Stand By Me (Ben E. King)

I am back at my mother's house north of Atlanta, arriving this past Tuesday and intending to stay for two weeks - she has declined substantially (pulmonary fibrosis) since I was last here in late-January...

Internet has been spotty as well as slow and frankly, I am exhausted - the physical I don't mind as it is a joy to help mom in whatever capacity I'm able (make meals, do chores and just generally be the step-n-fetch-it girl by replenishing her ice water, bringing her items from another room of the house, running errands). The emotional drain is another story - it's hard for one's brain to process the inevitable, even if that's where the path is ultimately leading...

Yesterday was most difficult, as I drove mom to her doctor's appointment and we received some honest answers to some hard questions - mom asked about a lung transplant and there is a cut-off age of 65 (mom will be 79 in September). She also asked how long she had and the doctor honestly told her she seems to be at the beginning of the final stage of her illness - right now everything is designed to keep her comfortable. If mom thinks she feels better from the Prednisone, then the doctor was fine with increasing her dosage - she also gave mom "permission" to turn up the level of her oxygen (which she's on 24/7), but that's a terrifying thought for mom, since it's already at 9 (and 10 is the highest)...

Mom told me she's not afraid of dying... but she does fear not knowing what comes next... and whether or not each struggle for breath will be her last - the doctor assured her that, when the time comes, mom will know and we will call in hospice, where medications will be administered to calm her breathing and ease her anxiety. It was always assumed that, as it got closer, mom would move in with my sister - now I'm thinking I will extend my stay, or leave and come back, in order to ensure she is able to transition from her own house. My brother and sister are coming over Monday for a Memorial Day family gathering... and we will have an in-depth, brainstorming conversation at that time - we are retaining hope... but we are definitely at a crossroads. I just ordered (overnighted) the book I reference below... and will receive it tomorrow - I want to do my homework and be as prepared as I possibly can...

As soon as I finish writing this, I will send out the link in an e-mail to various friends who are holding their own vigil for mom... and for me... and for my family - thanks to all for continued thoughts, prayers and purple candles...

P.S. I am trying to take care of myself along the way as well - went to a seniors aerobics class with one of mom's neighbors this morning... which was equally humbling and inspiring (I want to be Frances, 88, when I grow up... still moving, smiling and living life to the fullest... :-)

P.P.S. Thanks to J for the poem...

SONG: Stand By Me By Ben E. King

BOOK: The Needs of the Dying: A Guide for Bringing Hope, Comfort, and Love to Life's Final Chapter by David Kessler

POEM: Invisible Work by Alison Luterman

Because no one could ever praise me enough,

because I don't mean these poems only

but the unseen

unbelievable effort it takes to live

the life that goes on between them,

I think all the time about invisible work

About the young mother on Welfare

I interviewed years ago,who said, "It's hard.

You bring him to the park,

run rings around yourself keeping him safe,

cut hot dogs into bite-sized pieces for dinner,

and there's no one

to say what a good job you're doing,

how you were patient and loving

for the thousandth time even though you had a headache."

And I, who am used to feeling sorry for myself

because I am lonely,

when all the while,

as the Chippewa poem says, I am being carried

by great winds across the sky,

thought of the invisible work that stitches up the world day and night

the slow, unglamorous work of healing,

the way worms in the garden

tunnel ceaselessly so the earth can breathe

and bees ransack this world into being,

while owls and poets stalk shadows,

our loneliest labors under the moon.

There are mothers

for everything, and the sea

is a mother too

whispering and whispering to us

long after we have stopped listening.

I stopped and let myself lean

a moment, against the blue

shoulder of the air. The work

of my heart

is the work of the world's heart.

There is no other art.

QUOTE(S): "My mother is a poem I'll never be able to write, though everything I write is a poem to my mother." ~ Sharon Doubiago

"A mother understands what a child does not say." ~ Jewish proverb