Guilt and Blessings

The Confession - Pietro Longhi

I confess tonight that I perhaps portrayed the person who came to visit us and assess Sophie's needs in a not-so-good light. I won't even go into the actual meeting because it was really out of this world, a scene worthy of Terry Gilliam's Brazil  -- and I actually so desperately want the services that I don't want to do anything to offend the persons in power. My main aim in jotting down my thoughts is to illustrate the ironies of this strange life we lead -- those of us who have children with special needs.

Sitting at a table with a stack of forms to sign, all of which attest to the fact that your child has received a category of "institutional deeming" or speaking on the telephone to a stranger about checking a box that signifies the potential death of one's child, all while beating up the eggs and grating the cheese for the Friday night omelette is what  I feel compelled to write about because it is not only what I observe, what jumps out at me as it is happening but what I must do. What I must do is write about it. Must write. Write.

I might add that there are many who battle disease in general or poverty or discrimination. My modus operandi is to speak or write the way I see it. Sometimes I sound bitter and sometimes filled with gratitude. Both of these are true. Having a tongue as sharp as a scythe has its benefits when used to break through to the other side. But it can also cause harm.

Above all, I want to impress upon anyone reading this that I am very aware of and grateful for the services that are offered to families with children like Sophie. Not a day goes by that I don't feel a gasp, an intake of breath, for those other mothers of Sophies who have none of the resources I have.

Speaking the Worst

another vintage ad

The social worker from the other day called today. Let's call her Z.

Z: Hello, this is Z. I have couple of questions for you.
Me: Sure, what do you need to know?
Z: How does girl communicate with her brothers?
Me: She doesn't speak at all.
Z: Does she use words?
Me: She's non-verbal. She can't talk.
Z: Does she use sign language?
Me: No. She uses augmentative speech devices but in a very simple way.
Z: How do you know what she need?
Me: I just do, I guess.


We hang up the phone. It rings a couple of seconds later.


Z: This is Z, again. I have another question.
Me: No problem.
Z: The box checked on application says that the girl need 24-hour monitoring. Why?
Me: Oh. I guess I checked that because either her father or I have to sleep with her because of seizures.
Z: Oh. She hurt herself in night then?
Me: Well, no. But we want to be near her if she has a seizure.
Z: Well, usually this box checked if girl might kill herself in the night.
Me: Oh, no, no, no! Her seizures make it necessary that we sleep with her so that we can hear her.


When I checked the box, I just figured that yes, Sophie basically needs 24-hour monitoring. The Husband and I resigned ourselves long ago to the fact that one of us has to sleep with her. We know many, many parents who sleep with their children who have epilepsy. There is the natural fear that she will be alone, seizing, while we sleep and perhaps frightened. There is the fear that she will get out of bed before a seizure and fall down and hurt herself. Above all, there is the fear of SUDEP (sudden unexplained death in epilepsy patients) -- a terrifying possibility that is, sadly, little talked about in the epilepsy world.

There, I talked about it.

The Invade a Hospital Campaign -- Sign Me Up!

Thanks to Allegra at Beading Stars

Apropos of Yesterday's Post AND for all those who lament the golden past...

I saw this on Huffington Post today! A real ad from, I think, 1913!

On Violence, Mental Retardation, Rahm Emmanuel, and the Politician Whose Name I Won't Type

I'm over at LA Moms Blog today, trying to be politically correct....or NOT.

Click here and join the discussion.Or leave a comment here about what you think.

Waiting for the Plumber

Sophie is eligible for In Home Supportive Services and today is the day that the social worker will be visiting her to assess her needs. The woman with whom I've spoken is very cordial and efficient, and several weeks ago I received a message from her that our appointment would be February 9th, anywhere from 11:00 until 3:00 (that's the plumber analogy, if anyone is slow on the uptake).

So, I kept Sophie home from school (which wasn't a difficult decision because she has taken a sudden downturn, perhaps due to the rain), and I'm waiting.

The social worker called at 9:00 to tell me that she would be running on the later side, closer to 2ish because of backlog.

Sigh.

The social worker called about 9:20 to say that while downloading Sophie's case file she noticed that (and I will paraphrase her) Sophie's coding is a 6v which means that there was no linkage and she isn't eligible until the linkage is resolved.


I said I didn't know what she was talking about. What is coding 6v and what do you mean that there is no linkage?


We went back and forth for a bit, with me growing increasingly upset, perhaps tearful and her, kind, but clearly emphatic about the coding 6v and there being no linkage. I'm not kidding you.

I don't even want to tell you who I called and how it was resolved, but it was resolved. I'm sure you remember that I'm an acrobat on a flying trapeze in the circus, right? That's me, over there on the right with the long dark hair and pink tights, hanging from the rope by my teeth.

The 6v and the linkage is taken care of -- there was a misunderstanding.

Say a prayer or send some flowers to the universe while I continue waiting for the plumber. I'll let you know what happens.

*** The caseworker has come and gone. She was lovely and very accommodating. Now we will be patient.

Parent Teacher Conference Day

Boy #1:Triple Chocolate Shake with Malted Milk Balls

Boy #2: The Milky Way - Vanilla Ice-Cream, Butterscotch Sauce, Malted Milk Balls

The Mother: One bowl of Posole, in lieu of anything sugary (because today is Day 1 of limited sugar)

In Need of: One Strong Drink -- think conferences, think seizures, think in general terms about three children...

The Stacks

University of North Carolina at Chapel Hill - Wilson Library

In college I studied in what was called "the stacks" at the old, old library on campus. While the main reading room was a glorious, windowed hall with long, dark study tables and those perfect little click-on study lamps, the marble floor worn and rubbed by generations, it was upstairs in the Tower that I preferred. You took an elevator to the seventh or eighth floor, I believe, and walked a labyrinth of aisles and shelves of books in dim lighting to the carrels lining the walls. Some of the carrels were metal but more were wood and they were pockmarked and pencil-bit with the graffiti of generations of students. I was one of those people who loved school, loved the actual work, the studying, the piles of books and notebooks, the perfect pen with which to take notes, the yellow pads to write my papers, the little lined books whose name I've forgotten that we used for tests.  While some of the carrels were lit by daylight from dirty windows, the place was very dark and spooky at night. It was completely quiet in the carrels, the only sound the turning of pages, the coughs and raised whispers only punctuated the silence. When I'd get tired or sleepy, I would stand up and wander down the aisles, pulling down musty texts and fingering yellowed pages. It was thrilling, actually, to be alone with all those books, the kind of loneliness that settles warm in the body and stays there.

I also loved the carrels because that's where I'd find my boyfriend, equally scholarly except for a not too tiny penchant for smoking the evil weed. When I still had only a crush on him, I'd sidle by his carrel and pretend that I didn't see him, placing my stack of books around the corner where I'd wait until he'd find me. And when it all really started, there was a dark and exciting intimacy to kissing at those ancient desks.

 The library was only open until 11:00 and some minutes before, an old man, I swear, would walk the stairwells and into the stacks, swinging a cowbell. He had a long, Dickensian face and even now I can hear that sound and see his stooped thin body, but I wonder, too, if I've made him up. We'd spill out of our carrels, because who, really, wanted to actually spend the night there, our papers and books shoved into backpacks and wander down, getting into a long line that passed a small desk where library moles made cursory checks ensuring that we hadn't stolen anything precious. In the last year of college, the library Tower was closed and I abjectly began to study in the new, modern library across campus.

I thought about all of this the other day when I clicked on one of my favorite online sites. It's called Typo of the Day for Librarians. 


My secret fantasy is to be a librarian. Just me, with my glasses on, quiet, and a lot of books.

Sunset Blvd, Thursday Night

Flying Mermaids

It's raining again here in Los Angeles and I've spent the entire day indoors. I took a look at the front page of the paper and read a brief story about Anthem Blue Shield (our insurer) and how they're being investigated for what appear to be outrageous premium increases for independent plans (I'll rest my case with that one, although I can't help feeling smug about all the looloos in this country who think government will somehow come between them and their doctors ); I washed some sheets and folded them, made up the beds and ate four Lemongrass Thai Spring Rolls from the freezer. I watched last Monday's episode of Damages and had a conference call for about an hour for my job.

Did I tell you how well Sophie has been doing? I'm not going to say this with any knock on wood caveats because I'm trying to buck, at least for now, my superstitious southern Italian peasant heritage. The heritage that pounds relentlessly within me, whispering that I shouldn't say anything good because, for sure, bad will follow. I know there are plenty of you out there who know that voice and know that however low in tone, it's insistent and stretches for generations.

I'm living in the moment, at least for this moment. One of the things that Sophie did last night was reach up and try to touch the mermaid that is floating in the air of her bedroom. The mermaid has been swimming there for almost ten years, and I'm not certain Sophie ever noticed it before. If she did, she had never tried to touch it, and despite a  whole lot of growth in height, her reach has never been very functional.

So here's what I'm thinking: her brain, freed of seizures for a week (the big ones) made some kind of connection and -- ZING! -- there was the mermaid, swimming in the air, aching to be touched. So she did.

And the Winner Is...

SLEEPY MAMA, COME ON DOWN!


You are the lucky winner of the Rachel Ray fondue pot! There were so many of you dying for that fondue pot, that I had to do a little research and use random.org. Thank you to all those who participated!

(Sleepy Mama, please send me your name and address so that I can let CSN know where to send the fondue pot! My email is elsophie at gmail dot com)

My New Mantra

I feel like my blog has been filled with minutia these days -- tales of The Boy and his exciting drawings, videos, poetry and commercial giveaways. Life goes on in the house, though, like always, although we've had a respite, of sorts, from big seizures and all the anguish and despair they sometimes bring. I'm grateful for that.

At least for now, and knock on wood, Sophie is going through a good stage. When I say stage, I mean about a week or so and that's an improvement! We live, quite literally, in the moment and at most, by the day. She is taking her homeopathic remedy and a bit of the white pill, so I'm not sure what's doing it, but I actually don't care. So grateful for that...

Next week, I have a meeting with a case worker who will determine whether we qualify for In Home Supportive Services, a social program here in California that provides respite care in lieu of institutionalization. California, as you know, is a fiscal mess and the services given to the disabled have been cut drastically. While my feeling about institutions is about the same as lying alive in a coffin, when the going gets rough, I do understand why people resort to it. I don't want to jeopardize our chances of receiving this much-needed relief, though, so I won't go into it here. But that does lead me to the reason for the title of this post: My New Mantra. This morning I read on Claire's blog this statement, and I doubt she'll mind if I take it as my own:

We'll jump off that bridge when we get to it!

I've been reading a lot lately which isn't unusual, although my response to the several books I've recently finished is. I think Colum McCann's Let the Great World Spin might be the best book I've read in years. It's a riveting story about priests and prostitutes and New York City in the gritty, dirty seventies. Philippe Petit, with whom I've long been fascinated, if not mesmerized by ( see HERE) figures throughout. I could hardly stand to finish it and am still thinking about it now, one month later. I'm also in the middle of Joshua Ferris' book The Unnamed which is a strange and beautifully written book about a lawyer who can't stop walking. Yes, walking. Miles and miles and miles, to the death. It's a book about neurology and the mind and, above all, marriage. I especially liked this passage:

...The long matrimonial haul was accomplished in cycles. One cycle of bad breath, one cycle of renewed desire, a third cycle of breakdown and small avoidances, still another of plays and dinners that spurred a conversation between them late at night that reminded her of their like minds and the pleasure they took in each other's talk. And then back to hating him for not taking out the garbage on Wednesday. That was the struggle. Sickness and death, caretaking, the martyrdom of matrimony -- that was fluff stuff. When the vows kick in, you don't even blink. You just do.


So that's what's happening around here. (And don't forget to enter the giveaway (scroll down a bit!). I'm drawing a name tomorrow, Friday the 5th of February. You know you really, really want a fondue pot.

Nonviolent Parenting -- an entirely Unpolitically Correct Post

My son Oliver is eight years old and has totally, completely agreed to be the featured guest on this post. We've scanned two of his recent drawings, two of a series that I estimate to already be close to one hundred with no end in sight.

Here's the first drawing, followed by Oliver's explanation, dictated directly to me:

One day a chief soldier brought his soldiers to this feasty, meaty giant that lived in Hallalooloo Land. Then the captain brought his big armored tank that has two machine guns, a big cannon fire and you can hold guns in it and soldiers work in it. He brought two helicopters. One was a big one holding two tanks, and the other was holding soldiers so they could hop on to the meaty, feasty giant and shoot him down. A soldier is putting black, hard balls into the cannon which goes straight to the meaty, feasty giant, and the two machine gun soldiers start firing as many bullets as they can at the terrible giant. One soldier is in a room with the chief, talking about how they could destroy the Giant. Two other soldiers are in a room that they're ready to come out of the ship and take their guns and shoot the Giant down.

Here is where the Giant fell down and three small helicopters come and pick him up from the ground. Then three other soldiers come and take the machine guns and start shooting at the Giant to make sure that they put him out of his misery. While they are doing that, the soldiers, who are not in the picture, are thinking of a place to put the Giant. They think they should put him in a castle that has barbed wire all around it and it has nothing in it. It's an empty place and they're going to put him in there. There are going to be two soldiers guarding the door that have bullet-proof vests. They have bullet-proof shields and bullet-proof helmets, and they have big, ginormous bazookas that shoot out ginormous rockets. The meaty, feasty Giant has chains on his feet that have a huge black ball so that he can't move. They have it on one of his arms. It looked like he was dead but he can come back to life so they have to be careful. One of the soldiers thought of putting handcuffs on him, but that's on another picture.

I Can't Wait to See This

SHOOTING BEAUTY trailer from George Kachadorian on Vimeo.

Also, scroll down if you haven't entered my giveaway. It's a great-looking fondue pot -- c'mon. You know you want one!