opening

“What is important is the moment of opening a life and feeling it touch--with an electric hiss and cry--this speckled mineral sphere, our present world.”
― Annie Dillard, An American Childhood
 

the opening of a life.
i love this image.  it's like a treasure chest- full of secrets and mystery.  or a fruit, full of sweetness and  potential.  i'm thinking about this in the big sense.  i'm thinking about the moments when life opens up to us. when we feel a connection we haven't before with this great spinning speckled sphere.  i'm thinking about these moments that stay with us- that become etched in us- part of us.

one of the blessings of having children is watching the opening of their lives.  the revealing of their pulp- the sweetness that lies in the center.  the unveiling of personhood. and watching them become aware of themselves- feeling the earth beneath them- seeing the perspective change the first time they climb a tree.  learning to trust their bodies to be strong for them.  understanding that sounds blend together into words- words that hold meaning- meaning that can change with context and expression and voice.  finding their voice-that it's different from my voice.  childhood is full of openings.

having a child with special needs is a strange combination of feeling this process in slow motion but also in florescent vivid color.  the opening may be only a small crack.  sometimes it feels like it must be pried.  sometimes you wonder if this life opens at all.  but when it does....when you see that child in touch with her present world...it's brilliant like nothing else.  and when you peek in you may see that the innards are so delicate and tiny, that time is needed before this life is ripe for a deeper opening.  but the richness is just as deep. so you hold them and warm them and wait.

one of the blessings of being a doctor is hearing the opening of other peoples lives. strangers lives. when you listen, you hear that everyone, every single person has fruit and gold, and mystery and potential.  being a doctor provides a situation for engagement- it provides the opportunity to have a conversation- to be open to the life this other person has lived, is living, will live.  it sometimes demands acknowledging the potential for behavior change, medical adherence or growth- because sometimes you might be the only one who is listening.

but i think this is one of the general blessings of being a human. the daily opportunity to impact each others lives.  we all have value, individual value and worth.  how we treat each other, how we respond to each other, either encourages or discourages the opening and touching of life. we hinder or enhance.  we feed it or starve it.  what we do matters.  who we are matters.  because we all have a life waiting to open.

so where do our feet take us? 

disconnect

i know i'm disconnected- but i'm not sure from what.  i got called this morning that mr. w died.  today, this morning, july 7th. my friend, another doctor who has taken care of him all week, called to tell me. he'd come in over the weekend, got his fluid tapped, but his belly had a lot of tumor, it probably got nicked, he began to bleed, the liver was broken and couldn't make the parts needed to clot things off, he didn't want any surgery, they tried to fly him home to die at home, to die with his people in new orleans, he was too sick to go, last night he 'slipped into a coma', a nurse sat with him all night, she gave comfort, he got pain meds, he was at peace.
my friend was crying as she told me, i was dry as a bone.  that is what happens when i'm disconnected.  or maybe i knew it was coming- maybe that is why i cried last week at work about him.  i kind of knew it was done.  mr. w taught me a lot- about being a patient and about being a doctor.

when i met him last summer, i liked him immediately.  he had a spark in his eye- and a sincerity that he could turn on and off- i could see how smart he was- street smart- people smart.  i met him at a time when he was making some real choices to turn things in his life around.  reaching out to his son who he'd left as a child- reconnecting- reaching out- making things right.  he knew his cancer was bad but he was going to live as long as he could- 'fight it' - not be told by anyone when his time was up.

over the past year he made several trips home- to see his mom- his siblings- his friends.  he wrestled with alcohol and probably other drugs- that love/hate relationship- that overcome/give-in dance people do with the substances that have always been there when people haven't been- that have brought much comfort and much pain.  i didn't care- i didn't mind- it was his process- it was his letting go- it was his dance.  i still gave him pain medicine- which he never abused.  i gave him my cell phone number- which he never abused.

over the year we trusted each other.  there were times when i told him things he didn't want to hear.  there were times when i didn't say anything- or do anything- but sit there when he was so angry that his cancer has spread and there were no more chemo options.  i watched him on the seesaw of acceptance and denial- and i learned it is a wiggling teetering- not a smooth process- this business of the acknowledgment of our dying- our finitude- the terminal condition of being human.

he'd spent much of his life homeless- on the street- disconnected from family and systems- and i wanted to know what that was like and what it was like now to plug back in- what it feels like to need the system again- to have to trust- and to be facing death.  and he allowed my medical student to spend hours with him- to interview him- to hear a different perspective- to hear his wisdom.  he gave of himself generously- shared his story- his life with us.  'if it's gonna help you- i'll do it'.

after thanksgiving he mentioned wanting to go home to louisiana.  i told him he'd better hurry- he'd better do it while he feels well enough.  (i thought he'd be gone by christmas).  and i learned, again, that i can be wrong.

'doc, i don't plan on going anywhere soon- you know what i mean.'

i hoped he was right- and he was.

in the winter and the spring he made several trips home to new orleans- he allowed hospice to begin to help him while he lived with his son.  he almost always came to his clinic appointments- even though he took several buses to get to me- even though it was 90 degrees- even though he'd lost 50 pounds-  always calling me on route to make sure i'd still be able to see him- even though morning clinic was over.
of course.

people need to be met where they are and where they've been.  their story is important to how we care for them now. 

perhaps we connected because his story wasn't pretty- but he tried.  because his life wasn't tied neatly in a bow- but he carried on.  because he lived out the process of redemption.  he teetered between the nature and the grace- and he chose the grace.

i don't know what his years were really like- i don't pretend to understand life as a homeless 60 year old african american male in the south with stage 4 lung cancer.  at.  all.  i don't even really know how much redemption he experienced with his family- with himself- with his God.

but i do know he inspired me.
i do know his is a story of Grace.
as is mine.
as is yours.

woohoo!

that's right.  woo hoo!
the bank came through.  we are under contract officially- financially the offer was accepted.  we're are a huge step closer!
praise God.

i woke up today with a really good feeling. about everything.  i woke up with a vision of Out of Africa playing in my mind- the scene of karen blixen selling her belongings - all of them - from her porch and yard in kenya.  and i was reminded again of this great privileged- this great adventure- of the history of what's behind it- of what's beginning.  today was a day of feeling the newness and the excitement and not the sadness of the leaving.  today i looked forward and not backwards.  and i realized that i'm so ready!!

it has also been a day of remembering how beautifully orchestrated this has all been- symphonic. i couldn't have written or played it better- all of which is affirming- confirming- soothing- reviving-and bringing peace.

tomorrow our dear friend from uganda comes to visit with her son- who is judes age- who will be in his class in uganda.  he will have a chance to connect and to know a friend- i can't wait.  it's all so good- and i sit in the hotness of another 90 degree day and feel wrapped in the love- in the promise- not consumed- but blessed.

zoe's shine

zoe has had a good week.  much better than mine. she's been more mature in many ways- and more insightful- than i have.  and i'm impressed.  she's managed to remind me, and mike, that we need to be more patient, to remember that some things are really hard for her.

last night mike was supervising her washing her hair.  he was understandably annoyed that she wasn't doing an affective job after so many years of teaching her.  she gently told him that its actually hard for her to remember the steps, the order of them, and then to get her body to do it.
we take so much for granted. we for whom this comes naturally.

today i had yet another star parenting moment.  i was getting irritated with her slow pace with eating breakfast, and getting ready.  so i said, "can't you try to act like an eleven year old? it's simple- get dressed, eat your breakfast, brush your teeth, get your shoes on, get your coat on! "  zoe's response, "mom- i'm sorry.  i'm trying.  it's harder for me to keep track of everything because of my nonverbal learning disability!" oh.  right. "i'm sorry zoe." i'm an idiot.

but the most impressive thing was how she read her brothers mood last night, and directly addressed it. in fact, she addressed the large stomping elephant in the room- that i couldn't name- the same elephant that has been bothering me all week.

her little brothers are almost 4 and almost 6 and they are wonderful- but they drive her crazy sometimes.  last night they were more hyper than usual, especially jude.  he was really acting out and bothering everyone.  i was not responding well.  i was just reacting to him.  getting mad.  giving time outs and taking away dessert.

then zoe stands between us and says, "mom- you know what's going on here? jude is really stressed about moving to uganda and having to make new friends- that's why he's acting like this- i can sense it. it's OK Jude- i feel that way too."  it was so perfect, so insightful, so mature and aware, and what made it even better, and definitely humbling, was that i had missed it.  i have been so caught up in getting mad at everyone's grumpiness, everyone's inability to meet my expectations- that i had forgotten to step back and think about what is really going on- for all of us.  and zoe- the one with challenges picking up on social cues, the one who has a hard time with understanding facial expression and tone of voice and subtlety, she senses it, she names it.

jude told her that he's not stressed about moving to uganda and that only yoda can sense things like that.  now that zoe had set me on the right track- i picked him up and suggested that maybe he was anxious about the fact that the house is going for sale this month and we're starting to pack up our things.   yes- he said- he loves our house- he doesn't want to move- and what were we going to do with all our stuff?  it opened the door for many question to come out and be answered, for people to not feel alone with the changes that are happening. and it clued me into the root of my own underlying irritation and anxiety.  we have a lot going on.  no wonder!

i love that it was zoe who sensed it.  zoe who called it.  zoe who interpreted the mood of the house correctly and zoe who spoke it.  it's her gift- the cool part is, her ability to articulate it now.

then the icing on the cake happened at the orthodontist today. zoe was a little anxious because she was getting her bottom braces on. this woman was checking out while we were checking in. then we sat down and she left.  a minute later, she comes back in and says, " are you zoe?", "yes", "you probably don't remember me, but a few months ago i was here about to get my braces and i was so nervous and you told me all about it, and reassured me that it wasn't that bad and told me how you handle feeling nervous about it all.  you gave me so much comfort and i wanted to come back and thank you."
again, zoe shines.

where the red fern grows

moments of break through come at the strangest times- or in the strangest ways. today it came with a movie from my childhood.

this week has been a great home-school week for zoe and me.  we've calmly worked- we've not over done it- but a lot of learning has taken place.

she now goes to two classes through the LEAD home school organization and she goes by herself. this is big.  she's with about 6-8 kids and one teacher and she's doing it! she's learning- she's not horribly distracted or distracting ( or at least i haven't heard about it if she is).  she likes it.  she's made some friends.  she is happy.  at home this gives us a bit of structure- we need to get things done to work around the classes- it's good motivation.

today she had class and then we came home and were able to get through a lot of things- copy work, math, poetry, piano, greek mythology, grammar, and vocabulary.  i actually didn't hear the words "OH why did you help me!" not even once!  even when i helped her remember how to play two of her songs on the piano- she thanked me.  she wanted to 'google' information on the vikings- her class is on vikings- so we did this. and this lead to looking for a movie about vikings since we'd accomplished so much.  we couldn't find one- but we did find "where the red fern grows".

now i'm remembering this from my childhood- the book and the movie.  i'm remember it being about a boy and his beloved dogs.  i remember it being very poignant and a bit sad- but i can't remember why.  so i tell zoe that it's a great movie and set her up to watch.  she eats lunch and is fully engaged in the movie and i'm running around cleaning up and periodically watching scenes with her.  then i sit to watch the last 10 minutes.  the part when one of the dogs, big dan, dies trying to protect his sister dog and billy his owner.  it's very sad.  then it gets worse.  the sister dog, little annie, dies of grief over big dan's death and over their graves the red fern grows.  zoe is trying to process this.  she's upset and curious about why and how little annie actually dies.  so we talk about it, about the sorrow and about the loss.  and then she wants to see her dog, so she feeds her and watches her eat. and then she looses it.

she says, "this is just so sad!" and starts weeping.  and she's sitting on the floor crying.  so i gathered her up and sat her on my lap- and then it turned into anger.  she was angry at me.  "why did you tell me to watch this terrible movie!" and she began trying to pinch me and slap me (in her very gentle zoe way of not actually wanting to hurt me, but to explain her feelings).  i reminded her that there were beautiful parts and sad parts to the movie- the boy's love and friendship with his dogs was beautiful, and that their dying really is sad and that it's OK to feel it.  that i was so proud of her - because it meant that she understood how billy felt.  that she was able to relate - that she could empathize.  i told her not to confuse sadness with anger- that they are separate- that sadness isn't always bad.  for zoe anger is easier.  anger is daily, she runs from sad and i'm not fully sure why.  i told her it's OK to cry and allow herself to feel sorrow.  that understanding other peoples feelings is a really important part of living.  and she put down her little fists and cried in my arms.

this is huge.

this is progress.

this is her right brain engaged.

zoe has never reacted much to movies except for humor.  unlike all her friends or classmates or brothers, she was never scared at a disney film or cried during ET.  she wasn't able to relate on that level- she didn't connect herself to the story line- to the characters. 

we hit another developmental milestone.

we're working on holding that tension- not avoiding an entire movie because of a sad ending, not all or nothing, living with the good and the hard-having the ability to feel  the spectrum of emotion- because that is real. that is life.

it's another velveteen rabbit moment- zoe becoming more real, more alive. and it hurts. but it's worth it.