as you turn it the picture transforms- the images move.

this year we are moving to uganda.
not metaphorically, like having a child with special needs, but really- we are moving to africa.
we are becoming missionaries- mike as an architect and teacher- me as a doctor and teacher- and our kids will be "MKs" missionary kids.  goodbyes and hellos.  endings and beginnings.  transformation.
my heart is in this.  my soul is too.  my mind.... it wanders, it debates, it struggles, it reaches peace, and then cycles back again, which i think is appropriate, although sometimes exhausting.

we are leaving much more than our house and our things and our friends and our families- we are leaving our culture, our ideas of normal, the every-day-ness of our lives, the fulfillment of what we imagined, and we are not giving our kids what we had. we will be giving them something else- a trans-cultural life.  they will be living between worlds, and among worlds.

zoe will like living there. there are very few vacuums.  life is quieter and the sounds there are more musical or natural- there is less mechanical noise- less visual noise.  and in some ways she already lives a trans-cultural life, she already experiences 'different'.  but my mind will say, are you crazy? you're moving your child with special needs away from her network? from your network? away from her social groups and her therapists and her routine? away from the possibility of a good special ed private school? away from her grandparents and friends?  when she's about to become a teenager?

yup.

jude will love the constant fresh exotic fruit.  he and bryn will love the goats in the yard and the chickens.  they'll love the monkeys in the trees and sleeping under mosquito nets and adventuring in backyard jungles.  and they'll all love more time with the family. 

when mike and i took zoe there this summer- we were driving out of the city up to northern uganda. we drove through streets full of poverty.  dilapidated houses made of mud and corrugated metal , kids playing with cans in dirty water, sometimes not wearing much.  zoe was looking out the window and i asked her what she saw.
" i see a house and a kid playing and another house and a dog." it was all very matter-of-fact.  it was as if we were anywhere.  as if we were in our own neighborhood.  as if it were a charcoal sketch. she didn't seem surprised or bothered or even to notice a difference.  i remember thinking that maybe she doesn't.  maybe to her- a house is a house, a person a person, a game a game- and how sad that she doesn't take in the detail- the context.  but then i thought- what beautiful insight into her world- her world of equality- her world of non-judgment.  her gift at not assigning a value - this is part of her, we can all learn from.

this summer i was looking at uganda through different eyes- eyes that might soon call this place home- and the sexiness of it was peeled off.  the red dirt shown and the headache of living somewhere totally different sunk in- somewhere that loses electricity daily and the internet is slow and the traffic bad and the roads a disaster and your face stands out all the time.  a place where you loose your anonymity.  and yet it called to me again, to mike again, as it has since we were both 17 and traveled to east africa for the first time, separately with our own familes.  it spoke to me again as it has each time i've come back and have asked myself, " is it time now?" only this time, the answer was "yes."  this time the answer was "now". 

and now i look around me and my world looks different.  i see things through eyes that know they're leaving.  i think before i buy something- will i need that in africa?  i realize when friends come for dinner, how valuable they are in my life and how much i'll miss them. i walk jude to school - a beautiful, new public school, where for free, he learns so much, where he begins to find himself outside the family, doing art and music and spanish.  i see how easy it is to live where i live, three markets less than a mile from my house, 10 restaurants up the street, clothing stores, coffee houses, a drug store.  a major medical center less than 2 miles away.  i remember mike having appendicitis a few years ago, and how sick he got quickly, feeling like i could loose him- comforted by the fact that surgery and medication was minutes away.

uganda isn't like this.  what if my child gets appendicitis? i envision the long painfully bumpy road 17 miles to town but an hour in normal traffic- and several hours if there's been an accident.  what if i lose my child because we've been called to africa?  and i know that unlike zoe, jude and bryn will not see around them, just a house, and a dog, and a child playing.  they will see the poverty- the ugliness of poverty- and the dirtiness of it- and will feel the unfairness of it. they will feel the outsideness of it all, feel their paleness, feel their relative wealth- and this will inform them, and form them, in a way that i won't ever really understand because i wasn't raised in africa. 

there are so many 'what if's'.  there is so much unknown.  we see through the glass dimly- our vision only so far ahead- despite what we often think.  so you go with what you've been given- and we've been given a "yes", a "now".  we will walk in that.  we will trust it- because God is bigger.

and i know that i will get there and i will feel the warmness of the air near the equator on my arms, and i will see the sun set over the little town of mukono from where the university sits up on a hill, and i will feel a mix of knowing i'm where i should be- that i've landed in my right skin- and also a sense of "what have we done?"

i will live the tension of the opposites.  and i will grow this in my children, and support it in my husband, because to not feel it would be wrong. and it will start now, it has already started.  the hellos and goodbyes, the comings and goings, the embrace and release, the endings and the beginnings. and the crazy adventure of life will continue.

40

40 started out at 3 am on december 18th with jude throwing up.  nice.  that is a great way to start a birthday.  but it reminds you of your life- of where you are, of who you are.  the day was pretty bad- cold and rainy and bitter outside, the kids fussing and fighting (as if they should magically not behave as usual on my birthday) and zoe getting sticky about it not being her birthday- about being jealous that it was about me and not her.  i was in a deep funk.  i couldn't get happy.  i wasn't being nice.  i just wanted to be alone- but not even that- because i didn't want to be around myself.  i ended up in the bath at 3pm listening to the soundtrack from Away We Go on my ipod and crying and feeling sorry for myself- like some bad old-lady version of Sixteen Candles.  it was kind of pathetic.  but 40 ended well, with some really good and important conversations with mike- and then a fabulous night out with him.  it was a day of transitions.  a day of accepting things for what they are- years, and children who whine, and stickiness.

when i woke up today- it was good.  i like 40.


mikes parents gave me a really cool necklace and earrings.  they are silver with a single fresh water pearl.  i began thinking about pearls and about diamonds.   about what they represent when we stop and think about it. they are valuable- precious- and rare.  they are beautiful.  and they both  arrived by a process of transformation and reaction.  they started out as coal and sand. and with time and pressure that coal becomes a diamond.  and with time the piece of sand that is an irritant inside a mollusk becomes a pearl after layers and layers are added for protection.  beautiful things exist because of pain or struggle or time and process.  things we value are not easy.  our emotional lives copy nature.  we are transformed by our pressures- our challenges- by our irritants.  and beauty can result.

i went into a store today (bill hallman- where i got the great dress).  mike had given me a gift certificate there for the big 4-0.  the guy behind the counter saw my last name and said, " are you zoe's mom?"  he then told me this story.

he said, you probably don't remember me but we met about a year ago when the store was in a different location.  you came in with zoe.  she is amazing.  she changed my life.  i can't really explain it- but she has this incredible energy.  she walked up to me and said ' hi, i'm zoe, what's your name?' and then engaged me in a conversation.

he said, i have this box that i keep really special things in- things from places i've been or quotes or things that people say- things i want to save. things i want to remember.  and i went home and wrote down 'zoe' and put it in my box- so i could remember her energy.  i can't explain really why it was so meaningful- something that day, that i needed- but she is really special.  she has a special purpose.

that was a great gift to me.  i know what he means- i've heard it before. someone else sensing her 'je ne sais pas'.  she is special.  gifted. engaging.  but in a nearly impossible way to explain. it was so good to be reminded of that.

we are all coal and sand with potential.  we are also the forces of pressure and protection in each others lives.  i hope 40 will bring me closer to that sparkle- rather than loosing myself under the pressure.  and i hope that i will influence those around me to transform positively- that i will coat my 4 year old whiny sand kernel with layers of love- and cover zoe's stickiness so only her amazing chi shines out.

40 - it's an important number- it shows up a lot.
the Israelites wandered the desert for 40 years.
Jesus was tempted in the desert for 40 days.
lent is 40 days.
there are 40 weeks in a pregnancy.
40 as a number seems to represent the end of a time of waiting- after a season of preparation.  that is were i am.  i've arrived at a place with a view- a time to pause- and a time to begin again.

preservation

today was a weird day. a roller coaster day. zoe alternated between being really amazing and insightful, and then regressing back to the wiggly voice that i haven't heard in months. the wiggly voice is one of the most annoying sounds to my ears- because it symbolizes her inner frustration- it signifies her loss of control. following suit, i also alternated between being completely calm and mature and patient and then wanting to wring her neck- but- i didn't- i kept it together for the most part. but the extremes bother me- baffle me. i think i get dooped. after a great morning of insight and connectedness- i can't believe that she'd scream bloody-murder and make the wiggle voice when her 3 year old brother tells her to get off the heater. it makes no sense to me. it's like she's having a seizure. like her brain is playing ping-pong. what's hard is that i get my hopes up- and then they have farther to fall.

this weekend i was on call. on sunday i got called to go in and help with a terminal extubation. what a formal, medical word that is. a family had decided to withdraw life support on their loved one. he had really bad lungs. the last few years of his life he'd struggled to breath. everything made him tired. changing positions made him short of breath. he had decided long ago that he didn't ever want to be on a breathing machine. but, as often happens, when someone begins to go- when their lungs start that final flailing goodbye- 911 gets called and people get intubated. he'd been in the ICU since that had happened to him last week- it wasn't what he'd wanted and he wasn't getting better. but there he was- ventilator tube in his mouth, feeding tube in his nose, triple lumen catheter in his neck vein (with bags of medicines for pain control, antibiotics,blood pressure support), blood pressure monitor line in his wrist artery, catheter in his penis, and wires to connect him with all the monitors on his chest. his kidneys were shutting down, his infection was overwhelming him, he would never breath on his own again. someones husband, someones dad, someones uncle. that morning they'd lightened the sedation to be able to wake him up enough to ask him what he wanted- did he want to come off the ventilator. he gave a definitive "Yes". so i was called to help with the terminal extubation. extubation is removing the tube for the breathing machine. terminal means final, because with out it he will die.

it was sunday afternoon. i was home with the kids and mike. everyone had a cold. we were watching movies. i'm horrified to write that this is what went through my head. do i really need to go in? can they wait until tomorrow?

this family had been in agony for a week watching their husband, dad, uncle, friend- suffer- knowing this isn't how he wanted it to be. his wife's birthday is next week, , his birthday is in january, their 40 year anniversary is at the end of the month.

i felt really badly about my initial, selfish thoughts- and then i dissected them. was it because i really didn't want to get in the car and go back to the hospital? or was it because i knew that december 12th this man would die? that he wouldn't make it to his 64th birthday, his marriage would never make it to 40 years. was it because i wondered when they woke him from his anesthetic sleep and asked him if he wanted the tube out, did he know it was terminal? did he know december 12th would be written in stone?

there is so much in our birthing and dying- but it happens in a moment. the presence or absence of spirit- life.

it makes me reflect on the drama of each day. the highs and the lows. the good and the bad. the growth and the regression. so much goes in to being alive. our minds dance with ideas and fears and hopes and plans and we are light and we are heavy. but the moments that change us forever are just a breath taken or lost.

so really, does it matter that she made the wiggly voice? no. it really doesn't. just because it makes me crazy, it doesn't need to mean that much. what does matter, is the long calm mature talk we had about what a nonverbal learning disorder is- with examples about how it affects her- in the day to day- in the moments. what matters is that i had the opportunity to share with her how she is extra special- what her strengths are- when she was focused and attentive.

and what matters is not that i had to go back to the hospital on a cold sunday afternoon. what matters is that this family felt supported- listened to- and admired for doing the most difficult thing a family can do- out of love and respect for their persons wishes. it's a lot harder to undo- then to not do. what matters is that december 12th is the day that they all reached peace about this- and they let him go.
the heart is really the first and last speaker. with a baby, they've had a heart beat before most other parts- but when they are born they take that first breath. when people die- their heart beats for a little while after the lungs stop. our hearts hold on until the oxygen in that four-chambered muscle is all used up. and that's when the spirit seems to go to.  you can almost see it- the moment when the spirit leaves. the ultimate end of a life.

i was teary when i watched the respiratory tech remove the tube just after the family stepped out of the room.  "this must be the hardest part of your job," i said.  "i've been doing this a long time" he answered, " it doesn't bother me anymore".  at first i was surprised because that day i was feeling soft and moved. i was feeling that intense union of our flesh and spirit.

but really, i get it. it's self-preservation. we all do it, it makes us human.   it's why i didn't want to come back to the hospital a few hours earlier. it's why i get angry at the wiggly voice instead of sympathetic to her inner turmoil.  it's why i sometimes lower my expectations for her growth, why at times, i've dodged hearing about other 11 year old's successes, it's avoidance of vulnerability. protection of our being. knowing our limitations.

so on december 12th i held his bloated hand while the tube came out, and then i left when his family was gathered around him, when his lungs had stopped rising, but while his heart still had a few beats left.  that day, i couln't bear to watch the spirit leave.

tea and eucalyptus

i'm back to the freezing cold south. drinking a hot cup of tea. the leaves are gone and the trees are scratching at the sky, naked and cold.  the sky is a different color when it's cold- it's paler and retracted- like it's avoiding something- creating a space between itself and the earth.

finally, goodbye to fall.  i guess it's about time- it is december. and i'm ready.


most of time i don't like tea.  it tastes like dust, or hot water wearing a mild disguise.  i wish i liked it more.  it seems like something i should like.  in the book i just finished, Little Bee, the main character, describes tea as tasting of longing. of the distance between where you are and where you come from.  i love that description. i can relate to that- it makes me want to give tea a second chance.  so i'm sipping away.


i came from a place of seasons- and when you do- you become rhythmic too-it runs in your blood- craving the change- waiting for the wind to blow in cold.  when mike and i moved to san francisco it was very disorienting- trying to figure out whether it was fall or spring- because when you grow up with those clear distinctions, you feel differently in the fall and the spring.  those transitional times of preparation for winter and summer are important. with out seasons time becomes slower and you have to adapt to subtleties. you have to learn new symbols- like the blooming of the cherry blossom trees or the haight street fair.

zoe spent her early years in a nearly seasonless place.  this place shaped her. san francisco is where her conscious story began. from age 2-8 she smelled eucalyptus, felt the fog in the morning and the sun in the afternoon, the summers were pretty similar to the winters- never too hot, never too cold. there was a peace in this continuity.

i think it's easier in some ways to grow up like this. less complicated. less dark.  less need for the change, for the drama.  life is milder.  you have one wardrobe.  i'm so glad that zoe had 6 years of this, foundational years, glad my boys were born looking out at the golden gate bridge.  maybe it will seep into their blood too.  the calmness of constancy. 

but i wonder about the seasons of her internal world.  about why today she can feel every seam in her clothes, why every touch of her hair feels painful.  it's hard for me to get it.  it's hard for me to not get mad.  i find myself telling her she needs to over come it.  she needs to retrain her brain, to override the signal- to correct the pathway- to take out the boston winter- and remember it's just a little fog.  i worry that if she doesn't re-organize the tract she's laying down that it will become automatic, always something mildly uncomfortable will be read as pain.  and then she'll be miserable and overwhelmed by the little sensations of life. so i tell her to tell herself there is a difference between pain, and discomfort.  that there is a range of "doesn't feel good"- it's not all or nothing- i'm trying to move her into gray.

i get the passion and the drama- i do.  but life is so much easier with out it.  the colors of life are beautiful- sustaining- joyful- but living in the extremes is tiring. i want for her all the joy and passion, even the sadness's will be there- but i want them for her on the outside.  there is enough out here with out tags and hair brushing to ruin your day.

san francisco was a good place to grow.  i found pieces of me there, that i couldn't have all muddled up in the snow of boston and the georgia heat. that external stability gave me a place to learn stillness.  and it became easy to let go of the need for those seasonal changes- the fog and sun was enough.

i sometimes remember zoe as a little girl in san fransisco- running on the beach all bundled up- standing outside by the bougainvillea, collecting acorns under the eucalyptus trees - filling her pockets with that transforming scent- that scent of longing- the scent that stretches further to between where you've been and where you're going.   may it carry her on.

living in on the unlined page

there is a glistening of sweat on the little hairs on my arms, my arm that is turning brown in the sun beside the pool, beside the ocean.  and i smell of sweat and tropical fruits like coconut and pineapple and it's reminding me of being in addis ababa. i always burn the pointy parts- elbows and knees- because they stick up or out- and have creases that wash away the sunblock.  i'm in florida at a resort, celebrating my dad who has been president of a prestigious surgical society.

i'm reading another really good book.  Little Bee by Chris Cleave.  it's about two very far away lives becoming linked.  two people suffering different sorrows, from different worlds but united by an event that changed them forever.  i won't say anymore- you'll have to read it.

but as i've said before, there is so much beauty in far away connections like this.  maybe because it's unexpected.  you think it would be harder to connect with someone not from your place- but i think it might be easier.

when you are with your own people- your own community- there are expectations of being- there are rules unspoken- ways of talking and patterns we fall into- like writing on lined paper.  then when you're at a bus stop talking to a homeless guy, so blatantly aware of the differences, those lines dissolve and you have a blank piece of paper in front of you and if you're one of those people whose not afraid to engage in conversation with someone different- you are now free. so sometimes it's easier and faster to connect, with out the lines.

the other night zoe came into our room and wanted me to take off the little bird necklace. (see post called 'little bird')
"it's kind of scratchy" she said.
"i know" i said as i removed it.
its little sparkly eye catching a street light and winking at me.
"you can have it back for now" she said and she went back to bed.

maybe my connection with zoe feels so intense sometimes because we're living on paper with no lines.  no scripts.  no definitions of what is the right thing to say or to do.  we are drawing it as we go.  so it becomes less of an orchestrated piece and more of art- because when you have no lines - you are free to go where you want to on the page- and as fast or as slowly as you feel.  your story can move at a different pace.

and we are all story.  made up of stories.  some we have control over and some we don't- but none the less- stories.

zoe has her own story- it has started and will continue with me and probably eventually with out me.  when she returned the little bird in the middle of the night- i was not surprised.  the giving of the necklace was probabaly a more important part in my story, than the recieving of it was in hers. i want to not need good luck charms.  i want her to fly on- to feel that branch trembling. but on her unlined paper- she might not even need that- she might not ever feel the shaky branch because i guess if the branch has always been shaking- that is your normal- there is no awareness of an unshaky branch.  part of zoe's beauty is her songbirdness- she already does sing.  part of zoe's beauty is her living out her life on the lineless freedom of plain paper.  her ease of connectedness with the other- infact her joy in connection with those who are most different.  and in that way she is perhaps freer than the rest of us. 

tonight i will go to a fancy dinner dance in my fabulous chocolate dress- and i will try to remember her freedom, i will try to not be fooled by the outsides of everyone. i will try to hear their stories and i will try to live on the unlined page.

love actually

yesterday i saw Mr. A again in clinic. my patient and friend with liver cancer.  i didn't know he was coming in and was so happy to see him.  he looked good, but his eyes didn't sparkle. and that made me sad.  he looked deep in thought and in his pensivity he'd lost his twinkle.  he looked consumed- by all that is going on in him, with him, his body, his spirit, his soul.  it is a lot to process.  despite this, he is surrounded by so much love- he lives in the house of his old friend and hairdresser- (the one who rode on his motorcycle)  and she cares so much for him. his daughter and son-in-law are with him constantly, they never miss an appointment, or a medication, they help him to the bathroom, and into the shower. and he has friends that have known him for years- who value him and aren't afraid to show him, especially as he nears the end.
and it's beautiful but it's not pretty.

it reminded me of the movie 'love actually'. now that is a great movie.  it's many love stories woven together, some unrequited- some acknowledged.  it's about finding love, holding on to love, loving from a distance, s, loving even when it's not returned or can never be returned, and it's about sometimes letting go of love too. in the movies love is sexy and beautiful and well dressed and well scented- but real love between real people is rarely that- often love is overweight and unattractive, to everyone except the beholder.  the beauty of love, is that it goes deeper than the senses- it's a soul thing- it's an alive thing- it grows.  and sometimes it's unexplained, it's not logical, it doesn't make sense- but there it is- it's love.

i see it all the time with my patients.  in illness, which is never sexy or beautiful and usually smells bad and involves hospital gowns- there you see sometimes the deepest love coming out. you see it in the way someone cares for someone else.  the time they spend.  the hours they wait.  the little things they help with.  gentleness. patience.  holding a hand.  sometimes love is expressed in what is said, or not said.

when i did my first home visit with Mr. A- i remember seeing the acute differences between us- he lived in the basement of a house out in the country- the room was filled with  people chain-smoking pall malls- eating dunkin' donuts and watching horror films on a big screen tv (i HATE horror films). but when i sat down and began to listen and to observe-  i saw the similarities. i saw the love. what a uniting force. we are all cared for - by someone- we all love someone- it is part of being human. 

and when you look you also see that there is so much beauty in each person- although you might not see it at first glance in the waiting room. although it's not brad pitt or clooney- it's in someones eyes- their hands that have been worn smooth- it's their story- their sacrifice-it's how they love- or how they've been loved.

when Mr. A and his family left i told him that i know he's tired and worn out.  i told him i would call and check in next week and that the next visit could be at their home.  he thanked me, and i thanked him- but i told him  i wanted to see that sparkle again.  he knew what i meant, i gave him a hug in his wheelchair- and he looked up at me with that twinkle- "be good" he said.

december

december is my favorite month of the year. christmas time and my birthday and lots of little white lights and sometimes snow and people in general are supposed to be happy. it's also reliable- the music, the colors, the themes, the decoration- it's always the same.  and there is comfort in that reliability.  it's sort of soothing in a rapidly changing time.

december is a month of preparation and reflection- whatever religious background- because it's the end of the year and almost a new one. and when things end- people tend to think back and review- it's a softer time- often a time of forgiveness and reconciliation and honesty. a time when people may give each other a break when they might not if it were june.

but it can also be an especially sad time if people are lonely or overly busy or experience loss or for whatever reason, can't get into the spirit that we're supposed to be in.  because then you feel guilty on top of it.

so i've been reflecting.  this week was hard.  it felt transitional.  moving out of thanksgiving and into december.  zoe has had a rough week. transitions are harder for her, and apparently they are for me too. but we've wrestled through it. today i saw my therapist and she helped me to unpeel some things - which tends to reveal more stuff to be unpeeled- but i guess i'm moving somewhere.  we were talking about fear and blame in relation to homeschooling and homeschooling special needs kids-which for me are stuck together because i only teach zoe.  i have all this fear about how much she is or isn't learning, about whether she'll ever be able to go back to school, about if i'm helpful or harmful to her self identity.  and i worry that i'll look back and blame myself if all goes 'wrong' (and what would that even be or look like? i don't know)- i said ' if she were in a school then i could blame them' "why? why would i blame anyone?"  i guess inside, i'm a whole lot of crazy.

to blame is to push the causality of a bad outcome onto someone or something- it's also a burden on the recipient when something goes wrong.  this is black and white thinking.  a right way.  a wrong way. guilt. blame. vs. freedom from responsibility. and in this case, it implies knowledge of what a good or bad outcome would be.
is there one?
it's all much more complicated than that- it's a life- not a true / false question.  the good outcome is her health and happiness and sense of value and love for God and others.  but is it also, her ability to take an SAT test  or to get into college if she wants to? these things i struggle with- and that is OK- but they shouldn't suffocate me- they shouldn't strangle us.

we talked about energy and creativity.  i have a lot of energy and creativity but where is it being channeled?  too often it seems to be used worrying about outcomes or stressing about what we're not getting accomplished or blaming myself for failing zoe as both a mother and a teacher.   i love to engage people- to give and share energy and creativity - to exchange it- that is why i love working with patients- sharing their energy or giving some of mine- creatively problem solving with them.  and it dawned on me that i'm not very good at giving that to my kids.  so often my energy exchange with them is negative and my creativity is stifled.  with zoe it's out of fear- what if .... what if.....what if

what if i painted a picture with her and taught her to ice skate instead of doing math? ( dundunduuuuu )
would i ever allow myself the freedom and creativity to do that?  can i not stress that she doesn't know the exact dates of marco polo's travels or the detailed and depressing history of the english royalty?  (as if i knew or even know that now!- where do these 'standards' come from?)

so when i returned from the therapy appointment i challenged myself to make the afternoon different. baby steps.  it started with an apology for being psycho-mom- for spewing negative energy at her- for operating out of fear.  then we baked brownies with her littlest brother and made snowflakes for the windows. 

now it's looking more like december in my house.  soon we'll get the tree and put up the lights. and i will continue to reflect- to be honest- to reconcile and forgive-maybe mostly, myself.

the candle of hope

i never thought there would come a day when i would chose to not watch rudolf the red-nosed reindeer.  it has come.  it's pouring rain and has been an awful day.  just all covered in yuck. and at five o'clock- everyone just melted down. except jude- bless his lovely little heart- he is such a good brother.  bryn was bawling because jude came home with a styrofoam airplane from the kindergarten prize box for finishing his reading log- and bryn wanted one. zoe was melting down about not wanting, and wanting help with her sewing sampler and i was just really wanting some peace and quiet.  so i pulled out rudolf and let them watch.  and now i have an hour of quiet.  i can hear the rain, and the squeaking of rudolf's red nose.

by 10 in the morning i was already failing to lead by example.  i was angry. i was unable to rise above my emotions.  not only did i not add positive energy into the universe- i added much negativity. sorry for that. 
it was a day of me feeling sorry for myself- me wishing i was elsewhere- me full of doubt- full of discouragement. 

ironic in this season of advent.

advent means 'coming' or 'arrival' and the season is about anticipation and preparation and longing.  it's about hope.  it is about waiting for jesus.  it's about fullfillment of promise.  it's about relationship.  it's about the intersection of God and man. 

in advent we light a candle each week- and in this first week of advent we light the candle of hope.  how slippery hope is.  ephemeral.  some days we can grab it and hug it and it sustains us- we feel full of it- we see all the little pieces adding themselves to it like a magnet and it grows and we sail away on it.  then other days we can't see it at all- not even the shape is left- it's just vanished away- and all the little pieces of the day push our memory of it further away.

people who are dying often want to talk about hope.  they want to hang on to hope.  its a huge part of our human experience - it gets us up in the morning.  we spend our lives changing or realigning our hopes- re- framing them- because we need to have it- so when hope for one thing leaves- we have to have hope for something else.  i remember when we were dealing with the awfulness of jude's diagnosis of a probable brain tumor, my friend called asking what she could do, and i said, 'find me a piece of hope in this'.  it's what we cling to.

i've spent a lot of time thinking about hope with zoe.  what do i hope for her? how do i let the day to day influence that hope? why do i so easily let it be stolen away? i criticize her for giving up too soon and i do the same.  i forget that God is a god of small things- broken things- and impossible situations.  and there in is the hope.  i, myself, in my arrogance or my belief in my control or influence, let go of hope.  i look inward or just in front of me and blow out the match. 

perhaps in this advent season i can embrace the candle of hope. maybe i can and should light it all day, not just at night, to be reminded of God's promises-to let go of expectation, and to be filled with anticipation, which is much more, which implies hope, implies faith. maybe i can be still and  wait in that.

the gown, the spa, and the movie

do you ever have a day that ends up being almost the perfect day- but you didn't' plan it that way at all? which i think might make it even more perfect.  that was saturday. the day of the gown, the spa and the movie. fun, relaxation and challenge.

i haven't bought a gown in years. what is a gown anyway? a fancy dress? does it require jewels?
maybe i just bought a beautiful dress- but gown sounds so much better than dress- whatever it is, it's beautiful. it's long and thin and dark chocolate with  wrappy pieces that can make about 4 different looks - it's by bill hallman  (http://billhallman.com) a fabulous atlantan designer (check him out). our kids went to preschool together and the store is down the street.  i tried on about 5 different dresses and got to feel like a movie star for about 20 minutes as they fitted them and tied them and added jewelery and hand bags and made sure they fit right.  it was fun.  i was completely outside my normal world and my comfort zone. but totally fun. i can't wait to wear it.

then my friend and i decided to check out this korean day spa.  it was hysterical.  which is a strange way to describe a spa.  it was also very relaxing and calming- but very funny.  first of all, it was in duluth ga.  i wrote about duluth a while ago- it is office park land- i kept getting lost in office parks- and sure enough- the spa was in an office park.  it's called jeju and although it's called a day spa, it's open 24 hours- slightly suspicious.  there was a designated clothed common area where there were many saunas and a pool and a korean restaurant, and then there were gender specific areas for hot baths and saunas and steam rooms where you could be naked.  in the woman's naked area there was a section for massage and salt scrubs and the women who did the massaging were older korean women wearing black lace underwear and bras.  hysterical.  and why? i mean i'm glad they weren't naked too- but why not have them in clothes? and why lace? it made me wonder what the guys side was like.

then from there i came home- mike made  us lemon drops. delicious.  and then we watched invictus.

invictus is about nelson mandel and rugby.  it's about a wise man leading wisely. it's about doing the right thing in very hard times.  it's about leading by example. it's about turning the other cheek.  it's about beautiful transformation and redemption. seeing a man spend 27 years in prison and emerge to lead his country - to move them toward equality, to practice justice in his moment to moment living- so powerful. seeing an underdog rugby team win the world cup- aided by inspiration and the faith of their leader and perhaps a poem-  it made me cry- in a good way. it also made me want to read and study about south africa and about mandela, and to focus on this for teaching this week.  so today zoe's copy work was a quote from nelson mandela:

"I learned that courage was not the absence of fear, but the triumph over it.  The brave man is not he who does not feel afraid, but he who conquers that fear."

there is so much that we are afraid of. that i'm afraid of. that she's afraid of.  do we live in that fear?
it's like the bird on the shaky branch- her song is triumph.

so i was inspired by the day.  to enjoy and laugh at the little things- like hot dresses and old korean masseuses in black lace- but not be lost in them. to lead more wisely. to lead by example. and to be reminded of the injustice all around us and to not run from it- to not be afraid.


 

little bird addendum

i gave zoe the necklace this afternoon.

she looked at it and said, " i know this! this is the necklace that momo gave you!"

i said, " i know, and now i want you to have it!"

she said, "no! you can't give it to me! it's yours! momo gave it to you."

i read her the victor hugo quote.
i told her i wanted it to be hers now. i wanted her to experience the little bird. to feel her wings. to reach up and touch the necklace when she felt the world tremble beneath her.  i wanted her to find her metaphorical wings.

she smiled in a knowing way.

"OK mommy- i get it.  Thank you. i love it."

fly on little bird.

little bird

it's the first sunday of advent.  it is my first time listening to Handel's Messiah this year.

we don't have a lot of rules in our house- beside the basic - love each other and show it, don't hurt each other with words or actions, be polite and respect each other- but i did make one extra rule- the christmas rule- to keep it special.  we can only listen to christmas music after thanksgiving- we can only watch christmas movies after thanksgiving.  the kids hate this- they want to watch 'the grinch' all the time- they want to listen to christmas music in july.  but it keeps it special to have it only for one month- something to prize and to look forward to.  so this is now the time.  the season of advent.

yesterday, four things happened:
i took off my little bird necklace
i bought a fabulous fancy gown
i went to a hysterical korean day spa
and i watched a beautiful movie- invictus.

my bird necklace has been around my neck since july. it was given to me this summer by my Godmother while we were at the beach in north carolina and zoe was having a very hard week.

it came on a card explaining the bird- which said,
"Be as a bird perched on a frail branch that she feels bending beneath her, still she sings away, all the same,  knowing she has wings." victor hugo

she gave it to me to remind me that even when you feel that branch move- and the earth quake beneath you- as it was feeling to me last summer- sing on- always sing-even when you're perched on a frail branch- live what you were designed to do- don't be so bothered by the moving branch that you forget who you are- and remember you have wings- things can change- you have movement too.

it has become a part of me.  i've been afraid to take it off.  it's my rabbits foot.  my good luck charm. i have been wearing it with another necklace- one that has three small gold pendants each with the initial of one of my boys.  M, J, and B.  i bought the M (for mike) at a flea market in brooklyn last year, and when mike gave me the boys pendants - the store was out of Zs- so the bird necklace became my zoe symbol.  it was kind of appropriate- the separateness- the uniqueness- the need for a story behind it. 

over the past 4 months- things have gotten much better with zoe.  her brain has been balancing with the help of brain balance and therapy and time and God.  over the past four months i've gotten better too.  with the help of writing it out, talking it out, travelling to ethiopia, and God. 

i think it's time for my bird to find it's wings and leave me.  i think it's time for it to fly over to zoe- to be for her a reminder. the same reminder.  to always sing (as she loves to do)- to be OK with the trembling world around her- to remember her wings.  today, i will pass it on- now it's for her.  and maybe it always should have been.  she is that bird- but so am i.  giving this to her is about separating myself from her story.  for so long- it's been our story- and part of growing up, is me letting her have her own story, and letting me having mine. for so long i've just been holding the branch- trying to stabilize it for her- trying to encourage her to sing.  for so long, i've forgotten about her wings.  now i can see them. small but there - growing.

now it's the beginning of her awareness of the shaking branch and her choosing to sing. of her awareness of her wings. she too, can fly above - she too can choose to not be bound.  is it hard? yes. is it impossible? no.

maybe i need a nest necklace.  maybe i'm the warm place to return to when the branch gets too wobbly or her wings get tired from flying.  maybe pieced together from what ever can be found- i will hold her- be for her a place of return.

naked transformantion

i know this space isn't to write about my patients.  it's to write about zoe- about nonverbal learning disorder-about life with her and her challenges-about homeschooling and what works and what doesn't.  i started this space to write it out so other people who were going through similar things wouldn't feel so alone- so that i wouldn't feel so alone.

but on fridays- when i'm surrounded by people who are dealing with much bigger things- heavier things- living and dying things-i'm humbly given perspective, i'm reminded of how good things are.

especially on the day after thanksgiving.

today i had three new patients who were all given the same time slot- 9am. each patient needed at least an hour, and they got it, but i was running late.  each patient needed hospice.  each patient needed full attention- focused attention- we're not just taking about blood pressure, we're talking about dying.

the second patient i saw broke my heart- in a beautiful way.  he's in his 60s. he has ALS- also known as Lou Gehrig's disease- a progressive degenerative neuromuscular disease- and in the last 8 months he'd gone from snow mobiling to and from his colorado home, to being unable to speak, unable to eat and unable to move, except his arms.  breathing is becoming more difficult.  his facial muscles are weak- so he has a blank stare, his oral muscles don't work and he can't manage his secretions so he drools or has a tissue in his mouth.  there is little dignity it that. he is vulnerable.  he can't hide what he's living.

i've said before that having a kid with special needs is like walking around with your underwear showing all the time. you're slightly exposed.  the humanity we all share in is- weakness- embarrassment-feelings of awkwardness;  most people can hide from these things- but some can't and it's like being stripped down. 

he is living naked.  he writes to communicate because he can't speak- and on his lap he had a board and a pen. 

i asked him what he wanted- what his goals were.  he wrote to return to colorado in the spring, and he started crying.  his wife explained that he was the cook at a christian camp for families and that he wants so badly to go back for this in the spring.  but this past spring, when he got sick- they took him out of the kitchen, and gave him an even bigger job- he's a 'prayer warrior'.

this means that he prays for all the families that come to that camp- each by name.

this man, who can't speak, this man who has been given something to bear that he never wanted, something allowed by his God, is praying to that God, for other people, in the deep clear voice of his heart.  this man is giving back out of joy- not crumpling in bitterness.

wow.

he wrote:  'this isn't the script i thought i'd be given' 
(it never is)
he wrote: 'but i know where i'm going'

and i started to cry. 
i had to borrow a tissue from his lap- a tissue he'd brought- and the three of us cried.

i asked him when he wouldn't want to go on anymore-
(because in ALS you can ventilate people for a while- you can breath for them-because their mind still works but the lung muscle don't respond to the signal from the brain to breath)-
he wrote: until  i can't think or pray, until then i want ventilation.

again, tears.

there is beauty- deep beauty in his sadness.  he's making lemonade when he never wanted a lemon tree.

when i was in uganda this summer i met an old woman who had lived many years there as a missionary teacher with her husband.  he had just died and she had become old and frail and was no longer able to go down the hillside to teach the children in the town.  she prayed and asked God to take her 'home' since she could no longer do her work as a teacher.  she tells how she felt God answer her back- He said- you can't go down the hill anymore- but i still need you- i need you to pray. pray for everyone who comes to see you- pray for the children of the town. transformation of purpose. just like my patient. a higher calling perhaps. a bit closer to 'home'.

this thanksgiving was good. the food.  the people. the weather.  zoe did OK.  it wasn't perfect.  she got sticky. she had some meltdowns.  it was a lot of people and a lot going on -out of routine.  but, there was insight.  she was aware of it and felt badly. she was more re-directable. she's in process. she's figuring it out.  and i didn't have that awful feeling of doom or anxiety, i was able to enjoy the day,  the conversations, with out feeling like the other shoe was going to drop.  for that i'm so thankful.

so i set my patient up with hospice.  i arranged a consult with the pulmonary (lung) doctors for next week.  i added a medicine to help with his saliva- to try to help him 'put his clothes on'. and i prayed with him, because that for him, was healing- that for him, was dignifying- that for him, was humanizing.  that for him made him not so alone.

at the end of the visit, i asked if he would add me to his list of people to pray for.

he wrote: why do you think i asked for your card?

feel the music

i love how music can transport you to another time or another place. how it can elevate you where you are- so that the mundane process of making dinner becomes something else.  i've been listening to the sound track from the movie Red- it's french and dark and kind of haunting- it makes me feel that there is more out there- that i have histories behind me that i shouldn't forget about. 

sometimes i will go through long periods of forgetting about music (except in the car) and then when i find it again, i get so excited- it adds that other dimension- and makes things more alive.

i'll be honest- i'd like to say that zoe's been 'off' today- but really- it's me who's off.  i just woke up that way.
we have people coming and i think it stresses me out a little- but it really shouldn't -they are family-they know me- there doesn't need to be a lot of show- but there does need to be a lot of food.

i think i also have PTSD (post traumatic stress disorder) from two thanksgivings ago- and even a little bit from last year.

two years ago- zoe was at her absolute low point-her most anxious - her most out of control.  we were away at mikes parents house-we had our lovely au pair with us- and it was crazy town.  i can't really remember the details- just lots of tears from pretty much everyone- and a knot in my stomach the whole time-and a lot of stickiness.  there was distress. 

i think seasons are like this- we revisit things- we are cyclical - like nature. it's unavoidable.  and our senses have a memory that is stronger than just our thinking mind. ( i opened jude's old baby diaper bag the other day- and the scent of the bag- brought me instantly back to the basement of a hospital - waiting, waiting-endlessly for his first MRI to finish.)

the music- same thing- transportation.

so maybe the offness of today was just about remembering deep inside my head.  somehow my emotions knew what was going on in there, feeling the past two seasons, but i wasn't conscious of it.

i did know that i was off.  i did know that i needed to go for a run. and it helped.  there is something about movement that can bring quiet- running out the intensity inside.  making your body take on some of the work the mind is doing.  it's balancing.

this is what helps zoe most when she's off.  we stretch and exercise. she does push ups or her brain balance exercises- or 'wheel barrow'.  same thing.  hopefully she'll find her adult language for "engine work"- she'll find running or yoga or something that re-sets her. 

she's doing so well- i sometimes forget where we've been.  she's maturing.  she's funny- as in - has a good sense of humor.  she's connecting with her emotions. she's calling me out on mine.  it's so good to see.  zoe has always connected with music.  when she was two years old, she was listening to jazz and said, "oh - this is django reinhardt!" she'd heard it once. still she can hear a few notes and know who is singing or playing, she can recall all the words to a song she's heard once or twice- she recognizes the tone of the singer-the timber of the voice.  last week mike had a work party.  there was an irish band playing.  zoe was there with him and immediately started to dance- and improvise an irish jig.  the band loved it- they handed her a tambourine. she danced and played all night- not shy- in her moment of glory. zoe at her best.

maybe this thanksgiving will be different from the past two.  maybe i'll be able to replace those memories with some new ones.  maybe it will be full of song and transportation.

here and gone

i was with someone today when he took his last breaths on earth.

that is a strange place to be.

i was on call. i was rounding with the nurses- it was early- around 7:45 in the morning.  i knew he was dying.  i had spent a lot of time with him yesterday- with his family- trying to sooth him- trying to calm him- to find that place of peace between worlds. yesterday was hard. he was moaning. he was restless- i was trying all the medicines i could- i was trying the non-medical interventions- talking with his family about music and touch and talking to him.  he was fighting it. muttering.  fidgeting.  walking between, not here, not there.  i knew we were close and i told them.  his daughter needed to leave- to drive her brother home for work- 8 hours away.  i told them i thought he'd be gone by the time she returned.  she'd stayed. i was so thankful.

so while we rounded- the daughter came running out of the room- "come!!" she cried.  " i think he's gone!"
we all headed to his room. 

his eyes were open.  they weren't looking anywhere.  there was quiet. stillness. then he took another breath. his last.  the nurses were bustling around- trying to get his vital signs- to get his blood pressure and pulse. 

why?

because it's something to do.

no. i said.
stop.
let his family come here to the bedside. let them tell him they love him.  let them hold him.
get the medical stuff off.
he's going.
let him go.
let him be at peace.

everyone cried.
but it was OK.  he was gone.  he wasn't suffering anymore.  that cancer was done. it can't touch the spirit on the other side. now just a body lay there in that bed.  there was one less being in that room.

it's strange- the coming and going of spirits.  babies being born and people dying. one minute someones not there and then they are- or they're there and then they're gone.  one blink.  change.  eternity. 

i haven't been there much when people are born or die.  the first and last breaths.  but it does make you feel small.  infinitesimally small.  we are but a mist. a breath.  a glance. 
here.  then. gone.

so fragile.

so humbling.

i'm just sitting with this today.

with our humanness.  our smallness.  but also- our passion.  so much goes into a life.  so much influence in our 70ish years.  so many other peoples lives touched by ours. brushed up against ours. 

what are we doing today to make it better? what are we doing with our lives? our moments of breath? of being?

off track is good

friday again.
almost thanksgiving.
remembering.
looking ahead.
on call this weekend- it's been a long time since i've been on call.
just finished 'dealing' with the beets from the vegetable box- pink fingers again.

it has been a good week.  a week of continuing to let go. stepping outside of my time frame, my agenda, my plan for the day- and working on embracing what comes- loving the surprises- and remembering that our goal is learning- our goal is growth.  i say this about homeschooling- and i say this about me.

yesterday zoe and i were doing african geography.  we were studying east africa- the countries, their capitals, the rivers and lakes that are there- and the oceans and seas.  we were talking about the conflict in some countries and war and tribalism.  she wanted to know if our country was at war.  i said 'kind of' - we talked about afghanistan.  i was ready to move on.  i was ready to hit the next thing on our schedule. but she wanted to talk about war, and conflict and why countries don't get along- why people fight and kill each other because they believe different things.  how do you explain that? she knows something about european history and the many wars over religion and land and power- she knows about US history and about fighting for independence and freedom of religion- and ideological differences.  she knows about slavery and injustice.  but from a child- when you look at war from that beautiful, naive perspective- you remember how it sort of makes no sense. at all. she decided she needed to write a letter to president Obama. right then. right there. she needed to ask him what we could do about the fighting in afghanistan. 

i actually started to resist.  to tell her we needed to move on- and to read our book.  but then i remembered what we're doing here.  learning.  and why we're doing it- to grow, to understand, to expand the mind, to build connections. to make it real.

so she wrote her letter.  she asked why?  she asked what we could do? she said it needed to be something.  she signed her name.  she wrote ( p.s. i'm 11 years old).  she found the address to the white house- she stamped it. she mailed it.  i hope she gets a response.

it reminded me of the organicness of learning.  that listening is a huge part of teaching. sometimes following her lead is much more meaningful then sticking to some plan.  let her be an active learner. let her ask the questions.  let her know i don't always have the answers. let her see that life is process. that adults don't always get it right- that leaders and countries get it wrong.  that it's good to question things.

i want to be a more transparent parent.  i'm a very transparent doctor.  it think i'm a transparent friend.  showing vulnerability can be a strength. i want to do this more at home. i think when people know you're not hiding something- they can trust you more.  it increases relationship.  it cuts through the barriers.

today i 'rounded' on the patients i'll be covering this weekend.  i met them, i met their families.  i told them that i'd be the doctor this weekend.  that i'd check in, in the morning and see how things are- that we'd deal with the issues, the things that aren't working- and try to make them better.  again, it's about listening.  it's about being active in the process.

so maybe my days on monday - thursday aren't that different from friday. maybe life is a bit simpler than i make it out to be. maybe the same things that make a good teacher, make a good doctor, or a good parent or a good architect, or a good business person.  maybe it's honesty- transparency-listening- asking- and being willing to grow.  being willing to go off track.

lucky

i accidentally bought a cowhide rug today.

it really was an accident because it was an auction on ebay.  i NEVER do this.  OK, i've done it twice. but i've never actually bought anything on ebay- i've never been the high bidder.  last year i tried in desperation to buy myself a le creusset pot for my birthday, (and i must have bid on 5 of them) i never won.  then i tried to buy several antique cotton tablecloths- again- no wins.  so i'd pretty much figured that you always get outbid.  for the past few years i've been checking out cowhide rugs.  so when i saw this beautiful picture of a brown brindle cowhide- and it had a high bid price of 52$  i got excited. the problem is that when i became the high bidder- i read the description again, and the photo is an "example" of what the rug "sort of" looks like, in brown not brindle. there were 38 minutes left in the auction.  i figured i'd be fine and said a quick prayer that i'd soon be outbid. no such luck- apparently everone else bidding had re-read the description too.  fantastic. so basically i 'won' the bid on an item i haven't even seen a picture of.  let's hope for the best. maybe i'll get lucky.

i've been cleaning out boxes and closets and purging. i'm getting organized.  i'm getting rid of things.  when i do this, i usually divide things into piles- save,give away, throw away and purgatory.  purgatory is a holding pen for things i'm pretty sure should get tossed, but i'm just not ready.  i use this system with everything from clothes to my kids toys to papers.  if the items in purgatory don't get worn, played with, asked for or needed for several months- i toss them. 

i'm not a hoarder. i don't think i have a lot of "stuff",  but i do like to save memories. so when i go through a few boxes- which i've moved with me over the years- i find all sorts of treasures.  it's like going backwards in time. i read what i wrote about 10 years ago, even 20 years ago- notes passed between my friends and i in high school. so funny. i found random pictures of zoe as a baby, jude's birth hospital tag, bryn's birth announcement. i found hundreds of letters from mike, always on handmade cards with soulful words.  and i found cards i'd saved from friends.  it was kind of like being at my own funeral to read the things people put in cards. i put things in their appropriate piles.  and then i found a small stack of three by five cards.  on each card, i'd written something that makes me happy. and this is what they said- in random order:

christmas
seeing my mom after i've been away (she gets totally excited as if you're famous- or have been gone for years)
holding mike's hand
writing and reading my bible and prayer
zoe saying 'i love you' and hugging me
feeling mikes breath on me when we sleep
taking a nap with zoe
taking a bath with candles and a glass of wine
laughing with friends
playing the guitar and singing with my brother and sister

these cards have no date- but it was obviously before my little boys were born.  the cool thing is that besides adding them onto the napping and hearing 'i love you' cards- the list is still the same.  the same things make me happy.

i bet that if most people made these three by five cards they'd be similar- there wouldn't be a lot of 'stuff' on them. it wouldn't be buying new shoes or having a new car.  i wouldn't be buying a used-possibly ugly non-brindle  brown cowhide rug. 

so i managed to toss my highschool latin homework (i have  no idea why those were ever saved) and some letters from camp in the fifth grade, and a lot of old work papers. i got two boxes down to one. but these cards will go in the save pile.  these cards will be taped across my bathroom mirror for a few weeks.  and they will remind me of really how lucky i am.

the wind today

right now i can feel God in the wind- moving things- shaking things up- then being quiet and waiting- then moving again.  i'm out on the back porch- regrouping- it has been a challenging day of a homeschooling.  zoe's brain is just off- and i can tell it's making her crazy.  we've plodded through- albeit with many an inappropriate comment from me ("That's it! i'm going back to work!") super- way to model handling frustration- way to be helpful- as if she would say "oh no- not that! OK i'll get it together now!" being a parent is so humbling.

by the time her domestic science class rolled around at 11- i was due for a break- there was no way i was going to class. apparently she felt the same way- when i picked her up- she was playing ping-pong with some boys while her class worked on their menu planning activity.  ( i would have done the same thing probably- but that's not the point).  her teacher remarked that at least she wasn't bothering the other kids.  that is good news.  she reminded me of Shiva- the twin brother of Marion in Cutting for Stone- his inability to function in school- despite his intelligence- his almost confident focus on what mattered to him and his ability to "climb into the tree house in his head, escaping the madness below, and pulling the ladder up behind him".

everything i told her to do- she either 'forgot' or just tuned out- was it disobedience or just legit confusion, inattention, overload?  it's hard to know with kids, but especially with nvld kids. one time an excellent therapist told me that when trying to figure out if behavior is just plain bad, vs. due to a disability- and then choosing to either punish it- or understand it - it behooves everyone to ere on the side of understanding.  she said if you're wrong and it's bad behavior- you can always adjust that- work on it, correct it later- but if you punish for disability- it will be years in therapy.  my heart was telling me to just let it go- give her the rest of the day as down time- but it's hard not to feel like i'm giving up- or giving in.  but that is what i did.

she just came running upstairs from down in the play room - elated.  she had been trying to climb up on top of this  ikea swing chair and use her arms to pull her up to swing on it instead of in it.  this is a HUGE motor challenge for her- it requires strength, coordination, balance and trusting your body.  in less than 5 minutes she'd done it- and done it with out help.  she is so proud of herself! i'm so proud of her.  it reminded me to trust my gut about her- to not over think it- each physical developmental milestone gets her brain more organized- we are all interconnected- mind, body, soul.

i think that cool north wind blew into the playroom and helped push her just a little onto that swing.
i think that cool north wind blew as i walked the boys to school and noticed the feel of their hands in mine- no longer the baby sized hands that get swallowed up, but they are now substantial - they fit.  
that wind blew in the grace to appreciate the leaves falling around us as we walked- to notice the contrast of the wet black bark and the pink and red and yellow leaves that still cling on- and the color of the blue gray sky.

God is everywhere.

welcome home yoyo!!!

 OK, i know i didn't adopt him, but i'm super attached!!! how cute is he!

and now that he's officially back in the US and officially with his mama lisa-

i can share-

i love this one- lisa is in love!!

i'm in love too-

Bye Bye

39

am i a terrible person because i hate rainy days?  ok- so maybe i don't hate rainy days- i hate wet raincoats, arguing about rain boots, soaking shoes because of puddle splashing on the way to school without rain boots  and then whinny, complaining children. i know.  good moms are supposed to love the experience of watching their children engage with everything- even when it's messy.  i try.  i do.   but honestly- i just wanted to read a book by a fireplace somewhere and drink tea today. instead i'm traipsing back and forth to and from each persons school four times in the rain. i'm crabby. they're crabby. mike's away. and it's still raining.

and i'm about to turn 40. i have one month left of being 39.  i can't quite figure out what the big deal is.  i think turning 39 felt worse- like you were waiting for something bad to happen- like you had to hold on to something that was slipping through your fingers and inevitably going to go anyway.  so why try? it's kind of an exciting place to be- because it's an opportunity for redefinition.

if you think about your life in decades- the first one is about getting down the basics of being a human- learning to walk and talk and separate from your parents and hopefully to read and write and find basic food in some form or fashion.  this is where my boys are. they're in the beginnings and middle of that. 

then the second decade  is about figuring out more about who you are as an individual human.  what you like and don't like to do and read and study and who you like to hang out with.  it's about further separation from your parents, and finding deeper friendship and connection and a different kind of love, and finding your identity with other people, and hopefully being able to live on your own by the time you're 20.  this is where zoe is now- she's at the very beginning- she's still working on somethings from that first decade- namely finding basic food :) (can you help me open the orange juice?)

the third decade (20-30) is further self discovery- further education, career decision and development, and often deciding who to spend your life with, and maybe start having babies.

the fourth decade (30-40) seems to be all about having the babies, narrowing your career focus and finding the balance between work and family-and about settling down.

then you turn 40. it kind of feels like you've climbed a mountain and you're stopping to reflect and look back at where you've been and what you're going to do next. there is a "peakness" to 40. and an opportunity for re-direction, or clarification of direction or even just satisfaction at arriving after climbing for so long. 

for me, 39 has been a year of letting go.  letting go of myself as baby maker.  letting go of myself as what defined me in my thirties which for me was really dealing with fertility issues and growing my family, and dealing with the challenging needs that arose with my children. if anyone has dealt with infertility on any level, you know how hard it is to ever get it out of your head, it's been hard not to be disappointed monthly.  i was stuck for a long time on wanting four kids- needing four kids- because i'd decided i was supposed to have at least four kids.  i'm finally moving on to being happy and more importantly satisfied and thankful with three. moving into a place of acceptance and peace about this feels so good.  so  i almost feel like i'm running towards 40.  i'm ready to see what's next. to be in the business of growing people not babies. to have my body back to myself. to be satisfied and curious with what is next. 

this year has also been a daily reminder of being  thankful for the fact that life is full of surprises- that when you think you're an academic medical doctor on a research career path- you can become a practically stay at home - homeschooling mom.  and that you're still you- you're still ok- identities are really what's inside not initials after names or where we house ourselves from 8-5. and i'm still working on being better at both jobs. embracing the privilege of having three transforming people who call me 'mom", embracing the rainy days- boots, wet coats, puddle splashing and all. and looking forward to the times when i do get to sit and read by the fire. 40 here i come.