Two Years, 745 Posts

First of all,

THANK YOU!

Today is the second anniversary of beginning my blog. I think that's called a blogaversary, right? The gift to give is cotton. Hmmmm--

I'm thanking you today for sticking by me, in more ways than one. During the last few weeks, in particular, I've received so much support and so much love from everyone here that I don't know what I might have done without it.

Honestly.

I'm happy to report, too, that the insurance industry has decided to approve Sophie's treatment and that we now have only to wait for a bed at our hospital. I am

tired.

Gratitude to you.

That's It

Now I'm so mad, so upset that perhaps a rant here on the blogosphere will alleviate some of the anguish I feel. I'm titling this photo Reality:

This is my daughter, Sophie, who has been in a steady decline with increased seizures, weight loss and a general malaise for months. She was diagnosed with ESES, a rare and devastating seizure syndrome, for the second time (the last episode was five years ago) one month ago. Her neurologist prescribed treatment with IVIG (intravenous immunoglobulin), a treatment that she received successfully five years ago.

It has been four weeks since the diagnosis, but she might have been developing ESES for a while. I am watching my daughter waste away WHILE THE INSURANCE COMPANY, ANTHEM BLUE CROSS OF CALIFORNIA, for which I pay tens of thousands of dollars in premiums,  FUCKS AROUND FIGURING OUT AND "REVIEWING" WHETHER THE TREATMENT SHOULD BE COVERED. I spoke with my doctor's office manager today who said that it is still under review. She hopes to press urgency upon them tomorrow morning.

I am so upset that I've wept, profusely. I am frustrated and angry and lashing out at pretty much anyone who has ever had a kind or supportive word about our healthcare system, about the insurance industry, about the bullshit idea that we live in a country that is GREAT. I have gotten advice from friends and family that perhaps I should contact one of my very wealthy friends, someone powerful enough to bypass this system. And I have to say that that makes me cry BULLSHIT even louder. Of course, I will do that, but why should I have to do this? Why should the damn almighty dollar determine EVERYTHING?

And, yes, I think my daughter deserves this treatment. I believe I've paid for it by the hundreds of thousands of dollars that I've probably spent over the years in premiums. I believe that Anthem Blue Cross is systematically preventing my daughter (and countless others like her) from receiving medically necessary care because it doesn't help THEIR FUCKING BOTTOM LINE.

Giveaway while I'm waiting

I just got a new Moleskin cover for my Kindle, and I will happily give away my regular leather Kindle cover to anyone who comments here or on my earlier post.

The cover is relatively new, black and retails for about $35.00.

Go for it! Today is your lucky day!

Waiting

The scanned photo above is something that screamed out at me yesterday when I looked through my mail. It was part of a larger dental postcard -- besides wondering who responds to dental advertisements, I had to laugh out loud at the idea of free IV sedation. I'm wondering if I could get some -- without the dental implant surgery, of course.

It's been over three weeks since Sophie received the diagnosis of ESES and was prescribed the treatment of IVIG (intravenous immunoglobulin).

We are still waiting for our insurance company, Anthem Blue Cross, to approve the treatment. Since the diagnosis, I'd estimate Sophie's seizure frequency as anywhere from one large one to five large ones each day, accompanied by the usual small clusters throughout each day. Extreme fatigue, weight loss and excessive drooling are hallmarks of ESES for Sophie, and these continue. Please don't comment with suggestions to get the doctor to expedite this process. We're doing everything we should be doing and THIS IS THE WAY OUR HEALTHCARE SYSTEM WORKS.

I read in the paper today that villagers in Afghanistan with medical problems are being helped, in extraordinary ways, by our soldiers. It's all part of the Hearts and Minds program. So while we're busy spending billions of dollars bombing the hell out of an insane and evil regime, as well as thousands of innocent people, we're picking up the pieces by helping them with their medical issues. At best, this is wonderful; at worst, it's absurd.

Conservative bloggers are going at it with the Al Gore/massage scandal because we have time for that, here in the greatest country on earth. The governor of Mississippi, Haley Barbour (hailed during Katrina as an effective manager of the disaster and an avowed supporter of the federal government run by his political colleague Bush), is ragging on the Obama administration's response to the oil spill as its greasy claws begin gripping the Mississippi coast. The Supreme Court gave another boost to the ridiculous right to bear arms amendment of our constitution.

I am looking for encouragement -- anyone? -- to not just throw up my arms at this silly, sad country of ours?

I'm waiting.

Things

that don't inspire me:

1. people who make a lot of money with little effort

2. humidity

3. Republicans (I probably like you, but you don't inspire me)

4. Republicans who use cliches like big government, tax and spend, welfare moms

5. insurance companies

6. petty anxieties

7. Cardinal Mahoney

8. the color mauve

9. nationalism coupled with sports

that do inspire me:

1. new blogs like Watching the Paint Dry

2. Steve Lopez

3. people who work incredibly hard and make no money

4. people who tirelessly work and fight for the disabled and vulnerable, like Polly Arango, who died yesterday tragically and unexpectedly

5. my special needs peeps

6. every blog on my blogroll

7. the color blue, in every shade

8. President Obama, even if I wish he'd be more progressive

9. Sophie, Henry and Oliver

Kid Art

by Oliver

by Henry

June Gloom

Have you ever heard of it? Every morning in June, Los Angeles looks like it is covered with a gray blanket. It's the marine layer, choking back the sun. It's all the more dramatic because of what follows when by some miracle, the blanket is lifted, the skies are brilliant blue and the sun is warm on your face.

Gray, sunny, cloudy, clear, depressing, uplifted, loud, quiet, well, unwell -- each is defined by and necessary to the other.

Good morning, Monday.

Sunday Prayer

Claire, at life with a severely disabled child has this prayer, that she wrote, posted on her sidebar.

It is my prayer today.

MY PRAYER

In this moment I accept that I have been given care of a very fragile person.

I accept that I may likely never know why this task has been passed to me.

In this moment, I accept that I need not know more than the fact that what I do has value.

With that, I will care for this person to the best of my abilities.

I will forgive myself for the days I could do better, but don't.

I will forgive myself for the days I would do better, but cannnot.

I seek to have clarity of thought that I might make choices most in balance with the many intertwining lives, including my own.

I seek to be supported in whatever ways financial and emotional that will maintain this balance.

I seek to learn how to draw from a well of infinite patience and energy.

I open myself up to the possibility of joy, of fulfillment, and of grace.

I accept that, in this moment, it is all I can do.

My Kind of Movie

I saw the movie I Am Love tonight, an Italian drama directed by Luca Guadagnino, starring the eerie and amazing Tilda Swinton. If I told you that I was so utterly transported I contemplated leaving my husband and family to start a new life, would you believe me?

This is the kind of movie that one rarely sees anymore. It's an homage to old films and filmmakers, particularly Hitchcock and Visconti, but it's got almost an amoral streak. There's a scene during which the entire theater literally gasped, and a relentless and almost reckless pace that sweeps you along. It's ridiculously beautiful and romantic and, like I said, transporting.

When I left the theater and drove home in the late afternoon sunlight I thought of people I once knew, of the person I once was, of the person that I still might be.

Yard Sale

Intake: $4.00
but we forgot about advertising. We'll do it again, next week, so come on by.

Fathers Face Issues

I'm not much for educational videos, but I thought this was a particularly insightful conversation between three fathers of children with special healthcare needs. I hope you'll share it with the fathers you know -- and mothers, actually, who care for children with special healthcare needs --

Click HERE.

Yes, we have apples in our backyard

and oranges, tangerines, Meyer lemons, Fijoia and loquat --

Haiku Friday

Rebecca at recuerda mi corazon has started a Haiku Friday chain. Haiku is not something that I relish reading or writing, actually, but I love Rebecca and, who knows, perhaps it will inspire the dryness I've been feeling lately. I've certainly read beautiful Haiku before but the labor of it eludes me.


Oh, well.


Here's mine:


Waiting and waiting
Things begin and nothing ends
I go mad with it

A Tree worth climbing and other stuff

I downloaded this image from the Center for Contemplative Mind.  I'd like to first climb up to the Stillnesses Practice branch and then perhaps swing down to the Movement Practices. I'd hang out there a bit before climbing back up to the activist practices branch and then swing down off of that into the generative practices branch.

How about you?

Here's a site with a free, downloadable cookbook. And the recipes look beautiful. And did I tell you that it's free? And beautiful? Click here.

It's time for my favorite photo

I read in the Los Angeles Times newspaper last night that our City of Angels has hired a new deputy superintendent of the Los Angeles Unified School District. John Deasey comes with an illustrious pedigree, his latest job at The Bill and Melinda Gates Foundation. Rumors are that he is being groomed for the top position when Ramon Cortines, the current deputy of the whole shebang, retires in two years.

Mr. Deasey will earn $275,000 in his new position, which is evidently $25,000 more than Mr. Cortines currently makes.

It's good to know that salaries are on the rise for these executives.

Early Summer, Late Afternoon

Morning Stream of Consciousness

I sipped my coffee this morning into which I had sprinkled some cinnamon I don't know why and when I stood up to close the washer door Henry said I hear Sophie and then that hearing turned into panic because he didn't just hear her but I did I heard her crying out the way she does when she has a seizure so I place the cinnamon scented coffeee down and ran down the hall not believing that she could have yet another seizure when she had been given diastat last night even but she was so I bent down and then sat down next to her on the bed and waited for her to be done and we're always sitting and waiting for it to be done waiting for the insurance to approve the treatment and waiting for the treatment to work and waiting for the doctor to call and waiting for it all to be over but not really over because we know what that means and when Oliver came in he asked in a different tone of voice so different from his usual strength of tone why is Sophie having so many seizures and she didn't have any last week I guess the Amma hug isn't helping her anymore and I grabbed him up into my lap where I was sitting, waiting and he buried his head into my shoulder and I was reminded of him as a baby when his head fit so neatly into that space between my shoulder and chin and there he was, nine years old and asking the questions and I said I don't know and then I said that things would be all right and that I know you are worried and sometimes I worry too but we can pray that she gets better and would he like me to do that and he nodded, his head on my shoulder and I said some sort of prayer to God, the Lord, whatever and whomever gives comfort, still, to a nine-year old boy who I peeked at through my half-closed eyes and his were closed and he was concentrating on the words I said Dear Lord, please heal Sophie from her seizures and help us not to worry. Then he climbed down off my lap and ran out of the room.

Oliver's Oil Gusher5000inator

Oliver recently saw a photo of the leaking oil in the Gulf, and he was horrified. I told him to draw one of his fantastic action photos that showed a solution to the leak. This is what he drew and this is what he told me:

That piece on the left is the pipe that is leaking the bad stuff. A guy with jet packs swims down to the leak and tries to clog it up, but if he doesn't, there is a back-up plan. If he does, the guy above the spill (in the right top corner) will press the big, black button and that will stop all the time-bombs from exploding. If the first guy doesn't clog it up, the whole thing will blow up. That's good because the oil thing will blow up and the submarine will have tools to clean up everything.  The hose squirters at the bottom will take care of the fire when the whole thing explodes. It's special stuff that works in the bottom of the ocean.

Reverberation

I read, somewhere, an admonition that if we meditate, we must practice and not talk about it.

I do a lot of talking about it, and I admit to thinking that isn't that enough?


It's not enough. I do have to practice, find that time to sit, close my eyes and meditate, move into quiet and gratitude.

This morning I was reading blogs and this came up. The bell meditation was profound.

The Longest Day of the Year

I forgot about the Solstice.

Where I am

at Hopeful Parents. Come on over,  if you'd like --

Father's Day, Sort of

I feel sucked dry today. And I know it's Father's Day and I have nothing, nothing but gratitude toward The Husband, the Father to my children. I feel nothing but gratitude, too, toward my own fantastic Father.

But I have nothing to write and actually don't feel like writing.

Here, have a glass of milk and don't think I'm terrible.

Saving Energy and Other Lame Thoughts about the BP Spill

I was talking to a friend last night at a party, and she said that she had started hanging her clothes out to dry instead of using her dryer. In addition to saving energy (the biggest reason she does it), it's evidently easier on your clothes. When I mentioned it to my mother, she thought I was nuts and claimed that it looks so terrible. I don't care about the looks of it,  and at risk of seeming incredibly bourgeois bohemian, I'd love to know if any of you do this.

Next, I'm thinking about starting a vegetable garden.

Good Things

The weather is astounding -- blue skies and cool breezes, warm sun and purple blossoms floating around. I don't know why I ever didn't live here.

Since Sophie was hugged by Amma, we have been applying sandalwood paste (made from a stick of sandalwood that Amma blessed) to her head each night before she goes to bed. She has had five fantastic days, free of seizures. Now that I've written that out, please knock wood three times, spit on the ground or do whatever it is you do if you're superstitious.

I applied for a fellowship today the details of which I won't bore you, but I filled out a seventeen page application and spent hours and hours on it. I then LOST THE FILE. Superstitiously or perhaps fatalistically, I decided that I couldn't possibly redo it and therefore it wasn't meant to be. I went out to lunch with my good friend D. who is also a computer genius.


HE FOUND THE FILE!


Please notice how I buried the news about Sophie in the middle of this blog post. That's how superstitious I am. You can comment all you like, though. 


***Just in case, you're wondering -- the IVIG treatment for Sophie has not been approved, yet, by the insurance company. We're still waiting --

Reasons to love Los Angeles

Jacaranda trees in bloom

Not just Trader Joe's (although I do love Trader Joe's) but that I went shopping today when the store had just opened, and I walked the aisles with a small family, a woman and her four children. While she piled her basket with loaves of bread and vegetables, she chit-chatted on a cell phone the entire time, audibly, in a cheerful voice, about swimming in the afternoon, making dinner, weekend plans. Each child wore a long black robe and the three girls wore head-scarves. The woman herself was completely covered, except for her eyes in a black burkha. I can't help but think strict Muslim garb is creepy, especially that worn by the women, but who am I to judge, especially when the woman appeared to be quite jolly?

As I left the store, walking in front of me was another woman with her many children, dressed in a skirt to her ankles and an obvious wig, the garb of the Orthodox Jews who live in the neighborhood as well. 

I'm not going to make any commentary, here, but if this can happen at Trader Joe's, why not everywhere else?

A sight for sore eyes

Henry and his coach --

The parking sign outside the social services building

where I went for my orientation as an In-Home Supportive Services worker.

Red Hot and Toxic

The newspaper sitting folded on my desk has been there since Thursday, June the 3rd. I read the front-page article, folded the paper carefully up and placed it on my desk with the intent to write about it. Perfect for LA Moms Blog, is what I thought. But I'll face it later. 

It's been sitting on my desk for almost two weeks, glowing red hot and toxic. The article is titled Disabled students losing 200 classesand reports on the budget crisis reaching The Los Angeles Unified School District's most vulnerable students. We all see these articles daily, and those of us in the school system skim them and sigh. If we've got any energy left, we work to raise money at our schools so that our children's class sizes remain smaller or perhaps so that aides won't be let go, to maintain what little art and music and physical education programs there are stay that way. And the deluge of bad news keeps coming. I have two boys who attend a neighborhood charter school with remarkable parent-driven support. I also have a fifteen year old with severe disabilities who attends one of the city's lowest performing schools, where she is in a class for moderately disabled students and receives minimal services. The vast majority of the students there are disadvantaged and I have seen, first-hand, that they are getting screwed by the LAUSD. But this blog post is not about them.

Read the rest over at LA Moms Blog HERE.

Amma

I woke at 4 am this morning and sat up, looking around. The Husband was sleeping with Sophie and everything was quiet and dark. I didn't feel anxious, either -- sometimes I'll wake like that and seconds afterward will hear Sophie having a seizure, as if I'm some sort of seizure-alert dog. The bed wasn't shaking from an earthquake and, like I said, all was quiet and I felt no anxiety. I lay back down and as I closed my eyes, I realized with a startling clarity that today, June the 14th, is the fifteenth anniversary of the day Sophie was diagnosed with infantile spasms. I don't formally recognize this day and for many years have only given it cursory atttention -- in the beginning, the first ten years or so, I'd feel a dread every time the day came around, but I don't remember the last time I really thought much about it.

Why, then, had I woken and sat bolt upright?

Well, today was the day that I was taking Sophie, Henry and Oliver to meet Amma, the living saint. In the strange and wonderful world of bloggers, I began corresponding with Teresa of All of Us, and she had sent me some of Amma's blessed ashes and a postcard of her many months ago. They have sat in Sophie's room ever since, the Indian's beatific face smiling out from the bookshelf. I have called upon her in moments of despair, the same calling out that I'll do for God, for Jesus, for the Buddha, for Guru Ram Das. Teresa contacted me a while back and let me know that she would be visiting Los Angeles and would love to introduce me to Amma.

So, today, the fifteenth anniversary of Sophie's brutal diagnosis is also the day that we were all embraced and blessed by Amma.

I have no other words except Hope.

You can't take the Catholic school out of the boy, I guess

On Saturday night, I went to the big yearly fundraiser for my boys' charter school. For those of you new to my blog, both Henry and Oliver attended Catholic school for years (Henry for four and Oliver for two). I wrote about why I took them out of Catholic school and transferred them into a progressive charter school HERE,  if you want to read more, but back to the fundraiser --

One of the things that the children at the school all do in preparation for the big night is an art project. There is a class project that is auctioned off for hundreds and hundreds of dollars at the live auction, and then there are the individual pieces that one can bring home for a small donation. When I walked into the event, I saw the second and third grade projects arrayed on long tables and inwardly groaned. Not only were there at least a hundred of them, but they appeared, at first glance, to be junk sculptures -- those cardboard box dioramas with bits of straws and clumps of glue, toothpicks and paint and toilet paper rolls arranged artfully. I sighed and wondered where in the hell I was going to put Oliver's latest masterpiece (if you're the parent of a very young child, trust me -- you'll get here, one day) and moved on to buy a ticket for the bar.

Later that night, as I was leaving, I stopped at the table to pick up Oliver's art piece. It was only then that I saw the title of it:

The Godinator

I really couldn't possibly do justice to the thing, without posting a photograph. So here it is in all of its Inquisition-like glory:

There's a banner there on the top with peace signs, and this: ! GOD ! There's a simple machine at the bottom, a sort of crank and gear shift that rotates the two crosses at the top. The third graders evidently studied simple machines in social studies and Oliver used his knowledge of them to great affect (or is it effect?). The walls of the box are lined with carefully-placed tips of toothpicks -- and I'm telling you, those things are SHARP. The crosses are each adorned with a plastic flower and burst out of a Sparkletts dixie cup. I stood in wonder at my son's creation and then paraded it around, exclaiming and laughing over its weirdness.

When he woke up this morning, Oliver asked me what I thought about it.


Spectacular, I said. Tell me about it.


Oliver told me that he wanted to create something that praised God and everything that He had given him. He had specifically put plastic flowers on the cross for that reason. He wanted to protect God, too.


From what? Henry asked. He was clearly bored and annoyed.


From the Devil, Oliver replied. That's why there are spikes.


Henry rolled his eyes.

Honestly, I have some amazing children, no?

Baseball Season is Over!

Oliver, holding the League Championship Trophy (Go Red Sox!)

The Black and White Ball

I wondered whether or not to let Sophie go to her school's Black and White Ball. She is graduating from eighth grade, but she goes to a school where we've never really been a part of the larger student body. She's in what's called a special day class, and while that small community is a bright and warm one, the rest of the school is enormous and we've never really felt like part of it. I almost always dread the "normal" activities -- where I feel compelled to go and almost pretend that we're just like everyone else. It's a grit your teeth and we're here because we're integrated into normal life but not really kind of feeling, and as the years have gone by and I've grown more confident in accepting what our life really is, I haven't had much of a problem saying no to some things.

But when I asked the aides in Sophie's class whether or not I should bring her, they insisted that of course she needs to come! And I found out that I not only didn't have to go, but that I was not allowed to go! It seems that the Eighth Grade Black and White Ball is for the students only. It was good comeuppance for my own negative projections -- and an out for me, too.

I dressed Sophie in her white, silky dress and some black tights. She is weakened right now by ESES and looks very, very thin, but she smiled when I told her that we were going to the dance. She really did. And when I dropped her off, I gave her aide my camera and begged her to take some pictures. She walked off with her friends Maria and Caesar and evidently danced with them, too.

A life of her own.