Chuck (Yeager) and Jeneva

Chuck Yeager

My friend and fellow parent of a child with disabilities, Jeneva of Busily Seeking...Continual Change is really one of the best, if not the best writer out there in the big, wide world. She's wickedly clever, a poet and essayist in a grand tradition. Recently back from a prestigious writer colony where she worked on an upcoming book, she has begun blogging again, and I'm just riveted, as usual, to what she's writing about and how she does it. Here's a snippet to whet your appetite:

I remember writing last year about the Blackbird, the plane built to fly three times the speed of sound, the plane whose turns had to be planned 200-300 miles in advance. And how that made me think of Phoebe Snow and her disabled daughter and the risks we're forced to take, the flights we buckle ourselves in for without understanding how powerful the ride will be.

That is life with Robert, flying faster than my skills allow, hoping I can make the machine accomplish what it was meant to do: fly faster than the insurance companies can head us off, out-race ungenerous predictions of Robert's future, outrun this insane political climate in which ingratiating smiling jackasses simultaneously invoke American exceptionalism and poor-mouth the possibility of a shared effort and responsibility in accomplishing what this nation needs to do for us all--to prove the point, that is, that we are an exceptional and unique people (if that is indeed, the hegemonic and ultimately obnoxious point we'd like to make). I am, frankly, worried that under either a Romney or an Obama administration we will see Medicare vouchers tossed casually to people like my son. Because asking Romney to fly this sleek beautiful craft we call the United State of America is like strapping a black lab on top of the cockpit and Obama doesn't seem to want to get into the cockpit at all right now (hey, what gives with his no-show in Wisconsin?).

Is your appetite whetted? Go read the rest of that and more.

Remake a World

Transit of Venus, June 2012

To sum it all up, if you want to write, if you want to create, you must be the most sublime fool that God ever turned out and sent rambling.

You must write every single day of your life.

You must read dreadful, dumb books and glorious books, and let them wrestle in beautiful fights inside your head, vulgar one moment, brilliant the next.

You must lurk in libraries and climb the stacks like ladders to snuff books like perfumes and wear books like hats upon your crazy heads.

I wish for you a wrestling match with your Creative Muse that will last a lifetime.

I wish craziness and foolishness and madness upon you. 

May you live with hysteria and out of it make fine stories.

Which finally means, may you be in love every day for the next 20,000 days. And out of that love, remake a world.

Ray Bradbury, How to Be Madder than Captain Ahab 

(August 22, 1920 - June 5, 2012

On my walk

The last one is my favorite.

A Morning Anthem

I got an email from Anthem Blue Cross this morning that looked like this:

Your Healthy Solutions Newsletter Has Arrived!


It was the exclamation point at the end, all the cheerfulness inherent in the teardrop and pinprick that got to me, and on a day where I'm hard up to find inspiration for writing (the weather, again? Sophie's seizures, again?, the Transit of Venus, again? the arguments between my sons on whether or not they'd seen the transit because aren't you blinded, Mom, if you look at the sun?), well, caustic words toward Anthem might be just the thing.

I think it would be downright refreshing if Anthem Blue Cross would change their marketing and advertising communication techniques and just be honest. At the very least, I would get a laugh and at the most feel a grudging respect for honesty were that subject line in my email to look like this:

We're Busy, Working Hard to Ensure That We Screw You With Increased Rates!


Or maybe something like this:

Our Intent is Not To Give You As Much Stress As Your Daughter's Seizures, But To Make As Much Money As We Possibly Can!


Or maybe something like this:

If the Supreme Court and Republicans Overturn the Affordable Care Act, We're Ready to Really Fuck You Over, So Be Prepared and Get Healthy!


Or maybe even this:

We Look Forward to Continuing Our Long-Standing Relationship of Coming Between You and Your Doctor On All Matters Related To Your Health!


Reader, if you'd like to join me in this campaign for honesty in advertising and marketing, please feel free to leave a comment. Curse words are welcome. Heck, you can even curse me! And don't forget the exclamation point!

Transit of Venus - Self Portrait

Venus slides between us and the Sun today, an exceedingly rare spectacle --

New York Times

Epileptic***

There are few words to describe David B.'s graphic novel Epileptic, which is, I guess, apt for a graphic novel. Terrifying, brutal, poignant, and dark are a few. I've had the book for many years and only take it down off the shelf every now and then. I did so last night and sat outside on my back stoop as the sun went down through the palms and some godforsaken crows screamed in the distance. While not godforsaken, I felt depleted and diminished by Sophie's seizures, the one in the morning and the three at the ballpark and the one at dinner. The seventeen years of them, like clockwork, imposing a rhythm on our lives.

 Like the characters in Epileptic, our family seems to be trudging, still, not begrudging, still, up a dark mountain, following Sophie as she makes her arduous way.

***Click on the photos to read clearly.

No, this isn't a baseball blog,

but Henry hit a double this afternoon on his other team, stole to second and third and then got a run. He is officially over 

his batting slump.

And you heard about it, here, on a moon, worn as if it had been a shell, where

parenting, disability, politics, poetry and baseball intersect.

Nightstand

Nearly every surface of our small bungalow is covered in books -- mom's books, the boys would say -- but what's sitting on the table next to my bed is where the real reading lives. Right now, I'm plowing through The Patrick Melrose Novels by Edward St. Aubyn. There are four of them in the volume that I have and evidently the fifth, At Last, came out recently and is the best. These are British novels, and St. Aubyn is a masterful writer with an ascerbic wit -- the stories are dark and mannered and I can't put them down.

The other book that I'm flipping through with great joy is At Home on the Range, a cookbook presented by Elizabeth Gilbert of Eat, Pray, Love fame and written by her great-grandmother, Margaret Yardley Potter. This is a charming book of beautiful design by McSweeney's Books, and while I'm not a huge fan of Gilbert, I really enjoyed her foreword which precedes Potter's introduction:

Married to a man whom my father describes as "impossible," constantly in debt (sometimes slipping out of foreclosed homes just ahead of the sheriff's arrival), struggling with the alcoholism that would periodically land her in psychiatric clinics and grim hospital wards, my creative but unconstrained great-grandmother was not the first or the last woman in the history of female hardship to take refuge in food.

What are you reading?

How could Saturday be Saturday without baseball and cake??

8:00 AM Game

Yankees vs. Red Sox

8-7

What Oliver looks like when he has a hit

What Oliver looks like when he strikes out

3:00 PM, Nationals vs. Pali Red

2-4

End of Season :(

In-between games: Two cakes

One Chocolate Cake with Chocolate Frosting and Fondant Stars

One Pink Lemonade Cake with Lemon Buttercream that will hopefully look like this when the client slices into it:

Hey, Girl: An Accompaniment to my Last Post with Ryan Gosling

I've wanted to do this for weeks and finally, sort of, figured it out. I'm participating in this week's Special Needs Ryan Gosling meme, started by the brilliantly funny Adventures in Extreme Parenthood.

You have to scroll down and read my earlier post to get it, I think.

How We Do It, Part XII in a series

The physical education teacher insists on assigning Sophie an F on her report card with a U -- unsatisfactory -- under Work Habits. Sophie doesn't get to school on time for adaptive physical education, the first period of the day because she has difficulty waking. She has a cluster of seizures nearly every morning and then, later, during breakfast, a larger one. She takes two anti-epileptic drugs that, despite their inefficacy in preventing these seizures, are efficacious in promoting a simultaneous drowsy and agitated reaction about a half hour after ingestion. Sometimes, as I'm dressing her, Sophie will lie back, close her eyes and sleep. I let her sleep whenever she's sleeping and have never woken her up purposely from sleep because I know sleep as a principle. I have spent a lifetime of hours awake with Sophie, as a baby, as a toddler, as a child, as a pre-teen, as a teenager. I have a spent a lifetime of hours awake with Sophie crying, seizing, seizing, crying, awake, awake, awake. When she sleeps, she sleeps. I have explained this to the adaptive physical education teacher and the special education coordinator, have explained this history of sleep and awake, yet it makes no difference and the card comes in the mail, the faint black box with FAIL and UNSATISFACTORY and it irks me in its smallness, its meanness, its deference to the way things should be, the tyranny of should over how we must do it, by the skin of the teeth, the closing of the eyes, the held breath over the descent, the obdurate giving way to ease.

Can we just look at some peonies today? (UPDATE)

***Update: Peonies are NOT readily grown here in La La Land. I believe they need a deep freeze, something that I myself have gladly not experienced in over fourteen years. These beauties were bought for $6.99 at the Trader Joe's down the road. I exclaimed over them like I do every year they turn up and every day that I see them opening ever outward. They're feminine, blowzy, sexy -- I love them. I wish I was one.

The boy's a blur

He'll be fourteen years old this summer and has grown so much the past school year that he's nearly blurry. This past weekend, one of his baseball coaches sat with me at a cook-out and told me what a fine boy my Henry is. I can hardly talk about Henry without gushing, so I held myself back. But when the coach told me that Henry had told him that his parents (that's me and The Husband) were the hardest working people he had ever known, my cup spilled over and the whole universe blurred.

Doc Watson, President Obama, Bob Dylan and Mary Moon

If you had told me in 1973 that in my lifetime I would live to see a black president put a prestigious award around the neck of a 72-year old Bob Dylan on the same day that Doc Watson died, well, hell. I don't even know what I would have thought but it would probably have been something like, "Far out."Which, actually, would have been pretty appropriate.

Ms. Mary Moon from Bless Our Hearts