restlessness

maybe it's because zoe is about to turn 13. maybe it's because i've been listening to old springsteen, maybe it's because now when i look in the mirror i see sun spots and find myself pulling my hair into tight pigtails to remember when my face had no lines. maybe it's because social networking allows me to "be friends" with so many people from my past. maybe because i just lost a very important friend during those years. but lately, i've been thinking about the '80s, i've been thinking about what it was like to be a teenager.

what i remember is the incredible feeling of newness. the feeling of the world coming into color or focus or maybe 3-D. you grow (eventually) into a body that works like an adult, but you still want to sleep with a stuffed animal. you crave independence but don't love the responsibility that comes with it. you have all these intense emotions- love and jealousy and insecurity and a sense of being invincible. there are intense decisions to be made about friendship and time and commitment; and what to wear, and listen to, and pierce; and almost all of it revolves around understanding who you are, who you are not, and who you want to be.

there is a sense of urgency that adds to the drama. but it's really just the beginning of a long road with many paths and routes and chances to turn around. maybe it feels dramatic because it's new, or because the people ahead of you look so settled or established or decided that you assume you are on your way to an arrival of sorts.

but.

not true. thankfully not true.

those established older people? they still ask the same questions- who am i? who have i become? why am i here? where am i going?

but add in, did i do the right thing? make the right choices?

and, it's not just 'you' anymore. it's also how have my answers to those questions impacted my partner and my children.

that restlessness is part of being here. part of being alive is not being able to rest or be still. it's about the searching- the continued desire to know and be known- and to understand. we are made in the image of a God who searches, and who knows and desires to be known, but who embodies stillness, and permanence- not restless.

i know my incompleteness- i feel my waiting- my searching. i did when i was 16, and i still do now. it is a process- with many ways to try, and go, and be- thankfully, there are many chances. it's an unfolding, a continual discovery, an evolution. 

maybe the difference is, when you get older and have sun spots and wrinkles and wobbly bits, you accept the unsettled feeling. you enjoy the adventure, the process, the opening.  you begin to love and embrace the fact that you don't arrive. instead, you search for still moments in the chaos, for clarity, for a glimmer of the divine presence.

the song today

i spend a lot of time in the car, driving on potholed roads shared with trucks that are stacked too high, motorcycles with too many passengers and helmet-less drivers, cattle, wild dogs, and a lot of pedestrians.  i'm used to it, and i'm even comfortable with it, but it may be why i get so many migraines. 

today in the car, i was listening to praise music, which was miraculously keeping my boys quiet. i like to sing in the car and i like to pray in the car, so praise music is kind of both those things mixed together.  the first song was 'blessed be your name'- a song i used to cry through each time i heard it, a song that spoke to me, that i felt my soul singing 7 years ago when i was pregnant with jude, birthing him, nursing him, and waiting and waiting some more. 

Blessed be Your name
When the sun's shining down on me
When the world's 'all as it should be'
Blessed be Your name

most of my life i'd had sun shiny days.  i'd had years of things being as they should be. in these times, it is easy to love God. there is not a lot of questioning, not a lot of doubting, because things feel good and life is put together. in these times, of course God is love- what else would she be? 

Blessed be Your name
On the road marked with suffering
Though there's pain in the offering
Blessed be Your name

then i had zoe- what a blessing. even the hard parts, the delays, all the wondering in those early years- it was difficult but i wouldn't have called it suffering.  but the years of infertility before i had jude were marked with suffering.  i wrestled a lot with God. i questioned, i was not gracious, i cried all the time, i threw a baguette across the house when i found out my friend was pregnant.  i was angry and bitter. i couldn't say 'blessed be your name'- well at least not in my heart.

Every blessing You pour out
I'll turn back to praise
When the darkness closes in, Lord
Still I will say
Blessed be the name of the Lord
Blessed be your name
 
but suffering is relative, it's a continuous variable, it's not dichotomous.  it was finding out at my 20 week ultrasound that this kicking life that was finally growing inside me was marred with defect, was likely to not to have his mind, that is when the darkness closed in.   it was the suffocating news of utter tragedy.  it took me to the place of no return.  down in that darkness- i had to ask myself- i had to ask God- was he good- despite this? i had to ask myself if i could say 'blessed be your name'? if i could turn this into praise?  was my sorrow going to negate his goodness?  a goodness i'd always known- a goodness i could see around me everywhere- even in all the ugly of the world.  was i going to turn away because the ugly of the world was sitting too close?

i spent a lot of time holding my womb and weeping and lying on the floor and begging God to show up- to help me see the goodness again- to have hope- to keep me from dissolving into a pile of nothing- to keep me doing the simple task of breathing, which no longer seemed simple. 

and He did show up, quietly beside me on the floor, and out loud in my dreams.  He showed up with no words of a promised miracle- but of faithful non-abandonment.  He showed up simply to sit with me in the MRI scanner and spread peace.  He showed up in the open arms of our friends and family who embraced us, cried with us, brought food to us, prayed for us, and loved us. 

the sunday after i'd had that ultrasound, we went to church.  i heard the beginning of this song and i began to weep.  i knew in that moment i had to make a choice.  was i going to sing to my God in this darkness?  was i going to bless his name on this road marked with suffering?  in that moment my heart broke.  it broke open, and i knew in a way that was life changing that God loved me- and my pain wasn't going to change that.

You give and take away
You give and take away
My heart will choose to say
Lord, blessed be Your name

today as i sang that song out loud, i looked into the rear view mirror and saw my boy- that boy- that boy who's life that taught my heart to sing even when my eyes were stinging with tears- the one who unpeeled suffering- and whose existence revealed the nature of God- the one who loves us so deeply, so individually, so passionately that He breaks with us- suffers with us- abides with us in the dark parts.

Blessed Be Your Name
In the land that is plentiful
Where Your streams of abundance flow
Blessed be Your name

Blessed Be Your name
When I'm found in the desert place
Though I walk through the wilderness
Blessed Be Your name

there in the backseat- that blonde head, those deep steel blue eyes-  i watched him sing out those words- without knowing the poignancy they hold for me, they hold for him- my heart sang with his- in this land that is plentiful.  i sang knowing full well there will be more desert places- and darker spaces- and many more walks through much greater wilderness.  i sang knowing that things will be given, and taken away.  i sang knowing now what my heart will choose to say.

sunrise, sunset

today i drove the boys into school.

we wake up in the dark and leave really early and the only good thing about that is the sunrise.  but it's a very good thing. it's so beautiful.  a little gift for people who drag themselves up as day begins.
 
i was thinking in that early morning light about how amazing it is that each sunrise is different and how maybe that is one of the ways God reminds us that he's around, that he cares about the details, that he is paying attention.  because they don't all have to be different, but they are.

we wouldn't even have noticed if the world was made to have the same sunrise and sunset everyday- it would still be beautiful.  but, each day, the color, the light, the shape, the spread of the sky in transition, is new.  unique.  full of promise and surprise. as is each day.  there is newness. a beginning. 















it speaks to me. it tells me that God is an artist, and artists love to communicate, to share themselves, to make things that are beautiful or things that make us stop and think and see differently.

that is what the sunrise does if i'm awake to enjoy it.  i stop.  i think.  i see differently.  i appreciate life and love, i feel smaller than i did in the dark, but larger too. and the best part is that it happens twice a day!  this blessing of an open, vulnerable sky.  the arrival and the leaving of the sun, the heat and the light, the cool and the night.

it's not a mistake.  it's not random.
it's too powerful to be an accident. 
it is spectacular.
we are not alone.

where we are and where we will be

sometimes we go to dark places so we can see light differently. so we can notice that we need very little to see.  that a small candle goes very far.  that things are even prettier in that shadowy flickering light.  but none of us want to be in darkness. 

sometimes in dark spots we are in places to hear things differently too.  we listen more when sight is diminished.  we pay attention in a new way.  and somehow in these times, other people respond to their still small voices and bless us with a flame or a word.

yesterday my friend said that she wished i could just allow myself to let go of working for a while.  now that we have rose, and as we settle everyone in to school in the fall, and zoe being zoe.  she wanted to encourage me to be in this season, to accept it as a mothering place and not obsess about when i can get back to 'reach out' clinic and when i should start teaching, and how i can get the 'action for  the needy' clinic up and going in luweero. 


i heard her. 

kind of. 

but that is my stress reliever.  figuring out my work life stuff, distracts me for the day to day challenges of still having to guide zoe through washing her hair, or helping people to the potty. it gives me a mental 'out' - it puts an end in sight.



then i had last night with zoe and when i was debriefing on the phone with mike, i realized that i was making some big assumptions again, i was beginning to expand my expectations.  i was putting too many eggs in my ambrosoli basket.  i could see that part of why i was so irritated with zoe and her outburst during bedtime last night, was because it was threatening my plans.  it was waving that flag "don't forget i have challenges!"  it was calling me to remember that learning differences don't go away when people stop homeschooling.  that her getting into school for next year is not any sort of a guarantee that she'll stay in school next year. i could see that i was mentally beginning to go about my life as if suddenly things were 'normal'.  but they are not normal and they won't ever be normal- at least not what i thought normal would be.


in the conversation i heard myself blurt out,  "but what if next year, i'm back at work full-time and she can't handle school?  what if the rug gets pulled out from under us again?  how am i supposed to get on with my life, with zoe?"


oops.


but my life is with zoe.  intricately woven with zoe- on the days that i like it, and the days when i don't.  this fact will not change no matter what i think or try or where school happens.  this is my life. it will be my life probably forever.


and in that dark space, i thought about what my friend said about being in this season.  and i realized that this season is much longer than having a 2 or 3 year old again.  this season is having a child with special needs.  in fact this isn't just a season- this is my new normal.


today i had daydreams about being back on the wards of moffit long hospital in san francisco.  the weird thing was they were good day dreams.  i have never missed residency, but i was thinking fondly about early morning rounds and reading ekgs and making plans, and discussing the case with the team, and speaking with the patient and family.  i was remembering and longing for feeling in control of my life- or someone elses life- or really anything- because life with zoe can feel so out of my control.


i pulled out the book that i'd read years ago- dana buchman's 'a special education'.  it's a memoir about a self-proclaimed type A, new york fashion designer with a daughter who has zoe-esque learning differences.  it was time to re-read it. again.  it was time to remember that other people have been here and survived, even thrived.  that when her daughter was 9 and 10, 11, and 12 dana buchman had similar fears and doubts and moments of utter inability to understand the mind of her child.


then i opened an email from my dad with an attached short article by joni eareckson tada- a quadriplegic and of the big advocates for people and families of people with special needs.  he wrote that it might be helpful as i raise zoe.  he listened to that still small voice.  he took the time to send it.  he was right. 


joni wrote about how God uses people who are weak, or suffering, or afflicted, to accomplish great things- to move mountains- to be leaders.  the bible is full of examples- the old and new testaments.  God picks people who stutter to give speeches, shepherds to become kings, an old man and woman to birth a nation.  Jesus picks people in the low brow professions to be in his posse, people with shady pasts to hang out with him.  but we see through the glass dimly.  we don't see that most people actually don't have it completely together.  that we are all broken.  that God turns broken into even better than new. 

i have not idea what zoe will do, or really what i, with my challenges, will do, or when i will do them.  we are part of a giant puzzle trying to do our small piece to make things fit together.  we get so mad when they don't fit.  sometimes we need to wait.  sometimes longer than we wanted. sometimes we feel like we are stuck in that movie 'ground hog day'- reliving the same frustrations again, and again, but we're not.  we are slowly learning, growing, moving, being shaped and pushed into a better version- into more whole than before.  even zoe.  even me.


so i sit with those two bits of light given by a friend and a father. 
'be in your life.'
'know that God loves broken- uses broken- enables the differently-abled."


words of hope.  light in darkness.
accept it. embrace your life.
hold it- because it is full.  life is full.  and there is goodness.

thoughts in solitude

there are seasons. it is the season of lent.  it is the season of the beginning rains again. 
today is a beautiful windy sunday morning - muted sunlight- making me think about solitude.
i'm kind of bad at solitude.  i forget to build it into my day, and then slowly slowly i find myself demanding it at inopportune times- like when my children are wanting dinner :). 
so i'm trying to build in a good walk up the hill so i can hear no one but the stillness of God.

yesterday i walked. 

i'm always interested in what i hear- and i always here something.  all the scramble of my brain arranges itself as i climb up that road to the top where i can see far off and feel small again.  yesterday a lot of what was inside me was about zoe, because on friday she was 'off'.  and this happens,  thankfully not as frequently as it used to, but it happens.  it's the scramble of her brain but with out a cover, with out the filter that most people develop in early childhood.  when she is 'off' she can't respond appropriately to normal things- she can't internally regulate so she does or says whatever she thinks will help her to feel better, calmer, more put back together. it's hard for me to take this in stride. it's hard for me to understand her.  it's hard to not be sad for her, and for me and our family.  it's hard to not be tired by it- to not give up- to not feel stuck.

on the walk i started to think about understanding her- because i want to- i want to so badly. 

the way down the hill was so beautiful and i was thankful.  there were amazing bright orange flowers climbing on vines- and behind them the hills in the distance.  sight is my dominant sense, and there is so much to see, but i began to listen too.   i thought of the woman i'd met in kenya who was blind.  i remembered one day i was out for a walk and i saw her with a group of people, they were bird watching.  she had that beautiful smile and her cane and as we walked by she say, "it's amazing all the birds i can hear!" 

so i closed my eyes and walked.  immediately i could hear life differently. immediately i could feel it differently too.  the wind became alive in my ears and on my arms- loud and powerful, but with my eyes open, i hadn't noticed.  i could hear my footsteps crunching on the pebbles,  the sun on my shoulders was warmer, the piece of hair that fell on my arm danced.  i couldn't see- but the rest of my senses jumped to life and there was a richness, a focus.  i thought about the gifts that can come with loss.

when i opened my eyes, i thought about zoe.  her sensory system is not missing a piece but on overdrive.  she doesn't have the hyper-acuity, she has the opposite- the confusion, the lack of focus, the loss that comes from too much sensory input.  all the sounds, all the sensations are exaggerated. maybe that is why her visual system seems weak- maybe it shuts down to try to manage the rest.  i understood a little bit better- a small piece of the puzzle- and i was thankful for that.  so as i walked on down the hill i prayed for her- mostly in the form of, "please help her- because i don't know how to" and "please help me to know how to". 

when i got home this lovely prayer was waiting in my inbox,  sent by my dear friend erin, written by that wise old monk, thomas merton.

MY LORD GOD, I have no idea where I am going. 
I do not see the road ahead of me. 
I cannot know for certain where it will end. 
Nor do I really know myself, and the fact that I think I am following your will does not mean that I am actually doing so. 

But I believe that the desire to please you, does in fact please you. 
And I hope I have that desire in all that I am doing. 
I hope that I will never do anything apart from that desire. 
And I know that if I do this you will lead me by the right road, though I may know nothing about it. 

Therefore I will trust you always, though I may seem to be lost and in the shadow of death. 
I will not fear, for you are ever with me, and you will never leave me to face my perils alone.

- Thomas Merton, "Thoughts in Solitude"

we often feel lost- wandering- wondering about endings and new beginnings and purpose.  wondering who we even are and why, and what is right, and what to do.  even monks.  even those guys who spend their whole life in solitude. 

so i felt better, and i was reminded, again, it's about trust, not fear.  that blind or over-sensed or struggling to find solitude- we are not left, we are not alone.  we are guided, we are held.

 

what's really going on here

so this is day 2 of the conference- which is 10 days long. and i'm doing what i do best- or did best in college - playing hooky.  actually, it's not really playing hooky- it's a well planned tactic about maximal absorption.  something i became aware of too late in life- but i hold on to tightly. i have a limited attention span.  i can sit still and listen, or read, and absorb information for about 3 hours and then i'm done.  i might after a very long break be able to take in a little more, but not much, and usually not at all.  in fact, after 3 and a half hours- i will actually start forgetting what i've learned- which explains a lot of my trouble in the first 2 years of medical school.  anyway- this is my break- and fortunately this afternoon i'm giving the talk so i don't need to enter any new information. 

i came to this conference for several reasons: to
a) get CME credit
b) see my dad
c) return to kenya
d) actually learn something about practicing medicine in africa
e) gain some discernment about what i'm supposed to DO exactly in africa as a doctor
f) escape listening to whining and doing dishes for 10 days.

my biggest goal was (e)- discernment. i hoped that by listening to people who have been doctors in africa for years and years- i'd sort out how i can make the biggest impact- what i can do that will really help - how i can use my gifts better to serve people- what will make me happy- have job satisfaction and not burn out.

but.
i'm beginning to see how completely inside out that is.  because what i'm learning isn't about DOing- it's about BEing.  i'm learning that it isn't about MY impact, or My help, or My gifts, or My happiness.  at.  all. 

i'm bad at beating around the bush- so here is what's really going on- and yes- it's about God.  in fact- it's all about God and only about God.  what i'm learning, or being reminded of, is how off track i am.  these two days have been about refocusing the lens with which i see the world and myself and the relationship between me and the world.  i'll try to explain-  you might want to listen, just in case you do the same things.

in addition to playing hooky, i'm also really good at worrying, obsessing, exaggerating, stressing and sometimes, panicking.  i can go from zero to eleven - quickly.  the thing is, most of those verbs ending in  'ing' are all about me- about me failing.  failing as a parent and destroying my children, failing as a doctor and causing blindness or death, failing as a missionary doctor and disappointing my senders- people who have sacrificed for me to be here to help people.  what do all these things have in common?  it all boils down to fear and self focus- neither of which are good- they're not enjoyable nor are they healthy, nor are they beneficial.  fear and self focus actually get in the way of being effective and happy. 

my new years resolution was/ is lowering the expectations- and that means of even myself. many of us are raised in a culture that asks us to aim high- to reach for more- to strive- to push- to achieve.  these things are good- really- they are.  but.  here are some things i'm learning or remembering, they are simple, but true.

God loves everybody.  God loves everybody the same.  even if they mess up and never meet their expectations or goals.  even if they can't sit still, or forget information after 4 hours.  even if they are really poor, or really rich, or gay, or straight and judging people who aren't.  even people who believe differently, even if they do the things we hate, even if they don't say sorry.  God loves everybody. the. same.  wow.  that changes things. 

God also cares deeply about everybody.  Her heart breaks for all the sadness that we have, for the loneliness, for the meanness and the selfishness and the fear. and i don't know why bad things happen.  i don't know why there is pain, and sickness, and abuse and violence.  but i know that God feels that sorrow even more than we do.

and thankfully, God chooses messes- well, people who are messes.  i think because when we are broken- badly broken- we are no longer trying to DO everything ourselves- or FIX things.  when we are broken, we are humbled- we are soft and mushy and open and not so sure of ourselves anymore.  when you're all stripped down- or when you lose everything, or the person who means the most to you; or the way you thought your life would be isn't the way it is, then you begin to let go- to begin again.  then you are open.  then it becomes not about you- and you sometimes find you're not even afraid anymore and that is when the soil is fertile.  God reaches down, there is grace.  out of that mess can come pure beauty.  out of that broken comes truth, honesty, transparency, vulnerability- and out of those things is connection.  and connection is the heart of God.

what i'm learning from these doctors who have been doing medicine in africa for years and years- is that i'm not that special, or unique, that it's not about me, it's about God.  a great God who loves me and the world and wants me to know Her, to be patient and gentle with Her creation, and that includes even me.   i'm learning that i do know how to think about medicine and sickness - i do know what to do, or where to go if i don't- so i don't need to fear these things.  i don't need to worry and obsess about my effectiveness as a parent or a doctor or a volunteer.  i need to let go of the 'ings' and embrace the 'tions'- connection, redemption, and perhaps most importantly transformation.  i need to stay soft and open and humble and even a bit broken.  then the world might begin to shake a little- then a difference might be made.


this week is about, again, stillness and grace. 

"man is born broken, he lives by mending, the Grace of God is the glue.' - eugene o'neill

full moon

so i'm here-in kenya- under a spectacular full moon.  it's full in  a huge way- full and promising and close and encouraging.  it's lighting up the clouds in the sky like they are the platform holding her up.  her perfect roundness and glow.  so night isn't so so dark and scary.  it's like the night has a secret- that it's opening up.

it's funny that to be here feels foreign to me- even though i live so close, even though it's east africa, even though there is red dirt and dry air and beautiful flowering trees and more white butterflies than i've ever seen- -it's not uganda- it's different. 

this conference is for medical missionaries from all over the world (but i think mostly africa) to come and learn how to better care for the people they work with- how to improve techniques, how to practice evidence based medicine, to learn the updates from the west, to learn how to adapt them to resource poor places.  it's also a place to connect with other people who have decided to pluck up their normal lives and live somewhere else and not get paid and serve the poor, because that is what we should do.  well, taking care of sick people in the developing world is only one  way to this- it just happens to be the way i feel i'm supposed to do this. but we should all care for each other, gently.  we should love each other kindly, we should treat each other with justice and mercy and grace.  

so i'm here for a while.  away from home and alone but in community.  i'm in a place of wondering and waiting. of contemplation and curiosity- because this life is full of surprises- and listening to the still small voice of God is powerful and so full of goodness.  our first six months have been full of settling in - adjusting kids, building community, exploring possibilities (and there are many) and beginning work in some areas.  sometimes as we look around we get confused.  we wonder what we're doing, or why, or how we'll do it.  we get overwhelmed.  we feel small facing big problems.  we feel young facing old troubles.  we feel simple surrounded by complex- or we feel complex surrounded by simple.  and we can spin and spin and fret and worry and wonder and waste our energy.

but.  then there is that still small voice calling us to be still. reminding us that we are small- but God isn't.  reminding us that the suffering around us isn't with in our capacity to fix or even to bear, but it's with in His capacity. that what we do- we do with God's grace.  we are asked to be willing, we are asked to try, we are asked to lean, we are asked to trust Him and allow that to be enough.

what is more important than getting an old lady to an eye specialist, is to care for her gently.  what's more important than our agenda of getting a building built with in a certain amount of time, is to treat people fairly, and with forgiveness if it's needed, and always with love.  always with grace.  always with kindness.

and those things we can all do- all of us, under this great sheltering night sky- all of us- as we share this same moon.

the whisper of the world around me

today we did what i would call 'communal home church'.  basically the expat kids came together at someones house to have a little kids sunday school as a change of pace from the large ugandan service/ and sunday school that we usually go to.  i was excited.  i figured, here it will be good.  it will be quieter, organized, smaller, more manageable especially for the one child who is so easily overwhelmed.  so i sat with zoe in a comfortable large leather chair ready to see how this new atmosphere would answer our sunday school problems.  but.  it didn't work that way.

why i'm continually surprised by this?

she interrupted.  she wanted to tell the teacher random things about how to observe butterflies.  she wanted to interject at every point when audience participation was sought, but there were 10 other kids. she wanted to already know the answers to every question asked.  she became mad.  she told me she needed to leave, as she fiddled with her 'engine helper' and i stroked her arm to help her calm.  and this went on for the entire hour.

i was not calm.  i was everything else.  i didn't want to stroke her arm, i wanted to pinch her really hard because it felt like someone was pinching me inside. i was sad and angry and a little embarrassed, and hopeless, and scared. 

we were learning about david. the great man of the old testament, the man after Gods own heart.  the man who was a shepherd, and musician, and poet.  the man who killed the giant with his slingshot, who became king.  the man who messed up a lot, who slept with other peoples wives, and even killed their husbands, a man who knew he was wrong, who was deeply sorry, who asked for forgiveness and was forgiven by the God he loved passionately.  a man who felt sad and  mad and ashamed and scared. 

so i muttered a little prayer of 'help' in my heart.  help me because i'm scared.  i'm so scared.  i'm scared that this is her life life.  that these obsessive, sticky thoughts will prevent her from living happily, from ever learning anything, from have healthy relationships, from growing, from connecting.  i began having visions of a full grown zoe who can't leave her house, which is filthy and filled with disney toys and littlest petshop pets, and probably several animals that have been rescued but not treated for fleas. because i'm scared that she will be one of those people in the world who live on the fringe, that talk to themselves and are avoided, that are so overwhelmed by life that they shut down. and i'm so scared that i just don't have the tools to help her process the overwhelm, that instead i become eaten by it too. 

it's hard when you see parts of your brokenness through the eyes of other people.  it's hard when you're emotional underwear is sticking out for all to see. it's hard when you feel guilty about your fears, that they are symbols of giving up, of a lack of faith in her.  so i try to step back.  to not just see what's in front of me, but place it in the big context.  when you analyze data you don't fall to bits over one data point, you wait, you trust that when all the points are gathered, the trends will be clear and there will be some outliers.  but that requires emotional maturity which in these moments, i gravely lack.  in these moments i only see a cat-lady who can't balance her check book, or get the temperature right for her shower, or peel a carrot, or unscrew a juice lid. and i feel the need to panic. 

after it was over, and i was walking down the banana plant path, i had another little talk with God, but less desperate and more annoyed. 
'really God?  i thought we were kind of done with these days? these sticky thoughts?  these intrusive thoughts that disrupted her life, my life, and the entire class.'  that was it.  i didn't have much more.  

and there was nothing.  just the sun hot and shinning down, just the soft wiggle of the tree branches in the wind, just the voice of the birds, just the white butterflies leading us home.  God in the stillness.  God in the cave with david.  God in the big leather chair with me and zoe.  God big enough to hear my 'help' and my annoyance. God in the whisper of the world around me. yet, that is somehow enough. 

12 stones

i woke up early to get ready for my first day back at work, made the coffee and the boys breakfast, and got on the computer to check in with the other side of the world-going to sleep as i'm waking up. there was a post from my friend as she was going off to bed -about the irony of what she is facing today- the likely complete cure of cancer with her bilateral mastectomy, but the acute reality of cancer in a new and for the first time, visible way. and she admitted to feeling scared and not too funny- although i still laughed as i read her post and was blown away by her ability to scarf down an piece of apple pie the night before surgery- i'm the queen of the nervous stomach.

mike and i sat down for our time in the morning before the crazy begins, to read the bible and pray together.  i was ready in a feisty sort of way.  i wanted to jump right into the praying part because i had some things to say- but i thought maybe i should listen to God before i started speaking. the first reading was a psalm about God opening the red sea for the israelites despite their rebellion.   the next was in joshua- the story of the israelites crossing the jordan river- how God parted the waters for them again, and told them to take 12 stones from the middle of the river and set them up as a reminder that the hand of the Lord is powerful.  the last reading was from mark, the story of Jesus healing the boy with convulsions.  the father asks, 'if you can do anything for us, please do it.' and Jesus replies, 'IF? everything is possible for him who believes' and the father says, 'i believe, help me overcome my unbelief'.

today these reading were for us.  it's not a coincidence.  it was a moment of esctacy- the divine entering the regular.  God showing up on a tuesday morning.  i heard:
-i care and provide, even if you're ignoring me
-i make big things happen- the impossible, becomes possible
-have faith, and i'm safe enough that you can even ask me to help you believe

so i prayed.
"okay God.  you ask us to remember.  to carry the 12 stones.  you fill the old and new testament with examples of your power.  i know your power.  you parted a giant body of water, twice, to protect your people. you healed people right in front of an audience, you have provided friends for my girl in africa.  i know you can do anything - so i'm asking you to completely heal my three friends with cancer.  i know you don't always do it, but we are asking with full belief that you are able. " (but i was more specific and i begged more and my voice cracked and i might have even sounded a little bit mad by accident).

then i got in the shower and bawled my eyes out.  i mean the full on ugly cry.  and i washed and i cried and i prayed some more, because i remember being the child of a woman with breast cancer and feeling the tension of needing to care for her and desperately wanting her to care for me, and fearing that what if the unthinkable happened and she someday disappeared. so i prayed for her kids and her husband and her parents and her surgeons and for her safety and her peace and freedom from anxiety. and i thought about the last scene in the movie 'it's a wonderful life', how i always cry through it. tragedy happens and everyone shows up, and george sees how loved he is, how valued. i thought about all of our george bailey moments, how people respond to the nudgings, how we become the hands of God for each other, we become the answers to some of the prayers.  we help bring the peace and the strength. i dried off, and dried my tears.

then as i packed my bag to head out the door, i heard bryn and jude on the porch.  bryn was holding a fake candle from the american girl set, and sitting still with his eyes closed so i leaned in to hear with out being seen.
"dear God, i thank you for this day, i pray that you will protect us  from angry monkeys and black mambas. amen."
it was so sweet to see that childs faith. to see and hear that he knows God shows up. because yesterday we had some crazy monkeys in our yard and a baby black mamba (fo' reals).

and i kept thinking about those 12 stones taken from the middle of the jordan river- 12, one for each tribe.  stones carried on shoulders across a dried river bed where the water had been peeled away.  stones set up as a memorial on the other side.  and then the river flooded over.  stones that were carried with them as they camped- set up as a reminder of God's strength- because he knows we forget. we get busy.  things are going well. we aren't standing in front of waters that need parting. 

i love that the stones were Gods idea.  his way of saying, 'trust me, you'll forget'.  his first commission of an art installation.  His love of the symbol- not just any stones, the stones from the middle of the jordan- not just any number, twelve- the fact that they were heavy and carried far and set up where the people were.

i wonder what are my stones? the things that remind me of when the rivers were parted for me.  symbols of the power and the grace.  how quickly i can forget. 

the whisper and the ordinary

dry and crisp. there is bright light everywhere.  it's hot and the sky is wide open.  it feels like early summer- that perfect awakening feeling after a long season of inside.  nothing about this day has the closure of december.  nothing about it has the feeling of Christmas.  i think i need to get used to it.  the difference.  mabye i need to need it less.  rely less on the external things to move me into a place of reflection and preparation.

in some ways this makes sense. i mean with out the planning and the pomp and circumstance. because 2011 years ago the divine crashed into creation with minimal warning.  the entrance of a king in an unsuspecting stable.  that first Christmas wasn't about acute preparation. there had been promises, there had been long lengths of waiting, there had been expectations.  and i love the surprise of it.  i love that God ruffles feathers.  that He does it his own way.  everyone expected a king- and all that went with that but when the sacred entered- He entered into the ordinary, that's the way our God rolls.  it's real, real.  He came only announced to a few- a few people who didn't matter much to the world- he came to poor people- he came to the ordinary.

one of my favorite parts in the old testament is about God appearing to Elijah.
'Then a great and powerful wind tore the mountain apart and shattered the rocks before the Lord, but the Lord was not in the wind.  After the wind, there was an earthquake, but the Lord was not in the earthquake.  After the earthquake came a fire, but the Lord was not in the fire.  And after the fire came a gentle whisper. When Elijah heard it, he pulled his cloak over his face and went out and stood at the mouth of the cave.'  God was in the whisper.  so why are we so surprised that Jesus showed up in a barn?  and why are we so surprised that we don't 'feel' God more dramatically?  He's in the whispers, He's in the barn.  He's in the ordinary.

if you haven't read anything by anne lamott then you need too.  i love her blunt honesty and find her path to God real, real (read 'traveling mercies').  today i was re-reading a part of her book "grace (eventually)".

"This was the day I pecked a hole out of the cocoon and saw the sky of ingredients that would constitute my spiritual path.  This was the day I knew the ingredients of the spiritual that would serve me- love, poetry, prayer, meditation, community. I knew that sex could be as sacred as taking care of the poor.  I knew that no one comes holier than anyone else, that nowhere is better than anywhere else. I knew that the resurrection of the mind was possible.  I knew that no matter how absurd and ironic it was, acknowledging death and the finite was what gave you life and presence.  You might as well make it good. Nature, family, children, cadavers, birth, rivers in which we pee and bathe, splash and flirt and float memorial candles- in these you would find holiness."

because Jesus entered in.  he came from his perfect culture into ours.  he wore our 'traditional clothes' and spoke our language and embraced more than our ways, He embraced us- all of us- more importantly, each of us.  He was foreign born too. He didn't just observe, he engaged fully.  He didn't just live next to it, He lived it.  sometimes i think of his hands and how splintered they must have been as a carpenter.  i imagine them tough and calloused and strong and having slivers of wood just under the skin.  i imagine that after he finished building something with his dad, he must have carved other things.  i imagine that perhaps he carved a bird on the inside of a chair or the underside of a table-even if no one would notice, because he couldn't help himself, because He is a creator- the ultimate artist. and i wonder what it felt like for him to be so contained by skin? so limited by his hands when inside was the spirit of the universe- when before He just spoke it, thought it, and it was. 

and i wonder what He thinks now as he looks at our remembering.
if he sees all our preparations and ritual and attempts at creating the atmosphere of Christmas time, and shakes his head and sighs and thinks- they just don't get it. to me, i know he's saying these things: you don't need any of it to be ready for me- you don't need to feel something special at Christmas time.  i'm not just here in december, and then reappear at easter.  i'm not in the earthquake i'm in the whisper.  i'm in the relief sculpture under the table in the corner where people stick their gum.  i'm in the sunset you were too busy to see.  i'm in the guy who looks drunk on the street corner asking for money who you walked past.  i'm in that hot hot sun and the crisp sky, not just the snow and fir trees.  i entered all of it. for you.  so i could sit with you- when you're so very happy, and when you're so very sick. so i could sit with you when you are full of me and even when you've forgotten me. that's what you're celebrating.  

i'm thinking of these things today and feeling so thankful, in a hot and foreign land at Christmas time. 

mothers day love

being a mom is the greatest thing i've ever done.  it's humbling and funny and full of mystery and surprise and it teaches you about love in a deep way, deeper than you can maybe ever know otherwise.  but it's also like the army- it's the toughest job you'll ever love.  and i do and it is. 

it was a great day.  it started with mike bring me coffee and a letter- a mothers day letter.  it wasn't a card, it was a letter- plain white paper folded in half the long way with a little sketch of a woman and a baby at the end.  the best gift i can get- his words.  then we went to church. 

OK- so it wasn't all that smooth.  we had to clean the house because the people who are buying it wanted to bring their parents over to see it.  zoe needed to clean up some mess in the playroom and while doing it decided to spit or drool or some combination, on the rug.  i only know this because she came upstairs to where i was getting out of the shower and announced that she'd done something that i wouldn't want to hear about it.  but i knew i was about to hear about it anyway.

i know it's not that big of a deal- but it just felt like it was.  it's mothers day.  can't you be perfect? can't you think before you do something that a five year-old would do?  can you control impulses- just a little? just for one day?

when we got to church i had that look- that no-poker-face i'm exhausted by the essence of my life- heavy look.  i knew it because people were asking me how i was doing instead of just saying 'happy mothers day!'.  then the kids attacked each other during the 15 minutes they sit with us in the service before sunday school.  again, it's mothers day! didn't you people get the memo?  can't you hold it together for 15 minutes!  the heavy face got a little heavier but my voice sang out- trying to find that place of stillness, that place of letting it go.  i was lost in that land of: is it them? or are my expectations too high? 

by the end of the service, after much song and prayer and communion, i was better- lighter- smiling- hopeful.  we came home and i went for a run.  maybe the reason i can't run and talk with other people, is that it's my time with God.  it's my time to let him or her know how i think things are going.  sometimes that takes the form of me being really mad and sometimes it's me being really joyful and thankful and sometimes it's me being really sad.  today it was me feeling really confused.  in some ways things with zoe have become worlds better- she is engaged in a real way- she is there and she is trying.  but then there is the spitting, or the wiggly voice, or some massive regression that sends me spinning off in my own orbit.

as i ran the last mile i kept saying in my mind- i just don't know what to do?   i just don't know how to parent her?  where is the instruction manual?  and quietly, what crept back in a soft answer form was, "love".

'it can't be that easy.  i'm talking about specifics, i'm talking about certain situations.  i'm talking about spit and wiggly voices!'

'love her.  respond to her in love.  remember always that you love her.  that I love her.'

'who am i kidding- that's actually not that easy.  yeah, it's hard! it's really hard to love her in those moments!  how can i ever do that?  i fail at that all the time.  i get so mad.  i let it all out- all that yuck- that is not love.  how?  how will i ever get this right?'

'lean on me. you are not alone.'

i ran on- a little faster.  i thought about the tattoo again.  i thought that i don't need the cherry blossom on my shoulder, i need the word "LOVE" tattooed on my hand or my wrist or somewhere i can see it all the time.  i'm a slow learner- i need reminders- i need LOVE  tattooed on my heart.

then we went with the willis family, back to a place that we went to last year.   back to do that  chattahoochee hike we did almost exactly a year ago with the willis family.  the hike that was a complete disaster- the hike that was one of the worst experiences i've had with zoe.  last year she was in a place of tremendous stickiness and disconnect and i was in a place of darkness.  (see post- http://bestillandknowkw.blogspot.com/2010/04/unglued.html)  given this morning- i was worried.  to make it even more of a set up for disaster, we'd decided that we'd cross part of the chattahoochee and eat lunch on some large flat river rocks.  again, for neuro-typical kids, this is nothing but fantastic, but for zoe- who is neuro-challenged, balance-challenged, coordination and sensory challenged- this is a big feat. 

let's just say.... i was very impressed, and relieved.  she had a few moments, but they were few, and they were handled well.  she bounced back.  she had fun.  she crossed the river and walked all over the place on those slidey, slippery rocks. 

and i remembered back to last year.  i remembered where we'd been, and i felt this incredible feeling of relief, and thanks, and hope.  i watched her walking around in that cold river and i felt hopeful.  and i remembered my run, just a few hours before.  i remembered the word i was given. LOVE.

so it's in the perseverance, it's in all the little additive moments.  like my mom always said, 'raising children is like putting pennies in the bank'.  bit by bit you get there.  this day was Gods gift to me- i got a snap shot of the 30,000 foot view.  and it's all in the love.

oh help me to live in that LOVE.

happy easter!

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

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

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

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

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

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

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

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

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

don't close your eyes

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

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

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

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

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

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

one year

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

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

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

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

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

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

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

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

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

begin again

beginning is the hardest part.  it's hard because of inertia.  force is needed to overcome the lack of motion, of inactivity . but i think it's hard because it's also when we have the most optimism and energy- so we're fooled into thinking we should be successful- or it should be easy.  but it's usually not.  beginning a book- getting into it, knowing the characters, the place, caring about them- it takes time.  beginning a conversation- maybe that's why people talk about the weather- universal context- finding common ground.

today was the beginning of the second semester of homeschooling.  it was also a preview of homeschooling all three kids- at very different ages and stages- which may be in the future in uganda.  it was a good idea to let go of all expectations- OK most expectations.  so i had a pretty good day- meaning no one suffered irreconcilable damages to body or spirit- and people learned things- or at least practiced what they already knew.

beginnings of new days are always good for me- in fact it's my best time- because i am a morning person.  i get up with this absurd idea that i can do pretty much anything. i get up with energy and enthusiasm- in great need of coffee, but ready for the world to bring it.  but all that optimism and positivity must fill the tank around 5 am- because if i'm awakened between the hours of 1am and 4am- it is absolutely the opposite.

and that is what happened last night.  i was half asleep- dream/thinking about being in uganda.  it was very dark and quiet outside and very dark and quiet inside of me.  i was imaging being in the little market in mukono- the one i'll be able to walk to, down a long red dirt hill and across a very busy street.  i was imaging the rows of not-so-fresh bakery items, beside the cans of red jelly, variations of box milk, electric pink hotdogs, playing cards with the actors from the titanic, old dusty pens and notebooks.  i was remembering what wasn't there- cheese, brownie mixes- chocolate chips- good bread-vegetables out of season - grown in other places, almond milk.  i was remembering that it wasn't particularly pretty- it wasn't a place to go because you wanted to get out of the house- and the kids can ride in a cart shaped like a race car and maybe they'll have free samples. it's where you go because you need some pineapples or bananas or maybe a deck of cards with leonardo and kate on them.  i imagined bryn who is almost 4 and has never left the country- having a full on meltdown in the 2nd of 4 isles in the little market- and people looking at the spoiled little blond kid- who is being told he can't have the $7.00 box of stale captain crunch- while he screams that he just wants to go home to america. and i was filled with dread and anxiety.  the full on 'what are we thinking?' feeling.  and this sense of deep apprehension followed me for the rest of the night.

this is holding the tension of the opposites again.  this is straddling the gap between faith and fear.  longing to go where it feels right and terrified of the going.  knowing that mike and i are the ones who feel called into this- and aware that we are deciding this for three dependent little people.  it changes your sense of responsibility.  it begs the question of - are you sure? now? there?

thank God for the sunrise- that pink and yellow growing hope poking its head above the scrappy tree- lined horizon-calling me out of fear and back to faith.  showing me the world again here- blemishes and beauty- reminding me that it's not where, it's who.  and that our spirits are so much deeper than our senses. that it will be OK- for them- for me-for us.  reminding me to trust.  and so the day began once again, in eager anticipation.

it ended at brain balance- zoe's last week- and me doing a video testimonial to our experience- in reflection over the past 6 months.  of course, i didn't prepare- i winged it.  and in those 10 minutes i was again reminded of how far she's come- as i heard myself say what she now does, and doesn't do, what she now has insight into, what she now reflects on.  but i also heard myself talk about the beginning- and my doubt- and her slow start- and how things got worse before they got better.

and i remembered how hard beginnings are- and i remembered my 3am mukono market vision- and how hard it probably will be- but that time will pass- the sun will rise- the sky brighten- my hope will be full again.  time, it heals.

as it turns out, ode to my beautiful mom

we spend lifetimes finding ourselves- only to lose ourselves and begin again.
a beautiful sunday.  being in church always resets me- refocuses me- enables me to let go of the week just finished and start again.  it makes me feel small, but loved; forgiven yet worthy; helplessly empowered and full of dependent promise.  i can sing and feel the music and pray and feel my heart- and be reminded of the simplicity of it- let go of complication.

last sunday we were in north carolina, snowed in at the mountain house.  after the kids had gone to bed- we had an evening prayer service led by mikes dad- who is a retired philosophy professor and now ordained in the anglican church of uganda.  after the readings and liturgy and prayers, my sister suggested that since the family was all together - they should pray over mike and me- and our preparation and mission to uganda.  immediately i got a lump in my throat.  i knew this is exactly what we needed. this was a moment so special and so rare. two families together- his and mine- united by a faith in God that ran through generations and has landed us together, as who we are separately, about to uproot and embark.  and so it began, and i wept through the whole prayer.

it began with my mom- a voice i've listened to for 40 years- a voice who has called out to God on my behalf so many times- more times than i'm sure i even know.  a voice of steady conviction- a voice whose faith is deeply planted and does not  waiver- does not question- is not afraid or insecure. it is the voice that raised me.  the voice who spoke the first words my earthly ears ever heard, " Jesus loves you, even more than i do!' they spoke on that cold night in cambridge massachusetts 40 years and two weeks ago. her voice brings to me instant comfort- and i knew as the tears poured down my cheeks that it's that voice that i will miss so much when i live across the world from it. it's that voice that i worried would leave me mommy-less when i was 10 and she had breast cancer. that voice that warned me of life's temptations and spoke of its joys and of my purpose and plan in the universe.  it's the voice that led me to seek God despite the crap life throws you, to find meaning in the suffering, to not be short sighted, to give and give and give again- because we are replenished. it's the voice that my children hear at least weekly now.  the voice that shapes them as it shaped me.  a voice that i will be eternally thankful for and will hear in the deep parts of my heart always. even on the other side of the world.

and the prayer continued with my father. then my brother, then mikes mom, my sister, my brother in law, and mikes dad.  and i could and i should write a paragraph about each of them- their unique part in our lives- in my life- in my formation and process.

and we were sitting on the floor of the living room- surrounded by love and people who share in the even deeper love of God.  people who trust in that love enough to freely let us go- to send us even, because they gave up control when we were little babes.  so i cried and cried some more.  my heart moved and loved, and saddened and impassioned and inspired and rejoicing at the blessing of our family.  and the knowing that while far apart- we remain connected.
and that really, it is just the blink of an eye.

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?

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.

happy birthday jude

i should be folding clothes. i should be wrapping gifts. but i have to pause for a moment of reflection and thanksgiving- because tomorrow, Jude turns 5! this miracle boy- given to me three times over- has reached five. it's such a long story- a story that needs to be told- - a story of the layers of God's grace- a story of olde-timey miracle- a story of prayer -a story of me finding God- a story of a life begun- and an old soul born.

samuel jude came to us after four years of infertility and struggle, and there could be volumes written on this chapter of sadness and growth. he came to us after years of needles and hormones and hopes and disappointments. after doctors and ultrasounds and discussions of risks and benefits, and a miscarriage and one last cycle before IVF. then, there it was -2 pink lines- in the magnolia room of an atlanta hotel. oh the JOY! the first time i was given him.

and then at the 20 week ultrasound- i sat on the other side of giving bad news- and in that quiet dark room, time froze and the air was felt and his tommy bahama tie will be forever in my memory as he told us with his head down that the brain of our boy was no good. there was hydrocephalus- too much water on the brain- his head was big, his brain was thin and some of it missing. this was bad, he said, very bad. we needed to make decisions- he would be handicapped- we should abort.

heaviness set in deeply- like wearing lead. i don't remember getting home that day- or breathing much- just feeling his legs kick and his body moving- and feeling alone. mike couldn't touch my stomach for several days. he couldn't go there. the next morning i woke up, a bit confused, and then i remembered what was happening, i reached for mike and started to cry- again.

"dare you to move, dare you to move, dare you to lift yourself up off the floor- "

i had a dream the next night. there was a young doctor talking to me - he had kind eyes- he was Jesus.
i said to him, i can't handle this-
he said, you have no idea what you can handle
i said, i don't want this-
and he just said- i know.
and put his arms around me and we cried.

i woke up and was at peace


i cried everywhere i went- how could this seriously be happening?- are you kidding me? we've been waiting four years for this child- you want me to abort him? he's been moving for 4 weeks? for me there was no decision. he was mine - i loved him, no matter what. then some good news came- i had an MRI- his brain was whole and looked good- now it was just too much water- they couldn't be sure he'd be normal- they couldn't guarantee. i didn't want a guarantee or a warranty, i just wanted to be left alone to have my baby. i didn't want the long faces of every OB i saw- i didn't want their pity or their concern or their sorrow- or their confusion over our decision to keep our son- i wanted them to share the joy of my pregnancy- i wanted to be treated with the same enthusiasm that i had about our son. thank God for judith bishop our midwife. she made me feel normal. she put it back in perspective. the choice had been make- and she was OK with hoping for the best. after convincing the perinatalogist that we could try labor instead of a c-section- i was induced at 38.5 weeks and on March 9, 2005- samuel jude reid entered the world with his eyes wide open, ready to eat. he was beautiful. he was perfect. he was stable. i had been ready for anything, emergency surgery, a horrific - distorted child- but there he was- wide eyed and hungry- an old soul. that was the second time he was given to me.

a few weeks later he went for his first MRI outside the womb. he was put to sleep and swallowed by that giant magnet. the purpose was to see his brain, and to try to understand why he had so much fluid. i broke up this experience which we had about 10 times in the first 2 years of life, in to 7 bite sized pieces. first getting him to stop nursing 6 hours before the scan- trying to comfort a child who knows you're there with your milk leaking everywhere and denying him food. then the anesthesia- watching your tiny baby go limp and be taken away with needles and oxygen. then the hour away from him, knowing he's deep inside a magnet- and feeling like your own heart has been removed and is being examined, only perhaps worse than that. then the recovery phase after anesthesia- that awful, unbaby smell of OR gases and tape, and the unnaturally cold feeling of a baby who's been lying limp on a hard table with nothing but a sheet for an hour. the next piece is the waiting. waiting for the results of this test- which was always for us on a friday, waiting until monday- like easter weekend- Jesus in the tomb. and finally the last bit, getting the news.

Samuel means "because i asked the Lord for him". Jude means "praise God". for the first three months of his life, we called him sam.

when he was 6 weeks old, after his third MRI, we got some really bad news- over the phone. we knew after the first scan, that there was some "mass" in his brain that looked like it had caused the build up of fluid. i was in nursing la-la land with a thriving, smiling little boy, and basically felt like mass, shmass, if it's not bad, i don't need to worry about it. but the doctors were not so at ease. on the third MRI, the mass began to look concerning, it was also bigger. they wanted blood work to look for tumor markers. the blood came back- the tumor markers were high- really high. this was bad- really bad. it looked like a malignant teratoma- it would take over his brain- it would kill him- there was nothing they could do- surgery wouldn't help- chemo wouldn't help- it would be about 6 months.

the world stopped. i was home alone with zoe and sam- i called my sister to come get zoe. i called mike to come home- and i fell to bits. i cried like i'd never cried before, i cried out all the salt in my body until my eyes stung so badly i couldn't see. i forgot to breath- i was just milk and tears. and there was sam- grinning at me.

good friends and family came and called and cried and helped. they brought chicken with olives and dessert. they cried too. mostly they just were there, on the phone or at our side. and the prayer chain went out- like the dogs calling to each other in 101 dalmatians, it was barked all over the internet and on the phone and in writing. pray for samuel jude- he has a brain tumor- pray for healing- pray for strength- pray for his parents who are crumbling to bits.

i got emails from people who'd been praying- people i'd known when i was a really little girl- people i'd never met. i can't explain it, but the peace that i felt was like nothing i've ever known before.

then God showed up again. we were in the MRI suite, waiting for him to finish the test- part three of the bite sized pieces. i was so worried, so afraid- what were they going to find- how much had this tumor grown- as we paced and waited-i felt the presence of God, by my side- again, in a way i can't explain- except to say that i know He was there- we were not alone. for all the years since- i cry in church when i hear, "blessed be your name on the road marked with suffering, tho' there's pain in the offering blessed be your name"- because i'm transported back to that basement MRI suite of moffit long hospital in san francisco when i could say "blessed be your name"- even in that darkness- because we were not abandoned there.

and i was given him a third time. the tumor had shrunk, the markers went down. they didn't really understand, but now this wasn't behaving like a malignant teratoma. we'd have to wait and see. praise God.

when he turned 12 weeks we started calling him jude.

by the time jude was a year and a half, we had learned to live in the gray zone - we had learned that being unsure, was much better than being sure about something awful. jude was now getting scanned every 3-6 months, and on the day to day he was doing great. that fall, mike traveled with his dad to a remote village outside of mbale, uganda. they went to a little church there for the afternoon- it was the home church of one of the drivers that mikes dad had used on a previous trip to the capital of uganda- several hours away. mike and his dad were the first americans to visit this village church. when they arrived, the people gathered around mike and said through a translator, " how is your son? we've been praying for him." this floored him. this little ugandan village church, a community devastated by AIDS and poverty, was praying for our little son, on the other side of the world. they had prayed for his healing, they had prayed for our peace. they had cared and loved and had faith- for someone they'd never met- someone they probably would never would meet. and this for us was life changing.

the story of jude deserves so much more than one entry on a blog- it has so many layers and there was so much gained and found in those dark and stormy months. his life is such a gift- given over and over- and i wonder what else is left to unfold.