Thursday, January 29, 2009

O.K. I'm a Pittsburgh Fan

I hate football. It's with secret glee that I read a story today about early dementia in football players who've suffered multiple concussions. I'm not gleeful about these injuries -- it's just a bit of "I told you so" said to those who claim football is anything but barbaric.

But I digress. Because I read this article, here, and decided that I will cheer for the Steelers this weekend.

And hopefully wave a terrible towel.

Hopeful Parents

Here's a formal letter to let you know about a new project -- the work of a wonderful woman and blogger who "found" me through my blog! I will be posting each month at the site. This is what she says:

Dear Family and Friends,

I wanted to let you know about a new website that I created with a team of other parents of kids with special needs. It's called Hopeful Parents at

There are a lot of places on the web for parents to find information on how to help their children, but not many resources where parents can go to find encouragement and support for themselves. Hopeful Parents serves to fill that gap.

Perhaps you or someone you know has a child with special needs. If so, please check out the site and forward this message to people who may also be interested.

Thank you!

Wednesday, January 28, 2009


(this is what I imagine an insurance company looks like)

I got a notice in the mail yesterday from Anthem Blue Cross, the insurance company. This is what it said, verbatim:

Dear Sophie I :

Re: Important Changes for Your Coverage
I would like to take this opportunity to thank you for your membership and to let you know that we continue to work hard to make health care affordable and to meet your health care needs in important and innovative ways.

Rate Changes
Your rate changes are effective 03/01/2009
Your medical plan's current monthly premium rate is $399.30, and your medical plan's new monthly rate will be $499.40.


You are important to us. We know that you appreciate the benefits of your Anthem Blue Cross well as the peace of mind that goes along with it.


Joe Ruiz
Vice President and General Manager, Group Business
Anthem Blue Cross

Such a nice letter, right? Especially given that the service provided by Anthem has been so, well, let's just say ERRATIC for the last five years. Maybe even NONEXISTENT? I don't even want to bring up that old anger toward health insurance companies. It runs deep and awful. Sophie's policy is exorbitantly expensive because she can't be covered otherwise. The rate quote above, now 25% higher (and don't you wonder what the extra $.10 is for?) only covers her, not the rest of our family.

Don't you wonder where exactly these insurance companies are? I mean physically. Where are the buildings? Where are the workers? Where is Mr. Joe Ruiz, Vice President and General Manager? I have a feeling that Anthem is buried deep in the earth somewhere, its subterranean offices peopled by robots or lobotomized terrorists. Perhaps that's what they're doing at Guantanamo. Because I'm basically a pacifist but would be hard put not to resort to violence in an insurance company if I saw it, say, on Wilshire Blvd. And I'm sure that I'm not the only one.

If blogs are monitored by Homeland Security, rest assured, you fine patriots, that I'm essentially powerless. And while the powerless are often the most dangerous, retribution is really only in my head, dripping into my fingers and this screen.

Rest assured, Mr. Ruiz, wherever you are that my "peace of mind" is intact. I wonder if yours is.

Tuesday, January 27, 2009


The miracle of turning inklings into thoughts and thoughts into words and words into metal and print and ink never palls for me

said John Updike who died today. I came to Updike relatively late in my life when I picked up the first Rabbit book one summer and read it voraciously. And then each summer thereafter it became a sort of mini-tradition for me to read another. I felt like I was discovering him and it was such a relief at the time to read such stately prose. Fine, old-fashioned stuff that didn't mask the often vulgar material, just enhanced it.

I saw him last fall, here in Los Angeles, and marveled at his easy depiction of writing as industry. I had gone to hear him speak thinking that he'd be impossibly effete, New Englandy, haughty. And he wasn't. He was charming and witty and so, so literate. I wrote about it here.

I'm sad that John Updike died today and that his voice is gone.

Sunday, January 25, 2009


I ran into an old friend the other day when I was wandering, dazed, through a local outdoor shopping mall. I hate to admit it but aside from eating really, really good food (often cooked by The Husband, who is a chef) I actually get a lot of comfort from shopping. I don't buy a lot but I do like looking around. So, I was wandering around and heard behind me a very distinctive voice and when I turned, there she was. I hadn't seen her in years but had thought of her often. Her boy and Sophie had gone to preschool together almost ten years before. Her son had died, though, about seven or so years ago and while I can still remember the exact, horrible moment when I learned what had happened and then went to his funeral and stayed in close touch with her for a while, there came a time when I think she rightfully withdrew. She and her husband adopted two children and I thought about them all, often, and I thought, too of this cord connecting the two of us, a cord that really never broke. It just sort of stretched thin as we walked it, on our separate paths.

We hugged each other long that afternoon, and she told me that she was an avid reader of this blog. I feel that seeing her was symbolic because she reminded me of what is best in this often absurd world of parenting a special needs child. The bonds are so intense that they are really almost never broken and the ties that bind are stronger than personality and even, sometimes, culture. It is a blessed thing to know another whose path, if not similar to yours, at least understands it, completely. Hearing her voice, seeing her, after such a long time, gave me a renewed strength, but I'm not completely sure why.

She emailed me this in response to one of my recent posts:

The tight rope always extended and ready for you to take a walk. One side has to be the end to it all. There must be an end to it all. Not another drug or hormones or the wind blowing the wrong way. Not another night of sleeplessness and yearning for just one day free of seizures.

The quiet soul released of noisy seizures and daily anxieties.
And then, the moment you are yanked back with full force into the absurd, into the long future...

So beautiful, those words. It makes me think of the present and how those of us who meditate, those of us who spend time doing yoga or reading about mindfulness are intent or inclining ourselves, ever, to the present. And how difficult this is. To stay in the present. To live in the present. With my boys I remind myself to be present, to savor each moment, because it flees and they will grow up and beyond and I know that one day I will rue the moments that I wanted to pass. This is good. With Sophie, though, I live each day, trying not to think of the next, and the next and the next. Because that will bring worry and the future and who the hell knows what else. The present is not really the present, at least the present the moment that I experience with my boys.

I wonder if this is true for all of us who have our Sophies, our Roberts, our Omies, our Schuylers, our Morgans and Helenes and Luezas and Jakes and Indias and Micheles and Evans and all the other wondrous children in our tribe.

My friend wrote:
I always felt like I was living in a bipolar world where no one really understands what it is like to live only in the moment and never venture even for a minute to tomorrow.

The title of this post is Relief. Sophie has had some relief the past two days. She has woken up with light in her eyes and dry palms. She has a bit of spring, again, in her step and a smile for us.

Today is good, I think. All over again.

Friday, January 23, 2009


I'm troubled tonight. It's come to my attention that -- surprise -- I've offended some people in my community with my blog posts. Namely, this one. Evidently, some people think that my leaving the Catholic school and then posting the reasons why was mean-spirited. Go ahead and read the post yourself and please, tell me if it seems offensive. Or mean-spirited.

I'm an irreverent person at times and often sharp-tongued. Opinionated and strong and stubborn. I get into trouble with my mouth and then have to backpedal in apology. But I don't feel apologetic about this one -- the larger picture is the blog universe in general. What's it for? How to express a story, inspire others, provide support, feel connected to something larger than oneself and create a world that others can read in a language that is sometimes off the cuff and other times carefully crafted.

It's tempting to want to withdraw into a cave (remember this?)

I guess the main problem is that I live in Los Angeles but in a teeny-tiny area that is really like Mayberry. It's close, here, for better and worse. There are people who live to gossip and there are people who think they know just about everything. Who are righteous and small-minded. But like all small communities there are also warm and generous people who would give you the shirts off their backs. It's an extraordinary place in many ways and I'm grateful for the community, given that I live far from my own home and family.

My writing teacher and mentor has told her classes that it's always a mistake to let family read your writing before it's "official." I'm starting to wonder whether this might be true of blogging. And your community.

Thursday, January 22, 2009

Two Conversations

There are a number of assumptions that I'm making with this post, but in a nutshell, if you're reading it you need to know that Sophie is thirteen and has a severe seizure disorder that is uncontrolled by western medication (16+ different trials of said meds). She is nonverbal and needs complete assistance with basically every life task, including bathing, eating, toileting and all self care. Traditional assessments would probably define her as severely cognitively impaired, but we believe that she understands a whole lot more than is apparent. She is having a particularly difficult time, struggling with multiple seizures daily.

I broke down and actually took Sophie to the pediatrician yesterday. She hasn't been to school in days, mainly because she's having a bunch of godawful seizures every single day and we just can't get no relief. For those of you who don't know, seizures are often exacerbated by illness, so I was hoping (yes, hoping!) that she might have an infection, something secondary to the cold that she'd had the week before. That would be an explanation, you see. I also bat around my theory that Sophie's seizures are now the direct result of fluctuating hormones in her suffering thirteen-year old body. Actually, it's not really a theory. It's what I believe. I'd recently spoken with The Neurologist about a new drug that literally just came out from the FDA this week.

"I'm really excited about this drug," The Neurologist said over the phone.

You don't know our history with antiepileptic medications, but it's a grim one. Without reservation or caveat. I am in a position now, though, where I'm willing to try anything. I think. But excited? This is what I said to her:

"EXCITED? I have to tell you that the idea of giving Sophie yet another new medication with virtually no track history is enough to make me vomit. Like right now. When do you think we could try it?"

Back to the pediatrician. She is super nice. Young. Just had twins. She has blue, blue eyes and talks directly to Sophie which I really appreciate. She is sensitive to her as a person, not just a girl with a terrible diagnosis.

We talked about birth control today -- something to consider on the chance that it would help to calm those crazy girl hormones and perhaps, even, the seizures. Remove the stress. Remove the seizures. The good doctor believed that we could start this sooner rather than later (I had thought that one needed to have a regular cycle before starting). I'm thinking new drug or birth control, birth control or new drug? and trying not to cry. How can this be that I'm still squeezing back tears, fourteen years later? But then I'm jerked back to reality by this:

The doctor says kindly, "Are you concerned at all about Sophie's fertility?"

Even though I hate the acronym, this is what I thought:


Tuesday, January 20, 2009

The New Normal

Oliver (aged seven) asked, "Why are all the brown people crying?"

I realized that watching a black man become president was actually pretty normal for him.


"Today's Sharp Sparkle"

The whole idea of having a poet read a poem to the nation is thrilling to me. Elizabeth Alexander's poem is beautiful, but I thought her placement in the ceremony after The Man was next to impossible. Here it is, though, to savor:

Praise Song for the Day

Each day
we go about our business,
walking past each other,
catching each other's eyes,
or not.
About to speak, or speaking.
All about us is noise.
All about us is noise and bramble,
thorn and din, each one of our ancestors
on our tongues.

Someone is stitching up a hem,
darning a hole in a uniform.
patching a tire.
Repairing the things in need of repair.
Someone is trying to make music somewhere
with a pair of wooden spoons on an oil drum,
with cello, boom-box, harmonica, voice.
A woman and her son wait for the bus.
A farmer considers the changing sky.
A teacher says, "Take out your pencils.

We encounter each other in words,
words spiny or smooth, whispered or declaimed.
Words to consider, reconsider.
We cross dirt roads and highways
that mark the will of someone
and then others who said,
"I need to see what's on the other side.
I know there's something better down the road.
We need to find a place where we are safe."
We walk into that which we cannot yet see.

Say it plain: That many have died for this day.
Sing the names of the dead who brought us here,
who laid the train tracks,
raised the bridges,
picked the cotton and the lettuce,
built, brick by brick, the glittering edifices
they would then keep clean and work inside of.
Praise song for struggle.
Praise song for the day.
Praise song for every hand-lettered sign,
the figuring it out at kitchen tables.

Some live by "Love thy neighbor as thyself."
Others by "First, do no harm,"
or "Take no more than you need."
What if the mightiest word
is love?
Love beyond marital, filial, national.
Love that casts a widening pool of light.
Love with no need to pre-empt grievance.

In today's sharp sparkle, this
winter air, any thing can be made,
any sentence begun.
On the brink,
on the brim,
on the cusp,
praise song for walking forward in that light.

Monday, January 19, 2009

I've Been Happy Lately, Thinking About Good Things to Come

Four years ago, when Bush took office for the second time, I remember thinking, My God, Henry will be TEN years old when he finally leaves. It was incredibly depressing -- the thought -- and now that we've been through it, it was.

But Henry is ten years old, and tomorrow we'll have a new president. I'm fighting the urge to be nonchalant, to not let the hype and hyperbole get to me. Part of it has, but what lies beneath it is something so powerfully significant that I hardly know what to think or write. A couple of my blogger friends posted this old video of Cat Stevens' singing "Peace Train." Maybe it's the flowered guitar, maybe it's the words, maybe it's the goofiness or maybe it's the innocence, but I love it.

See you tomorrow!


It's a holiday today, like everywhere. The boys are home from school, and it's hot. Really hot, here in Los Angeles. In fact, it's raining:

The noise of their screaming is literally deafening. My first inclination is to scream back, tell them to stop shouting. But they're entertaining themselves, so I'm keeping quiet. And listening to the rain.

Sunday, January 18, 2009



All the yellow leaves are down and brown
The tree is bare and stripped
Of finery and frippery
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Friday, January 16, 2009

What Do You Think He Wished For?

1. I wish for the Lego helicopter and launch pad.
2. I wish that Sophie could talk.
3. I wish that I would listen better.

Amen. So be it.

Thursday, January 15, 2009


So, this was supposed to be a few days ago, but what the heck. I'm posting it now. Comments are interesting -- comments are, I'm sad to say, what the blogger loves (besides the navel-gazing). I'd love to know who you are, whether you're a first-time visitor or whether you've been lurking for six months. Delurk yourself. Or just write the word seahorse.

Show Business

This weekend, I'm going to actually be READING a piece of mine for a SHOW called Expressing Motherhood. When I submitted an essay, I thought I was submitting something that would be performed by local actors. What I didn't realize was that I'm the local "actor.". I was too embarrassed to say, "No," and then too embarrassed to tell anyone about it.

But then I did. I told all my friends, thinking that it would actually be fun. And I learned that not everyone who is doing the show is an actor and not everyone is actually "performing." So, I'm reading this weekend at Electric Lodge in Venice.

There's more on the show, here, where it was featured this morning on Good Day LA.

At rehearsal the other night, we were told that there's going to be a reception area of sorts before the show begins and that alcohol is available. I'm not much of a drinker, but I plan on having a couple.

Tuesday, January 13, 2009

When She Smiles

Henry managed to get a real smile out of The Miss tonight. And he did it over

and over

and over.

It's the small things around here that keep us going.
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Monday, January 12, 2009

My New Favorite Blog

What is it about a really funny guy raising his kids while his wife works that is so sexy? As opposed to all of us women (some pretty damn funny) that don't think of ourselves as anything but harridans?

Check out lookydaddy.

This Little Boy

This little boy is the opposite of what he looks like. He's my third child and when he was a baby I thought of him as dessert. Sophie's babydom was initially magical and quickly turned into nightmare. Henry, the first boy, was a perfect baby but I was often busy feeling anxious. Would he have seizures? But Oliver was my dessert. I had relaxed, by then, into the idea of having a typical child. Henry had forged the way. This baby nestled his little head into the spot between my head and shoulder and just stayed there, it seemed, until he could walk. I inhaled him.

He's also my most difficult child. The one who makes me question my parenting. The one who has a tongue as sharp as a scythe and who throws words around like weapons. He has been known to "hate everyone." He has even blurted out, at the age of 21/2 that he "hates Santa." This when I tried to discipline him into picking up some toys because Santa is watching. He took his thumb out of his mouth and uttered the curse which, in turn, made my other son look at me terrified. I tried not to laugh and said OOOO, I hope Santa's not listening and Henry looked fearfully up at the ceiling and asked me, Are you going to tell him, mommy? Oliver just continued to suck furiously at his thumb. He really didn't seem to care.

He's the child who called for me in the night when he was five years old and told me I'm scared.
What are you afraid of? I asked.

Who's going to take care of Sophie when you get old?

Oh, my goodness, Oliver. Mommy and Daddy will always take care of Sophie or have someone help us to take care of her.

But what about when you get too old to take care of her?

I'm thinking a million thoughts, by now. They range from utter terror that I'll say the wrong thing to utter paranoia (in all my raising of these boys, have I not paid enough attention to the effects of having a disabled sibling?) to wonder that he had these thoughts at all at the age of five.

Because I don't want to take care of her is what he said in his tiny voice in the dark.

And that made me smile, actually. I told him that when it was time for him and Henry to perhaps help to take care of Sophie, he would be a big, grand man. And then he smiled at such a fabulous thought and went back to sucking his thumb and then to sleep. But I'm thinking that as soon as I'm dead and gone, I'll have one son who'll do what Mom wanted. She'll live with us (Henry) and one who'll Thank God. Now she's gone and I can put my sister in an institution (Oliver).

If you think I'm sick, well. I am. And it's this kind of thought that makes me laugh. That keeps me sane. And it's this boy that keeps me crying and laughing. The get-up he has on to garden today is of his own making. And when you give the guy a job, he does it with determination and thoroughness. So I'm thinking that Sophie will be all right when I'm gone. The universe willing, I'll be really ancient and Sophie slightly less so. She'll have them.

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Thursday, January 8, 2009

More Yellow

Sophie is having some dark days. And I'm never sure whether to just trudge on in this blog, doing my writing, sparking the rest of it (because the blog is fertilizer) or let things lie low. Not complain, not notice, not reveal. In revealing, though, I can ask. I can ask the page, the universe, you, the reader, to think hard or think soft but think about Sophie and her energy and what she goes through day after day after day. I ask you to pray if you pray and meditate if you meditate and if you're not into any of that, then think a good thought for her.

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Last night my valiant babysitter and I had to work together to get Sophie out of the bathtub while she was seizing. It was simply awful, and when we finally got her to the floor and wrapped her in towels and then carried her back to her bedroom, even the babysitter started to cry. Have I told you how my babysitters help me to live? I would never even call them angels because that would trivialize what they do for Sophie and for me and my husband and my boys. Their devotion to Sophie gives me hope, hope that the world is a good and beautiful place that can afford such mercy and hope that Sophie's place in it is powerful.

You might not know who Sophie is, other than a girl who has refractory epilepsy. But you can read about her here, and I will remind you that she is beautiful, has curly hair and a fleeting smile. Her hands are ethereal and light and she reaches to touch your face if she loves you and turns her back if she doesn't. She loves music and swings and trees and being outdoors. She sits cross-legged like a yogi and hums.

Today, we lay under the yellow tree in the front yard and looked up through the web of leaves. The ground was cool and damp but covered in yellow, too.

After taking some pictures, we left for the dentist. When the hygienist opened Sophie's mouth to clean her teeth, we saw a long yellow, serrated leaf lying on her tongue, a stripe of mellow fire.

How wonderful yellow is. It stands for the sun. -Vincent Van Gogh

Tuesday, January 6, 2009

Holy Humanity

Our morning wasn't so good. The boys were already at school, and Sophie was sleeping so peacefully on her back, mouth wide open, that I didn't want to wake her (long ago, we decided that Cardinal Rule No. 1 is never wake a sleeping Sophie), and she slept like that until 10ish when she finally woke up and had her customary bout of morning seizures. They go on for what seems like forever and I just NEVER GET USED TO IT. I finally drove her to school around noon and wandered around town in a daze before treating myself to some peanut noodles at my favorite local restaurant. I'm actually tired of writing about the seizures, though, and really only wanted to post a poem and a photo. And they're antithetical -- one an exaltation of human life and the other of nature.

Here's the poem, pulled from a recent issue of Spirituality and Health Magazine:

by Andrew Glaze

As I walk mornings down Bleecker Street,
I meet ten saints with filthy demands.
The tenements shout with holiness,
God reels by or sleeps on the curb,
at home everywhere in the wrecks and bars,
in the stale tobacco and business,
and everything that's wild and absurd,
like madness with madness and holding hands.

I had rather ten faces than ten birds.
I don't sense deliverance in a tree.
There is no impossible in lakes,
there is more miracle in a crowd
than in a Rocky Mountain or me.
There is more holiness in an eye
than in a scroll of holy words.
God's here, thank God, in the market place!
Viva the Signor of warts and turds!

And here's the picture:

Remember the blanket of yellow blossoms on my yard? After it dropped all those flowers, the blossom clusters turned bright pink, then brown and then they shed. And now, the leaves, in a crazy, Los Angeles delayed fall kind of thing are changing from green to yellow. And it's just glorious, really, this tree in my front yard. I don't look on it as a harbinger of anything, really, fall overlapping winter, a blaze of yellow against the blue sky and somewhat ludicrous in front of my tiny house. "I don't sense deliverance in a tree," the poem says. The skeleton that will be left there, when the last bit of yellow falls is probably only weeks away.

What is it about Ralph's?

I careened into the Ralph's parking lot tonight after 10pm because I was just mad. I won't go into why, but since I was still dressed in the yoga pants and tank top that I'd worn twelve hours earlier to a yoga class and hadn't actually taken a shower in a few days (we'll just call it the end of the year, stay in the house with three children and a lot of seizures look) and had no sweater on despite the chilly LA night my options for a diversion were few. A guy with Fabio hair and black biker jacket insistently walked down the center of the parking lot so that I could only inch along behind him, and when he finally moved aside, I stepped on the gas pedal and almost ran over two elderly Orthodox men who were also blithely (or so it seemed) oblivious to cars in the parking lot at night. Such was my mood that I thought about rolling down my window and making some kind of snide comment about what was happening again over in Israel, but I figured that wasn't nice and pulled into a parking space instead.

My face was tear-streaked but I went inside anyway, because who else is at Ralph's on a Monday night and all I needed were those lunch-sized pineapple bits for Sophie and something for breakfast. I had only rounded the corner of the first aisle when a portly older man with a round head and a yarmulke rolled his cart right up against mine. Almost like a head-on collision, but he stopped right before his touched mine.

He looked me right in the eye (the one not covered by a piece of lank hair) and said, "Your husband is a lucky man to have such a beautiful wife." I muttered thanks through the hair and kept on rolling right by him. Remember this?

If I need to find me a new man, I think I'm heading to Ralph's. Cleaned up and smiling -- who knows who'll I find?

Saturday, January 3, 2009

Something Lighter (after yesterday)

A fellow blogger wrote that it's fun to google your name and the word "needs." This is what happens for me:

Elizabeth needs:

1. protection
2. three olives and some yarn
3. loving
4. Frank
5. the Fashion Police
6. to Stomp that Latin Out
7. your prayers
8. a nuk
9. you

These are apt, right? And I'm wondering mainly about Frank. Where are you, Frank?

Friday, January 2, 2009


The year is young and already there have been two news stories that hit very close to home. The first is the negligence of a caretaker for her 22-year-old charge whom she left, stranded, in a bus overnight somewhere in New York. The young man evidently had severe cerebral palsy and was in a wheelchair. She knowingly left him in the bus where he rocked for over 17 hours, trying to keep warm. He suffered hypothermia when they discovered him in the morning.

The second is the death of John Travolta's son Jett in the Bahamas this morning. The young man, aged sixteen, evidently had a seizure and hit his head on the bathtub, was found by a caretaker at the hotel, but couldn't be revived. I had long thought that Jett was autistic but learned in a newspaper article that John Travolta had always denied this and that in addition to seizures, his son had suffered from Kawasaki's disease when he was younger. After the initial rush of horror, of what I think in the moment I understand, I'm painfully aware of my own selfish need to differentiate from these families. My only thought, then, is My God, My God and then all the inane platitudes that accompany tragedy.

I stare sickly at these news stories (that many people emailed me), poring over every word, almost runnning my finger over the lines. I read them and then I reread them. Looking for clues. There seem to be only cliches to describe the feelings: my heart literally goes out to them, the parents. I get it, I think, simultaneously looking for something in the story to differentiate from my own life. Sophie can't ever bathe by herself, so that wouldn't happen I think. Or Sophie's aide would never do that and besides, I'd know that she wasn't home. Where was this young man's family when he was freezing, alone, on a parked bus?.

Some people like to say that we're all one step away from death. To savor every moment because you, too, or your spouse or your bright and happy children could be taken away with a snap, like that. And that's true and unless you're just not too bright, getting older makes you painfully aware of mortality.

The vulnerability of my own daughter, Sophie, is something that I try not to dwell upon. Try not to even write about because I think, sometimes, that I'll jinx it. That by giving it form it will be more real. Or I think the opposite: that the more I think about it, the less likely it will happen. The Husband likes to say that one would be paralyzed, literally, if one entertained the thought of Sophie's vulnerability at school. She can't talk or really do anything for herself. So when we send her off to school each day with, let's face it, an aide who we've only known for a year or so, we're taking, really, the biggest leap of faith of our lives.

And then there's the other. The fact is this: people with seizures that are not controlled by medication can die suddenly. The condition has the lovely acronym of SUDEP (and I don't even want to link to it in my blog!) and it's something that The Husband and I think about every single night.

One of us, usually him, because he is far less psycho in the night, sleeps with Sophie each night. This has become habit and we look on it as one of the concessions we've made in our lives to her disability. We do it knowing that in some ways it's irrational. Even useless. A lame, pathetic attempt to control the utterly uncontrollable. "Can't you use a monitor?" someone always asks. "No," I reply. We need to be near her. We have this idea that if she were to stop breathing, we would sense that, in the night. I have to believe that we would.

That the Travoltas' tragedy is public due to their celebrity doesn't make it any bigger than the countless, faceless tragedies of other children's deaths. From seizures, from disease, from something out of the blue. But it does put it out there.Sometimes I feel like gritting my teeth and reading these stories, that sharing them will somehow prepare me for the worst. Lamely, I'll repeat There but for the grace of God, go I. But I know that isn't really true. I really just have no idea.

I'll leave the computer, the story and go back to my nest where I'll squat, my wings spread over them, these fragile eggs.


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