A Birthday Song for Oliver

6:45 AM Birthday Donuts Run!

It's my baby's birthday. Oliver was born twelve years ago, a bit after 1:00 in the afternoon. He makes me laugh. He makes me gasp. He is at once sweet and ferocious. I adore him.

Happy Birthday, my Oliver.

Listen to this:

by My Brightest Diamond

I have never loved someone the way I love you
I have never seen a smile like yours
And if you grow up to be king, or clown, or pauper
I will say you are my favorite one in town
I have never held a hand so soft and sacred
When I see you laugh, I know heaven's key
And when I grow to be a poppy in the graveyard
I will send you all my love upon the breeze
And if the breeze won't blow your way, I will be the sun
And if the sun won't shine your way, I will be the rain
And if the rain won't wash away all your aches and pains
I will find some other way to tell you you're okay

You're okay
You're okay
You're okay
You're okay
You're okay
You're okay
You're okay



And here are some choice Oliver posts:

The Best of Birthdays highlights Oliver's personality.

Careening Around shows Oliver's fantastic taste in women.

The Mayor shows Oliver's compassion and charm.

You Can't Take the Catholic Out of the School-Boy shows Oliver's fierceness and creativity.

Oliver, Sandy, and the Blessed Virgin Mary shows Oliver's irreverence.

No Name-Calling Week shows Oliver's courage.

Tequila and Hot Dogs shows Oliver's awesome dance talents.

Drug Mule, Part 3,456,896 in a series**

Good Lord, ya'll!

I think I've graduated from drug mule to racehorse! I found out about a non-profit organization that gives grants for certain medical conditions to cover unaffordable medical costs, so I applied and received word that we will be receiving financial assistance for the costs related to Sophie's diagnosis. This means I'll be able to go to our local Rite-Aid and pick up the Onfi prescribed to Sophie instead of engaging the help of Canadian friends. I heard about Caring Voice Coalition, ironically, from a representative of the drug company that makes Onfi. He got my number from our neurologist who has been busy helping me to figure out a way to get this drug to Sophie without resorting to swallowing tiny packages of it and slipping over the border that separates The Sane from the Insane (that would be Canada and the United States). My first reaction when The Man From Big Pharm called was to pull out my breadstick and start taking deep inhalations. Let me get this right, I remember saying to The Man From Big Pharm, instead of lowering the cost of your drug so that normal people can afford it, you donate tens of millions of dollars to non-profit foundations to pick up the cost of said drug? The Man From Big Pharm laughed uncomfortably and told me that age-old expression that Little Men and Women of Industry are all trained to say: I understand your frustration. Reader, you know me so I'll leave it to your imagination what the rest of the conversation entailed. I eventually thanked The Man from Big Pharm for listening to my tirade, took down the name of Caring Voice Coalition, sighed and moaned for a bit about the insanity of it all and then investigated, filled out the application, sent it off and waited.

Good Lord, ya'll! We did get the grant -- a sizable one that will cover the expense of Onfi for the near future.  I just have a few more papers to sign, some telephone calls to make and I think we're set! I am grateful for the help of our neurologist in pleading our case with Big Pharm. I am indebted to the two Drug Mules that brought Sophie's medication from The Sane across the border to The Insane. I am filled with gratitude for the sweet, efficient woman assigned to our case at Caring Voice Coalition. I'm even a tiny bit thankful that The Man from Big Pharm allowed me a holy and righteous rant. I'm also grateful to all my readers here and just know that you'll allow me to continue being a bit mulish about Big Pharm in general.




**If you're new to this blog and want the back story, read where it all started and my favorite post  HERE. Then read HERE and HERE. If you search for all my posts that contain the words "drug mule," you'll find a veritable bonanza.

Best and Worst (with an update, inspired by Michelle)

Best:   The movie I saw today, Love is All There Is. Perfection. Pierce Brosnan. Everything about it.

Worst:   The troll/Anonymous commenter on my last post. You'll know who when you click back there and read it. I actually think it's more funny than anything else and wonder about its authenticity.

Best: All of ya'll.

Worst: Hearing that the job I want isn't available until August.

Best: Still reading War and Peace and really loving it.

Worst: Enervating arguments on other people's blogs.

Best: Encouraging words to find an agent, finish my book.

Worst: Finding an agent and finishing my book.

Best: This (relating to aforementioned troll):



Worst: That Jimi Hendrix is dead and there are no recordings of this song that I could find.

Passed out, even before getting out of bed

Oliver has begun a new regime of waking himself up in the morning, taking a shower, getting dressed and making his lunch all on his own. To give you a sense of why this is momentous -- and he has been doing this successfully, now, for more than a month -- before embarking on the regime, our mornings were so fraught with drama that they were operatic. That is not hyperbole: if I were to run away from home and disappear in the South Seas, it would be around 8:10 on a weekday, after I dropped the Brothers at school.

Anywho.

As I was saying, the new regime has also given Oliver a sense of success and accomplishment that I never could, seeing as I was shaking him sometimes violently to get out of bed, yelling at him to hurry up and force-feeding him breakfast.

That was hyperbole.

Part of the regime is coming into our bedroom and lying down next to me to "snuggle." Now, I know this isn't going to go on for very long, and it's technically not really snuggling. What happens is that Oliver lies down next to me, fully dressed with his hair combed neatly, and then we just chat. Yesterday morning, this is what he told me: Mom, you know when you're not lying down like this, you have a really cool face. I asked him what he meant. He said, Well, like the other day when you were wearing that pink shirt, and you walked by and I looked at your face and I couldn't believe it. I said, Couldn't believe what? He said, Well, I know you're my mom and I probably think you're beautiful like most boys do for their mothers, but there's something different about you, too. I think it doesn't have to do with being my mother. I was listening now, holding my breath. He continued. There's just something about your face that is alive and cool. Like you're realllllllly beautiful in a way. 

Reader, you know I told him thank you and that was the nicest thing that anyone has said to me in a long time. And Reader, just because he's the Big O -- the boy who turns twelve years old this Friday, the boy who drives me absolutely batty most of the time -- he also said this:

Mom, I kind of get why Dad picked you to be his wife. I mean, I'm just your son so it's not like THAT, but I think I'd be lucky if I grew up and met someone whose face was like yours.

Honestly, folks, if I weren't already lying down, I would have passed out.

Too bad the LAUSD doesn't know this

IEP, Year 15: Still Grim

I don't have it in me today to even be funny. In fact, my usual humor (and I'll take credit for having a decent sense of humor) fails me. Today I'm tired of using irony and levity to make something bearable. I attended my fifteenth IEP, and it was rushed, incomplete and devoid of anything constructive or positive. Even an attempt to get a safety harness for Sophie to wear on the school bus was met by the most labyrinthine, ridiculous procedural bullshit that I am silenced. Even Monty Python jokes would not suffice. So, I'm tired of being ironic or even effectual in my advocacy and will, instead, mark the day with these words and that photo.

I will turn my head to the dog at the door, the goofy mockingbird, the squirrel scrabbling up the spindly palm, the pink riot of roses out back, the lemons nearly womanly on the shrub. I'll call the day as it is.

SSI -- Mission Almost Accomplished

So, if you've been keeping up with my efforts to obtain Supplemental Social Security for Sophie, now that she's eighteen years old, I am happy to report that the new debit card and first check has arrived. While the final approval will take around six months, Sophie is already eligible to receive the million dollars per month owed her, and I bought the pretty blank book pictured above to enter all of her expenses.

In all seriousness, I am so very grateful for the help Sophie is receiving from our government, from your taxes and mine and appreciate that this entitlement is one not afforded to many in this big, old world. A couple of years ago, I used to read and periodically scuffle with a very conservative lawyer blogger in Texas. I remember a post of hers where she paraphrased some politician or right-wing pundit as saying that those "on welfare" were never thankful enough for it. You know what they were talking about -- the welfare queens riding around in Cadillacs and using their diaper money to buy flat screen televisions, lazy and shiftless and unwilling to work, ungrateful for the cash raining down on them from our pockets. It rankled me then, but not in the way I imagine she or the pundit would want. I know, for a fact, that most of us receiving assistance would rather not have it be so, but that we are grateful beyond imagining for it. I imagine that it's the rare person who isn't grateful for any help at all taking care of their young adult with disabilities. We probably can't grovel at the world's feet, but it's pretty close.

For all of you out there who are waiting for your own children's 18th birthdays to come, hang on. The process was far simpler and more efficient than I had foreseen, another dreaded milestone that came and went with far less fuss and angst than I imagined.

So, it's Monday morning, my favorite day of the week, and I've eaten the above digestive biscuits that I made yesterday -- not all of them -- for breakfast with my coffee. It's raining -- raining! raining in May in Los Angeles! -- the boys and Sophie are off to school, and it's a perfect day for an Emily Dickinson poem. This one is a tad obtuse, but if you read it aloud a couple of times, I think it'll make sense.

The Brain

The brain is wider than the sky,
For, put them side by side, 
The one the other will include
With ease, and you beside.

The brain is deeper than the sea,
For, hold them, blue to blue,
The one the other will absorb,
As sponges, buckets do.

The brain is just the weight of God,
For, lift them, pound for pound,
And they will differ, if they do,
As syllable from sound.

Emily Dickinson

Reader, what is your Monday like?

How to cure the Sunday blues (with an update about a giveaway)

Self-portrait on a red wall

1. Read about someone who was politically incorrect, like Dorothy Parker, who said, Tell him I was too f*&king busy, or vice versa. 
2. Wish you could say that to someone but sort of happy that you can't.
3. Do laundry, mounds and mounds of it, but don't fold The Brothers' socks. Let them fold them.
4. Read another 30 pages of War and Peace and realize that it's getting good and you have more than 1000 pages to go.
5. Get a reminder that this Tuesday is Sophie's 15th IEP at 8:00 in the morning. Seize the day, however blue it is, since there's not an IEP.
6. Play Words with Friends throughout the morning with one of your best friends in the world who is also turning 51 years old tomorrow, but since he's in Germany, it's already his birthday. Happy Birthday, dear D.
7. Plan to see a bunch of movies in the coming week since you haven't heard, yet, about The Job You Hope to Get.
8. Organize all your paperwork so that tomorrow, Monday, you can go see a movie.
9. Make Chocolate Digestive Biscuits from a recipe on one of your favorite cooking and reading blogs. ( and Yummybooks is having a terrific giveaway!)
10. Remember that it's Mother's Day next Sunday and you haven't gotten something for your mother, so you have to get up and get out of the gloomy Sunday house and get on with it.

Reader, how do you cure the Sunday blues?

Would Ya'll Be Upset if I Turned This Into a Baseball Blog?

Oliver, catcher and second baseman

Henry, catcher

Would it freak you out if I started blogging my boys' baseball stats? What about if I hosted a giveaway here on a moon, worn as if it had been a shell, and the winner was the person who guessed which brother had the most base hits? I could have The Brothers sign a baseball and send it to the winner. What if I told you that at some point in the first of three games this morning, I actually uttered the sentence, He's fast and he's good-looking! I rarely use an exclamation point, but I uttered that sentence with at least one, and I uttered it to a large man, the grandfather of one of the other players whose own sons both played in the minor leagues. I uttered that exclamation in response to The Big Experienced Baseball Man's own exclamation that Henry hustled. Would it freak you out if I told you that I regularly shouted the words hustle!! let's go!!! and come on, guys!! Look alive!!! 

Clearly, eight hours, 21 innings and three games later, I've lost my mind.

Three Baseball Games

No words needed.

My National Treasures

Oliver declared today "Casual Friday" and chose to wear the above fancy shirt and musical tie. I love the random photo that I took, the light and dark line on his face because that's the way he is. Light and dark and utterly random.

Humor me while I wax praise on my children.

Here is Henry, glorious in a pink shirt:

So damn cute, right?

And here is the usual state of affairs in our car in the morning. The soundtrack is from Henry's iPhone which this morning included Neil Diamond singing Sweet Caroline, about whom Henry asked Do you know this song, Mom? I refrained (as always) from rolling my eyeballs back into my head and answered that I did indeed know it, and that I had actually gone to see Neil Diamond in concert back in 1943. Henry then informed me that the song is popular at baseball games, particularly in Boston, and I nodded my head and pretended to be interested. But I digress. Here is the usual state of affairs (minus "Casual Friday" fancy shirts). It starts like this:

Within moments, it becomes this:

And then this (hands, touchin' hands)

And perhaps this (reachin' out, touchin' me, touching you)

And finally this (Neil Diamond is completely shut out by the shouting):

Thank the good lord above they're so good-looking.

The Plague, David Sedaris, Laughing and All That Is

So, the answer to Sophie's drinking strike last week and horrendous number of seizures, including the hideous gelastic ones, is probably a virus. I've been feeling puny and peaked the last few days and am most decidedly not well today. I've got cotton or something in my head and tears pricking at the backs of my eyes -- not the ones of sorrow -- and while I am able to be up and around and doing the daily shit I have to do, I'm ailing. The Brothers went to school, but both are feeling less than perfect, and who knows if The Husband will come down with it as well. It seems like this year has been a bad one for the stealth viruses for our family. I personally haven't felt great since I came back sick from a business trip I took to Washington, D.C. in early January. I think I'm going to blame it on the government.

Last night, I went to hear David Sedaris at UCLA, an annual treat, and as usual he did not disappoint. He read from his new book, told raucous stories, read from his diary and regaled us with the most vulgar jokes you could ever imagine. That man is funny, but he's also incredibly sweet, and I told my friend this morning that I just know he'd love us if he met us. The show was sold out, and the entire auditorium rocked with laughter which, to me, is about the best thing one can do if your heart is aching and you're tired of it all.

The other thing you can do is read a good book, and while I'm making my way through War and Peace, I'm also reading James Salter's novel All That Is. What a book -- the kind of perfect old-fashioned, carefully crafted writing that one rarely reads anymore -- not pretentious and overdone but real Writing. It's not a cheerful book, by any means, and the ambiance is similar to the stifling decadence and glamour of the show Mad Men. I just can't put it down. Here are two lines that stood out the other day enough for me to text them to a friend:

It seemed his manhood had suddenly caught up with him, as if it had been waiting somewhere in the wings.

And:

She looked as if difficulty of any kind was a remote thing.

I can relate to that last one. It's an awesome line, no?

Reader, what are you reading?

How We Do It, Part XXVIII in a series

New York City, 1997

to Christy, in Maine

When Sophie was a baby, I actually used to count her seizures. I had a plain, spiral notebook -- a small one -- where I'd mark the seizures, tally them. I'd look for patterns, an ebb and flow. Moons waxed and waned, as did the tides, Sophie's bones grew, her baby teeth fell out and her adult teeth grew in. The weather was muggy, it snowed and the Santa Anas blew. She got sick and got well. She met developmental milestones and reached plateaus. She went into crowds agitated and sat alone ignored. She ate strawberries and avoided dairy. She was doped up on drugs and she was weaned. Moons waxed and waned, as did the tides. The earth rotated round the sun, placid, most years, there were sun flares and it was jolted off its axis in March, 2011.

I continued to tally the seizures one two three four and a slash for the fifth. I had notebooks and notebooks of these, a twisted version of the college blue book. I was earnest and hopeful.

I ranted twice yesterday on the blog, came home from a baseball game and heard from the babysitter that Sophie had a lot of seizures, many of them. It seems, sometimes, that Sophie always has a lot of seizures, so many seizures that there's no point in making marks, in filling notebooks, in noting them at all. I stopped filling notebooks years ago. They stand proudly in some cabinet, a record of diligence. I was earnest and hopeful.

I had the thought that I should, rather, track my anger and look for patterns. Many seizures: much anger. Anger displaced. I don't give a damn about Obamacare. I don't give a damn about arguing with conservatives about their stupid notions of guns and liberty. I don't give a damn about conservatives. I don't give a damn that the disabled don't have basic civil rights. I don't give a damn about baseball or gray skies or red roses. Five ten fifteen twenty scratches on a clean white page. I don't give a damn.

I would rather drink bourbon with my friend in Maine, perhaps kiss her on the lips and taste it.

Last night, I sat on Sophie's bed and lay my hand on her head. I closed my eyes and breathed in one two three and out the same. I asked for mercy. Tell me what to do next, I asked, before I got up. Take my anger. Make your own tally.