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.

foxfire 2

it's another friday- a day of work- a day to wear my other hat- and my white coat. to be reminded of my health and the blessing of helping other people.  and this week to be reminded again that i'm not God.


Mr. A who i'd visited last weekend at home, was in the hospital today. last week i told him he he couldn't go on his cruise.  and i was right about that.  but i also thought he was heading out of this world quickly- and i might have been wrong about that.  he does have terminal cancer and liver failure- but the body is a tricky thing and physicians are not God. 
he'd come in on wednesday as planned, to have the fluid drained from his belly - and in the time from when i'd seen him last saturday to wednesday, he'd gotten much worse and his belly had begun to hurt and he was infected. so when he got there he looked pretty sick and was admitted to the hospital.  he got fluid and antibiotics and scans and the nicotine patch and by the time i saw him today, he looked great, especially for a guy who i thought might not be here very long.

he smiled and gave me a giant hug and then he gave me the book he'd been promising. he'd remembered.  "Foxfire 2: ghost stories, spring wild plant foods, spinning and weaving, midwifing, burial customs, corn shuckin's, wagon making and more affairs of plain living."  basically everything you could ever need to know.  i can't wait to read it.  what makes this all even more special is that Mr. A can't read. he told me this early on in our visits together and i can't remember how it came about - if i asked him, or if he volunteered it, but i remember his eyes looking to the floor and his expression of shame.  i thanked him profusely for confiding in me as it greatly changes how i communicate with him.  each visit i go over all his meds- by color and shape and make sure he knows which is for what and when to take it- and i go over the written instructions with his daughter so she'll know.  his honesty enabled me to help him- and if i hadn't know, my ignorance would have interfered with his health care. 

i've often wondered about him.  his growing up.  why he can't read.  he's a smart guy.  he asks good questions.  he's done just fine in life.  was he like zoe but back in a time when schools didn't pay attention? when they blamed? when they didn't know what to do with students who struggled? or maybe he didn't go to school- maybe his parents didn't read.  i don't know.  but i know he values books.  he has lots of them on his shelves.  this book, Foxfire 2, smells of pall malls and it's pages are tinted yellow like his fingers. 

on the first page is a dedication.  copyright 1973.

"to high school kids all across this nation- all searching, all groping, all testing for the touchstone, the piece of serenity, the chunk of sense and place and purpose and humanity they can carry with them into a very confusing time."

isn't that what we're all looking for? isn't that what we spend lifetimes searching for?
these are still such confusing times. i'm not sure all the answers will be found in the pages of foxfire 2- but i like the start-i like the groping, the testing.

so i said goodbye to Mr. A again, hoping i'll see him soon.  i thanked him and asked him to sign my book. my little piece of serenity and purpose and humanity.

today's smile

just got back from pittsburg- cold and leafless and sleepy- to the beautiful south.

so today zoe and i jumped back into homeschooling after three days off.  she's doing much better- much, much better than last year- but i still constantly question my goals for her and doubt myself and wonder how much to push her- how much is she really learning- how much is too much- how much is not enough.  i try to be gentle on us- but it's hard. i try to be still.

today she did her copywork very well.  she did great in the vikings class.  we did math for a while- reading big numbers, then word problems (which tend to be super challenging for her) then multiplication- and she was on a roll- doing great.  then i decided to review telling time and word problems related to telling time and the difference between times etc.  she began to get a little sticky.  we worked through it.  part of the problem was her understanding the units of time- were we dealing with minutes or hours or seconds or days? so we reviewed how those units were related.  i asked her how many hours were in a day.  that was it.  i think her brain was just done and she started guessing.

"5? no 30? no 10?......ohhhhhhhh.......i HATE this!!!  why are you asking me this??? this is stupid!!!" and began to cry. "why don't i know this!!!!!"

once again- a beautiful learning opportunity. we spent the next 20 minutes talking about being OK with not knowing everything.  and how she always remembers everybodies names and i almost always forget peoples names.  we talked about reacting to our feelings, and using words. we talked about not making mountains out of mole hills- which is hard when it really feels like a mountain inside. i get that.  i'm like that.

we talked about how everyone's different and how that's OK.  that our value is not about what we do-or how much we know, but who we are- it's about character. 

i know she has unique struggles.  i know she  has to live with things i don't. that her world is not mine and that it must be very hard to deal with what she deals with daily.  but i want her to know her value- just because she's zoe.  even if she never remembers how many hours are in a day (although i know she will).  even if she is always overwhelmed by the seams in her clothes, or the sound of the vacuum.  she is good.  she is beautiful.  she has purpose and value and worth.  because we all do.  because God made us that way.  sometimes we can't see it- sometimes there are seasons when all we do is look for it and still can't see it. maybe that's because our best traits are those we give away- our friendship, our time, our faith, our smile.

today i ran.  for the first time in months. and  in the beginning it was awful.  i mean painful and exhausting.  i felt like i might keel over.  i thought i must be anemic or have leukemia or something terribly wrong with me, because why else would it feel so bad?  i had to make a choice- should i just go home and wait a few days? maybe i have a cold?  but then i remembered that running is like life- and you just need to go on- because you're not dying, you just sometimes forget. and it got better.   i began to realize that it's finally getting easier to let go.  it's getting easier to just be zoe's mom- and not entangled in her head- not trapped in her world- and it's getting easier to be OK with that separation.  to see that it's healthier for me and for her. it allows her to grow and be on her own- without carrying my issues with her. it allows me the distance i need to be a better parent.
i hit a down hill patch and felt great- and the sun was warm and the wind was just cool enough and i just kept going. i felt alive and thankful and strong. and i smiled.

elbow room

i’ve been thinking about travelling and about living abroad, and about isolation, and connection.


when i was 20, i lived in costa rica for 5 months. it was life changing. when i went, i had short hair and skinny legs and spoke no spanish- well almost no spanish. i got off the plane with my dictionary in hand and the name of the family i was living with . ines flores de castillo. it was january 1991.

over those months i experienced being different and awkward and saying things incorrectly, wearing things incorrectly and feeling out of place. i was too tall, and my hair was too short. i was too skinny and my clothes were too “gringo”. my doc martin shoes and t-shirts which were cute in new england- were not attractive in central america. and i wanted to be heavier- to have long hair- to wear jeans that were tighter and had ankle zippers with flats- i wanted to speak spanish fluently so i could understand my world- i wanted to communicate.

when i got there, i didn’t like rice and beans for dinner and i really didn’t like rice and beans from the night before – re-fried in oil for breakfast. i longed for bakery items and chocolate. i missed my boyfriend (mike reid :)   i missed connection. touch.  you don't know how important physical human contact is until you don't have it for a while.

i remember being on the bus one afternoon coming home from class.  i'd been there for about a month.  i still struggled to speak the language, to understand and to be understood.  it was tiring. the bus was crowded and i was sitting next to a guy a bit older than me- he was wearing a red plaid shirt.  i sat there feeling gawky and awkward and stared at and different as people continued to push onto the bus.  soon we were smooshed together and my elbow rested on his upper arm.  in a most situations i wouldn't even have noticed this small quarter sized part of my body touching slightly this other person.  but in this setting, in this moment- i became acutely aware of my elbow.  that small piece of my skin that gently rested on his arm became all of me.

it was an awareness- a connection, a desperately needed void was being filled by a useless part of my body. it was  the power of touch.  i could have ridden that bus forever just to hold onto that small electric connection. just sitting there and feeling the warmth of his arm reminded me of my humanness. of our commonality despite the lack of verbal communication.

being in  another culture and another place is kind of like time travel. you are so far from home- that it feels like time and space are involved.  that's how it was for me in central america in the '90s.  it was also during a war. a time when the US was glorified by most of costa rica.  the news was full of pomp and circumstance.  but i was learning in my classes about central american history and culture- what we'd done to this region.  how our choices- our self interest had affected these countries and contributed to their poverty, their disintegration. i was wrestling with identity and with my own culture.  it was a time of finding myself- outside of my family- outside of my country and with out my language. 

soon i began to love rice and beans.  to crave it in the morning all crispy in oil with salsa inglese.  the language became real and beautiful and i began to understand the people around me- to feel connected. and my hair grew and i gained 10 pounds and i bought myself some 'tican' jeans and mike came to visit.  finally, i began to dream in spanish and that connection with this place- and these people, arrived. so when i rode the bus most of the time - my elbow was just my elbow, and not the center of my being as it had been in those early days when time and space left me too alone and disconnected.

beet jucie

my fingertips and tongue are  deep red.  covered in the juice of beets.  i love beets. they're so earthy, natural. they need nothing.  they hold their own.  that dirty-earthy taste after being baked.  it's enough. it stands alone.  not much we eat is like that- so i love beets for their ability to just be - good as they are.

i went to Mr. A's house today. my patient who is dying of liver cancer.  it was about 45 minutes away. i went to see him and maybe to say goodbye.  he lives in the basement that he built- it has a wall of a kitchen, a giant TV and a small bathroom.  it has his hospital bed and his bookcases with books and dvds and a gold watch and his medications in shoe boxes.  i had to ask what "sex= aspirin" meant- it was scribbled on a box.  (it means that box has viagra and aspirin, or after sex he needs an aspirin- they said laughing). 

i arrived to a room full of visitors smoking pall malls.  he was smoking pall malls too.  everyone was overweight with thick southern accents and they all shared a deep love for this man.  they were all committed to him, thankful for him, and valued him. he was their 'pawpaw'. i loved it.  i felt privileged to be there- in their presence- sharing in this with them.

his hair dresser came for a visit while i was there.  she told me her story.  her husband had left her after 30 years. he went to work one day and never came back.  like country song lyrics. Mr. A was going to ride the 'trail of tears' on his harley with his friends and didn't have anyone to ride on back.  you have to love this - this culture of motorcylcing-leather dressing, harley men with their women on the back of their bikes.  she was offered a spot on his bike and said yes.  she tells that he showed up to get her, long white hair and beard, head to toe in leather, and she thought, "what have i done?" but, she said, he was a perfect gentlemen.  they were together all week- night and and day, and he was a perfect gentlemen.  they've been friends ever since.  what a great story about his man.  and as she told it, he had a giant smile on his sleepy face. 

we talked for a while- about his symptoms and about life and marriage and family.  i examined him and found him full of fluid and short of breath- but mentally clear and not jaundice (yellow) which was good.  we reviewed his medications and what he should and should not be taking and what he could take if he needed it.  then i realized i'd been there for almost 2 hours.  i needed to go.  there were so many people in the room, we hadn't talked about death.  we hadn't talked about his nearing the end of this life.  we hadn't talked about his cruise next week. 

i went to my car and found 3 of his family and good friends- they asked me how much time he had.  they asked me if he could really go on a cruise next week. they asked me if he was going to get better.

no.  i told them.  no- he most likely can't go on the cruise next week.  no he is not going to get better and i think he has weeks left.  they knew this.  but they were worried that he didn't know this.  so i took off my coat and when back inside.

we talked for another 20 minutes about his plans for the end of his life.  about listening not just to his mind and his heart but also to his body.  that even though he wants so badly to be on that cruise- that maybe we should admit that it's not just the loss of the cruise he's grieving , but also the end of his life. that not going- is admitting that he's dying. and that is terribly painful.  but we need to be honest.  i promised him long ago that i would tell him the truth and the truth is that he's at the end of a life well lived- at least a life that has resulted in  him- surrounded by friends and family that can't say enough about him- his love, his care, his provision.

i gave him a huge hug good bye.  i so hope it's not the last.  he has a book for me-it's a book he's told me about for a while now.  a book about practicing medicine in the woods of appalachia- a book about knowing what herbs and roots and barks are good for things.  what a treasure that will be.  it will join my treasury of 'grateful patient gifts'- they compromise: an asian bangle from a young cracked out patient when i was a medical student and that was all she had; a harley davidson bandanna from an older vet who took it off his head and told me to," wear it as a bikini top"; a rind stone tiara from a wild older woman who was going blind; a hand made fertility necklace from a patient who knew i was trying to conceive at the time; a box of almonds from a patient who i'd given almonds to when he'd missed lunch; and several hand scratched notes of thanks.  these are the people i love to work with.  people who share themselves.  who's gifts are representations of our connection. there is meaning there.  value.  depth.

so i drove home with a tear in my eye for my friend and patient Mr. A. thankful for him, for his family, for the fact that our differences don't really matter.  our worlds which would never normally meet- have met- and we've each grown from that. and thankful for all the patients that are like this. beet like- salt of the earth. original and true. just as they are.

wholeness of being

today the weather can't make up it's mind and neither can i.  rainy, sunny, winding and cold, cloudy, then sunny again.  i so get it.

today lisa returns to ethiopia- and i so desperately wish i could too. but instead, while she's boarding the plane, i'm getting the report from the vikings class teacher that zoe has been distracted, disruptive and that i must now attend the class with her.
one step forward two steps back.
but since that is the dance pattern of our lives- i'm finally getting used to it.  i'm not crumbling to bits.  this is good news.  it means that not only has she grown up this year but i have too. i had the moment of "oh dear God, she can't even handle an hour long class- she'll never get back to school".  but it was a passing thought- not one that clung on. i had a longer moment of, "oh dear God, i really don't want to attend the vikings class with her".  but eventually that one let go too.  because she is my daughter and i love her and i will do what i can to help her and i will let go of what i can't help her with.  there is no right answer. no formula.  no guarantees.

i used to think that there was a moratorium on suffering.  that the universe would only allow so much per person.  that you could pull out the card reminding God that you'd had enough.  after zoe was born, and we realized all her orthopedic problems, and her delays,  i thought i'd reached it. ha ha ha.  then the real trouble began to unfold for her and around the same time i was pregnant with jude and found out he had hydrocephalus and a brain tumor and congenital hypothyroidism (read happy birthday jude from march '10 for that full story) and was convinced that we'd definitely had our share. we were done with bad luck.  we were done with hard times.  then bryn was born and spent the first week of his life in the ICU unable to breath. at that point, i got it- there is no cap on how much one person can take- how much one person can cry- or how many challenges someone can experience. i know that compared to most of history and most people living today- my life is really not that hard- and these challenges are much less than many- but until you personally have many seasons of "oh you've got to be kidding!" i think this magical thinking is not that rare.

the good news is- in all the crap- we're not abandoned.  we're not alone.  we are loved by the God that allow us to experience the sorrow.  it's irony again. as parents we get the microcosm of this- perhaps even more often if you have 'special' kids.  i could avoid the social suffering of zoe by never letting her leave the house- but because i love her- i allow her to go to the vikings class that she wants to take, knowing it could be overwhelming to her and challenging.  i allow her the choice and i try to be there to help her pick up the pieces- i try to not abandon her and to love her through the sorrow.

it's not easy.  but it's still good. 

in ethiopia i found a part of myself that had gone missing. it hadn't gotten lost, it had just been covered up by all the sadnesses of life. but in those weeks i was able to shed some of it- to smile again- to laugh a lot- to be reminded that life is good-despite. i wouldn't trade that time of healing for anything.  i've been put back together. 

Eugene O'Neill said  "man is born broken. he lives by mending. the grace of God is glue." 

half way around the world i felt that grace- and there is wholeness of being again- in the brokeness of life.  for now.......

i've had some time to think about it

i've had some time to think about it
and watch the sun sink like a stone
i've had some time to think about you
on the long ride home
                       

i got a call this morning from one of my patients daughters. i know them well.  i love them- really- i do.  she told me that he started bleeding yesterday and she called 911. at the local hospital they told him that this was it- his time was near- he had maybe weeks- and he went home with hospice. he was supposed to be going on a cruise next week- his third one this year- since he got his diagnosis of liver cancer.  i saw him two weeks ago and he looked really good- especially for a guy with metastatic cancer. that visit i meant to talk to him about hospice again- he hadn't been ready when we'd talked about it before. i know that this is how it goes with the liver- it stops working and you can't filter things and get kooky and you can't clot your blood and you bleed and you can't make proteins and you fill up with fluid.  but i wasn't ready for it to be this soon.

i met Mr. A about a year ago.  he looks like santa claus- but he was a gruff old man back then.  he was one of those guys who'd never been to the doctor and wasn't about to start now.  he had baggage.  i love this type of guy.  i love letting them know that i get it, and i'm here when they are ready and that i really do care.  i listened to him for a long time that first meeting.  i didn't say much of anything- i remember his intense blue eyes- and they were searching me out- in a deep way.  he wanted to make sure i was being real.

we've seen each other every month since that visit.  now he looks and acts like santa claus.  he brings me pictures of his trips- he brings his stories- and restaurant recommendations.  i love when i see his name on my schedule.

today it's cold and rainy and lonely looking.  and when his daughter called- i bit my lip.  i hate that i hadn't yet set him up with hospice- i hate that he had to go back into an emergency room.  i feel like i didn't do enough to tell him what i knew was coming.  i know in my heart that he knew, and that his daughter knew- but i can't help feeling that i failed them by not laying it out.  because the more connected you are with people- the harder it is to give bad news.  i know that.  i teach that.

when we went to lalibela in ethiopia- one of the last churches had a tunnel to get to the final church.  the tunnel had been built as a metaphor.  the long dark period representing dying and then emerging into the light symbolizes heaven. or the dark tunnel symbolizes those periods in life that are so hard- dark-lonely and coming out into the light signifies the love of Jesus.  our guide was encouraging us to take this tunnel path and not walk outside to the final church.  he prepared us that it would be about a 10 minute walk in pure darkness before we'd be able to see any light.  i really wanted to do it- to feel that- but i was scared.  we started down the tunnel- and once we were about 20 feet in- it was completely pitch black-and we started feeling panicky- what if something happens- what if we got stuck-what if we were trapped- and we backed out the way we came and took the outside route. we had options.

what was i so afraid of? how bad could it have been? what did i not want to know? perhaps that's what it's like in the end- that fear creeps in- the only one who wants to live to be 100 is the guy who is 99. i don't know, i've never died before.

one of the things that my job forces me to do is look life and death in the face.  and it doesn't get any easier.   it forces me to ask hard questions of myself- and to see myself in process.  is it that the patient isn't ready to hear it- or that i'm not ready to say it (or hear myself say it)? death is never, ever easy.  the sorrow comes in what is left unfullfilled- but there is always something left unfullfilled, isn't there? always someone left behind- always someone you could say 'i love you' to one more time.

Mr A will go home today- he will go home to die. he will have his daughter with him.  she told me she has pictures for me, but she won't bring them, she said, until, well....i won't leave his side. she knows.  they know. he will have hospice.  he will be comfortable.  he will not be in pain. and i know he's at peace because we've talked about it. and  i know he's fullfilled because he's said so. 

in two days i will spend my morning teaching first year medical students about death and dying- about being prepared- about helping our patients to prepare- about addressing the elephant in the room. about saying the D word.  ironic that this week Mr. A is showing me my own issues with this very topic, my own fears, my own avoidance, my own desire to have it not be so. sometimes our patients prepare us.  it's an iteritive process for everyone.

perhaps when you know the tunnel is the only path- perhaps the fear is less-perhaps you reframe, you reach peace, perhaps you turn around and say, i love you, to that someone for the last time.




someone dug a hole 6 long feet in the ground
i said good-bye to you
and i threw my roses down
ain't nothing left at all in the end of being proud
with me riding in this car
and you flyin' through them clouds


One day I took your tiny hand
Put your finger in the wedding band
Your daddy gave a piece of land
We laid ourselves the best of plans
Forty years go by with someone laying in your bed
Forty years of things you say you wish you'd never said
How hard would it have been to say some kinder words instead
I wonder as I stare up at the sky turning red

Headlights staring at the driveway
The house is dark as it can be
I go inside and all is silent
It seems as empty as the inside of me

I've had some time to think about you
And watch the sun sink like a stone
I've had some time to think about you
On the long, on the long
Oh the long, on the long
On the long ride home
                                        patty griffin lyrics
                                        the long ride home
                                        (even better with the music)
                                      

broken pots and new flowers

i finished the book 'cutting for stone' the other night and i cried like a baby.  i cried because it had many sad parts in the last 100 pages. and just as many beautiful parts.  and i cried because i had a cold so wasn't feeling great anyway.  and i cried because it felt like i'd finally left ethiopia, and this beautiful story was over.  it was symbolically sad. it was a great three weeks of transportation- of being elsewhere- in another time- in another place.  i love all the memories in my head, from that story and from that trip.

a friend once said it's not the place, it's the people in the place. so true, but they're hard to separate.  we met so many amazing people. the other adoptive parents were such an incredible group- so diverse-so interesting.  musicians, writers, designers, explosives analyzers, art teachers, professors, carpenters, social workers- all with different lives and stories and all with a similar love of ethiopia and a love for their new children.  the people we met at the hotel- friends from sweden and saudia arabia and ethiopia via usa- and the people who served breakfast and dinner that we got to know- all of them-lovely. the nurses at the orphanage- and the children- beautiful. all the way to the people who sold things at the market.

on one of the last days we went to the market- the mini merkato- a place to buy traditional ethiopian wears.  i hadn't been feeling great- but really wanted to go and see it.  as soon as we got out of the car and into the first little store- i realised this might not have been a good plan. i think i had that gray look that comes on when you feel cold and clammy and hot all at once.  the store owners let me sit on a little leather stool and asked me what was wrong. i told them my stomach wasn't feeling so well.  immediately they ran off to buy me some 'royal tonic'.  i sat there for an hour- i drank that royal tonic- which they wouldn't let me pay for- and it worked.  i felt much better.  during that hour we had great conversations in english and sign language about ethiopia and HIV and health care and family structure.  i was so amazed at their hospitality. here i was, a stranger, in their little store for an hour, blocking half of their merchandise- literally and they are buying me soda.  it was a beautiful memory. 

the other day my mother-in-law sent me a story about an old woman who carried water from a well in two pots- one on each side of her.  one pot was whole and the other pot was cracked and half the water leaked out each time she returned from the well.  the whole pot was very proud of itself for getting the job done correctly and the broken pot felt badly that it could only get half the water back each trip.  the old woman said to the cracked pot- look at your side of the path- see the flowers there? i planted seeds because i knew you'd be able to water them and now the path and the house are filled with flowers because of your brokenness.

the world is full of broken pots- i am one. we each have a job here to do- sometimes our brokenness changes what our job is- and what we think we are doing is only half of what we're really doing- and it's not even the most beautiful or meaningful part.

in cutting for stone, marion, the protagoinst, has a twin who reminds me of zoe.  he's different, he's a pot that brings flowers. but as the story goes on- we see that marion, who goes about things the right way, who's life is normal- he has cracks too- he doesn't always get the water back either- there are some flowers along his path as well. 

i think we're all like that. the more you see of the world, the more people you meet, the more insight you gain into yourself- the more you see the imperfections and the beauty in them. zoe see's the world differently- it's a more literal version- it's in some ways more pure, and as she learns to carry a bit more water- i hope she'll keep watering the flowers on her path.

ethiopia means new rose, new flower.  ethiopia is full of spectacular flowers- even flowers that grow up through little cracks in the midst of extreme poverty.  i can never help but wonder if all that beauty in the center of such poverty is God's way of reminding us that there is grace in our brokenness.

my book is over, my tan is fading. but each night i sleep under my ethiopian blanket- that i bought from that little store, and in the morning i wear my bracelets and one of three scarves and sometimes a lalibela cross- and i think of the flowers there and the people and the grace.

happy halloween

wow- last year seems like a long time ago.  and i'm so thankful for that.  that it's not last year.  that we've come this far.

last halloween i won't forget. it was a dark spot with zoe.

she had been taking abilify which we had reluctantly put her on.

(i need to pause here.  there is no data on nonverbal learning disorders and medications.  there is very little data on autism and medications.  medications are primarily used to treat the symptoms associated with learning disorders/ or autism.  medications are often used 'off label' for other things than they were marketed for. at this point zoe was having a hard time with anxiety, and with sticky thoughts, and with getting out of control as a result of both the anxiety and the sticky thoughts.  we'd tried a few other things before this- prozac, which was helping but not enough, and amantidine- which for her didn't help at all, and some ADHD drugs which didn't help either.  i should also note, that we have a very good child psychiatrist who we trust and adore who helped with all this and who we use in combination with lots of non-medical therapies.)

abilify is an anti-psychotic drug. a 'big time' psych med.  a drug with potentially serious side effects. a drug with stigma. i'd been avoiding it. waiting. until it was so bad- that we decided those weren't big enough reasons to hold back something that might help her.  i was going through thoughts in my head like, "who will ever hire her if she's on abilify?" as if that had any relevance to our lives at the time.  it was a time of sadness and desperation and some very close friends (who were both psychiatrists) enabled me to see this medication with out all it's labels, as something to consider.  something that might help. something that doesn't have to be forever.  they reminded me that we needed to make a move because she was suffering.  she was feeling so out of control that she was miserable.  so finally, we decided to try it.

it was like magic.  really.  i could have left medicine and become a drug rep for abilify.  she, with in a few weeks, calmed down, she wasn't agitated, she could focus better, she could learn.  i have to say that i was amazed.  i was thrilled and so was she.  we'd started it at the end of august and we had a great september. then around the beginning of october i noticed she kept doing some weird thing with her mouth- like a teeth grinding motion. i kept telling at her to stop that thing with her mouth.  after about 2 weeks it dawned on me that it was so obviously a side affect of the drug- tardive dyskinesia- one that can become permanent if the drug is not stopped right away. i felt terrible that i'd missed it and even worse that i'd been yelling at her to stop it.  i called the psychiatrist and he told me to stop the drug immediately and give her a drug that would counter act it.  so three days before halloween we stopped abilify and gave her cogentin.

i was crushed. i'd gone from wanting nothing to do with abilify, to being terrified of what life would be like again with out it.  i was also stressed that this odd new mouth motion would never go away- my daughter with the sequelae of her psych med-to add to her list of trouble.  unfortunately to make matters worse- she had an adverse reaction to the cogentin- she was awake- wide awake for three days and nights.  it was awful.  and that is where we were last halloween.  on day three of no sleep- still grinding her mouth- and pretty much out of it.  because we had two little boys who were very excited about halloween- and about being a pirate and a ghost- we pulled it together and when out trick or treating and to a halloween party.  zoe went as some sort of a fairy, she was running on fumes. she finally crashed at the party and fell asleep on the couch.  she has no memory of last halloween- i think the no sleep erased it all.

so this halloween was fantastic.  and even more fantastic as i look back over the year- and i remember where we've been.  her jaw motion symptoms did resolve completely after a few weeks.  we were able to find another medication that has worked even better- with no side effects. (a drug used to help alzheimers patients- talk about off label). this year we planned the costumes- we went to two parties- one with her best friend and lots of people- lots of kids- no meltdowns. and the only stickiness was on the kids hands from eating so much candy.

happy halloween!