Thursday, December 15, 2011

different day than planned

life happens so they say
original thoughts included meeting with Janet if she had time

and also going to lunch
our annual Christmas outing with the staff girls
at HomeInstead
and I would have loved doing those things...
life happens
to have different plans
than my own sometimes

Bryan woke up sick
fighting the cold lingering from yesterday
getting worse
and I woke up feeling nauseous from the chemo
and we'll leave it at that.


it was quiet here
Bryan and I take good care of each other
...

then later I went out to the store to get things for him
and wore a fun hat my cousin Sandra gave me
my hair was wasted
and I had no desire to deal with it
so hide it I say

we are both feeling somewhat better this evening
and enjoyed our Yogi tea
"Relaxed Mind"
is the blend
with honey and the sayings on our tea bags:

"The purpose of life is to enjoy every moment."
"May your mind learn to love with compassion."

we'll drink to that and we will also be watching
"It's a Wonderful Life"
Bryan is watching it in Film Studies class
and yippee
he needs to get caught up since missing school today
now that's a plan I can live with.

and right before watching the film
I am going to put up a pretty ornament on our tree
a bell
an angel bell
from the movie set of ornaments
thank you, Debbie
can y'all hear the bell ringing?

Wednesday, December 14, 2011

moments & months

a number of times I started to write
and then the words fell
through the cracks of time

not with a regret exactly
more like being in a conversation and then realizing
the words coming from my mouth simply do not match
what I am seeing in my mind's eye
and so I close my mouth
and then realize from one moment
to the next
more than a month has passed...

there were such perfect moments during the three days
of Bryan's performance experience
pure crystals-in-my-heart's-window memories
can they be captured in words? no
yet not to try is to let them slip through
the fine white sands of time
in my hands

this day I have chemo and tomorrow I have off from work
the first thought is to write here
other thoughts include Christmas cards
and so many to-do-list entries

there is something that came up:
my physical/muscle heart needs more checking after a stress test last week
I have known that something is up
we shall see next week

for now, my spiritual heart is more my focus
and it is in the most fleeting moment
that time tells it's deepest quiet stories
when I am quiet enough to listen and
whisper back

Thursday, November 17, 2011

tonight tonight: White Christmas!

blue skies smilin' at me
nothin' but blue skies do I see...

well, tonight is the big showtime night
"White Christmas" will be performed
at Hickman High School 7:30 pm
the first of three night performances
and Bryan's first theater experience ever

they are all exhausted
practicing until 10:30 pm
with all their homework and tests and everything else
they have going on
and all the experienced cast go through this every time and it just is what it is
this past week leading up
to delivering their best

Bryan was complimented many times for his attitude
and creative input as well as steady hard work
the other day the cast put on two short performances
for the student body (over 2,000 students)
and people came up to Bryan afterwards and commented
that he was the only dancer who smiled the entire time (the goal
for his part)
and he just smiled back and said he was just having such
a fun time!

I can't wait to see him and Olivia
the other morning there was another radio performance
advertising the upcoming production
this time on an FM station
Bryan found an ancient cassette tape recorder
and asked me if I would please tape
Olivia and the trio she was part of: of course!
we changed out big batteries
I figured out which station it was
and before work
went out to the car radio and taped their song
it was so well done I sat there in the cold car
crying and hoping the old tape recorder worked
it did /sort of
but I have to find my digitial tape recorder in the mountain
of yet to be opened boxes... another story another day

my boy in a tuxedo with a flashy vest on!
dancing with three other guys
innovative moves he created, adding to the choreography
I will attend all three performances
tomorrow night Gary and his Mom will come, too
Saturday night, Brandon and Mahdi will join me
and we will shower Olivia with flowers and I will slip Bryan
a gift for his wallet... have FUN!

this is a new life experience for all of us
and I am grateful to Bryan for his courage and enthusiasm
to jump into something completely new
and give it his best
a lovely life lesson for anyone
at any age

this morning was so frosty
tonight it will be an early white christmas

Thursday, November 10, 2011

on the radio

this morning
Bryan told me:
"Mom, at 7:20, Olivia and some of the cast members
are going to be on the radio
KFRU..."
so we rushed around and got into the car
by 7:19
and sure enough!

it was so wonderful to hear Olivia's
voice
and the voices of my son's good friends
as they shared a little about the musical
coming up next week, hard to believe
already
they are working so hard

dress rehearsals now
and all the tech things are being pulled together

on the radio
they sang a bit of White Christmas
and my eyes all glittery glistening
listening
and seeing my son's happy gentle face

as he got out of the car
he said he was going to ask his 1st hour teacher
wonderful man
if the class could then listen to KPLA
at 7:45
since the team-of-four
Olivia, Maddie, Mason and Logan
would drive over to the other station
and share and sing there
letting the town know the show is coming
soon...

I got home, got on the computer found out where
to get KPLA on the dial
great radio girl I am not
then listened live
but decided to race out to the car radio
just to make sure
I sat there in the cold car
and cried warm tears listening to the beautiful
young voices
singing a lovely old song
memories gliding on the blades
of ice skates
slicing whooshing cutting through roughness
hands warm in a white rabbit fur muff and collar
the ones that made me feel like a winter princess

my own White Christmas feelings long ago

KFRU KPLA in the morning

Sunday, November 6, 2011

planting words

"sticks and stones
can break my bones
but names will never hurt me."

bs
wrong
not the truth

I have a sense where that came from
and it may inspire a bit of courage
when faced with angry words
or accusations
name-calling from an emotion-bully
yet it evokes sadness in me
not courage

names and angry words can cut you to the essence of yourself
and the scars can heal, yes,
the damage causing a caution, a sensitivity...

on Friday
I was faced with angry words blasted in my direction
in my three years as a senior caregiver
this has happened several times
and I get caught off guard every time

all the details are immaterial in a way
I made a mistake in judgment
good motivation, wrong timing, sorry me
sorry mess of tears after anger flies at me

all over one package of spaghetti noodles
one jar of sauce and one pound of ground beef...

goofy in some ways, dementia in action
my good intention perceived as usurping power
and so after tears
and a day off
I went back to the scene
and we worked through it
what a long long morning it has been
apologies in both directions
I will be infinitely more cautious
will never ever ever ever purchase anything
that is NOT ON THE GROCERY LIST
and learned something about living-language in the process

we are always planting
planting ideas
planting words, thoughts
planting actions
planting now
what grows into our reality
and the stuff of memories

what do we plant?
words of courtesy?
words of anger?
thoughts of giving?
thoughts of revenge?
actions that are motivated by heart?
actions that explode and damage people's lives?

reaping what we sow...
now that old idea works more in my mind
in the present

what kind of garden do we grow in our lifetimes?
our thoughts, words and actions bloom
in the seasons of our time

I love sunflowers and French lavender
I love bouquets that have many varieties of color
and texture
I love living plants that bear fruit
and surprise us with displays even in the snow

angry words are planted, too, and the weeds
and nasty evasive growths coming from them
are very hard to extract
they crowd a lovely delicate bloom
angry plantings have roots that grow deep
if left to multiply

I could be angry if I wanted to be
I know cancer patients who are consumed with anger
I know non-cancer people consumed with anger
it grows
and you do have choices on how to deal with it

I could be angry that I did not receive the kind
of nurturing love I needed to grow in ways that
seem like they would have been lovely
my father did not give me that
I could continue to blame him
for certain deficiencies in my heart and personality, etc.
I choose not to do that.

I uprooted myself
and planted myself in other soils...

every day I am the gardener of my life

Thursday, November 3, 2011

tradition

a couple of weeks ago
Brandon told me that he and Mahdi
bought a couple of big pumpkins
and they carved them, making great looking
jack o'lanterns

it was funny for me to see photos of their
experience on Bryan's FaceBook page
with all the goop and mess involved, smiling through it
when he was little he hated cleaning out
the inside of the pumpkins - total yuck to the max!
but when you grow up and you want your traditions
established at your own house,
goop goes with the deal: bring it on

when Bryan and Olivia eat over at our house,
we are developing traditions of our own here
like candles, flowers, simple but special table treatments
that they have come to enjoy
(me, too!)

I love watching Brandon and Bryan develop traditions
some they have learned from us
some they have learned in other ways, books, movies...
some they make up on their own...

what a privilege to see them bloom
hands in the goop
holding hands
exploring the past in new ways
creating their lives as men
with warmth, and heart, humor and intention...

we will share Thanksgiving
soon
that is an American tradition I love
this new home will be a good Thanksgiving
destination for them

after chemo yesterday,
I am pretty tired right now.
these happy thoughts wanted to be written
before a rest

love from me
happy dreams, afternoon and anytime

4:13 a.m.

several nights ago, I woke up and felt
a bit disoriented
looked squarely at the clock
4:13 a.m.
and figured that I had more time to sleep
before going to work
and wondered why there was more light
coming though the door than usual

got up
saw Bryan's room light on
his bathroom light on
and my art-room-to-be
had the light on and door closed

I tiptoed into Bryan's room
thinking I might find him asleep with a book in his hands
maybe
but he wasn't in his bed

hmmm

quiet knock on the bathroom door
nope

thought I heard some very soft music,
but I was 3/4's asleep
opened the art room door

and there he was: dancing!
at 4:13 in the morning!

"I love dancing, Mom, and need to practice these moves
for the play... do you want to dance?"...

of course I want to dance with my son in the middle of the night
in the middle of a small room
with little floor space
and big imaginations
on both our parts!

dancing has not been a feature presentation in our marriage
that's okay, I like my toes for walking,
yet it has been somewhat of a missing piece
for me until the other night

Ginger Rogers (sp?) I am not
Fred Astaire would have applauded Bryan

my Einstein hair aside
I grabbed a fluffy short turquoise robe
he turned the music up a bit
and we danced!

"I could have danced all night,
I could have danced all night,
and still have begged for more...
I could have spread my wings and done a thousand things
I've never done before..."
"My Fair Lady" I know
we were doing "White Christmas"
it all blended together

the next day Gary did wonder about the noise upstairs
and we explained
the day after that, I had the inspiration
to try to reach his choreographer, Mrs. Steinhaus,
at his high school...
we have yet to meet,
and she just happened to be there when I called
and available, close to miraculous,
so I was able to:

1) apologize for calling Bryan on his cell phone
and interrupting practice (I thought they were finished)
She was very sweet about that
2) thank her so much for giving Bryan the opportunity
to be a dancer even though he has no experience whatsoever
3) share with her the story of dancing at 4:13 a.m....

she said so many wonderful things about Bryan
and said that the call "made my day"
which in turn, made mine

the day after that, Bryan's girlfriend, Olivia,
who has one of the two female leads,
laughed when I shared the whole story with her
she asked what time I had called the drama teacher
and it was just before Olivia had a class with her
Olivia said Mrs. Steinhaus was smiling
and exceptionally nice... ah ha, my phone call
had that nice ripple effect we love so much...

clothes pins and little books

this will be my third attempt to respond to
the comments from my last post...
instead of using the "comment" feature
I will share here

thank you, Janet, for breathing in some Santa Fe air
on my behalf
and for having happy memories of us together
there
it has been a long time since breathing there myself

Doe, in the past several months, I have purchased
small books
two books each time, twice,
with the intention of making these for my sons
one with more words
the other with more art
now my desire reached your dream so I will get started

how could you know about clothes pins?
several months ago I bought a bag of tiny little
miniature clothes pins
I have this set of very large flat baskets
from China
I used one to cover up a strange wall feature (square panel for some reason)
and used one of the tiny clothes pins
to attach a lovely gingko leaves card from my mother

it looked very pretty and interesting
and when Brandon's sweetie, Mahdi, saw it
she loved the idea
and I just so happened to have another big basket
and gave her the rest of my bag of tiny clothes pins
so she could make a photo bulletin board of her own
at her apartment...

I had forgotten where I bought them,
kept looking around and found another bag
which I bought and last week added more cards
from friends

so small handmade books (though not for sale!) and clothes pins
shall we?

Friday, October 28, 2011

the light of day

yesterday is past
today I can handle the light of day
I have a passion for the Science Channel shows
about the Universe
I understand about 1% of what is said
and pretty much forget 100% of that
and refuse to give the lame chemo brain excuse on that one

still, I love being blown away by the facts of science
the enormity of creation
the enjoyment absolutely enhanced by a wider flatter screen
and excellent custom (thank you, Gary) sound system
for the past less-than-a-year

I sit up very straight when I hear the size of things
the vastness
the exactness
the randomness
the beautiessness and I refuse to correct that word despite
the red squiggly line underneath

so, today, after being cloistered for a day
unable to handle noise or light or daily life
I head out into the light of day
a little lighter myself
remembering how I used to sing
every morning for my boys
every morning
in the light of day

here I come, sun
face to face, you and me

Thursday, October 27, 2011

why isn't it pretty?

sleeping last night was rough
at one point I almost got up in the middle of the night
to erase delete eradicate disintegrate vaporize and generally
wipe out of existence

my previous blog

it isn't pretty
there is no poetry there
to write it so incomplete is to protect individuals
to not write it was to attempt to hide from
the serious reality that is mine right now
and that felt dishonest to me and avoiding
the very essence for even
writing at all

I want life to be loving romantic and memorable
it isn't always as pretty as I want it to be, is it

I want my sons to know from me that whatever comes
our way
we can work with it, through it, around it if we have to,
not running away
yet wise enough to protect ourselves when necessary
we will each approach situations with our uniqueness
our personalities, characters and perspectives
bringing all of ourselves, heart & mind, to the table
and learn a lot from each other in the process

I want to tell stories perhaps that I have polished a bit
sanding off the rough edges so that I feel more comfortable
and we look more "presentable"...
I want Love and Humor to prevail, to be the ultimate destination
yet the road to get there might have detours
of Pain and Sadness

the other day I realized that more people were reading this blog than
I knew
that moved me and it also caused me to pause and feel self-conscious a bit
time is precious
reading this, so many words, takes time
I want to give something worthy

well, it will not always be pretty
all I can do is my best
as humble and messy as my efforts may be at times...

Wednesday, October 26, 2011

the process of forgiveness

this past Sunday
Brandon came over, an invitation from me
there was a letter waiting (for a week) on the table for him
addressed here at my request so that we could read it
together
if he wanted to

we knew it was an apology
we opened it together.
a week before
he told me that he would "open it with an open heart"
and he did...

Brandon asked me to read it for us since cursive writing
is challenging sometimes
so I read it out loud for the two of us

it was a very important letter
a little over a year after a very damaging one had come into his life
and took much from him
at a fragile, generous life-changing time for him already
...

I am writing this with a massive headache
the kind that comes for me after I have had a very hard
cry last night
again a significant one
laced with painful memories
and another apology, sincere, heartfelt and received,
this one for me
I am stretched today, wishing I could simply sleep peacefully
but that is not to be
my whole system and world has been twisted up
and I am trying to find my balance
...

returning to Brandon
he received what was written as best he could
after a year of making adjustments in his own mind and heart
feeling deep grief, loss, and some honorable anger
having to watch his Mom, me, suffer
added much to his painful experience

I had a number of days to contemplate, to try to prepare myself
to be there for him
and for us, as an example of how to receive a person's apology
to really accept sincerity and to process it into
our beings
we can never control what anyone throws at us
yet we can control our response
and in a deep way, that defines us
not to others so much as to ourselves

we talked for quite a long time in the kitchen, just the two of us
and I saw forgiveness in a new light that day
it is not a "forgive and forget" mindset for me
we will never forget what has transpired in the past three years
and there is a lot more to be processed for a safe peace of mind
to be there for us
being wounded emotionally parallels being physically hurt
Brandon's way is to go through the pain and move forward
not live backwards. entrenched in drama
it is way of self-preservation and making the decision
to invest his heart forward
this is not a very good explanation of his thinking
but I am trying because I was wanting to listen to him
help him, learn from him, and try to figure out my own path with
forgiveness
I tried my best to model for him what a person can do and be
in this situation
how to make a positive outcome through our thinking and responses

it does take time
for me
it is not a word or a phrase or sentiments on paper
those things are the beginning but not the completion of forgiveness
trust must be restored and that takes time and more experiences
together
I am grateful for beginnings
Life, my life, would have been sad for the loss, so very sad.
now, our whole family needs to learn how to re-learn
what are the foundations upon which to build
truly loving compassionate tolerant patient kind positive healthy relationships

I could come up with infinite words
to describe what I believe is possible between people
in this second life of mine
I invite anyone from my first life
who is willing to live heart-to-heart

last night, while I was on the phone crying as we worked through
a lot of pain on the path to "I forgive you" and "welcome home"
my Bryan and his sweetheart Olivia were having a nice evening here
celebrating their two-month Anniversary of dating each other
when I gently hung up the phone
I went downstairs with my red puffy eyes, Einstein hair, and quiet heart
to make a late dinner for them
(Bryan was going to make it, but they accepted my offer!)

we talked about the simple menu and I got the food cooking
and two pretty candles on the table
set things up in a cozy autumn way
and they loved it
as I walked up the stairs listening to their young happy voices
the love of youth, the love of loving, made me so happy
and they wanted to be close to me
to home
to celebrate
as they learn about the beauty of blossoming hearts

I thought about Brandon so happy to be bringing
a purple scarf I knitted for his sweetie
to give to her as a gift
a simple symbol
and I think it is all that simple really
the "I am so sorry" experiences are woven into the fabric
of the "I love you so much" treasured moments
and the preciousness of life is understood and protected
...

Thursday, October 13, 2011

in the wind

yesterday in the morning
my hair started to fall out
and I watched as it gathered at the drain
and then came out in the hair brush

my chemo treatment was at noon
so I decided that I was having a hard time
and needed to talk with someone
went to Missouri Cancer center
much earlier
hoping that my therapist friend Denise would
be there
but she was out for the day
I forgot that

my friend Carla who works at the front desk there
had a present for me from her son
13-year old Cameron
a ten year plus cancer survivor
who is dealing with mono right now

Cameron sent me a beautiful stone with the word
"Healing"
engraved into it
I was so moved
so smooth
and so helpful on a tough day...

I went outside and thought of calling Brandon
his house is not far from the cancer center
he was home
but busy
just hearing his voice helped
and my voice shook and cracked and gave way
I did not want to feel sorry for myself
or ask anyone to feel sorry for me

Brandon called me right back and said
"Mom, how about if Mahdi and I come over tonight?
I really want to be there for you...
we could come around 8:15 and stay for about an hour..."
and that became my focus

I went to Wal-Mart to get a thank you card for Cameron
and found a tiny little alphabet stamp set for $.97
and a miniature ink pad, brown, for $.97
so I went to the beautiful park across from the center
it is called Stephens Lake Park

the wind was blowing and the autumn leaves
were whirling and dancing
as I walked towards a picnic table and bench
I decided that if my hair was coming out
anyway
I might as well take it out and let it blow in the
wind
with the leaves
into the water
by the old trees
there I was literally
pulling my hair out
what an odd sight
if anyone noticed

I was not angry or sad
I felt in charge
and significantly better than letting my hair
go down the darn drain in the bathroom
it was liberating and bordered on ceremonious
as if I was spreading my own ashes in nature
alone but not lonely
sick but very much alive
choosing to make something positive
out of a negative
and claiming my place at a picnic table
with leaves all over it

taking out my new miniature stamping supplies
I enjoyed decorating a card
for my young friend
a friend I have yet to meet in person...

the time came closer to go for treatment
and one of the ladies from the pharmacy at the center
saw me at the table and we chatted for a few minutes
time for reality-facing
a beautiful gold leaf took a fluttering trip
and descended right into Cameron's card before I sealed
the envelope
so it stayed there

I saw my doctor and he liked my hair in the wind story
and he said I was doing very well
and was in a "groove"
and that made me laugh
because it sounded good
and I needed to hear something different
than my own concerns right then

all the needles and prodding and stuff was done
a kind man who was with his wife for her treatment
brought a warm blanket for me on the way to
bringing one for her
how kind of them

someone came over to chat with me
and before I knew it
I was ready to be released

I collapsed when I got home
Bryan and Olivia came in and I just said Hi
and collapsed on another surface somewhere

Brandon and Mahdi came
I was so happy to see them
Brandon was taking care of me
and wanted his girlfriend to be part
of that experience together
I picked up a soft plush purply throw (blanket)
for her
it was her Birthday earlier this week
and she loves purple so purple it was
the boys and I have always had blankets
for TV and movie watching
so Mahdi needed to have one too

well, I still have some hair
and being with them
just made me feel energized
let's play ping-pong how about it?

we had such a fun time
laughed a lot
played all different combinations
of doubles
Mahdi was a beginner who learns super quickly
being a college tennis player for two years
who knew you could use a two-handed backhand
with that little tiny paddle?

they stayed until 10 pm
and then I started a purple scarf for Mahdi
with the yarn she chose from a basket full
of purply options

yes,
the wind blows
when you run your fingers through your hair
on a blustery day
salute your moment
in the sun

Monday, October 10, 2011

escapisodes

for well over a month we did not have tv
and even though I am the big Voice of the dangers
of too much tube and screen-in-general exposure
I missed it and admitted it
even though I was teased (a fair amount)

so I found that watching things on HULU
gave me the small screen fix of escape that helped me
I might have mentioned it already
can't remember

first, it was the old Sherlock Holmes series
with the leads played by humorous types in the BBC tradition
it felt like...
when that was over
I looked around for another "series" type show
and accidentally came upon "Jewel in the Palace"
created in Korea with English subtitles
it was apparently a huge success in Korea
historical fiction
I found myself riveted to the characters
and it was very cathartic to cry and laugh
struggling through the complexities
of trying to keep people and positions
in order

the drama
the humorous couple
the palace intrigue
and mostly the pure humanity of individuals
going through life's issues
with universal touches of understanding
pain and hope
themes of good and evil
love and loss
cheering on the great good people
helplessly observing with sadness
when selfishness and greed won certain battles of will...

at one point, since so much of the story revolves around
cooking in the Palace kitchen
I found myself craving Korean food
so I went to a small Korean restaurant here in town
KoJoBa
and had lunch alone
when I complimented the cook
for the delicious as well as healing food,
I glanced at the business cards on the counter
and noticed the owner's name: Gloria Shim

I enjoyed the connection even more when she came out to meet me
she told me that her mother was dealing with cancer
and gave me ideas about good foods from her point of view
and experience.
when I mentioned the Jewel in the Palace,
she looked at me and said
"make sure you go outside and don't watch too much TV (!)"...
and I laughed thinking how much my kids and husband
would laugh at me getting scolded
for what I have been known to give them a hard time with!

there were so many scenes that have stayed with me
and one stands out at this moment

there was a wonderful elder character named Lady Jung
who was named as the Highest Kitchen Lady
as more of a political ploy to use her as a puppet figure
but instead
she ended up being a hugely significant person
a flashback scene showed her
with a group of little girls sitting at her feet
as she sang story songs to them
songs of tradition in a marvelous warbly powerful Voice
of tradition and history and enchantment
the faces of the little girl listeners
were so precious
they loved her as a grandmother
they were all orphans in a way
since leaving their own families behind
or losing their families in other ways

this woman sitting and singing made me cry and cry
she somehow personified the person I wish I could
become
that I could find a song and story worth singing
and telling
the spirit of a grand mother
the tradition of storyteller
reflecting on that in such a personal way

Thursday, October 6, 2011

facing it

looking at the reports of the death of Steve Jobs
from pancreatic cancer
made me face something I have needed to face
the last few weeks have been tough
ok
have I not faced that before

looking at the skinny self of a man driven
with creative passion
on a stage
the world stage
listening to his words
at a commencement ceremony
at a university
speaking fearlessly
about the freedom he knew
from facing his imminent death
and letting all pretense fall away
was to witness a powerfully free human being

he walked on his stage talking of his liver transplant
having received the liver of a young person who died
in a car accident
fighting on
creating on
I just felt so moved
and so sad
and so not wanting to wallow in my own
pity

so, no matter what the course
I am still here and able to see the sun shining
the leaves falling
another day

I have felt guilty not to be up to the tasks
before me
letting things slip through
not even having the energy to reflect here
in words
not wanting to play games with myself
in terms of hiding what I was really experiencing
not wanting to exaggerate it either
facing it squarely
and resting when it was too much

with his billions
Steve Jobs could not buy one more day
he was a year younger than I am
his life affected countless people alive today
and his life and his genius ripple into the future

each one of us has an eternal ripple to make
I have so deeply believed that my whole life
it is an honor to have met so many people
and more to come
complaint is not my favored state of mind and being
acceptance has been my goal when
my physical situation has pushed me into
places that are hard to embrace
as being part of my way

it has always helped me to look at and learn from
the example of others
and see my teachers all around me
when my eyes are focused
when my heart is open
and when my attention is outside of my self

last week I took my second round of the new chemo
it is the equivalent of two tablespoons or less
how could so little cause so much
may it do what it is intended to do
that is my meditation as I allow it to go into
my veins and do the job / fight the fight
I know now why this week I needed to have it off

last week Gary's Uncle Don collapsed
and had to have an emergency operation
to relieve blood clots forming in the brain
and had the operation here in Columbia
we have been able to be with him
and he has just been transferred to a nursing home
out of town....

at one point when I went to visit him alone in the hospital
we were communicating in our way
and I asked him what happened when he fell
fully knowing that his dementia might not
even allow him to remember the event at all
he looked into the air and said:
"When I was a little boy,
we would go outside and fly kites.
They would be up in the air,
and then if there was a big wind, like a storm,
the kites would get caught in the wind
and come crashing to the ground.
It was like that..."
and I sat beside him, amazed at the clarity
of the analogy

his story made me think about storms and getting up
after getting slapped down.
once again
a teacher before me
as he laughed at the next moment
with two big holes in his skull
with zipper stitches
and hair sticking up
and life hanging on

so I look at the mirror of now
and ask myself to please get on with the
new day
in a new way
facing it

Wednesday, September 28, 2011

today is ... today

I was going to title this post
as being the second day of chemo
when I realized that I do not like
chronicling life
always
all ways
in reference that way
surrounded by
so much related to

cancer

so today is simply

today

and it started out by Bryan
driving us to school for the first time
and he did a great job of it
it caught me by surprise that he asked
since we needed to leave early
for him to make up a test he missed
and I didn't exactly get dressed
for the occasion
you see, you have to get into the driveway
at school, pull over, we both get out
of the car
he waves goodbye
I get into the driver's seat
and there is a brief moment
when parents and teachers and students
all "see each other" so to speak
and knowing this
I would usually have at least brushed my hair
how nice to have it still
put on earrings as if that really matters to anyone
and not worn the wrinkly linen pants
that I fell asleep in

well, I looked lovely for Bryan's debut drive
and so today is today
and now is now
looking at the beautiful autumn flowers
that Gary bought for me
from "All of Us" "We Love You - Gary, Brandon and Bryan"
"(Check the Fridge!)"
last Thursday
when it was the first day...
no, on second thought
when that day was another

today

Tuesday, September 27, 2011

making calls

I have two literal minutes before needing to go to work.
(Janet, I want to see you as soon as possible.)
time slips away for me
I lose track and then
I may lose more than that...
trying to reach out
sometimes it is from far away...

Wednesday, September 21, 2011

un-blogcked

just lost a long message
whatever
too many words dancing around what needs to
be said and faced

it has been hard to write
blogging-blocked
this will be sketchy and a bit all over the place...

the other night I got lost going to a friend's
home for a book club meeting
there was construction that threw me off
I got so flustered and unnerved
I got home
that was important

today I found out that my tumor marker numbers
have escalated
and tomorrow I will begin a new chemo treatment
it is new on the market
and so it had to be ordered today
so I can begin in the morning

once a week / two weeks on / one week off
will lose my hair again
I was starting to get used to having it
I am very fortunate to have another weapon/tool
for the arsenal/toolbox

as for other side effects
we'll see as we go along
I tend to not get all involved in the brochures & pamphlets
and read all the warnings that sound like
those horrific drug ads on TV
I read just enough to know what I need to be aware of
in terms of when to contact my doctor for help...

tomorrow Denise is bringing (my) meditation robe
so I can put it on before treatment
it has given others
strength by wearing it
so with their spirits woven into the fabric
I am honored to wear it once again

I made that robe originally for an art show
in Lincoln, Kansas
thanks to my friend Pam who lives there
we had such a great time there
seven of us, right?
in the sunflower fields
so many moments that are as crystal clear
as the crystals that dance in my morning window

Bryan hugged me when we walked in the door
after I picked him up from school
he told me that I was the strongest person he knew
I said that I really didn't feel that way myself
as I was crying at the time

"Mom, you are strong enough to cry in front of others..."
now that is a side effect that I treasure right on the spot

the other day I was reading a lovely book
written in a poem form of sorts
more like a blog actually
written by one of our Home Instead clients
an elderly gentleman who was a doctor here in town

he called his book "The Story of a Marriage: a love poem"
and I was enjoying his words, his stories, the longevity
of two individuals
the longevity of a marriage
and then I got "blindsided"
on page 47
he started to talk about friends of theirs
who started falling like dominoes
from different cancers
and then he referred to a woman friend {paraphrasing}
who we watched collectively holding our breath
when she was diagnosed with breast cancer
for seven years
until bone by bone the cancer took her
and in the end she died writhing in pain...

I thought I was going to throw up
it made me that sick to read those words
a few lines tucked into a lovely tale
that slapped me across the room
with a panic
I forced myself to finish reading the book
I pushed myself down the stairs to be with the guys
it didn't matter what they were doing
just as long as I was not alone
being so scared...

today I talked with Dr. Tungesvik and Denise
about it so I could get it out of my system
he assured me that he would not allow me to do any writhing
and that we had years ahead of us
and he spoke of spiritual things that I needed to hear...
Denise shared with me how important it is to
do the things and be with the people that/who bring me JOY...

I look forward to wearing my warrior woman robe tomorrow
then when the chemo drips in
I will close my eyes
and remember what my wonderful surgeon said to me almost 5 years ago:
"My job is to take good care of you in the operating room.
Your job is to have a good dream."

Thursday, September 15, 2011

poinsettias & strawberries

Gary shares the spotlight
on the topic of lovely flowers
for many many years
the Christmas season at whatever address
officially starts for me when
Gary walks through the door with massive
red poinsettias in hand

he usually gets two, sometimes three
and I am thrilled every time
as if it was the first
I know that Brandon and Bryan
have learned by seeing
especially
how happy it made me
to receive those flowers
as symbols
and I always want them to know the delight
is the loving heart
not the thing given

we have joked over the years that I am
easy to please
not requiring the Lexus with a Bow
or the everykissbeginswithK diamonds
to make a point or be a proof
of lasting heart
hey, sometimes it is good to go all out
no kidding
and I have loved my power tools
and other special requests!

Mother's Day is my other special day
birthday, too, but there is something much deeper for me
as we celebrate becoming parents
the boys' birthday, May 16th, four years apart,
means that Mother's Day hovers around that time
so it is jampacked with remembering and the wonder
of them growing UP

back to Gary's special treatment:
favorites include
the bags of groceries
the kinds of food I love but do not "do" very often
and when there were painfully lean years financially
I remember crying
to see two boxes of huge strawberries...

then the bouquet of flowers
that I rearranged in ever smaller vases
trying to make them last forever
and this year I swear one of the poinsettias
made it to join Mother's Day colors

it's all about the stories
that weave the fabric of life
as simple
as meaning-filled
as delicious
as
cold water in a desert
as
hot chocolate during a snowstorm...

raising a glass and a mug to toast
to the memories
to come

Wednesday, September 14, 2011

sweet ladies & gentle men

Brandon's girlfriend's name is Mahdi
Bryan's girlfriend's name is Olivia

my sons are growing their loving hearts
and they are the most romantic guys ever!

when Brandon was preparing to meet Mahdi at the airport
in Kansas City
he ordered an arrangement of red roses
for her
five roses because five is her favorite number
he figured out a way to transport the flowers
in his car so they would make the trip
it had been a couple of months since he came back
from Sarajevo
and he was so happy when she returned
I was so happy that he wanted to have a meal
here with her - she wanted to be with us
we had a wonderful time together
I was just so moved about the roses...

on Sunday Bryan said that he and Olivia wanted
to go on a picnic
and he wondered if he could use one of my vintage
picnic baskets
I couldn't get my knitting things out of there
fast enough!
we shopped for the food he wanted
and he was really hoping that I had
a traditional red and white checkered tablecloth
like in the movies / old TV shows
and I knew I didn't so

we dashed over to the fabric store
no luck
just a plastic by-the-yard
but it was not authentic enough
we dashed back home so he could have his second driving lesson.
immediately after he left with his instructor
I jumped in the car and went straight back to JoAnn's
grabbed a person there and said:
"look, I need help
my son is a romantic and he wants a red checkered cloth
cotton
I have very little time
so please pretty please help me out..."

she took me to a section and there was something I thought
could work
on short notice
so I bought a yard-and-a-quarter
to make a square
....
a Mexican blanket
a vintage picnic basket
a red and white tablecloth of sorts
and all sorts of good food
and they even had a full moon style sunset

the whole thing was so moving to me
including the fact that Bryan wanted to
"get" a certain tree to sit under
a big ol' oak tree
one that I had taken him to many times when he was young
and he remembered
they had to wait a bit for the exact tree
when people finally moved away from it
they went and claimed it

flowers and picnics
my romantic boys
with their sweet hearts
their sweethearts
living their dreams
some of it like true life musicals

oh yes
and when Mahdi was here for dinner
Brandon told Bryan that he and Mahdi
wanted to go on a double-date with Bryan and Olivia...
I heard Brandon tell him that he would pick them up
so they could all go together
for me, that was a perfect moment
absolutely beautifully totally completely
perfect
moment

they have all been crazy-busy with school (and work, too, for Brandon)
and when the time works soon
they will go out all together
pretty & lovely ladies
best friend brothers, my gentle men...

Tuesday, September 6, 2011

"applied epiphanies"

"applied epiphanies"
I wish I had come up with that phrase!
in a conversation (yesterday) that spanned time and space
and stretched the time continuum beyond mathematical constraints
(my kids say crazier things than this all the time with each other)
the topic came up:

when we have epiphanous experiences
(I tried the get the adjective form of the word, thought I had it right
then spellcheck puts that red squiggly line under what looks like a perfectly
good word, hmmph.)
epiphanious
epiphanatical
epiphanawesomenessness
epiphanassic, ....astic, ...agical, like magical
whatever

when you have an experience that takes you right out of
mundane reality
knocks you around spiritually
shakes up the atoms of resistance to change
blows your mind out of complacency
and this can happen anywhere anytime
not just on January 6th for the Magi

we all have had epiphanies
a significant insight straight past boredom
straight through stupid
way beyond who we knew we were before
we became cosmic insighters

you know something so profound your whole life has
spun on its axis
maybe it was about time, you think,
and there I was at this wedding
it was October
tucked into a cozy backyard
and I cried because Love seemed so beautiful
so simple
so clear
so hopefilled
there was nothing else more real...

perhaps an illness
was part of the awakening
you look death straight in the face
and it is so peaceful and sublime
and then you feel terror
but the epiphany says to you:
"look, sweetheart, you've got a bit more time."
and even if it is only 15 minutes
you make this commitment
this Promise
I am going to change my life completely
the universe doesn't need one more jerk
it needs me to jerk away from my past
and breakthrough to new territory of the soul

I have had epiphanies when I was pregnant
I knew that I was not in charge of the miracle of life
five pregnancies
two children
profoundest sadness
intensest joy
to feel the little heel of my baby stretching us.
to hold a tiny hand that holds on
latching eyes and weaving spirits
laughing and in time
knowing together that we know almost nothing
so it is wide open trek land
adventures for us

I have had epiphanies with people and alone
sometimes just seeing a stranger smile at me
it bleeds my heart
blurs my vision
and there is suddenly no distance between us
a flower
a wave on a beach
a kiss
a glance
words in a book beautifully purely written
simple words spoken in a whisper of wisdom
the sound of a singing bowl
a stained glass window
breaking up the light of day
a crystal in my kitchen window
dancing spectrums of sunrays
from millions of miles away
that made it all the way to my window & eyes
past the trees in the neighbors' yard
for me
my pleasure
in the morning moment
if I am awake

yes, I can feel "enlightened" countless times
and here is the big deal question, I ask myself:
HOW LONG does it last?
I remember being at a friend's funeral service
and internally making notes about how wonderful
she was
and how I wanted to be a better person because of
having known her and having been inspired by her
strength and humor in the face of great pain
I think I lasted about two days

but I thought it would be forever

the intensity does subside
hopefully the essence is retained
I cannot "be her" yet I can apply the epiphany
in my unique style
I cannot be forever young
cannot live in this form forever
yet I can say that I want to forever be willing
and dedicated to changing and to growing

applying epiphanies makes them stick in consciousness
I want to be the one to smile first at a stranger
to actively seek a more loving Way
to recognize those who will teach me
and actively learn

and I will not stand idly by and watch an intrusion into
our peace
of mind and heart

I watched a mother robin spread her wings
during an intense rain storm
using her body to be the shelter for her chicks
with that natural of an instinct
how lovely life would be
if we grew up with
and lived surrounded by
that kind of support and protection

as powerful and almighty as an Epiphany may seem
it is also that vaporous and ethereal
yet the more we act on our visions
not simply theorize and verbalize
the more ingrained and intuitive our responses are

we are not in control of what other people
may decide to sling in our direction
through words or actions
we are not in control of all that factors into
a
day
it is the tiniest enlightenmoment
when acted upon
applied
that defines
me
you
us



"When you want to cheer yourself up, go out and try to cheer someone else up."
~Mark Twain

Ripple Effects 101

Friday, September 2, 2011

solution

for the past couple of weeks I have dealt with
a strange face event - strange phrase for it
not sure if it was/is shingles or hives or what
but these lines
have been obvious and itchy and sore and annoying...
on Wednesday my day off
went to the doctor and have
a new horse pill as Bryan calls it
and cream
and weathered
Back to School Night
with a kind son
much better today
it affected me
mentally as well as physically
need some time away from it to look at it

Bryan and I danced to Frank Sinatra's "New York, New York"
the other night
what a fun treat
surround sound hooked up
and memories of Yew Nork being Bryan's take on where he
and Brandon came from...

Sunday, August 28, 2011

elderspeak

elders speak
in a different tone of reality
I listen
carefully for lessons
attentively for jokes
respectfully because they have earned it
in my estimation & experience with them
personally

when you are 96 and 1/2
and start talking about another of your elder friends
passing away
once again before you
and when your son died when he was only 26
and you talk about him with tears on this day
it was so long ago
he was so painfully young
and your friend who just died
was the minister for your son's funeral
the stories roll on together

I find myself
with an open-mouthed gawk feeling
many times
not believing that I have heard what I have actually heard
somebody else is "pushing up daisies"
or some outrageous commentary on the foibles
of getting old
my hand wants to grab a pen and notebook to capture the words
but it is too self-conscious a move
the words slip through my fingers
as if trying to grasp fountain water
with my bare hands
wondering why I have none to show for the effort.

I do remember this one:

"Gloria, I hope that when you get to be as old as I am,
you have someone as good as you are
taking care of you."

that made for a nice Sunday morning "service"
spoken from a living room chair by an old Methodist
way back when

Saturday, August 27, 2011

East Coast

I grew up on the East Coast
and have family and friends there
getting hammered by this storm
makes me sad and fearful for them

my heart and thoughts are with them
and all the people facing this hurricane

nature has its powerful beauty as well as forceful
destructiveness
ravaging away
one time blasting a corridor of devastation through Joplin
now smashing waves up the coast
churning lives and worlds
and then there is


silence


after the shattering howling screaming winds

the water will recede
the boards will come off the houses

people will go home
to find what remains
and they will be changed in some ways

the morning light will come
I pray that there will be loved ones
to hold hands
to look deeply into each others' eyes
to look for the new day
not alone
the shoreline changes over time
loving bonds are meant to be forever

Tuesday, August 23, 2011

the little things

when Janet wrote in a comment that she liked the story
about Uncle Don and the box of chocolates
it reminded me of the time
writing Holy Moly...
I would write these stories out
and give them to her on paper copies
and they would come back with red and green
pen notations

green was for "green light"
something that stood out for whatever reason
special, especially funny or significant
she laughed or cried (those are the ones I liked to read best!)
red was for a re-think, spell check, clarification
pull in, expand, delete...
I loved looking for the green ink!
she was always gentle with the red

we did that for over a year

it made me see daily life differently
during that process and ever since

the encapsulated moment
the story within a story
engaging the experience to enhance
the power of words, good and truly heartfelt
and the sounds that quiet weaves
naturally, not artificially,
with a consciousness, a presence of spirit

not weighted with a morbid sense of
this may be the last time I see you
but with a heightened awareness
that this is the only time
we will be together in this way:
let's engrave it and wrap it with a signature style
take a snapshot
make a mini-movie
stage a musical, off-key, with no sets
just the cosmos as background and witness

Bryan sang to Olivia today!
there were people all around
it was first-kiss perfect

you can sing in the rain
in the sunshine
through storms
and share the perfect personal moment
in a brilliant way
that eclipses
the sun itself



forwarded & yes

yes, the lovely card with incredible calligraphy
Stephanigraphy came to mind
arrived and the forwarding worked to get it to:
1524 Affirmed Drive 65202
thank you so SO much

this is becoming home bit by bit
day by day
heading out to give away a bunch
and to get some curtain rods
and some other nice necessities/niceties

when Bryan saw the beautiful card
he said:
"Mom, you are going to make beautiful things
like that for your friends
in your new art room, aren't you."
and I said:
"Yes."

Monday, August 22, 2011

Uncle Don's very own box of chocolates

one of Brandon's favorite movies is
Forrest Gump
..."Mama always said: 'Life is like a box of chocolates;
you never know what you're gonna get.'..."

yesterday afternoon we made a little trip
to see Uncle Don (Aunt Dorothy's husband)
who is living in a nursing home in Moberly, MO

we stopped along the way to pick up
a box of chocolates
he is the king of desserts
I swear I could never understand how anyone could
down desserts with such relish and stay so slim and trim!
my jealousy was never hidden

we always exchanged Russell Stover boxes with them
at Christmas
and yesterday might as well have been Christmas
the way I see things

he lightened up when he saw us and a special light went on
when the box of candy came out!
his lucid moments are in and out
well, when I got the box opened
and offered him first pick
it was after all HIS box
he was definitely not interested in looking at the
chart showing which candy was in which little compartment
no sir, no ma'am
he raised his arm in the air
circled it around
looked everywhere else
and plunged into the box
and picked out the one
he was meant to have

the surprise was at least half the fun
we all had our approaches to selecting our chocolates
and I had to pass
since all I could eat yesterday were veggies and meat/fish
definitely not sugar
so I got to watch and be the candy waitress
which was fun
Uncle Don was game for a second piece
and swirled his arm once again
as we laughed all together

never will I see a box of chocolates
without remembering
what may wisp away from his mind
a sweet memory
to be repeated
with a smile and a quiet reflection
on life's profound simplicity

straight talk

it has been a long few days
first time with a PET scan so I learned some things
and ate fewer things for the last couple days

the good news is that the cancer has not spread to
soft tissue organs
the other news is that there has been
disease progression in my spine
in several locations

hence the increased tumor marker numbers

long story shorter
is that we came to the decision to try a new
treatment starting tomorrow
it is not chemo, will be monitoring closely
to see when we need to move to a more aggressive style

for the kind of cancer this is
there are more weapon/tools to throw at it than many other cancers
and yet the reality is that the number is finite
and so how to choose wisely is the name of this very serious game
once a drug is used, and the cancer "figures it out"
it is essentially useless in the future

and the big prize of A Cure for Cancer
is always on the horizon for someone's luckiest day
someday
somehow
somewhere
somebody please do not give up
we are counting on you
for the day when the declaration can be heard all over
the
land:
WE HAVE FOUND THE CURE FOR CANCER

I hope to live to hear that voiced
loud and clear
if not, I will be cheering from the Great Somewhere
Over the Rainbow
beyond the rain, the reign of tears
far beyond the fears...

tonight my son Bryan is singing in the shower
"A Whole New World" from Alladin
to sing for his girlfriend Olivia at school tomorrow
they will sing together at lunchtime when they meet
she is a very talented actress and singer/dancer
and has convinced Bryan to try out for the All School auditions
for the seasonal production of Irving Berlin's "White Christmas"
it is his senior year and he is pulling out all the stops
"go for it" whatever it may be

hearing him sing tonight
singing with him recently one of my all time favorites "Singing in the Rain"
with sweet memories of Brandon and Bryan belting out
"A Whole New World"
together
a year or so ago
a kitchen concert
a spontaneous, loud and amazing combustion of love and laughter
and great voices - I had no idea!
I
am
already
living
over
the rainbow

Tuesday, August 16, 2011

flower girls revisited

flower girls came from other states as well:
that dawned on me early this morning
my apologies & gratitude extended

and speaking of flowers
can you believe that along with lovely flowers
in her room
there are even water lilies
in a pond
in New Mexico!
somehow I think of those exclusively
in lakes in Massachusetts
only accessible if you
row your boat
gently

if you know how to zip around in your wheelchair
you can get to them
in the high desert as well apparently

flowers flowers everywhere
healing wheeling in your chair

(couldn't resist, I used to do that everyday
with Brandon and Bryan, making up little
poems-in-songs usually, getting up in the morning,
on the way to and back from school
it also included making up words
because once you start to rhyme
you have to finish it
no matter what)

Monday, August 15, 2011

flower girls

there are flowers in a room in Albuquerque
lovely and bright with the
love
they were sent with....

thank you, California flower girls, beautiful of you to do that

I was asked to convey the appreciation my Mom feels
we both had some of those warm good tears over the experience
as she described in great detail
the colors, types of flowers, vase and ribbon
mostly the heart

reflections

with courage and grace

my friend and therapist Denise oftentimes
printed out "Daily OM" messages/thoughts
and finally after years of saving them
I decided to sign up and have them sent to me

a Daily OM

today the thought centered on the gray area
we dwell in at times
a monotone existence
a numbing place where emotions are sent away
and are replaced with activities
chosen to avoid really LIVING it all out loud

I do that I know I do

hmmm, History Channel calls me or one of the zillions of Law & Orders
how about spacing out in my thrift stores
I do actually say it to myself that I am zoning out
I do actually tell other people when I am doing it
why
it is an escape
perhaps a refuge from a storm

so many things have happened this summer
it seemed that there was never time to digest one event completely
before another wave came

I came home from work to an empty house today
very hungry so I set about making a meal
and I turned on the computer
at the table
and flipped around and decided to watch
The Royal Wedding
WHAT?
WHY on earth?
I love their beautiful youthful faces
I love the pomp and ideal circumstance of a beginning
tradition has its comfort factor
the choir sings divinity
through the voices of children
it breaks my soul open
and I also liked the trees in the Abbey...

ah and there are more boxes to unpack
far from castles with turrets
as I descend into the mist and fog of an oddly crispy bright
London day

it was someone else's day yet the planet's people
wanted a piece of it
wanted some peace through it
wanted to touch a moment in history
to call their own

no matter the messed up monarchy / we got them off our backs long ago
to the devil with the hypocrisy and the masks
and the very weird and quite artsy headgear
we want a true love moment
a fantasy in lace
and Cinderella's carriage
to take us away, too,
a land of hope and joy and love

I acknowledge my Daily OM's wisdom
and the fact that I am Exhibit A, the Poster Child
for Advanced Avoidance Activities

I laugh at and with myself

tonight I will accomplish something, some tasks
more than that, I want to accomplish
some internal advancement
perhaps read words that will challenge me to be more than
I am

now...

Sunday, August 14, 2011

a certain kind of fragile

that phrase just popped into my head
a certain kind of fragile
I wasn't thinking of any particular subject
it was a feeling that came like a night breeze

I like falling asleep in a hammock
under trees
late in the afternoon
and the evening approaches while you are dreaming
no one is rocking you
and yet you sway

I was watching a Nat Geo special on hulu
and it cut out on me
it was about events in space
and how the earth is traveling
when to me
it seems to be still enough for me
to walk
and get my Tibetan singing bowls from the shelf
and strike them with a wooden mallet
going round and round
the sound amplifying
and swaying
spinning
in the tiny space of
a room with
the window cracked just enough
to let in
some evening coolness
moved into the night

a certain kind of fragile
a certain kind of strength
a special kind of memory
that does not look back

Thursday, August 11, 2011

raw

just lost a long post.
just as well
it wasn't raw enough I guess

driving along together recently
Bryan told me that he liked the way I wrote here
"raw" he called it
he said he saw it as a book but hesitated to tell me that
in case it might affect the rawness of the way I write
not to worry
no other way now
no turning back
I am glad he likes the "titles" of the posts
this one you named, Bryan

the move happened
we are all still shell-shocked is the best way I can describe us
it is like I can't even talk about it yet...

intense points of goodness, togetherness, frustration, exhaustion,
laughter, sweat, so much sweat in this heat wave
I proved when I was really young that I could live
from what I carried in a backpack:
WHAT HAPPENED? they asked me...
now it is drawer by drawer, box by box to a new place
physically to call home
mentally & emotionally to feel home

"a giving legacy" would be a nice topic
for an article, I thought as I contemplated where I could donate
mountains of books and stuff that threatens to swallow me up
yet would become usefully/joyfully-employed if sent on their merry way
I need to find this peaceful happy place to operate from
a Land Away from how shell-shocked we all are now

my mother is also in a new home, temporarily, in Albuquerque
she fell and broke her hip about two weeks ago
and is now in a wonderful rehab center
called The Good Samaritan - Manzano del Sol - translation:
Apple of the Sun
even the name makes you feel happy, you know?
step by good step...

yesterday I got a call letting me know that my tumor markers are up
spiked in the last month
hard news
will hear today about tests and dates etc.
I have been off chemo for maybe seven months
it takes about 18 months to leave the side effects completely behind
I have not had that experience in five years
without sounding like a whiner
it is like being told that after starting to taste the
light of day
it is time to wire you up again
and go back into a haze
a cave
and you know it has to be that way
and I accept it
and I am grateful
yes I am
and I am also afraid and sad about it
I will do the tests
and wait that endless wait for the results
put on a shirt that stretches at the neck
so they can access my port
and accept with a gracious mind
the liquid-fighter
that buys me more time
the best side effect is:
being alive
I will say it over and over again as I descend into a fog
that I will mask as best I can

we will see
perhaps we can buy a little more time with
another treatment
once we figure out what is going on.
It is always about "team"
for me.

thank you, my teams
I cannot stand alone
only together

Monday, July 18, 2011

boxes & more boxes & nesting

Home Depot has a god deal on moving boxes
and they are being bought and used around here
small-med-large
so much "stuff" to prepare

we will be moving with the actual mover-guys
a week from today
I had to sit here for a number of minutes to try to figure
out what today is first
and then when we actually MOVE
oh wow
time is way past my grip
the other day I took a seven-hour nap
before sleeping seven more hours
things just caught up with me
and I let my exhausted self
rest
and that is just the truth
the bigger truth
perhaps has a lot to do with sadness
and a myriad
of emotions
that have come to the forefront
unnoticed
at first...

open the floodgates
and let the river run, dear me,
watching and wrenching
sometimes hiding

I'll have an energy-burst
and fill up the Escape with let-go-ofs
whether donations-or-gifts-or-some other form
of good-bye
it was very enjoyable at first
then I became a bit numb
and went through motions
so the fun factor needs to be invited back
into the process

finding strength to
build
home
once again
a refuge
walls defining space
taking forever inspiration
from my beloved birds on wing
a nature's nest of a place
where you know it is all temporary in the cosmic realm
of an extremely simple reality

my friend Susan Taylor Glasgow created a Communal Nest
made entirely of Glass
it is lifesize to humans
and there is a chair in the center
as fragile as glass is it is also that strong
the nest travels the country
and the shipping of pieces and installation of glass branches
is an enormous task
she does it over and over again
and gives viewers the gift of contemplation

I want to make another branch for her Nest...
Bryan and I made one years ago by taking an actual
tree branch, whittling down to the lovely maple color
completely wrapping it with strands
of tiny clear glass seed beads
it took a long time to do that together
and that is a nesting memory of
time well-shared

Thursday, July 14, 2011

college life contrasts

Friday is the day we go to Mizzou for Scholars Day
Bryan received an invitation
and I was able to get the day off from work
so we will be able to spend as much time as we want

it will be interesting to compare and contrast with our
experience last week at a much smaller school: Columbia College

the Honors College at the University is like a small college
within the huge University
we will learn a lot for sure

if either Brandon or Bryan want to go to school out of town
or state or country I want them to go forward and see what we need to do
to make it work
now we are talking about studying overseas for some part of
their college experience
again, we will work it out
and I believe we can do it
working hard
working together
vision in action
vision forward
building one day at a time
designing a course for learning that includes
VISION
PASSION
HOPE
DESIRE
DEVELOPING AS A TOTAL HUMAN BEING
[getting those good grades! sure does help (smiley face)]
I respect them so much for making that effort for their entire school-lives

...into this day ahead that opens another door

spelling error & quick definition

last post:

strange to wake up and one of the 1st things to enter my mind:
I think I spelled a word incorrectly:
disfunctional / dysfunctional
as if it matters really
I was dissing the functionality

and when I called a certain aunt (who passed away many years ago)
in my husband's
ex---t---ended family
"crazy"
I should have embraced that word with quotation marks
and given credit to the person who called her that: her one & only child / son
it was not my call to make, whether she was crazy or whatever; I hardly knew her personally
I knew OF her mostly
a distinction (dystinction?) worth noting

it was stunning to me
there we were, a collection of people with varying degrees of connectedness
interacting
opened by the event of losing a dear person suddenly
and up walks a man I barely knew and he said:
"Gloria, my mother was crazy and she put things into my head
that were just not true. It took me a long time to realize what she did
to me
and to our family.
I regret not having spent time with Aunt Dorothy before she died.
There are a lot of waters under the bridge..."

I am his cousin-in-law let's say
he wanted to express many things to me
and being the "out-law" appeals to me

I mostly listened and cried
he needed to talk and I had plenty of room to accept that responsibility
that particular day...

I prefer the huge old dictionaries to online ones
the huge paper ones make you search for the word you want
and I always learn new words getting eventually to the one
I started looking for

hmmmm the difference between "dis-" and "dys-"
the Latin the Greek
blow the dust off the crazy humongous Webster
in the garage
when I take a break once I get moving on the moving...

Wednesday, July 13, 2011

barefoot wandering

I think I am in a bit of a trance
trying to figure out where to fall down and fall asleep next
today we did med kind of errands for Bryan
and also dropped him off for a day of tennis camp
with his brother as one of the teachers
so I needed to pick him up, too

got some things done in the way of cleaning and packing
get very tired in the heat and stress of the mess of it all
and found myself falling asleep later wherever I happened
to crash
was so embarrassed when Brandon came by to deliver another
of his loads since he is needing to be out of his apt by Thursday
and he is temporarily camping out with us in the midst
of it all
he brought a friend
and I woke up to his voice not realizing we had company
and I was so disoriented
I was sleeping in Bryan's bed since it was the quietest place
at the time
so there was this spaced out Mom
crawling out of the netherotherwander world saying hi
to his friend as I try to get one slipper on
having left the other one in the other room
because of a mosquito bite on my big toe...

apologizing away
I am sure I was not an impressive sight
so there I am trying to find earrings as if that is going to
HELP
oh brother
what a mess
might as well be funny otherwise it will be scary, sad and
rather pathetic

we are all still adjusting to our experiences the other day
with the whole graveside service
and missing one we have loved for a very long time

a crash course in family-restoration-at-the-funeral 101
when someone has to die before people can live
with each other
declaring that one crazy person screwed up relationships
for many years
and she had to die years ago to set her own son free from
herselfishness and judgmental attitudes...
so Gary gained back his only cousin in this world
they could finally meet as men
in front of a coffin
and many stories were told that day
and telephone numbers and addresses written down
on the backs of Memorial Cards
saying when Dorothy Jean Johnson Jenkins was born
and died
and the date was marked when the family
that disfunctioned for so long
functioned a bit better

I immersed myself in the process as much as I was invited to
and I invited myself in when it seemed right
what is there to lose?

my own father waited until his last gasping breaths
to say what needed to be said over a lifetime
when something is so broken and smashed as our lives were
a few words at the very end seemed so
nothing
they were self-serving words
and I did want to believe them
only to be proven gullible later
I thought the hitting would end when he died
he managed to hit me after... one last time

deathbed confessions
family reunions casket-side
I'll try to find value anywhere I can
but bloody hell
let's get it together sooner than later why don't we

being stretched is perhaps not the best time
to write
stuff happens and I let it out
without regret this time

still barefoot
strange choice of earrings
I looked in a mirror a while ago
and had to laugh
and actually liked my craziness
whether Brandon's friend ever shows up here again
we'll have to wait and see
but I will make sure he gets the message that
he is always welcome
even if I look like a "hobbit" (thanks, Brandon)

Thursday, July 7, 2011

holy (whatever)... when all is said and done

as I was writing Holy Moly Mackeroly over ten years ago now
I oftentimes thought of how satisfying it would be someday
if I could time it just right
to write it all out
to the marrow
strip every word and thought down to its essence
to find the simplest truth
know it because I live it
and then just say it

when all is said and done

what a privilege to have written a couple of books
that touched a few lives along the way
the first was a compilation of stories that I felt absolutely compelled
to get down on paper before turning 50
done deal
such long pages
so many words
any professional editor would have taken a chainsaw to it
and trimmed off half
at least
I didn't want that then

the second one
the words were tighter
and my hands did most of the talking

the dvd with Creative Catalyst
was like the rush of a wave
like a race against time
to get it all down
fill in the cracks of what came before
and then as soon as I returned
a blur......... and it is almost five years later

when all is said and done

my days and moments are tied into a woven dichotomy
that juxtaposition
of grateful to have the medical tools and physical strength
to live a 2nd life
or a 3rd or 100th depending on the definition
and seeing natural lives completing themselves

the beauty and agony of youth
cause my heart to beat and break me open
I watch
in wonder
in pain
in celebration
in acceptance
not in resignation
but in knowing

that when all is said and done

I love
therefore
I am

Wednesday, July 6, 2011

homemade apple

it has been a very long day of long telephone calls
and visits to take care of details involved in
the "no hullaballoo" service
I can't imagine what a fullblown extravaganza would be like
to bring together
it sure can be complicated to keep things simple!

I am happy to help
there is never an especially "good" or "convenient" time to die
right now does seem like an especially good and convenient time to live

Bryan slept only two hours last night / restless like I was
he got up very early and went out for a walk
that became a run
and an adventure with nature
and his own inner being
he was listening to music and realized that the songs
he had been playing recently were actually quite sad
so he switched it up
and played a song by the group Plain White T's called Rhythm of Love
and it cranked up his mood to great heights

if I got the group name wrong oh well, but I think I got the song title...

he experienced the joy of defining life on his own terms
he looked in all four directions at one point
ran into the middle of an intersection with no cars anywhere to be seen
and jumped into the air and did a 360
he talked with little critters he met on his 6-plus mile walk/run
before most of the city was moving
and found a freedom and power that he delighted in recounting
for me and later Brandon and Gary
never tiring of repetition
because it was actually newer and deeper each time he told it

his first heartbreak has just happened
yet his heart is stronger than ever
because he decided to live forward

my children, my teachers

oh, and the reference to "homemade apple"...?
that is the name of the font I used for the script for "my 2nd life"

Tuesday, July 5, 2011

an honor to love her & be loved by her

late this afternoon the phone calls came
I didn't understand for some time what the quiet words
were about
Gary's aunt passed away today or perhaps last evening
and I miss her so much already
her loving husband of many many years is slipping away
into the mist of Alzheimer's and she was his CareGiver
protecting him
we missed seeing them this last Christmas

from Brandon's very first Christmas until this last one
the boys have received beautiful Hallmark ornaments
as part of their Christmas gifts

she loved sending them and asking how they liked them
and we would carry on about how many we had
each year more and more, over 60 now I believe
there were years when she would send extra ones
and then when they were older and she wanted to make sure
they got exactly the ones that had meaning for them
even when they were Darth Vader (!!!) or Spiderman
she was on board and placed the order with her local
Hallmark shop in Mexico, Missouri

Don and Dorothy did not have children of their own so Gary and his sister
had a special place in their hearts
and our combined four children were like adopted grandchildren
in a quiet way

but it was never quiet at Christmas!
one year my mom was here from New Mexico and saw them in action:
Mr. and Mrs. Santa Claus of the Midwest!
she made countless delicious cookies and knew all of our favorites
so tons came
and box after box of food treats, 10 kinds of cheese,
rows of boxes of crackers,
chocolates and yummy homemade-by-the-Amish candies
candles, usually some kind of crystal or clear glass piece for me
to add to my collection from her
and always surprises

one year it was the biggest barrel of cheese balls on earth
from the little boys' point of view!
she loved to see them laugh and jump up and down with delight!
she loved hearing that we didn't have room in the frig for everything
she brought, so we stuffed and crammed and carried on laughing
and munching at the same time
it was this generous spirit of abundance
it was giving with abandon
watching Uncle Don playing with the kids and enjoying their toys
as if he were young again made her laugh so hard

she was teaching the boys her way of creating Tradition
no words of instruction needed
this past Christmas did not sparkle as bright because they could not come
we tried a number of times to deliver our gifts to them
but they were cocooning I feel
and as much as we missed seeing them
we could talk with them on the phone and she of course sent the
loveliest anniversary card to us
the last card we will receive from them
and her handwriting is as strong and pretty and giving as always
just a handful of days ago...

this evening I had a bit of time and used it to go to the mall
and find a few Hallmark cards as I reflected upon her impact on my life

the new Christmas ornament booklet has just come out!
I could hear Aunt Dorothy's voice telling me that it is time
once again
so I picked up one of those catalogs
and will ask Brandon and Bryan to please pick out
their favorite ornaments once again
in Memory of one who loves them
so unconditionally it feels like a Christmas afghan blanket
wrapped around snuggly warm

the strong hugs she gave made me safe
everything would be alright
we will have a wonderful Christmas day
we will have fun food to last until April
there will be cards in the mail for every holiday
St. Patrick's Day included even though none of us happen to be Irish
but hey it was a chance to find cute cards and slip in some "fun money"
and wishes

I miss you, Aunt Dorothy
I love you and thank you for loving me and all of us unconditionally
we will find the ways to take good care of your good Don
there are good friends and family in your life working on that
right now
and there will be quiet goodbyes made
"no hullaballoo" for you
as you made very clear!

reflecting on life and death this evening when we were
all here together hearing the news and receiving it and responding
in our different ways
I learned so much as much came out

her living loving pulsing example will always be a standard of heart
I want to learn from
genuine, genuine through and through

design

a desire came upon me to play around with the design of my blog
anything to do with "playing around" on the computer
beyond what I know
which is very little
is essentially unheard of by me in my own head with my own ears

I have watched Gary and Bryan over the years
with their experimentation, fearless pursuit of what might happen
if they keep going deeper wider closer as if jumping down
Alice's rabbit hole enjoying the ride especially
the part of not knowing where they might end up
what bumps along the way
yet very confident that the process will lead to something
NEW

instead of asking one of them to help me re-design here
knowing that I wanted a change
not any particular idea of what
I just started pushing buttons
that had words like "design" and had pretty color choices
and interesting fonts

I had to laugh at myself when I didn't even know what
anything at all was called when it came to labels
oh, that is the this-and-that, ok, so maybe that is the so-and-so
no, but it's interesting, hmmm, well, that set of colors
makes that happen, etc...

and so after a long time that went by faster than the clock indicated
I came upon a very simple look that looks like I want it to for now.

maybe it is chalk on the blackboard of life?
perhaps just the clean lines of black and white
simplifying
such a complicated intense time for me recently

de-cluttering on here when I am also de-cluttering the rest of
life around myself
hopefully it is not hard to read

it is funny to me to look at this now
me, the one who loves the colors of Mexican weavings
and yes
the essence of Japanese brush paintings
those contrasts dance in me

and so I pick up a white piece of chalk
and write simply
strip down the words
strip down my distractions
strip away old paint
leaving some wood exposed and rough
putting a new coat other places

always in search of the genuine

a touch of turquoise here and there on this new "canvas"
silver finger nails if you can believe it
hands and head finding new expressions
gradually setting aside the fears of
what if I mess this up

guess what
it never mattered
I gently remind myself
play like a child

and I always loved chalkboards
when they were slate, or tar, and now a screen...

Monday, July 4, 2011

watching a fighter

I never thought a certain friend would ever
ever ever have to deal with cancer
she is just too strong
too positive
too vital
a kind of energetic spirit
I could go on and on
and when I visited her at her farm
there she was with her great smile
and fuzzy new chemo hairdo with a bandanna (sp?)
to deal with sweat not a way to mask
her sparse cute hair

she is sporting a new vitality
power
it is different than before
her face is lighter features-wise
I think when we lose our eyelashes and brows
or they lighten up some
also our skin has a kind of transluscent look
I see it sometimes in the faces I pass by
as we go down the halls and mazes of the cancer center

her creativity knows no bounds
and she has bounded back with a vengeance
that I marvel at

it is hard not to compare
and wonder why why about many things in myself

it would be best to gain inspiration
rather than judge myself...

I noticed she was wearing beautiful sparkly earrings
different than what I had ever seen her wear before
they are a gift from her daughter
who wanted her mom to have sparklers as a reflection
of her vast love and admiration
it was wonderful seeing them together
talking about the meaning they placed upon the gift

it was wonderful being on their farm
signing a box which is a gift for my son Brandon
(I placed my order for these before her diagnosis)
made from wood that came from an old Boone County barn
another part of the same barn that Bryan's box is made from
I have wanted this for years
boxes made by Carolyn Linton
from Boone County barn wood for my treasure-children
she is putting the finishing touches on
the coats of hand-rubbed wax from England I believe

her daughter was beside herself excited to hear
me say
that this move we are making has opened me up
to my desire to create "things" of art again
her daughter shared with me stories
of how we met and how small pieces of my artwork
from what feels like another lifetime ago
grace her life...

that was very moving to me
and I smiled to think of the artwork of my friends
that grace my life
a lovely turquoise handbag and fabric fortune cookies
tucked into a Chinese takeout box
so perfect and so loving
and my gratitude spills over

Saturday, July 2, 2011

affirmed & closer

yesterday we reached our 29th anniversary mark
it was funny, because the reminder was that we were receiving
anniversary cards, that clued us in
time has warped, and I find myself enveloped in the moment
sometimes in excellent, paying attention mode
other times so intensely wrapped in bubbles of
concern that I cannot see the ground under my feet
remember the year when it is important to
and then use an extreme amount of focus
to climb back into today
from somewhere else...

so, almost 30 years being married
we had to laugh when it took a few moments to
realize the actual date
my attention has been on trying to find a new home
appointments that need to be made & kept
from haircuts to college visits
oh yeah, laundry
and then checking and checking to see how things are
going with the house
and Brandon is needing to find a new living scene as well

and we are close now
just heard a short time ago that the house we hope for
is now under contract with Gary's sister!
Things are moving along, a new place is closer
I wrote about what I was experiencing the other day
here in blogland
and it was zapped
perhaps it needed to be

I find it interesting that the name of the street
that we will move to is called Affirmed
named after a great horse-in-history I presume
with all kinds of other equestrian things going on
in the neighborhood
Affirmed is a good word
affirmations are significant statements
both internally and verbally

this morning I worked and my 96 1/2 year old gentleman
affirmed my value in kindly direct ways
thanking me for making his life more comfortable and fun
we have these talks that I enjoy and wish I could
record in some way!
I teased him a bit about that today:
"I ran to the kitchen to get a paper and pen so I
could capture a quote of yours and then
I was trying so hard to remember and then my own words
crept in and I lost it! I want to write a book
of 'Lee's Words of Wisdom... in the trenches of real life'
a real long life..."

I just now realized that I have been married longer than not married
29 years married / 57 years old
having time with Brandon and Bryan yesterday and this weekend
is very special
good to laugh and hope
just good to be together
whatever is going on

getting closer

Sunday, June 19, 2011

putting more things in motion

I have an aversion to the phrase
"putting your affairs in order"
I am sure to have spouted my opinions on the topic
before
car loads of donations make me happy

Bryan and I went to Access Arts with some more
art things: an easel, box of wood pieces of all kinds,
a crazy-cool bunch of frames
and the staff was there thanking me
and asked if we would like to see where
my workbench with the power tools was placed
you bet we would
so we went to the building next door which is the workroom
there it was in a new home!
and I saw that it was already being used - the grin felt good

a set of wood cubes we brought
will live in the new Gallery with lovely pieces of pottery on them
for sale to raise funds for the great work of Access Arts...
some old shutters may become display units for lovely woven pieces...
they like to ask me what I had envisioned for the things I donate
apparently, my eyes tend "to sparkle" when I get on my roll

I can still hear the sound of the Dremel scroll saw
and the Delta belt sander
I can smell the wood shavings
and I will not miss cleaning up after using the tools!
I am so happy to hear that my huge paper cutter
is cutting paper all the time
not collecting dust

and so more things need to find their new purpose
as they pass from my hands to another's
it will be fun to see the new creations from
my tools
of the trade
it makes me want to sign up for more classes there for sure!