Random Saturday

12

Henry, my son, was twelve years old on the 25th. He was born a giant -- nearly ten pounds -- and began smiling within weeks. He is filled with joy and ease, one of those people, apparently, who are effortlessly alive and loving it.

I adore him.

Heat and Weirdness

I'm so worn out by the heat and big family drama (not to mention The Sophie Saga) that I hardly have any energy to keep up the blog posts. So from here on out, until I arrive back in temperate Los Angeles and my trusty, old computer, I'm just posting pictures.

A crockpot of boiled peanuts at the 7-Eleven store outside of Hilton Head Island, somewhere in the country.

Tolerance

We have seventeen people living together in one medium-sized house this week. Tolerance is a necessity, and it's difficult, to say the least.

For instance, I drove in my mother's car from Atlanta to Hilton Head. Truckers ripped on by my luxury vehicle, honked their horns and gave me high fives. I thought, at first, that they thought I was cute. And then I realized that they were showing me approval for this:

Checking in from the hot zone

I'm still here, barely.

It's hotter than the lowest level of Dante's hell.

We've been circling one of those layers, Sophie and I, each night since we've been here. I'm not going to sugarcoat anything but I'm not going to elaborate. If someone asked me whether I had a good night, this is what I'd say:

Last night was the night I became an atheist.

On the bright side, The Husband is flying in for relief, and the boys are ecstatically happy.

I have a mess of photos to post but the internet is down and a few of the keys on this computer are gone.

Talk to you soon.

It's hot

Living in Los Angeles for more than a dozen years has effectively made me a weather wimp. I grew up in Georgia and lived most of my life on the east coast -- I slept in an un-air-conditioned dorm in college in North Carolina and lived many years in an un-air-conditioned apartment in New York City. But when I come back east for vacation, I'm always amazed at how intolerant of the heat and humidity I've become. How can people live like this, is what I think when I step outside.

Evidently, there are hotter places. This very old church sits right up the road from my parents' house in suburban Atlanta.

Right across the street is an old cemetery, most of the headstones buried in weeds. I stepped lightly, afraid of snakes.

After twenty minutes or so, I'd had enough and was drenched in sweat in my city girl clothes. My parents' house is an oasis.

We're here

and I'm typing away at my dad's fancy MAC computer. Ms. Moon just wrote a post extolling its virtues, and I'm almost convinced. I so need a new computer -- maybe in my dreams --

The flight was uneventful. No trips to the bathroom and no seizures.  At one point, I strolled up the aisle to the bathroom and was stunned at how many people were doodling and diddling on electronics. Ipads and iphones and laptops and DS games and PSPs. I do believe every single passenger had some kind of gizmo attached to their hand. It was quiet, too, because of it -- except for the one poor toddler who screamed his head off for at least a half an hour. There was a giant lady with the word JESUS on her tee-shirt and a group of women in head scarves. There was a bag of pretzels and a package of Twizzlers, a lot of reading in my Kindle (yes, I have a Kindle and I love it -- it doesn't take the place of books, by any stretch of the imagination; it's just a different way to read them -- and I'm as book snobby as they come, so there!) and some divine turkey sandwiches that The Husband set us up with.

All is good.

It's HOT, here, folks -- like a steam bath. I'm in Atlanta for a couple of days and then off to Hilton Head.

Hopeful Parents

The first flight at Kitty Hawk, NC - December 1903

I think I might be actually sort of funny today, over at Hopeful Parents.

Hysterically funny (with the emphasis on hysterical)

What things look like at this point

What the hell was I thinking?

When I started to cry -- just a little bit -- The Husband reminded me that at first I had planned on leaving for six weeks.

Since airlines charge $25 PER BAG, it's going to be an EXPENSIVE day tomorrow, just getting on the plane.

Two years ago, when I began this blog, I wrote a controversial post about riding in a plane with a dead soldier from Iraq in the cargo hold. One of the comments I got was a dress-down about complaining about air travel when I should be patriotic -- grateful to have the opportunity to go somewhere for pleasure. It gave me a tad bit of perspective (and I'm actually one who is quite aware of  perspective, but I can't argue with a rabid Patriot). Anyway, call it Catholic guilt or righteousness working its power, but I am SO self-conscious about that now that I almost don't want to tell you how much I HATE planes (and not because of fear of flying). I'm aware of how fortunate I am to be traveling across the country with my children to visit my family at a beautiful beach house in Hilton Head Island. I'm aware of it and I'm grateful.

I despise traveling on airplanes. I'm aware of how fortunate I am to be traveling across the country with my children to visit my family at a beautiful beach house in Hilton Head Island. I'm aware of it and I'm grateful.I hate the whole ridiculous security thing; I hate waiting in lines like docile cattle afraid to moo; I hate the plastic water bottles you have to buy; I hate the food and I hate the way your hair and skin feels after five hours. (I'm aware of how fortunate I am to be traveling across the country with my children to visit my family at a beautiful beach house in Hilton Head Island. I'm aware of it and I'm grateful.) I hate the five hours spent hovering over Sophie, shielding her from looks when she has a seizure, praying that she doesn't have anything other than a wet pull-up (think about what it's like changing a fifteen year old in an airplane bathroom, but don't think about it for too long because your head will fall off). I'm aware of how fortunate I am to be traveling across the country with my children to visit my family at a beautiful beach house in Hilton Head Island. I'm aware of it and I'm grateful. I hate landing somewhere intensely hot and humid that isn't Hawaii because I hate sweating. I hate mosquitoes and I hate air-conditioning, except when it's really hot and humid and if you don't have it, you'd die. I'm aware of how fortunate I am to be traveling across the country with my children to visit my family at a beautiful beach house in Hilton Head Island. I'm aware of it and I'm grateful.


There, I said it.

And THAT, right above these words, is what I LOVE. That's Sophie's carry-on bag that I bought her for middle school graduation. I'm so excited to bring it along. And I'm aware of how fortunate I am to be traveling across the country with my children to visit my family at a beautiful beach house in Hilton Head Island. I'm aware of it and I'm grateful.


I promise to be good from here on out.

Did I tell you

that I'm leaving tomorrow morning for a three week stay in South Carolina? Did I tell you that I'm taking Sophie this year and calling it the "vacation" -- quotes laden with irony?

I throw out the big questions to the universe, the big appeals. I'm grateful for the small things.

My appeal to the universe is quite trivial today.

Help me to get ready for our "vacation."
Help me not to yell at the children as they watch endless hours of television today.
Help me to survive the plane trip with Sophie tomorrow.
Give Sophie a good day tomorrow.

What are we going to do today?

Survival of the Fittest?

from Henry A. Giroux's article  The Disappearing Intellectual in the Age of Economic Darwinism:


With the advent of neoliberalism, or what some call free-market fundamentalism, we have witnessed the production and widespread adoption throughout society of what I want to call the politics of economic Darwinism. As a theater of cruelty and a mode of public pedagogy, economic Darwinism undermines all forms of solidarity while simultaneously promoting the logic of unrestricted individual responsibility. But there is more at stake here than an unchecked ideology of privatization. For example, as the welfare state is dismantled, it is being replaced by the harsh realities of the punishing state as social problems are increasingly criminalized and social protections are either eliminated or fatally weakened. The harsh values of this new social order can be seen in the increasing incarceration of young people, the modeling of public schools after prisons and state policies that bail out investment bankers, but leave the middle and working classes in a state of poverty, despair and insecurity. But it can also be seen in the practice of socialism for the rich. This is a practice in which government supports for the poor, unemployed, sick and elderly are derided because they either contribute to an increase in the growing deficit or they undermine the market-driven notion of individual responsibility. And yet, the same critics defend, without irony, government support for the rich, the bankers, the permanent war economy, or any number of subsidies for corporations as essential to the life of the nation, which is simply an argument that benefits the rich and powerful and legitimates the deregulated wild west of casino capitalism.


Thanks to Douglas Vicenzi for posting this on his witty, erudite blog Liberals are Cool.

My Kind of Porn

Click on one of my favorite words, below (and then come back, if you aren't exhausted, in the best way):

BOOK


How good was that?

Sacred Sunday

Botticelli's Venus

Thought for the day: 

As I read the opinions and editorials surrounding the Vatican's recent edict listing both priests raping children and the ordaining of women as priests as graviora delicta or grave offenses, I wonder if there ought to be a type ritual associated with severing one's ties completely from the Catholic Church. A Sacrament of Severance, perhaps? I have read, equally, many good Catholics' views on the whole thing -- on what is good and admirable about the Church, on its many good deeds, etc. etc. I've read those editorials, the articles passed around on Facebook among "friends," and my own back and forth again thoughts that are partly constructs of my culture and typical Catholic "guilt" and partly a really well-intentioned effort on my own part to be tolerant. While these winds that sway can often make me list one way or another, my feet are growing roots, I think, that are slowly enabling me to stand firm. The trouble is that so much of the ritual that makes the Catholic Church beautiful is what also makes it  horrific, and those opposites are not the yin and the yang, the life and the death, the ever-repeating cycle of good and bad that makes the world what it is. I need a ritual to remove myself, ironically, permanently. 

He's Back

Oliver, Sophie and I went to pick a beaming Henry up from Ghetto Camp this afternoon. Just as we'd all predicted, he had a fantastic time. He gave me a huge hug and chattered all the way home about the games he'd played, the food he ate, the hike he went on and what he learned. He told us about a few boys that were so homesick, they cried and wailed every day.

Did you miss us? I asked.

Yeah, sort of. But I was distracted a lot, and sometimes I didn't think about you at all, he replied.

Later, as I fixed dinner, he kept up the chatter. I think I might have missed Oliver the most, he said. He didn't know why. He threw his arms around me, then, and said Sometimes when I thought about you, my eyes teared up.


Could I possibly love him more?

Later that night, we all lay on the bed and listened to music. I saw all three of my children and just couldn't believe it.

How happy I was --

Haiku My Heart Friday

Drawing is one thing

Reflection is another

In them I see her.

Join other Haiku My Heart folks at the lovely recuerda mi corazon.

For Sophie

Turn it up...




Heavenly Day

Oh Heavenly day
All the clouds blew away
Got no trouble today
With anyone

The smile on your face
I live only to see
It's enough for me baby
It's enough for me
Oh heavenly day
Heavenly day
Heavenly day

Tomorrow may rain with sorrow
Here's a little time we can borrow
Forget all our troubles in these moments so few
Oh we can right now the only thing that all that we really have to do

Is have ourselves a heavenly day
Lay here and watch the trees sway
Oh can't see no other way
No way
No way
Heavenly day heavenly day heavenly day

No one on my shoulder
Bringing me fears
Got no clouds up above me
Bringing me tears
Got nothing to tell you
I got nothing much to say
Only I'm glad to be here with you
On this heavenly heavenly heavenly heavenly heavenly day
Oh all the troubles gone away
Oh for awhile anyway
For awhile anyway
Heavenly day
Heavenly day
Heavenly day
Heavenly day
Heavenly day
Oh heavenly day

It's the first really hot day in LA

and we're all lolling around. I haven't turned on the air-conditioner, yet, this summer because we haven't needed it. We sort of need it now, but I'm sort of determined not to use it for a bit longer. You know how once you turn it on, there's no going back?

It'll cool off tonight, like it always does.

Sophie is resting -- a bit better than she was yesterday, which is good.

Oliver ripped off his sweaty socks, shinguards and cleats today, buried his nose in the pile and said Wow. That smells strong. Then he did it again. Were we that bizarre when we were children?

I'm inclined to a Trader Joe's margarita-mix margarita with salt and lime.

I got an unexpected small gift today and it's left me awed.

Thank you, T.

Undoing bewilderment and peacefully abiding

The process of undoing bewilderment is based on stabilizing and strengthening our mind. Shamatha meditation is how we do that.


The word shamatha in Sanskrit (Tib.: shi-ne) means "peacefully abiding." Peacefully abiding describes the mind as it naturally is. The word “peace” tells the whole story. The human mind is by nature joyous, calm and very clear. In shamatha meditation we aren't creating a peaceful state—we're letting our mind be as it is to begin with. This doesn't mean that we're peacefully ignoring things. It means that the mind is able to be with itself without constantly leaving.

-- Sakyong Mipham Rinpoche

This is the best day ever

is what Oliver said to me as he drank a Starbucks Chocolaty Chip blended when I told him what we were getting Henry for his birthday in a couple of weeks.

In the event most of your friends are quite wealthy

and doing fabulous things all summer long while you ration out the sprinkler time in your backyard and make innumerable trips to Yogurtland, finally giving up on the no candy toppings rule, you can read this poem by Billy Collins and be comforted and amused:

Consolation


How agreeable it is not to be touring Italy this summer,
wandering her cities and ascending her torrid hill towns.
How much better to cruise these local, familiar streets,
fully grasping the meaning of every road sign and billboard
and all the sudden hand gestures of my compatriots.


There are no abbeys here, no crumbling frescoes or famous
domes and there is no need to memorize a succession
of kings or tour the dripping corners of a dungeon.
No need to stand around a sarcophagus, see Napoleon's
little bed on Elba, or view the bones of a saint under glass.


How much better to command the simple precinct of home
than be dwarfed by pillar, arch, and basilica.
Why hide my head in phrase books and wrinkled maps?
Why feed scenery into a hungry, one-eyed camera
eager to eat the world one monument at a time?


Instead of slouching in a cafe, ignorant of the word for ice,
I will head down to the coffee shop and the waitress
known as Dot. I will slide into the flow of the morning
paper, all language barriers down,
rivers of idiom running freely, eggs over easy on the way.


And after breakfast, I will not have to find someone
willing to photograph me with my arm around the owner.
I will not puzzle over the bill or record in a journal
what I had to eat and how the sun came in the window.
It is enough to climb back into the car
as it it were the great car of English itself
and sounding my loud vernacular horn, speed off
down a road that will never lead to Rome, not even Bologna.


-- from Sailing Alone Around the Room

The Last Beating and Some Gratitude

Dear Insurance Commissioner of California,

Today, my daughter Sophie finally received the medicine her neurologist ordered to treat her electrical status epilepticus in slow wave sleep, or ESES. This rare seizure syndrome is particularly devastating for my daughter because it causes global problems: eating difficulties and accompanying wasting, cessation of walking and ataxia, constant drooling and, of course, near constant seizures, particularly while sleeping. The first time Sophie was diagnosed with ESES, more than five years ago, was probably the  most devastating period for our entire family, outside of her initial diagnosis at three months. However, she was treated with intravenous immunoglobulin, or IVIG, and the ESES resolved. Needless to say, when we learned that Sophie was having a recurrence of the disorder, we were upset but relieved to know that the treatment for it was something that she had responded to, successfully, before and that it should help her again. Six weeks ago, Sophie's neurologist diagnosed the recurrence of ESES and ordered IVIG for treatment.

You probably know what comes next. Six weeks of waiting while the insurance company, Anthem Blue Cross, investigated our doctor's prescription and the medical necessity of the treatment ordered. You also might know or expect that, yes, we have an individual insurance plan with Anthem and are therefore not protected by a larger company group policy. You also might expect that our fifteen year old, extremely disabled daughter has to have her own insurance plan because our family plan (that covers my husband, myself and our two young sons) will not accept her with a preexisting condition of epilepsy. You also might expect that the premiums for both her plan and our plan have increased by almost 50% in the last year and a half. You might NOT expect that we rarely use the benefits because most of the doctors we visit are considered alternative and thus generally don't accept insurance for payment, meaning, we foot the bill. We have also been blessed with good health and work hard to maintain it. We pay premiums for health insurance, although we can barely afford them,  because we are responsible citizens and because we know from our experiences with our daughter that the unexpected happens.

I am sure that you are nodding your head right now because you've heard it before.

I'll sum it up: my daughter needs another infusion in about six to eight weeks before we will see any results. If Anthem Blue Cross had approved the treatment prescribed by her doctor when the disorder was diagnosed, we would be nearing the time for the SECOND treatment and that much closer to relief -- relief from constant seizures wracking our daughter's wasted body and wreaking havoc on our family.

As a parent advocate, both paid and volunteer, as a board member of The Epilepsy Foundation of Greater Los Angeles and, most importantly, as a mother of a child with a severe seizure disorder, I implore you to regulate these gross infractions of Anthem Blue Cross. I know that I am not speaking only for my child. You know that I am speaking a tired story -- of inefficiency, ignorance, mediocrity, amorality, and systematic corporate greed run amok at the expense of children.

I hope you will help to change this.

Sincerely,
Elizabeth Aquino

Now for the Gratitude!!!
Sophie had her first infusion of immunoglobulin and it went well. We were at the infusion center with a team of incredibly efficient and kind nurses for about seven hours. Despite being exhausted (you know how much I hate hospitals and it was difficult to see Sophie feeling so terrible), I read your comments on my blog and felt your good wishes. I am grateful.

Bitter Laugh of the Day

The phone rings, and I answer it.

Hello?


Hello? Hi! May I please speak with Sophie?


This is her mother. Who may I ask is calling?


Oh, yes. I see the birthdate, here. This is Bessy from Anthem Blue Cross. I'm making a courtesy call to see whether you might like to sign up for our Case Manager Program.


You mean someone who might help me to get your company to respond appropriately to my daughter's doctor's medical orders?


No, Miz Aquino, the Case Manager can help you figure out your benefits and help to educate you about your daughter's healthcare needs.

You're kidding me right? (And now I just go into a long and boring story of how I've waited SIX WEEKS for my daughter to receive a necessary medical treatment for her seizures. Six weeks from diagnosis and doctor's orders to treatment.)

Silence.

Would you like to sign up for the program?


Bessy, I appreciate the call, but frankly I don't have one whit of faith or confidence or trust in Anthem Blue Cross to do anything in my child's best interest. If a Case Manager can help me to expedite things through your systems, that would be great, and then I'd be happy to sign up.


Well, the Case Manager can't expedite things, but she can help you help your daughter with her chronic health condition. Wouldn't you just like to place one toll-free call to her?


No, thank you.


I hung up the phone. I don't want to beat a dead horse, but who, again, complained about healthcare reform by crying SOCIALISM!  and I don't want any government hack coming between me and my doctor!

Final note: Perhaps, while you're reading this, Sophie and I will be at the infusion center, getting the necessary intravenous immunoglobulin for which we've waited not-so-patiently for almost six weeks.  Let's all send a message to the universe that it helps --

Ghetto Camp

I wasn't going to even use the term "ghetto camp" on my blog because I was feeling too politically correct and I'm sort of disgusted by people of means, myself included, that lift words like ghetto, words that signify something serious, something that I actually know nothing about, but then I thought what the hell, I think it's funny to call the camp where I dropped my oldest son off this morning ghetto camp to signify that it's right here in Los Angeles, in a giant park and that it was incredibly cheap, cheap enough for us to afford when we are literally three steps away from insolvency.

So.

I dropped my oldest son off at Ghetto Camp today. But before we got there, we ran around like chickens with our heads cut off getting ready. Oliver had earlier insisted that he did NOT want to go to overnight camp, so I signed him up to play soccer all week. Soccer is my sport, he told me during baseball season, not baseball. This morning, naturally, he decided that soccer is boring and he wished that I had LET him go to camp. The boys have been home from school, now, for two weeks, and they've been playing and having a good old time, but let's just say that their bickering and wrestling that goes a little beyond play is getting irritating to me. They're getting on each other's nerves as well, so having a week apart was going to be good, I thought. Because I'm a bad mother, Oliver is nine years old and still doesn't know how to tie his shoes, and because they are going to be apart from one another for five whole days, and love each other so much (sarcasm implied), imagine my surprise when I came upon this freaky scene:

Henry helps Oliver tie his cleats.

After tearful good-byes, Henry and I left the house and drove up to Ghetto Camp. Henry said that he was so excited but his stomach felt weird. That's butterflies, I said, and I realized how much I love that expression. It turns out that Ghetto Camp is adorable -- like something lifted from my childhood. It looked like a mini version of Yosemite, actually, with pine straw everywhere, birds singing and a cool breeze blowing through the pines.

The only thing that looked remotely ghettoish was this

and I didn't ask any questions.

Henry randomly got a bunk with one of his best friends --

And I tried not to cry when I hugged him good-bye.

Today

I thought about taking a break from blogging or at least spilling my anxieties and more onto the virtual page. But I really don't want to because it's one of the few things I do that are really, really enjoyable. Hmmm-- enjoyable might not be the right word, though, as spilling my worries and fears is a relief and, at best, cathartic (one's identity cannot and mine will not be wrapped up in misery, even a common one).

I love having a place to put things that I love, whether it's poetry or photos or excerpts from movies and music and observations about mundane craziness. I don't love but need a place to parse out my complex thoughts on disability, of coping with challenges and getting through and into this life that I'm leading. It's far less lonely to do this, to think almost aloud when I know that someone, somewhere, is listening.

And then there's the inspiration -- the amazing storytelling that I read every single day. The poetry and design and crafting and incredible living -- the writing that I do offline has been inspired, I think, because of this sharing, and I don't think I could now do without it just as I could not stop writing.

I've gotten several emails over the last few days from some of you. Worried emails, sweet emails, concerned emails - that I'm in a dark place, that things are just too, well, too. And you are right. I am in a dark place, but it isn't unfamiliar and I'm not lost. I can see you and hear you.

In the middle of the journey of our life I came to myself within a dark wood where the straight way was lost.

                       Dante 

Jobs and an Exercise in Memory

I'm looking for another part time job. One that I can do mostly from home with a little travel thrown in. Lots of writing and reading, preferably. In the meantime, here's a list of all the jobs that I've had, that I can think of, where I was actually PAID (amateur neurologist not being one that I'm paid for --)

1. Stock girl 
2. Babysitter
3. Summer craft camp business owner
4. Salesgirl 
5. Lifeguard
6. Bookstore clerk and shelver
7. Waitress 
8. Advertising intern 
9. Jewelry store salesgirl 
10. Cocktail waitress 
11. Advertising intern 
12. Ice-cream scooper
13. Cashier at Honey Baked Ham (perhaps the worst job I've ever had)
14. Hostess
15. Waitress 
16. Transcriber and Research Assistant 
17. Deli girl 
18. Brokerage Research Assistant 
19. Food stylist/caterer
20. Cook 
21. Waitress 
22. Baker 
23. Prep cook
24. Home baker
25. Salesgirl and shelver 
26. Slave at Hale and Hearty, New York City (I called it Hell and Heartless)
27. Commis and Pastry Cook 
28. Caterer/Baker 
29. Assistant Pastry Chef 
30. Pastry Chef 
31. Cake Baker
32. Writer 
33. Playground supervisor (I am totally not kidding -- I was desperate)
34. Parent Co-Chair for national healthcare improvement organization
35. Grant reviewer for Department of Health and Human Services