Emerging from Haze

Sophie's class was in the annual Holiday concert again this year, and I set myself up, once again, for a ride home in tears.

Why?

As you might have noticed, I've felt a little more stressed than usual, these days, especially in regard to Sophie. Although this past week was actually a pretty decent one for Sophie, I've spent a lot of mornings in tears as she's seized her way through the first hour or so of waking. And I knew that her class had been "rehearsing" for their performance in the school recital. To be honest, I felt obligated to go, probably more so than I do with the boys. It's part of this very stubborn insistence that Sophie's life be as "normal" as possible. That she has a life, actually, apart from her disability.

The trouble with this insistence, though, is that it leaves out the fact that nothing is actually normal in her life. So, when I rushed into waking her up this morning, she actually had about forty-five minutes or so of those horrific seizures that I've told you about. The ones where her arms and legs fly out and about and she rolls onto her stomach and buries her face in the bed with such intensity that I have to protect myself from getting hit. When that was over she was very dopey but I almost forced her into the kitchen for breakfast (We have to go. You're in the SHOW!!) was the ridiculous refrain I uttered knowing that if I was in my right mind I'd just say To hell with it. We're staying home. But my chin was set with determination. Sophie's in the show. It's normal to be in a holiday show. We can't let them down.

We went to her school and I left her in the classroom and joined the several hundred other parents (NONE of whom I know) in the school auditorium. I've told you before that Sophie's school is very disadvantaged but that her particular special education class is fine. There's basically no booster club at this school and the program was translated into Spanish. I sat on a folding chair near the front and listened to the hordes of people babbling away in Spanish, crying babies and a guy behind me who spoke in a low, husky voice the entire time on his cell phone. In Spanish. I've got nothing against Spanish and would have been equally, if not more, annoyed had the language been English, but the combination of something unintelligible coming from behind, the crying toddlers, the people who just wouldn't sit down and the nervous anticipation I had for Sophie to come in nearly drove me nuts.

Sophie's class came in about an hour after the program began, and I was horrified to see that the two most disabled children (Sophie was one of them) were wheeled in in their handicapped chairs that had been turned into some kind of red car-like structure and they were literally deposited right up front. I could barely see Sophie over the top of the car and inwardly groaned when I did catch a glimpse of her. It wasn't the jaunty Santa hat with the dangly sequinned earrnings hanging from it. It was her head, hanging, her eyes half-closed, her whole body language one of what appeared to be utter fatigue and misery.

I couldn't stand up in the middle of my row, but I wanted to. I wanted to run up the aisle, away from the enquiring eyes, grab her chair and just run. Run out into the dirty, run-down parking lot and drive away in my yuppie Mazda.

Some of you might wonder: where's the magic? Where's the warm, fuzzy inclusion feeling? The beauty of the disabled standing alongside the abled? Although it might be a reflection of my general grouchiness, I HATED that Sophie was so different today. I allowed it all to get the better of me. I stayed until the end and weakly congratulated the class. Sophie was still slumped over, drooling, half asleep. The other kids in her class were happy because they had done well.

I fled in my Mazda, letting myself cry because I felt like shit. I was heading north, back to my house, and the mountains that surround Los Angeles, the ones that you don't see much of during the year, were all of a sudden there, crystal clear and snow-topped ahead of me. On winter days like these, the sky is incredibly blue and the mountains appear almost ridiculous, like a backdrop that has been dragged in for a show.

Sophie had been dragged in for the show. I wished today that I could have accepted this morning for what it was. Not a good morning to go to the show. I might not have hoped that things would be normal, because they're just not. I wouldn't have set myself up for such disappointment. I'm irritated that I do that over and over again. It's the flip side of hope. Crazy hope.

The day went on. I made my way, eventually, to the boys' Christmas concert. Oliver wore a green elf hat and stuck out in the crowd. The songs were sweet and when it was over, we got in the car and headed home.

I thought a lot about acceptance today and decided that I have to revisit it. When Sophie came home, she looked relieved. Or at least I hope she did.

Fall on Your Knees

Here's today's carol, thanks to Nat King Cole. And looking at a warm fire in sunny Los Angeles is good.

A Carol a Day

I thought I'd post a carol a day until I get sick of them. I've always loved this rendition of an otherwise boring song because Aretha Franklin can really belt it out. I know the video is sort of corny but her voice is just sensational. I like to play it really, really loudly until my kids tell me to "STOP!"

Visions of Sugarplums

While you were prancing around town in your holiday sweaters, elf hats perched jauntily on top of your cheerful heads, enjoying the season (come on, I know you were!), I was...

lying on an examining room table for HOURS as my right breast was prodded and examined.

On Monday afternoon I was driving to pick up my boys from school when the mammogram place called to tell me that I needed to come in for a follow-up. When I asked the receptionist why, she said, "The radiologist sees something and wants another look."

And that was that. Literally. The conversation ended and I had to go pick up the boys. I won't go into the long and boring interior monologue in my head that had to do with breast cancer and going bald and being sick and maybe even dying. I called up some bitter sarcasm, actually thinking I don't really have time for this. I stifled some panic (because I'm not feeling stalwart these days and knew that a diagnosis of cancer, well, it'd be hard to be a fighter, at this point in my life) and cheerfully greeted the boys and went home. I did all the things I was supposed to do that afternoon and evening, things like taking Oliver to Cub Scout carolling practice, making dinner, overseeing homework and baths and bedtime stories and bed. I watched some tv, read a little and wrote a post about FEAR.

And then I went to bed and I did sleep.

In the morning, my friend Johanna brought over some huge and grotesque donuts from the best donut place in town. I'm a donut lover but I could hardly eat them. We chattered mindlessly and then she went on her way. Another friend, Amanda, came and picked me up and took me to the appointment. She brought me some chocolate and a reindeer purse and in the car two magazines. We chatted mindlessly until we got to the hospital, and when they called my name she pressed my hand and smiled.

The next few hours were the usual: freezing cold machines and even colder rooms. My breast was smashed and flattened and the technician made idle talk and peered intently at the machine but didn't say anything about it. She disappeared for a bit with the film and came back in for another shot. I was moved to another room and another technician came in and smeared some jelly over my breast and did an ultrasound. I read through a copy of Reader's Digest from May of 2006 and a Good Housekeeping from October 2007. I tried to remember my friend Barbara, the writing teacher's advice to TAKE NOTES when you're going through a difficult situation. My notes weren't written down but they included:

1. pockmarked ceiling tiles
2. the wall clock's second hand seemed awfully slow, slower than usual
3. it's freezing in here -- why?
4. what's behind those cabinet doors?
5. the line of stain at the tip of the baseboard
6. what happens to a breast that has been augmented when it's smooshed in the plates?
7. what if I have cancer?

There was a sense of boredom and then there was a sense of utter terror. It was strange to be both bored and terrified at the same time and I'm hard put to articulate what that feels like. Perhaps you already know.

A couple of hours later, The Radiologist poked (and yes, she really only POKED) her head in the door and said,

"It's just a cyst. See you next year." And she left.

Just like that. I slowly sat up and even more slowly got dressed. I went out to the waiting room where Amanda was patiently waiting for me and sat down next to her. I lay my head on her shoulder and said, "It's only a cyst." We laughed and got up and went to our car. I made the comment that I thought I should be kicking up my heels like Woody Allen did in one of his movies when he found out that he didn't have a brain tumor.

I want to say that visions of sugarplums began dancing in my head, but they didn't. I had this small moment in time, in my life, when something routine turned really, really horrible and caught me off-guard. And the main thing I feel is how utterly strange it is to be alive when there's so much that can get you. So quickly and so randomly. There is a weird gratitude to that.

Fear

Fear, I discovered today,is a lump right in the middle of my chest. At first it's a quickening, a roar in the blood and then something is stuck right there and I try to brush it away with my hand but it's stuck there. I know it. I've felt it before. I can hear the blood in my vessels, in my veins, in my ears and everything is pounding but my head is light and it's right there in the center. From a brush to a press to a hold myself there, mindful that it's a physical sensation that has nothing to do with the actual fear. I take one, two, three deep breaths in and the fear in the middle wants to stick, wants to stay but the breath loosens it and it starts to seep out toward the edge like a flower, like blood, like a pool. And then it is gone and I go on.

A Website and a Poem

Check out this website called Marissa's Bunny. Scroll down and read about the bunny's visit to Los Angeles. The picture is of the bunny at the top of our Christmas tree. Learn a little about Infantile Spasms, the devastating seizure disorder that Sophie was diagnosed with when she was three months old, almost fourteen years ago, the disorder that this little baby girl, Marissa, is battling. And pass on the knowledge when you get the chance.



Here's a real beauty from today's Writer's Almanac:

Christmas 1963
by Joseph Enzweiler

Because we wanted much that year
and had little. Because the winter phone
for days stayed silent that would call
our father back to work, and he
kept silent too with our mother,
fearfully proud before us.

Because I was young that morning
in gray light untouched on the rug
and our gifts were so few, propped
along the furniture, for a second
my heart fell, then saw how large
they made the spaces between them

to take the place of less. Because
the curtained sun rose brightly
on our discarded paper and the things
themselves, these forty years,
have grown too small to see, the emptiness
measured out remains the gift,

fills the whole room now, that whole year
out across the snowy lawn. Because
a drop of shame burned quietly
in the province of love. Because
we had little that year
and were given much.

Why We Left Catholic School

The boys attended Catholic school for years -- four for Henry and two for Oliver. For the most part, we liked the school but mainly because it was in our community which is a wonderful one. The families at the school were local and diverse. It is old-fashioned but academically rigorous and relatively cheap. When I decided that it was the best place for Henry, we were going through some rough times with Sophie. Going to a private school in the neighborhood with a lot of my friends seemed like the right thing, the safe thing.

Time went on and years went by and I was never entirely happy with my kids being there. The size of the classes was too big and the academic pressures immense. There was a puny art program and the science was abysmal. The PE teacher was completely inappropriate, a throwback to another era best left behind. My older son often had more than two hours of homework a night and my little one was getting the idea that he was a "bad reader" when he couldn't keep up. He was in first grade! I felt as if the pressure to be on a certain path (through all the grades, onward to the Catholic high school, etc.) too emphasized and it bugged me that the boys already even knew what private high school they wanted. The grades and rankings came incessantly, and the discipline (it was Catholic school) and conformity was intense. There was much to love about the place, though, its sweetness and safety in the middle of Los Angeles. The community is a warm one and the families devoted to one another. That was good.

I never went to Catholic school so I didn't have the same fond feelings that most of my friends had. The stuff about conformity and discipline and a not uncertain disdain for those who are "politically correct." While I consider myself a woman of faith, I winced when I heard my son's third grade class reciting the Act of Contrition every afternoon before the bell rang. This is when you beg God's forgiveness for your sins, your impure words and thoughts, etc. Frankly, it made me sick. While I'm the first person to abhor politically correct bullshit, I knew I had to make a change for the boys when a good friend responded to my complaint about something or other: "Well, we all survived." And then a teacher, in a casual conversation told me that she thought some people didn't want to change the school; they wanted a different school.

Survive? I thought. We can certainly do better than survive. Survival was dealing with my daughter's special education needs for fourteen years. And sitting down with both boys night after night, plowing through pages and pages of worksheets...well, I felt like I was a homeschool mother. An angry, stressed out one who was handing off her boys to a teacher who had 35 other kids in the class and couldn't really tend to my boys like I wanted them tended to.

We live a stressful life, the Beglinger family. Unusually stressful. Life is stressful for everyone but particularly so for those living with someone who has uncontrolled seizures. And while Michael and I do our best to shield the boys from a lot of it, it is what is, and their lives have been both enriched and altered in harsh, harsh ways because of it.

The idea of change versus different was a real Eureka moment.

I wanted something different for my sons.

It was sad to leave my friends behind, and the boys were bewildered at first, but we made the change. And they're thriving. They got into -- by lottery -- a neighborhood charter school that is progressive and public. They have made new friends and love their teachers. There are only 20 children in each class and two full-time teachers. They have a fantastic art and music and physical education program. Most importantly, they are enjoying learning. They don't have much homework to speak of and Henry, my older son, has rediscovered the joys of reading. He has time to read now and devours books. Oliver, who had been struggling, comes home from school and tells me what he's learned. "I have fun, Mom," he says, when I ask him why he likes school. They like the school part of school, not just the extras. They go out to the garden when it's time for botany. They do science experiments and write up their observations. Henry's class had a debate during the election. He wore a suit to school and debated the role of taxation. I could go on and on.

And putting up with a bit of political correctness is a small price to pay for today's afterschool program of Circus Circus. Both boys had stayed after school for an enrichment class and today took their bows with their new skills. It was all a little ridiculous but incredibly entertaining.

Afterward we went to have some pizza because they didn't have any homework.

Uber Blog Award

Kate Hopper at Mother Words: Mothers Who Write awarded me the Uber Amazing Blogger Award today, and I'm just thrilled! Thank you so much, Kate.

Now I have to nominate five (or six) other blogs for the Uber Award. Hmmm...this is really difficult because I have a LONG list of favorite blogs and even more on my Favorites Page on my computer. I've decided to narrow it down to those who post pretty regularly. Here's only a start:

1. Laura at Piece of Cake because she got me started blogging and her writing is hilarious and poignant and true. Plus, she's got 150 children all living in a small apartment.
2. Vicki at speak softly because her writing is like crystal and can shatter your heart but give you strength.
3. Jeneva at Busily Seeking...Continual Change because she is able to convey her brilliant, original, weird thoughts about her disabled son AND poetry in a way that I've never read before. Plus she's a poet, and I love a poet.
4. Denise at Birthmother because she is one of my first true writer friends and her story of giving up her son for adoption many years ago and then finding him is a thing of beauty. She also has another blog called His Big Fat Indian Wedding which is a hilarious and sorrowful documentation of her recent divorce.
5. Meredith at spirit~of~the~river because her writing is mysterious and lyrical and her photographs are amazing.
6. Barbara at Writing Time because she is my mentor, the woman who gave me the faith to write again and whose blog is an inspiration to many.

Now, these bloggers need to do the following:

1. Put the logo (award image) on your blog or in a post.
2. Nominate 5 (or 6) blogs that you feel are Uber Amazing.
3. Let them know that they have received the Uber Amazing Blog Award by commenting on their blog.
4. Link to the person who gave you the award (which would be me, of course).

The Last Ding Dong of Doom

On this day in 1950 William Faulkner gave his great acceptance speech for the Nobel Prize for Literature. Whether you've read him or not or think he was a drunken bore, if you've never heard the speech, listen here for some beautiful words that resonate, particularly, today. I've always pulled this speech out when the world around seems near to unbearable and when anxiety creeps around stealthily and seems to be winning. I read them and feel, if not comfort, then solidarity with those who believe. And I won't talk anymore because Faulkner does it so much better:



Here are the words:

I feel that this award was not made to me as a man, but to my work--a life's work in the agony and sweat of the human spirit, not for glory and least of all for profit, but to create out of the materials of the human spirit something which did not exist before. So this award is only mine in trust. It will not be difficult to find a dedication for the money part of it commensurate with the purpose and significance of its origin. But I would like to do the same with the acclaim too, by using this moment as a pinnacle from which I might be listened to by the young men and women already dedicated to the same anguish and travail, among whom is already that one who will some day stand where I am standing.

Our tragedy today is a general and universal physical fear so long sustained by now that we can even bear it. There are no longer problems of the spirit. There is only one question: When will I be blown up? Because of this, the young man or woman writing today has forgotten the problems of the human heart in conflict with itself which alone can make good writing because only that is worth writing about, worth the agony and the sweat. He must learn them again. He must teach himself that the basest of all things is to be afraid: and, teaching himself that, forget it forever, leaving no room in his workshop for anything but the old verities and truths of the heart, the universal truths lacking which any story is ephemeral and doomed--love and honor and pity and pride and compassion and sacrifice. Until he does so, he labors under a curse. He writes not of love but of lust, of defeats in which nobody loses anything of value, and victories without hope and worst of all, without pity or compassion. His griefs grieve on no universal bones, leaving no scars. He writes not of the heart but of the glands.

Until he learns these things, he will write as though he stood among and watched the end of man. I decline to accept the end of man. It is easy enough to say that man is immortal because he will endure: that when the last ding-dong of doom has clanged and faded from the last worthless rock hanging tideless in the last red and dying evening, that even then there will still be one more sound: that of his puny inexhaustible voice, still talking. I refuse to accept this. I believe that man will not merely endure: he will prevail. He is immortal, not because he alone among creatures has an inexhaustible voice, but because he has a soul, a spirit capable of compassion and sacrifice and endurance. The poet's, the writer's, duty is to write about these things. It is his privilege to help man endure by lifting his heart, by reminding him of the courage and honor and hope and pride and compassion and pity and sacrifice which have been the glory of his past. The poet's voice need not merely be the record of man, it can be one of the props, the pillars to help him endure and prevail.

Boredom

I've been reading a lot, lately, about over-zealous parenting. Sometimes called "helicoptering" or "hovering parent" I believe what it signifies is the over-anxious, all-controlling, well-meaning, hyper-involved mother or father who overschedules and believes, implicitly, that their parenting is literally shaping the child in every which way.

Sigh. I'm bored with this topic, just like I was bored with the working versus non-working mom thing that seemed to go on FOREVER, a conflict debated ad nauseum in magazines, newspapers, NPR, radio talk shows, Facebook, book groups, Oprah. You name it, the debate's been on it.

I don't know if this stuff bores me so because I'm just not that conflicted about parenting and working and non-working or because I'm so conflicted that I've decided to just shut it all down (sort of like my son's decision to believe in Santa Claus despite already knowing that there isn't one).

In any case, I've been longing to write about this and suddenly realized (for lack of anything else to note) that I can do it on my blog.

This is what I think: Helicopter Parenting and the Debate Between Working and Non-Working Mothers (and I'm not talking about the economic necessity of working, just the debate about what is "better for the child" and the mother) is really a bourgeois luxury. Or not even bourgeois -- it's about privilege. It's about having nothing else to worry about.

What do you think? But don't bore me.

Yams

I've been wondering all day what and how much to post. I just got up off of Sophie's bed where I've been lying for a half hour or more, curled around her. She had had a bunch of seizures and I was trying to somehow breathe calm into her. When I closed my eyes I started reciting the Hail Mary prayer over and over but instead of saying "pray for us sinners," at the end I said, "pray for Sophie." I also visualized us, together, flying through the air and could swear that I saw something golden behind my shut eyes. What it was kept escaping me but I knew it had something to do with the words shook foil which I think is a line from a poem. But I'm not sure. It was a beautiful image.

So I had that to post but I really wanted to title the piece "Yams" because of a conversation I overheard last night while waiting for Mark Doty to read his poetry at the downtown public library. Mark Doty is one of my favorite writers of late -- his memoir Heaven's Coast is a touchstone for me, and I was thrilled to see him and listen to his poetry and wise, warm comments about poetry and life. But before the show started (and he read with two other poets), I sat in my seat and couldn't help but eavesdrop on the conversation behind me. I knew the women were on the edge of the end of middle age or already a few years into whatever comes after middle age. I knew this by the sound of their voices and later, when I looked, I was right. But I digress because here's the conversation I heard:

Lady #1: "I'm so sorry that we didn't make dinner beforehand."
Lady #2: "Oh, don't worry."
Lady #1: "No, I feel bad. Why don't you come over afterward for a yam?"
Silence
Lady #1 (again): "I had half a yam this afternoon but have the other half leftover. You can have the rest.
Silence
Lady #3: I do love a yam.

I found the image above on a google search, and weirdly enough it led me to a site called the Yam Art Museum. What are the chances of stumbling on something so strange and wonderful if I didn't have a blog?

And when I checked google for "shook foil," I got this which I knew I knew from somewhere:

God's Grandeur

The world is charged with the grandeur of God.
It will flame out, like shining from shook foil;
It gathers to a greatness, like the ooze of oil
Crushed. Why do men then now not reck his rod?
Generations have trod, have trod, have trod;
And all is seared with trade; Bleared, smeared with toil;
And wears man's smudge and shares man's smell: the soil
Is bare now, nor can foot feel, being shod.


And for all this, nature is never spent;
There lives the dearest freshness deep down things;
And though the last lights off the black West went
Oh, morning, at the brown brink eastward, springs —
Because the Holy Ghost over the bent
World broods with warm breast and with ah! bright wings.

- Gerald Manley Hopkins

The Monster

Over at Fighting Monsters with Rubber Swords, a fantastic blog by Robert Rummel-Hudson, I learned today that his little girl, who has a neurological disease, might also be having seizures.

My heart sank when I read this because Robert wrote so beautifully about how the spectre of seizures has been hanging over their family's head for as long as they have known of her condition. Hanging over their heads like "the sword of Damocles," I believe he said. Suffice it to say that the sword fell, long ago, on our heads and I might even add that the near-constant nature of Sophie's seizures and their resistance to intervention could be compared to a perpetual sawing of that sword or at least a surrealistic dropping of it, over and over.

This is a thought about disability that I've had for a while, and Robert's post brought it fresh up to the front of my head. And now out of my mouth or through my fingers (because when I write, I imagine a conversation that my fingers are channeling). If I knew fourteen years ago that Sophie would be here, now, still seizing, nonverbal, cognitively impaired and needing assistance with virtually everything, that my life would be the way it is, now, I would probably have at least wanted to kill myself. BUT, here's the thing:

Sophie is a beautiful child with curly hair and a perfect nose. She is surrounded by those who love her. She is, actually, all about love. We have a beautiful life and in many ways, her presence, the reason for her being is manifest in that beautiful life. We are fine, you see. My own life is fine, more than fine. I am thrilled to be alive, however difficult the daily is. When I wonder what the future brings, when I have intimations of its difficulty or fears of its uncertainty, I try very hard to bring myself back to this thought -- that the future, the then will most probably be the same. I have learned that whatever comes... well, it's incorporated and becomes the present. And it's all right.

I'm not sure if that makes sense in words, on the screen. If I say it, it does. I'm hoping that the sword doesn't drop on the Hudson's. But if it does, I'm sure, by reading his past posts and "knowing" the beautiful way in which he's led his daughter's life, that Mr. Hudson will be all right.

For Photo Lovers

Mary Tippee, aka Tebe Vivandere, woman w. Collis Zouaves during Civil War, wearing medals as she poses.

Check out what Google is up to: archiving all of the photos from LIFE Magazine. It's a treasure trove of photographs and images. Click here to see.

Angry Doctors

Dante's Hell (Botticelli)


There's a piece in the NY Times about angry, abusive doctors. Although it's getting better, there are, evidently, a considerable number of instances of what's called medical road rage, and medical errors, sometimes fatal, often result. I scanned the article which I ruefully admit is sort of like fuel to fire for me (I love to bash a doctor, you know) and found this at the end:

"Experts say the leading offenders are specialists in high-pressure fields like neurosurgery, orthopedics and cardiology."

I went to a consult, once, with a friend who had to decide whether or not to have this very famous brain surgeon operate on her child's brain. At some point during the surreal meeting, we asked the esteemed doctor what the risks were. He very casually said, "Well, I've done about five hundred or so of these surgeries and have only had two kids dead on the table." Dead on the table sort of hung there and while my friend, who was new to it all, just sat and thought God knows what, I wondered whether neurosurgeons should be allowed to use the word "kid" for one and "dead on the table" seemed like a phrase that shouldn't occur at all. It felt abusive, actually, and while the article I've quoted from talks about stress-related arrogance and such, I'm wondering what it is about the field of neurology that attracts so many... well, assholes.

I'm happy for people who have stories of miracles wrought or who, through the plain hard work and ingenuity of their doctors battle illnesses successfully. But I admit to feeling bad, too, when I hear of the miracles of modern medicine. Because it's not happening for us, for Sophie, for the kids like her. I realize it's sort of a defense mechanism to blame the doctors. I know that I am transparent psychologically in this respect.

I wonder if there's a divine plan at work here: high-pressure neurological illnesses like epilepsy demand a certain kind of parent(often angry and frustrated)who in turn demand a certain kind of doctor (angry and abusive). Maybe that just goes round and round or is a certain level in Dante's hell. Just a thought.