instrument of peace

we don't have a washing machine.

for those of us who've grown up with machines replacing human tasks- we probably haven't spend a lot of time reflecting on: a) what it would be like without them, or b) which machines might be of more value than others.  now having lived with out several of the electric devices of modernity or intermittently the electricity to power them, i would like to give the number one rank of importance to....

the washing machine - scrubbing red mud out of childrens clothing by hand is seriously hard work (not that i've even been doing it - but poor florence has- and i see how hard it is)

we've been going into kampala several times a week and pricing washing machines.  comparative shopping.  what is the right size, the right price, the right style- top loader, front loader etc.  we've been gathering opinions and being, what we thought, were wise consumers.  but.  we live in east africa.  so sometimes you buy sugar even though you don't need it, because the market has been out for 2 weeks.  or, you take your shower in the middle of the day because the water is hot, or you buy the washing machine THAT day, even if you have to smoosh children together in the car to make room for it- because it might not be there next time, or, ever again.


we'd finally decided on the larger 13kg size, which only comes as a top loader, because it's biggest and we have three messy kids.  we found the right price and we found a day when mike could go get it without any kids in the car so transport would be easy.  i was excited.  but not as excited as florence.

when mike got to the store today- it was gone.  sold out.  and we had to laugh because we remembered that this is the way it goes sometimes, especially here.

last night i began reading a very little book that is full of very big ideas.  it's called 'instrument of thy peace' and it's written by the guy who wrote 'cry, the beloved country' (a book that i need to read about south africa).  this book slowly digests the prayer of st. francis of assisi.

'Lord, make me an instrument of Thy peace.  Where there is hatred, let me sow love; where there is injury, pardon; where there is doubt, faith; where there is despair, hope; where there is sadness, joy; where there is darkness, light.'

i am at the very beginning.  but i'm feeling it's relevance powerfully.

today, after a morning of home schooling, which went relatively well, jude and bryn came home from their new school with hungry mouths and whining voices.  especially jude, who, as best i can tell, is in a state of angst.  disequilibrium.  imbalance. and inner conflict- at least part of the time.  it must just suck to be six- well, part of the time. 
so i'm struggling to with this prayer.  i'm digesting it in bits.

"Lord, make me..." because i can't do it on my own.  i fail to be peaceful without surrender.  i can do it for a few hours- but then, i'm angry or annoyed about something, that is probably irrelevant, and my peace is gone.

"...an instrument.."  something with potential.  something whose purpose requires intervention to be reached- something inert that requires relationship.  something capable of making beauty if operated by the right hands.  if engaged by someone who has the knowledge and will to create the outcome.

"of Thy peace."  the peace God desires for everyone.  true, deep, sustaining peace.  unifying peace.  spreading, reaching, touching, active peace.  and the rest of the first part of this prayer speaks to the 'how' of this peace.  it asks for the ability to be active- to do- to sow, to scatter, to spread, to propagate-  love, pardon, faith, hope, joy, and light.

this resonates.  this calls to me.  this inspires and humbles me.  it's both a call to action and to being still.  it argues complacency- it challenges how we live.  it asks us to look for opportunities and to keep our eyes open.  and it shows the irrelevance of curtains and washing machines.   actually i think it shows the error in where i can easily spend my energy.

we are still 'settling in'.  we haven't yet started our work.  we are laying foundations and building relationships and finding our place in this new community and culture.  next week i start language class, and hopefully some clinical work.  and this, where i am now,  can be the most challenging of places for me to be that instrument of peace- for me to sow those things that bring the peace.  at home.  with my own family.  removed from the places where people are looking.

it can be easier to pardon and love and inspire hope while working in a poor community AIDS clinic than in my own living room with three whining kids.  it can be easier when surrounded by external things, when we are facing the world and the consequences of it's lack of peace.  when we need to choose our response to it.

so my inspiration needs to transform my living room.  this prayer needs to be in my heart, and lived out through my mouth and in my eyes and in the tone of my voice. 

Lord, make me an instrument of your peace. 

the snip snip

we are "done".
finally.  permanently.
there will be no more little kris and mikes.
our time of making babies is over, or will be on friday.
why this is a big deal follows........

when i was a little girl i wanted lots of babies. i had notebooks full of baby names.  my favorite show was 'eight is enough'.  i loved the idea of a big family- shared bedrooms and shared clothes.  piles of soccer cleats and flip flops beside the door,  and something always going on.  i just assumed i'd have at least four or five kids.

mike and i never talked about the specifics of having kids- like when or how many.  we both knew we really valued family and he'd mentioned something about seeing himself as a grandfather someday with a great white beard and hoards of children and grandchildren all around.  so - i figured we were pretty much on the same page.

when i turned 25 and we had been married for two years, i told mike i was ready to have a baby. but, he wasn't and really, neither was i.

when i was 26 i started medical school and sometime soon stopped birth control. we weren't "trying",  we were open. but when that seed had been planted (the one in my mind- that getting pregnant is an actual possibility) it was hard to not pay attention to my body and it's every rhythm.

a brief comment on "trying".  it can have many different faces depending on the season of life. sometimes 'trying' was "not trying".  sometimes it was taking temperatures and charting days and planning our sex life accordingly.  sometimes it was giving shots and having ultrasounds and procedures and we felt a huge separation between making love and making a baby.

but after about 18 months of 'paying attention' and not getting pregnant we went to the doctor who ran some tests and told me to eat lots of ice cream and start clomid.  i got pregnant with zoe that month.   i remember thinking- 'wow- that infertility thing isn't so bad!  you can fix it.'

when zoe was almost 2 i started internship and went off the pill.  i was really ready for baby number two.   but between the stress of it and being in the hospital every 4th night- it was not a good time to get pregnant.  i think my body was saying "girl- we can barely sustain you - let alone grow another life right now!"  so after my intern year, when several friends had 'accidentally' gotten pregnant while "not trying" i was frustrated, sad and went to the doctor again begging for some clomid.

but this time- i found that infertility can be really bad- and not so fixable.

and this is the point where i became obsessed.
really.  i ate, slept and breathed wanting to be pregnant.  i was desperate.  i was bitter and resentful of every pregnant woman i saw (even though i already had a child it almost didn't matter).   i should have bought stock in 'Answer' and 'First Response' because i took so many pregnancy tests.  i was an emotional roller coaster wreck depending on when in the month it was.  patient for a few days- timing it- controlling it- hopeful- hopeful- convinced it was good- taking a pregnancy test too early- waiting those painful 2 minutes- going blind trying to convince myself i'd seen 2 pink lines- looking at that damn stick at every angle- in every type of light- trying to believe it into being.  then the painful- agonizing truth.  tears and anger and isolation.  then it would begin again.

poor mike- poor all men out there in this situation- it's so hard! he tried to understand, to be hopeful and supportive, to reassure me that somehow we'd have another child.

i remember an absolute low point was mike telling me that his brothers wife, my lovely sister-in-law was pregnant with their third.  i literally, threw a baguette across the house and began to cry.

"but they will have had three in the time i'm still trying to get pregnant!  it's so unfair!"

and then began the "what's wrong with me?"  "i'm not a 'real' woman."  "why can't i conceive?" i read books to uncover the psychological issues that might be preventing me from bringing forth life.  i read about diet, and vitamins and exercise and meditation and tried desperately to try to not try- to let it go.  i read books about miracle babies- i signed up for adoption seminars.  i must have been really boring- and selfish- and slightly crazy.

who ever said that trying to have a baby is 'fun' (yes mom- that is you :) was dead wrong- those years were bad to the bone- bad on the marriage, the bedroom, the friendships- all of it.  dark, dark times.

finally, my last month of residency- i saw 2 pink lines!
but miscarried with in the week.

after a dark two weeks of crying and writing awful and depressing poetry, and drinking wine- we started our last round of "injections and IUI".  (lots of shots to make many many eggs, followed by a doctor squirting mikes sperm at the right time).  that month i had made so many eggs that the doctor didn't want to go through with the IUI.  i told her i was desperate- i didn't care how many babies i had- i just needed one more!  (like raising arizona - "Hi - Get me a baby!!!")  i told her if she didn't squirt his junk up there i would grab it, do it myself and still have sex all weekend long.

that's how i got jude.

when jude was one and i was 37 we began planning when we'd start the monkey business again for number three.  and at that point, i had let it go- i knew it was possible, but figured we'd go straight to IVF.  then God stepped in and with out intervention, with out drugs, with out 'trying'  - i realized i was a few days late and i saw the 2 pink lines!

i fell to my knees and began to cry and sing- and never doubted that this pregnancy was anything  but a blessed gift.

bryn.

so we had three.  but  i wanted 4 remember- at least.
i also knew that i was 38 and i couldn't handle the stress and expense of more fertility treatments.  i also had this new idea that maybe, just maybe it could happen again...... naturally.

and it did.  when i was 39.  again i was on my knees- crying- singing.  but, 8 weeks later - no heart beat. this confirmed things for us.
unfortunately they were different things.  mike realized he was 'done'.  and i realized how desperately i wanted a 4th.  how i couldn't imagine my uterus ending her last race like this- leaving on this bad note- finishing her days as a life giving muscle with a 'failed pregnancy'.

so the following year we didn't do anything about 'trying' or 'not trying'.  instead we tried to understand each other- we tried to respect each other.  but i have to admit- i somehow felt i'd been wronged- i'd been duped. in a cosmic way, and a little bit by mike.  and each month i'd go through a micro drama of hoping and buying more pregnancy tests and looking at them until i was cross-eyed- and then feeling a bit of a loss- but moving on.  it was nothing like those dark years.

i began to wonder if the rest of my life was going to feel like i was on some crazy lunar cycle- if every month i'd be disappointed- if i maybe really should buy some stock in e.p.t. 

then i went to ethiopia with lisa to meet her beautiful yoyo. and on that trip, two things happened.  i saw myself as someone other than a mother- as someone who might actually enjoy a stage of not being pregnant or nursing. and i realized that i love kids- even kids who didn't grow in my body and that i don't 'need' a baby.  i found that i was hanging out in the 'pre-school' section of the orphanage more than the baby section.  i found that there are children already here who need homes and that my body doesn't need to make anymore.

and i began to reach peace.  i began to - dare i say it- feel 'done' from a biological baby standpoint.  and i have to say, i never thought it would happen. mike never thought it would happen either.

so finally- and now that we're moving to africa- where i really don't want to be pregnant and delivering at 41- we are doing something about it- we are making a decision and we are DONE- in a permanent way.

permanent- lasting or enduring without change.

i still love the little babies- but not in that desperate, needy, jealous way. i still have such good memories of my big pregnant belly years.  but i don't wish they were back.

and i still think there might be a number 4 or even a number 5- and i can't wait to meet them.  i wonder what they're doing right now.

common threads

earlier this week mike asked me out on a date- i was so excited- but then i had to find a babysitter.  it didn't work.  i tried- harder than i've ever tried.  i even called friends of friends to use their babysitters- nothing- nada- nein.

so we did the next best thing- we loaded the kids in the car and went to IKEA to take advantage of 45 minutes of free childcare.  we figured we could sit on one of those couches in a fake living room and talk with out being interrupted.  but it was full!

so now we're home- contemplating the options.  but, we have options, which is such a privilege.

yesterday work was very hard, and long, but satisfying.  once again, i learned from other peoples years and other peoples experience.  it was a day that actually started the day before when i was called by the daughter of my patient with ALS.  he was doing worse- his wife is ill and can't care for him and we had to make some decisions about what to do, where to go.  i learned a lot about their baggage, about the family drama that had been going on for 20 years.  i learned about a different side of the story.  (there is always another side to our stories).  and again, i saw forgiveness.  reconciliation. love triumph.  things let go of.  choices made to do the right thing- even when it's hard.

i found myself wrapped up in trying to do the right thing for him- but in a limited system that argued with me at every step- why did we need to admit him to the hospital? why couldn't this be managed as an outpatient? on and on.  and the more resistance i got, the more insecure i became in my decision making, and the more worried i became that i would be judged by this person and that person.

when i drive to work on fridays, early morning, in the dark, streets deserted, street lamps lit- i pray for the patients that i will see that day- for wisdom to be able to help them- to be selfless- to be gentle.  yesterday i prayed especially that i would not be concerned about who thought what about me, but that i would only continue to be concerned about him- and what was right for him.  then i was at peace that i'd done the right thing. 

that morning, i spoke with a friend of mine, who told me that she's in a place of darkness and anxiety- a place where she's worried all the time- where she thinks about death and loss and it consumes her.  she is young and healthy and married to a young, health man.  but she fears the ends of these things- she fears never finding happiness.

and then i met new patient- a man with metastatic cancer who knows he's doing to die of this disease in the next few months.  he had eyes like my father, so i had a soft spot for him.  he was guarded and seemed irritated and wasn't sure he wanted to be sitting in my office- but he said i reminded him of someone he thought was pretty.

he was focusing on his palm pilot and poking away at at - i asked him what he was doing - he said "taking notes".  i was entered in to this- spelling my name out for him- it was part of his ability to keep some distance- and to keep his identity- to keep some control. so i was fine with it. but i wanted him to look me in the eye- because i could tell there was a lot in there- his mind was busy.

there were a lot of hard questions exchanged.  exactly how was he going to die? he wanted to know.  where did he want to be at the very end?  who had he told about his illness?  what did he want to do when he could no longer care for himself?  people have a much easier time talking about their burial plots then imaging not being able to care for themselves.  he wanted to die in his sleep or just drop dead.  what are you most afraid of? i asked.  "pain and being doped up and out of it"  and then he began to cry.

he had abandoned the palm pilot by now.  he told me about being in vietnam in a river, trapped under a jeep.  he began to ask himself what it would feel like to die, then he realized he was about to find out. he saw all black- then he saw red.  he remembers swimming toward the red- and then light- another troupe had come and flipped the jeep and he was rescued.  he said- he had no fear- he realized that he is not afraid to die.

"i was a professor.  i have two degrees in engineering from Georgia Tech- and a PhD.  i'm not an attractive man, i've never been good with the ladies, but i'm intelligent.  i can't bear to lose my mind.  i can't bear to lose my dignity."

i told him it was a gift that he wasn't afraid to die- many people don't feel that way. i told him that he didn't need to die in pain- that i could guarantee it - and that we would work together to maintain his dignity- even in the very end. he smiled.  he had needed to be known.  to be understood as a person who has lived- not as a person who is dying.

i spoke with my friend again- heard her baggage- her years of stories- and more about where she is now.  afraid of her pain now- the emotional can be way worse than the physical -afraid of death- although it's not near her. and so, so deeply afraid of herself- her depression- that her plight in life is deep sorrow.

and in my mind their stories chased each other- him living with cancer- her fearing getting it - him not afraid to die- her terrified- him afraid of pain- her in emotional pain. if you looked at them, they'd have nothing in common.

except that they're human- except that they're suffering.  it was a reminder again of the universality of it- and it made me so thankful for a healthy season.

i went up stairs to the inpatient unit where my patient with ALS was with his daughters.  he was getting what he'd needed- he was getting what i'd hoped for.  we had a family meeting with the other teams involved in his care- to explain what was happening and where we'd go from here.  after the meeting i stayed to talk with them.  he motioned for his white board to write and tell us something.  he wrote "Dr. Reid- miss her."  and started to cry.  i knew what he was referring to.  my moving to uganda.  i asked him if that was it and he nodded.  i reminded him it was a long way off.  i didn't say it, but far enough in the future that i think i'll miss him before he'll have a chance to miss me.  then his brother-in-law asked if he could pray.  so we all held hands- circling the bed- as he lifted up mr. G, myself and the family in prayer.  he asked for wisdom for me as his physician and for my plans and future. he asked for healing for mr. G, but if not, then for freedom from suffering- freedom from fear- for peace- for comfort. everyone cried- especially mr. G.

i drove home exhausted, but thankful that i'm not consumed.  i kept thinking about the other people i'd talked with in the day- my other patient, my friend- wishing they'd been there for that prayer of freedom.  wishing i could guarantee them both freedom from pain- all types-at the end and all the way through- that i could guarantee them peace.  aware again of my limitations- its easy to give medicine- it's harder to touch a soul- and cradling a spirit- is a divine intervention.

so i offered up a silent prayer- for divine intervention.

happy valentines

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

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

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

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

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

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

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

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

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

really?

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


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

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



i'll choose to embrace.
happy valentines day!

it ended up

i have to write the conclusion to the day- because it was pretty great.
i have to write about the view from the sky- the important stuff- that happens when not planned- when you're not asking for it, or even looking for it-when you might be feeling withered, because it's God's gift- it's grace.

after singing 'raindrops on roses' a few times- and starting to feel not so bad- i loaded zoe in the car to get her brother and get some things done- boring things- like the oil changed and the car's emissions test-things that are easy to avoid, especially when withered.  but i thought about endurance- and getting on with ones life- and off we went.

58$ and a couple of service station snack items later- we picked up the middle child- and headed off to 'our gym'.  our gym is 'sensations therafun'.  a place started by a schoolmate of zoe's dad- for kids with challenges- kids with autism-kids with sensory issues- kids who might make a scene at an indoor play area- and all are welcome.  there's a store with books and resources and sensory regulating toys- like weighted vests and fidgets.  there are special bikes and trikes, a climbing wall, trampolines, rope mazes to climb, spinning seats, monkey bars and an 'engine' room- a dark, calm spot with curtains made of strings of colored lights and a large bubble tube with changing lights and tactile things and bean bags- great for kids on the spectrum or people who've been smoking things. (interesting... possible insight).

anyway- my kids LOVE this place, all three of them- thus "our gym".

zoe almost always knows someone there, a kids she's done camp with, or school with, or met in an after school program.  she has an uncanny ability to remember faces and names- so i'm always surprised when no one looks familiar, and she knows their name and their parents name and where and when she met them.

today she found a girl (who i'll call lia) whom she'd last seen at the gym about a year ago.  a girl her age with autism.  zoe has become fascinated with autism.  she wants to know what it is, why a child has it, what's hard for them and how she can help.  she has asked me before if she has autism, or if it's similar to nonverbal learning disorder.  i try to reflect the question back to her- do you think it's similar?  what do you have in common with kids with autism?  what is different?  because i'm seriously curious about her take on it.  and, i don't have a lot of answers.

so this girl is there with her babysitter, a guy who's known her well for years, about 6 years.  they are about to leave- but zoe is really trying to play with her- to engage her- to get her to stop running away.  i'm busy with the boys, but keep seeing zoe chasing her around the gym- and the girl does look happy.  after a little while, i see them together on the trampoline and i go over and speak with the sitter.  i began to apologize for zoe's persistence.

no, he says.  it's great.  zoe told me that she can sense that lia wants to play. she knew that lia just needed some time and she was right.  look at them! he said.

i looked- they were smiling. zoe was calm, as was lia.  they finished jumping and ran some more- now lia following zoe.  they went into the engine room- zoe talking (of course) the whole time- asking her questions, waiting, and not bothered if lia didn't respond right away. she showed her the colored light strings and asked what color she liked best. lia didn't answer- so zoe filled in what her favorite was and they moved on. lia seemed fascinated- and she reached out and smoothed zoe's hair.  zoe led, quietly, peacefully, calmly. there was no anxiety- no nervous laughing, no forced jokes or awkward fill-in statements. zoe was absolutely relaxed- in her element- at her best.

there was very little reciprocal conversation, but there was reciprocal connection.  it was not parallel play- they were engaged- almost like children who don't speak the same language but can somehow communicate. and enjoy each other.

the sitter told me that they come every week. they usually come with a boy from lia's school to encourage socialization and communication.  he said, every week- they just ignore each other, they play separately and then go home.  he said he's never seen lia like this- that he wished he had a video camera so her parents could see her with zoe.

we turned around and they were running back to the trampoline -holding hands.

when we left- zoe asked if we could see her again soon.  so i asked her, what she like about playing with lia- why she wanted to see her and play with her again, and yet she doesn't feel that way about other kids- (other typical 11 year olds- i'm thinking).  she said she didn't know- but that she could understand her.  that they could read each others minds.  that maybe it's because she and lia have "similar problems".  i asked what she meant and she said "we both don't like loud noises and have trouble reading facial expressions."

i remembered my barbara inspired 30,000 foot goals for my kids:
      to feel they have inherent worth and value
      to feel loved and be able to give love
      to search for God's purpose for them
      to make good choices
      to know they have something to give

and i saw the whole day in a new light.  i saw hope.  i saw fruition. a saw a girl with a gift.  a girl with a purpose.

i left feeling so proud of her.  of her kindness and her ability to reach out. to love.  to make good choices. but also i left feeling really happy for her- that she felt like she had something valuable to give- and she was right.  and that she felt understood and connected with another girl her age.

but most of all, i felt happy that she had found a friend.

learning to choose

after all my angst, and all my self-pity, zoe did great yesterday.

i got the full report from my friend.  she sledded with the other girls for about an hour, and then they played inside.  there was no drama.  there was no stickiness.  at the end of the time two of the girls wanted to walk to the park and sled more- my friend knew this would be too far and too much for zo- so she told her she could stay and play at the house until i came to get her.  this could have/ often would have- been a perfect melt down opportunity. but she just said she was disappointed and went to play with lily's new harry potter lego kit.

when she came home- i asked her how her afternoon was.  i'm thinking "fabulous! i played with the girls, we had fun, i didn't get upset- it was great!".  and i got, "i'm really jealous that lily has a harry potter lego kit and i don't!" in a really whinny voice as she stomped her feet.

and this is where, once again, i talk before thinking.  i said, "really?!?  that is your take home of the day?  i heard you did great! and that you had fun! and that you weren't sticky- and all you have to say is that your jealous about some legos?"

i didn't stop to think that probably- she was absolutely exhausted because of how good her afternoon was, because it takes her so much energy to follow along- to not be anxious- to not be overwhelmed- to stay with the conversation- and to manage her body on really icy hills and sidewalks when her vestibular system sends her different messages, and when it's really cold and she's wet and her sensory system is on overdrive. that for her- it's running a social marathon.  that not melting down about being left behind when the other girls went on to the park- was huge for her- and took a lot of work.

she said, "well, i didn't tell lily i was jealous, i didn't get upset, i saved it until now."

therein lies the greatness. the progress.  the growth.

because it's not about being 'cured' of her ways of thinking- it's about learning how to respond to her thoughts and emotions- about when to reign it in, and when it's safe to let it out.  it's about knowing that even if you feel upset that you can't go to the park- that your portion of the playdate is over, and you channel it into being jealous about some legos; that it would be weird to say that out loud.  and she got that- she did it.

i was so proud of her.  i said "high five for that good choice!" she said "no, i'm not doing well right now".  i told her what a big deal it was that she is not victimized by her sticky thoughts.  that she is learning to choose how manage her feelings- when to share them, when not to- that home is safe- she can go to that place of letting it out with us- that we get her.

it still trips me up that she doesn't know how to take a compliment- that she minimizes her successes. and that she doesn't seem to feel the joy she should feel when she triumphs socially. it could be a sign of her oblivion. that she just doesn't really care that much.  that maybe she really does care more about legos than relationships.  but i don't think so.  i think it's because she's a perfectionist- in all ways.  and she knows even though she didn't get sticky or upset-it probably doesn't classify as social triumph. she knows she's different and she didn't feel connected with those girls.  or maybe she did, but she was disappointed in not going to the park with them and it was channeled into jealousy.  i don't know.

what i do know is that peace doesn't come from no sticky thoughts.  peace doesn't come from no meltdowns in public- although i often fool myself into thinking that.  peace comes from being OK with what happens- whatever it is. peace comes from the stillness. and just as she is learning to make choices about how to manage her behavior, i'm learning to make choices about being still.

today my celtic book of prayer reading was:  "Stillness must begin in the heart.  It is a decision, an active choice, to become still, to still your soul. Sometimes, it is as if there is a bunch of monkeys in the tree-which-is-your-mind; and you will not still them by shouting.  If you speak quietly and gently- peace will result."

my mind often feels full of monkeys. and i'm not great at speaking quietly nor gently.  i need to move into actively choosing stillness. practicing it.  and ironically- zoe will be my inspiration.  

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.

salt water

it's saturday, which means yesterday was friday, and i saw patients and taught fellows and went to meetings. one of my favorite patients came in- the one who is my age- the one who is dying, and is my age. she looked worse than i'd ever seen her- thin with a giant belly and legs filled with fluid, moving slowly with a new cane- and slightly yellow. i wanted to cry. there is something about caring for someone who is my age and dying that undoes me. i had to tell her it's time for hospice. i had to ask her where she wanted to be when she died. things we'd put off, needed answers. things she'd been thinking about, needed a voice. i hate when people ask me how they are going to die- what they are going to feel- what will happen to their bodies. it makes me feel like a phony. i can tell them what i've read- what i've seen- who knows what it really feels like. i asked her how she felt in her heart. she said OK- she's not scared- she doesn't want to be alone- or have pain. luckily she doesn't need to be alone or have pain. i hated saying goodbye because i won't see her for a month- or maybe never- so i hugged her a little longer and bit my lip. i'm leaving for uganda in 5 days- and will miss three fridays in a row. i'm afraid she won't be here when i get back. i'm afraid i'll miss her ending, and that hurts my heart.

it made my problems seem far smaller than they've seemed in a while.

we'd just got back from the beach at 10:30 the night before. the car trip- including a vomiting kid, a poop accident and a crying infant- and 9 hours in the car with 5 small children wasn't the hardest part. it had been a very up and down week for zoe- and thus the rest of us. it had been a week of me feeling really sorry for myself. of asking a lot of "why" and not saying enough "thank you". a week when i remember that as far as we've come, transitions remain hard for her, and that the beach which is full of sand, and noise and waves and salt and hot, bright sun, and unpredictable games to be played with other children, and sharp shells and birds- is asking a lot of a sensory overloaded kid. and i felt that pang of 'life will never be normal for us so why do we pretend'

so yesterday, i came home and ran- like forest gump -away and farther away- even though it was 100 degrees- and full humidity. i ran out my patient and friend's premature dying- i ran out my beach week with zoe in mild crisis mode- i ran out my inability to deal with my life in the put together way that i imagine i should. i ran until my water bottle was finished and i had nothing left and i couldn't cry because my body needed all the water and salt it had. i ran until i was thankful for the ability to run- for the gift of being able to care for sick people, and for the ocean and sand and salt and that i'm not overloaded by it. until i was thankful for zoe's ability to go into the waves sometimes, and also to know when to leave. and for the fact that life is a mystery and we don't know where it will really lead us next- but the path behind us helps prepare us. and the miracle that in all of it- we can find peace.