Tuesday, July 31, 2012

I left my boys in Hilton Head and returned to Sophie and The Husband -- and the human weather -- in Los Angeles. This is only the second time I've refused to schlep with Sophie to the east coast, but it's difficult on nearly every level. We yearn to be a family like everyone else in my extended family -- a family that can pick up with relative ease and just go. Oliver cried when we left The Husband and Sophie last week, and he cried, again, when I left on Sunday to return to them. Why can't we all be together like everyone else? he said. My parents are disappointed that I didn't do so this year, as we celebrated their fiftieth wedding anniversary and took another family photo (into which The Husband and Sophie will be photo-shopped), but I just couldn't do it. Everyone knows the sacrifices and modifications families with disabled children must face, but this might be a silent one -- doing what is practical in the face of a nearly existential sorrow, acknowledging what is fact and accepting what will never be.

The boys are busy with their cousins, the beach, alligators and bicycles. The Husband is working so that we can all live as we do. Sophie is at Communicamp each day this week, which I'll post about later, and I am at home, sitting in the silence, both grateful for it and longing for its opposite.

Monday, July 30, 2012

Waxing Gibbous

Waxing Gibbous Moon (more than half-lighted, less than full)

Who am I kidding?

I'll never post about the puzzle of family, the pull and the repel, the warmth and the isolation, the un-bloggable. I'll post instead about the moon, shining its cold, beloved light into my airplane window in the early hours of the morning and the one paragraph in a short story by Junot Diaz that set me back to a night long ago, a memory that pierced me and through whose tiny pinprick hole came despair and gratitude in equal measure, more than half-lighted and less than full. I wrote the memory down, the beginnings of a larger story:

The ring came in a little box, a coat of arms, a crown, a tiny bed of velvet. His mother had worn it before, or not. He was the second of the four sons, the first to marry. She always felt as if she were floating when she was with him -- floating through a forest near Mark Twain's house, a forest like the fairy tale, despite the thick undergrowth, his lightly drunken laugh. He dragged a guitar. She felt as if she were floating or, rather, drifting away in a small row-boat, the oars placed carefully inside, no effort and aimless after love on the white sheets, the air-conditioner humming, the smell of strange meat that the Laotian refugees cooked in the house behind them. The bed had swayed then, the growing distance between them an ocean as placid as the unsuspecting smile on his face. After he gave her the ring and they ate their dinner, they had floated down the road, their car enveloping them in silence. They held hands over the gear-shift, the new ring sparkled, floating reflections from the headlights of passing cars. The two people who trudged along the highway appeared to have just floated in, too, pushing a small stroller, the baby on the woman's hip, its blonde curly head buried in her shoulder. 

We have to stop, she told him, lifting her hand from his, his own down-shifting as they slowed and she rolled down her window and spoke to them, her words floating out into their open, surprised faces, white in the night air.

Sunday, July 29, 2012

Last day at the beach

I'm flying home tonight, leaving my boys with the rest of my extended family in Hilton Head.  I'll tell y'all all about it tomorrow and catch up on what I've missed the past five days in your parts.

Saturday, July 28, 2012


Let the Day Go

            who needs it
I had another day in mind
something like this one
              sunny green the earth
just right having suffered
the assault of what is called
torrential rain the pepper
the basil sitting upright
in their little boxes waiting
I suppose for me also the
cosmos the zinnias nearly
blooming a year too late
forget it let the day go
the sweet green day let it
take care of itself

Grace Paley

Wednesday, July 25, 2012

What's certain is what's uncertain

It's been my habit of mind, over these years, to understand that every situation in which human beings are involved can be turned on its head.  Everything someone assures me to be true might not be.  Every pillar of belief the world rests on may or may not be about to explode.  Most things don't stay the way they are very long.  Knowing this,  however, has not made me cynical.  Cynical means believing that good isn't possible ; and I know for a fact that good is. I simply take nothing for granted and try to be ready for the change that's sure to come.

Dell Parsons, in Canada by Richard Ford

Happy Birthday to Henry

Light of my life, sweetest and now most handsome boy in the universe -- happy birthday, our Henry. Happy Birthday to you.

For other Henry birthday posts, see HERE and HERE.

Monday, July 23, 2012

Facebook Snafus, Gun Control, Switzerland and the The Husband

Switzerland, 2007

I've been called bitter, unhappy, unpatriotic and pompous because of some comments I made about gun control and America yesterday on Facebook. I was also defriended by one of my cousins because of it, so I think I'll take Denise's advice and blog about it.

Oy vey.

Bitter? Well, I'll concede that I feel a tad bitter about the difficult times I've had negotiating for care for Sophie, for medications that cost less if I get them illegally from Canada than legally through my insurance company that has jacked up Sophie's premium more than 150% in three years. Bitter actually might be too mild a term for what I feel about the way this country handles healthcare and the insurance industry. As an overall characteristic of my person, though -- well, I'm not there, yet, thanks to daily meditation and the support and love of family and friends.

Unhappy? Hmmm. What the hell does it mean to be truly happy? I'm certainly not happy all the time and am distinctly unhappy about many things, but I try to do something about the things that make me unhappy. I think if someone knows me well, unhappy wouldn't be a term they'd use to describe me. I'm too much of an idealist to be unhappy. It does make me unhappy, though, that I can't have a heated discussion on Facebook with a first cousin without it degenerating into personal attack.

Unpatriotic? I was born an American and didn't work my ass off to be one. I didn't swim shark-infested oceans or dodge tyrants from the left or right. I believe it was sheer chance that I was born here and not some other country, and I'm grateful to be a part of such a vast, crazy, diverse and free place. I like ice in my drinks, movies, popcorn and peanut butter, all things that you're hard put to find in such plenitude elsewhere. I think our national parks, particularly Yosemite, are the greatest places on earth. Do I believe America is God's gift to the world? Absolutely not. Do I believe America is the best country in the world? Absolutely not.  I'm grateful that my parents and their parents worked incredibly hard to give me the life I was born into. I'm grateful that I can speak openly as a woman in this country, that I can be in charge of my body, that I can choose to worship or not worship as I please. I'm grateful that our country is organized in such a fashion that I can go to the poll-booth and vote without getting killed, that I can rely on the country's military to protect me from imminent danger. I'm grateful that I get some financial aid from our government to help me with respite care for Sophie and my boys. But I'm an integral part of this country as well and grateful for the opportunity to give back with my own tax money, not only to pay for this military and many of the services that make our country a great one, but also to help those less fortunate. Do I believe I'm a human being connected to other human beings, regardless of where they were born? Yes, I do. I'm not sure if that makes me patriotic or unpatriotic, though.

Pompous? Well, I'll cry mea culpa on this one as I do have the tendency to condescend and my tongue is as sharp as a scythe. I'm working on it. When my son Oliver acts like a crazy person as a catcher on his baseball team, I wince and think he's a chip off the old maternal block. I even think the word asshole. Other people just say they like his passion. If I could learn to express my passion in more constructive ways, I'd be better off, as would those on the receiving end of my pontifications.

So, where does that leave us?

The Husband has been privy to the snafu on Facebook, and unlike a good Swiss, he's not been neutral. He rolls his eyes at Americans and their passion for guns and violence. He thinks the NRA is a repellent organization, drunk on power and a tired, irrelevant history. He's lectured me on the real reasons the Swiss all have guns when they're twenty and ammunition, too. He is a sharp shooter and participated for many years in the Swiss bicycle calvary. He hated every second of it, as his father did before him. The Husband is extremely knowledgeable about his country and loves his heritage no more or less than his life in this country. That's one of the reasons, I suppose, that I married him. You know -- all that John Lennon imagine stuff, imagine there's no country, no one to kill or die for, I wonder if you can.

Now I'm off to make some Hallelujah Cake, distinctly American for the Swiss Husband's birthday.

Veil Gluck zum Geburi!

Saturday, July 21, 2012

I feel like my brain is being sucked out by a vintage hairdryer

  1. Why did I argue on Facebook with some members of my family about the Second Amendment and gun control laws?
  2. Why did I bother when I knew perfectly well that their beliefs are nearly antithetical to my own?
  3. Why did the shooter in Colorado have no problem buying more than 6,000 rounds of ammunition for his guns?
  4. Why is there not unequivocal agreement that the above is INSANE?
  5. Why was it easier for that guy to buy his guns and ammo than for me to petition my private insurance company to add an epilepsy drug to the formulary so that I can afford to give it to my disabled daughter?
  6. Why don't I feel nearly as much terror about what happened yesterday in Colorado than in the newest statistics about global warming?
  7. Why do people believe the NRA to be anything but a powerful business conglomerate interested solely in money and power?
  8. Why do people insist that owning a firearm gives one the ability to defend oneself? From what?
  9. Why is everything couched in military terms? 
  10. Why don't I feel the same warm, fuzzy feelings about American "liberty," "freedom," and "values" as my relatives?
  11. Am I a bad person for not thinking like them?
  12. Are they bad people for not thinking like me?
  13. Why are Christian conservatives so afraid?
  14. Why am I not afraid?
  15. Why do I get called a "libtard" if I question American exceptionalism?
  16. Why in the recent spate of mass shootings did no one fire a gun in self-defense if this is an argument used by NRA types? Surely one or more of the nearly 50% of Americans who own firearms have been bystanders in the recent spate of killings.
  17. Why is the United States ranked fourth in the world for murders by firearms after South Africa, Columbia and Thailand?
  18. Why is Switzerland, with such high gun ownership rates, such a peaceful country?
  19. Why does Switzerland's populace feel that since they are a wealthy country, it's their duty to protect the most vulnerable (the disabled) from birth to death?
  20. Why do Americans believe that protecting the most vulnerable is tantamount to socialism, one of the world's greatest evils?
  21. Why do people insinuate that I should just "love it or leave it?"
  22. Why don't I just move to Switzerland?
  23. Why does the United States account for 5% of the world's population but 25% of the world's incarcerated population?
  24. Why does posing these questions incite others to claim moral superiority over me with their faith in the status quo?
Reader, I'm certain you have answers to some of these questions and perhaps even some questions to add. 

Please do.

Friday, July 20, 2012

Summer, Day 32

I refuse to show you me dancing to Apache, but trust me: I'm good.

Walking out the door

What She Was Wearing

this is my suicide dress
she told him
I only wear it on days
when I'm afraid
I might kill myself
if I don't wear it

you've been wearing it
every day since we met he said

and these are my arson gloves

so you don't set fire to something?
he asked


and this is my terrorism lipstick
my assault and battery eyeliner
my armed robbery boots

I'd like to undress you he said
but would that make me an accomplice?

and today she said I'm wearing
my infidelity underwear
so don't get any ideas

and she put on her nervous breakdown hat
and walked out the door

Denver Butson, Illegible Address

Thursday, July 19, 2012

Boy Scouts and Chicken

Norman Rockwell, c. 1940

The other day I posted about the Boy Scouts' recent ruling affirming discrimination against homosexuality and received so many interesting comments. I was struck, in particular, by one that mentioned the BSA is perhaps more fearful of pedophilia than of homosexuality and have conflated the two. I learned that the primary funding for the organization comes from the Roman Catholic Church, the Southern Baptist Church and the Mormon Church which suggests that there would be a huge exodus from the scouts were they to do the right thing and demand inclusion. I also learned that the decision was made in secret -- I can't figure out why, though, as secrecy seems to be completely contrary to the Boy Scout ideals of character, bravery and courage.

The funniest comment came from Lisa, though, my dear southern friend and fellow writer. She declared that pretty soon, Chick-fil-A (whose CEO recently confirmed his company's mega donations to anti-gay causes and stated :We are a family-owned business, a family-led business, and we are married to our first wives. We give God thanks for that.) would be peopled with only elderly Scout Leaders. I told this to Oliver, and he finally laughed about the situation and shook his head. So dumb, Mom, he said. The whole thing is just so dumb.

(And I couldn't resist posting the fantastic Rockwell poster that I found on the internets. You can take it where you will --)

Summer, Day 31

Dining room table: No homework, more toy soldiers and shoe laces.

Wednesday, July 18, 2012

Summer, Day 30

The unexpected advantage of deep-cleaning your room is that you get to re-discover and play with old toys.

Tuesday, July 17, 2012

Oliver, Boy Scouts, Bullshit

My son Oliver was sad today to learn that the Boy Scouts of America have reaffirmed their discriminatory ban on gay members. He's sad enough that he isn't going to join the Eagle Scouts in the fall, something that he looked forward to doing after five successful years as a Cub Scout. I know some of you might think that it's because of my influence that he's chosen not to be a part of an organization that allows open discrimination toward a person because of his sexuality. After all, he's only eleven and what does an eleven year old need to know about sexuality anyway? I don't go around telling everyone that I prefer having sex with women, a scout leader told me once a few years ago as a response to my question about whether it bothered him that people are banned from serving as leaders if they're gay. I was feeling our troop out, trying to come up with an answer for Oliver who had come home from selling popcorn for his pack wondering why one of his friends had told him that his family didn't want to support an organization that thought his two mothers were immoral. I told him that our pack was a very tolerant, good one and not to worry about it, but I also told him the truth -- that it was an official rule to discriminate against people who loved people of the same sex --  so I guess I planted the seed of doubt in Oliver's mind. That seed took firmer hold when he badgered me with questions about the scout oath and why did they say you had to "be kind," but they didn't like gay people to guide them? 

He's a very sensitive and ultimately sensible kid who thought the whole rule was just stupid, bad and wrong.

So, I agreed with him at the time, shaking my head at the stupidity, and assuring him that people were working on overturning that rule.

I guess not, for now.

So, Oliver is giving up something he loves in protest, and that does make me proud. I told him that the Girl Scouts are much more inclusive, and he replied, And they sell good cookies!

I guess we'll be buying a whole lot of cookies next spring. But he definitely would not want to be a Girl Scout, he told me. That's not as stupid as the Boy Scouts rule, but they're giiiiiiiirls.

Levitated Mass, or Another Reason Why I Love Los Angeles, #5,679,843

I joked on Facebook that I am hoping Levitated Mass becomes Los Angeles' Lourdes, and Sophie will be cured of her seizures by walking underneath it.

Sunday, July 15, 2012


Yesterday, I took my three kids to our local Epilepsy Foundation Family Picnic. To tell you the truth, I dreaded going, particularly after Sophie had her usual morning seizure and remained clammy and drooly for a couple of hours afterward. I felt obligated, though -- obligated because I had told the foundation that I'd be there, and they have so many good people in that organization. I have taken  a sort of sabbatical from all things epilepsy during the last year, giving up my positions on the boards of these organizations and limiting my work as a writer and advocate to only paid contracts. I didn't even participate in last fall's epilepsy walk, and aside from some private counseling for new families, I've steered away from formal activities, fund-raising and even the mustering of excitement when new drugs and therapies are announced.

I'm burnt, to put it mildly. Burnt and jaded and profoundly cynical and certainly not optimistic that Sophie's seizures will ever abate through traditional means.

Yesterday, I met some new families, wonderful parents and children who are all struggling with this terrible disease. Despite advances in treatment, though, and all different modalities, including diet, drugs and surgery, I didn't talk to one parent that wasn't overwhelmed and one child that didn't appear drugged, drowsy or just plain out of it. I have no idea what the answer is, and the older I get and the more years of doing it, the less engaged I become. I imagine it's a survival mechanism -- a means of living day to day when a more appropriate response might be a continual wailing and gnashing of one's teeth and perhaps some homicidal thoughts toward the drug industry, the callous doctors, the ineffectual systems in place, and those systems that are completely lacking. When you throw in the relative indifference of the political system and the culture in general to the plight of the disabled and the strength and perseverance it takes to continually advocate and fight for a better life for your child, yourself and your family -- well -- there is, if not a breaking point, then certainly a point of surrender when you can't think about or do it anymore.

Yesterday, I sat and had a slow, labored conversation with a very sweet young girl who had started seizing when she was five years old, out of the blue and for no reason. She was eleven now and according to her mother had been on thirteen drugs, been through brain surgery, wore a vagal nerve stimulator and was just initiating the ketogenic diet. She was also on two anti-epileptic drugs that, along with the seizures, made her speech and reasoning slow and her eyes dull. I also spoke to an adult who had a stroke during her second pregnancy twenty years before. As a result, she had epilepsy that was difficult to control and was on several medications, and while she was cheerful and active, there was also something off about her, something I couldn't put my finger on, a missing filter, perhaps. She told me that the new drug that she was taking, Vimpat, made her feel terrible -- nauseous, irritable, dizzy and headachey. Sophie takes the same drug, and while it helps her seizures somewhat -- I think -- I agonize over the side effects and wonder just how shitty Sophie might feel.

Depressing post, right? I'm just getting it out, plucking the words, attached to vague and nauseating feelings that I, and apparently most, parents of children with uncontrolled seizure disorders and other disabilities probably share.

I suppose it's good to be in a beautiful park, a camp setting, with your family and many other families who share your life in some respects. I didn't know, though, whether to feel camaraderie or incredible isolation. I guess I felt both. Sophie couldn't do most of the activities but loved walking in a giant field of grass.

A little later after this picture was taken, I was encouraged to let her experience a zip-line, and while she seemed to enjoy it (her intake of breath and startled expression told me) -- I felt more like downing a shot of liquor, straight-up, watching her.

Henry and Oliver participated in the teen activities, mingling with other siblings and older children with seizure disorders. Their dare-deviltry included climbing walls and other acrobatic feats -- and while Oliver froze at the top of a very, very high structure and had to be coaxed and talked down by two heroic young men who firmly talked him out of a rising hysteria, I never felt anxious watching him.

I'm grateful for that.

Henry scrambled up all the structures like the athlete that he has become. My stomach lurched, once or twice, when he yelled for me to LOOK! but otherwise, I felt only pride at what my boys have made of their short lives.

I have no idea where this post is going other than to describe a day where I held both anger and lassitude, fear and content, despair and hope, resentment and gratitude all at once, in balance, in either hand, a lifetime shortened to five hours in a verdant park in an inchoate city on one tiny, spinning planet in a vast universe.

Saturday, July 14, 2012

Drum Roll, Please...

image via Stromboli Online

An autographed copy of Barbara Abercrombie's book A Year of Writing Dangerously is awarded to:

for her writing advice to:

Just sit down and write, dammit.

Vesuvius has a remarkable blog that you should definitely check out -- she is, apparently, taking her own advice because her writing is inspired, hilarious and intensely personal. 

I had a difficult time choosing one comment for the giveaway, though, and even the author of the book, Barbara, left a complimentary comment on everything that you all had to say. If I could I would give each of you a book, but instead will encourage you to purchase one for yourself. Honestly, I'm delving into it nearly every day for inspiration and interesting, relevant quotes. 

Now, get out there and write, dammit!

Heavenly Day

Reader, remember my project? Well, I'm working on it! I'm thinking about using this song and wonder what you think. Leave a comment -- or suggestions of other music. Go easy, though -- Patty Griffin's version of this song is one of my favorites and, I believe, fits the topic perfectly in nearly every way.

Let me know, and if you missed my "deadline," have no fear. Email me your photo at elsophie AT gmail DOT com.

I will get this done.

I will get this done.

I will get this done!

Friday, July 13, 2012

Last Chance to Write Dangerously!

I hope you'll enter my giveaway and get a chance to receive Barbara Abercrombie's new book A Year of Writing Dangerously. All you have to do is leave a comment -- some writing advice -- at the original post. or here. I'll pick my favorite tidbit and announce the winner tomorrow! Readers, this is a really wonderful book -- filled with quotes and guidance for every day of the year. There's not a cliche in it and so much inspiration that if you're stuck in your writing you'd find something to help you ignite that creativity. Here's an example:

20. Naked in the Hallway

I have a friend who has a large photograph of herself hanging in her downstairs hallway, and she's stark naked in it. There's also one of her husband. And these are not young people. The photographs were taken by a student from a nearby art college who wanted to photograph older people nude and who told my friend not to hold her stomach in, to just be herself. These are the bravest photographs I've ever seen, and beautiful too. Sure they reveal, well, everything, but --- because of the lighting, the art involved --- there's mystery to them.

I love to think of these photographs whenever I get all snarled up with the idea of exposing too much in my writing. As Tennessee Williams once said, "All good art is indiscretion."

I'm very relaxed about privacy because there is none left....John Perry Barlow, a former lyricist with the Grateful Dead....says the only way to have privacy [is to] expose it all and you have nothing to hide.
                                                                                   ---LEONARD KLEINROCK

Thursday, July 12, 2012

On being persnickety, brain worms and epilepsy


adj -
1. excessively precise and attentive to detail; fussy; also, having the characteristics of a snob
2. (of a task) requiring close attention; exacting

[originally Scottish; of unknown origin]

This post will make no sense unless you're me and you've just read a story about brain worms and epilepsy, a story that took you back nearly ten years ago when you sat up one night, cruising the internet trying to find a reason for your daughter's unexplained weight loss and increase in seizures because no one else, including your neurologist at the time and the head of gastroenterology at one of the city's greatest hospitals didn't seem to care and somehow found yourself at three am on a site detailing the hideous effects of tapeworms that after being ingested made their torturous way to the brain where they wreaked havoc. You remembered that the dog was new and the dog had fleas and tapeworms came from fleas and were instantly convinced that that was it -- the weight loss, the increased seizures (pay no mind to the ten years before of unremitting and unexplained seizures) -- this was it -- and the next day you called your pediatrician and told him your secret discovery and even though he wanted to laugh he said that he would do a stool test just to be sure and you thought bless him for humoring me because I'm insane -- and then when the test came back negative, you thought shit, it's come to this: no one knows, no one knows, no one knows.

Wednesday, July 11, 2012


Venice Blvd, mid-city, Los Angeles

There are people upside-down in that giant armed creature, screaming wildly, faces stretched against gravity.  I sat at the light, two moons away, inside a cage of steel, staring at the carnival, set up in urban blight, a mirage of color and light and popcorn smells. People in cinder block houses step outside, into neon and thrill, into rooms of steel and arms that enclose and swing up and away into blackness, where fear and happiness meet for an instant. I might have stepped out and into it, climbed up and let go instead of squinting my eye against glass, holding it one outstretched arm away.

If your Nerve, deny you -
Go above your Nerve -
He can lean against the Grave,
If he fear to swerve -

That's a steady posture -
Never any bend
Held of those Brass arms -
Best Giant made -

If your Soul seesaw -
Lift the Flesh door -
The Poltroon wants Oxygen -
Nothing more -

Emily Dickinson, c. 1861

Sunday, July 8, 2012

A Walk Away

We live a world away here on the edge of the sweltering country, breeze ruffling hair and golden sun warming the sidewalks. Sophie is barefoot in her wheelchair, and when I pull her up and out of it we sit under a tree and listen to the ruffling. I'd refuse heaven for this, the yellow jacket's ruffle as it squirms on clover, Sophie's curled up toe, the bit of hardened callus from a slanting gait, the bits of grass stuck to my ankle where it digs in the dirt. I read a book in two hours this morning called By The Iowa Sea: A Memoir of Disaster and Love, and there is no telling in a re-telling, a book that pulled me down and back up, horizontal meandering, up and over, softly ruffled -- sweltering heat, a refusal of heaven, a walk away.

Saturday, July 7, 2012

My Big O

The Big O is back from camp, and I'm so very, very happy!

A Year of Writing Dangerously

Isn't that a great title for a book about writing? My dear friend and writing mentor, Barbara Abercrombie, is one of those teachers who you never forget. She's the person who led a workshop I attended at UCLA many years ago and inspired me to begin writing again after ten years. An impeccable editor, she encouraged me to keep writing and still inspires me today with her own prodigious output and commitment to the writer process.This is what she says about her new book:
If you want to be a writer, or if you're thinking of keeping a journal or writing a blog or an autobiography for your family, this is the book to get you started. If you're already a writer, this is the book to keep you going with 365 daily anecdotes, commiseration and funny stories from some rock star writers.

You are lucky today because I'm the pimp to what those in the book business like to call The Marketing Whore, and I have a signed copy of A Year of Writing Dangerously to give away. All you have to do is leave a comment with a bit of writing advice of your own! It can be silly, funny, inspiring or illicit. The pimp (me) will decide on her favorite comment/advice and pick a winner on July 15th --

So, live and write dangerously! Leave a comment! Win a book! Go buy the book! Write!

Oh, and watch this:

Friday, July 6, 2012

Road Trip

I'm leaving this morning to go pick up that boy of mine from camp. I'm traveling alone, driving up north for hours and hours. If you see me, honk!

Thursday, July 5, 2012

How We Do It, Part XIII in a series

Sophie and I walked outside yesterday and down the path toward the driveway of our friends' house in the Hollywood Hills. She, Henry and I had come to an annual Fourth of July get-together, a family party that I look forward to each year for the great company, amazing food and a view of fireworks that stretch all across the Valley. Oliver is still at camp, and the The Husband was with The Mistress, so I had resigned myself to being Sophie's sole caretaker at the party -- not a job that I love as it entails either holding her hand  and walking around to calm her or sitting her in her wheelchair while the many children run back and forth and all around, seemingly oblivious. There were new children at this year's party, and when they'd arrived they had done the usual not-rude-but-entirely-understandable-curiosity-staring and when introduced, said polite hellos and then ran off. As Sophie has grown older, the disparity between her and others has only magnified, and while I have historically done nearly everything in an attempt to "include" her, I've grown tired of it, frankly, and perhaps shut down that part of myself that yearns for friendships for her. As we walked toward the large driveway, I pointed out some of the beautiful trees and flowers that lay along the pathway and only noticed the children jumping on the trampoline in my peripheral vision until one of them shouted, Does she want to come and jump on the trampoline with us? I looked up and saw a young girl, maybe nine or ten years old, in a blue and white striped skirt, a white tee-shirt and a large red flower in her shiny black hair, standing at the opening of the trampoline. Well, there's a lot of kids on the trampoline, so it would be hard for her, I think, but thank you for including her! I shouted back. How old are you? the girl directed her question at Sophie. She's seventeen, I said, and she can't talk because she has a problem in her brain. But she can understand you! The girl spoke again, directly to Sophie. I'm sorry about that! But you can come jump with us! My whole body thrilled to this exchange, and I told the girl that I wouldn't be able to lift Sophie up that high, that the ladder was too difficult for her to use, but that I really appreciated her invitation. We stood there for a few minutes and watched the girls jumping, their free bodies soaring not so high as my own heart, beating steadily through the hands that linked Sophie and me.

Wednesday, July 4, 2012

Girl on a Swing on the Fourth of July

Happy Fourth

Learning to Love America

because it has no pure products

because the Pacific Ocean sweeps along the coastline
because the water of the ocean is cold
and because land is better than ocean

because I say we rather than they

because I live in California
I have eaten fresh artichokes
and jacaranda bloom in April and May

because my senses have caught up with my body
my breath with the air it swallows
my hunger with my mouth

because I walk barefoot in my house

because I have nursed my son at my breast
because he is a strong American boy
because I have seen his eyes redden when he is asked who he is
because he answers I don't know

because to have a son is to have a country
because my son will bury me here
because countries are in our blood and we bleed them

because it is late and too late to change my mind
because it is time

Shirley Geok-lin Lim
via Poetry Foundation

Tuesday, July 3, 2012

There's something cool happening in Texas,

and by "cool," I don't mean the weather, although I hear it's pretty hot down there, too. Despite the fact that my best friend in the world is from Texas and I know that there are plenty of good folk that live in the lone star state, they seem to have serious problems with just about every area of what makes a place civilized -- at least to a gal with liberal leanings. I'm perfectly aware that California has its share of crazies, but that's not what this post is about -- nor is it about Texas, really. Or Wal-Mart -- except that there are an awful lot of Wal-Marts in Texas, and I do love a good Wal-Mart bashing post. Insults aside, I was just reeling you in to tell you about this article I read about a former Wal-Mart being bought by the city of McAllen in southern Texas and turned into a library! A fantastic looking library at that -- check it out here.

Oh, and I just remembered -- some very wealthy guy in San Antonio built the world's first adaptive amusement park for his disabled daughter and others like her a while back. That was something good coming out of Texas, too.

Texas Reader, tell me more good stuff.

Monday, July 2, 2012

"A friend to all...big and small"

When we walked into the church this morning to celebrate Gus' life, this was the card that some kind person placed into our hands, and the tears began to fall and continued to fall, off and on throughout the entire mass. Gus' graceful parents told the hundreds of bereft people in the church that even when they lost their composure around their son as he lay sick, he would always reassure them, Smile, I'm fine, he'd say.  I sat with Henry in the church for the first time in a few years, and despite my own disconnection to it, to that symbolic Catholic faith that so many present felt, I am sure, in the most authentic of ways, I felt the presence of Love. Through twinges of anger, of loneliness, of even boredom (the kind that comes when words are said over and over, years upon years, signifying nothing), I felt the presence of Love pushing up against me. My shoulders hunched against it, this Love, at first and then they dropped as love bent its way around and over and under, Love that guides and comforts and sustains despite everything.

May we feel grateful to have shared a bit of that Love through Gus. May beautiful Gus rest in peace. May his dear parents feel Love every day for the rest of their lives.


Yesterday, I drove Henry, his friend P and Sophie up to Zuma Beach in Malibu on a spectacularly beautiful day. We met one of my best friends, her husband and daughter at the very end of Zuma -- a glorious place with surfers to watch and rolling waves and warm sand. I feel almost guilty posting this as my parents swelter in Atlanta, Georgia and one of my sisters swelters and emerges from the hideous storms in D.C. The lack of heat and humidity out here is one of the main reasons that I live so far from family -- and while going to the beach can be sort of a hassle, when I'm there I always think why don't I do this more often?


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