Tuesday, June 30, 2009
In honor of the first anniversary of my blog, I'm going to post the following since Laura said that it was her favorite post of mine AND Laura is the one who got me started blogging. If you haven't already, check out her blog A Piece of Cake.
A Good Man is Hard to Find (March 3, 2009)
Henry is my oldest boy and sort of my oldest child given that Sophie isn't really "older" than he in anything but age. Sophie will be fourteen this week -- good Lord -- so today Henry and I went shopping for a present to give her. From him. Henry's relationship to Sophie is something to marvel. While he goes through long periods when he doesn't pay much attention to her (normal, I suppose for a ten year old boy with a sister), he never fails to greet her in the morning and say good-night to her before bed. Henry has a sunny disposition -- really, there's no better word to describe him. He was born filled with joy and hope and, well, sun. He has a broad, freckled face and a broad, easy smile. He wishes on dandelions and birthday candles that Sophie could talk. He throws pennies into fountains and wishes that Sophie could talk. When he went to Catholic school, he prayed that she would talk. I'm certain that when he prays for her now, he prays that she would talk.
But back to shopping for Sophie's birthday present. We found a thin little necklace, a strand of pink string with a tiny angel bust at the center made of gold. It was a "wish necklace," meant to be wished upon and worn until it wears out.
Henry said How can Sophie wish for something when she doesn't talk?
I said You can help her to wish for something.
He said I'm going to wish that she could talk.
Later, riding home from basketball practice, he showed me that he has a loose tooth. He hasn't had a loose tooth in a long time and felt pretty excited about it. I asked him whether he hoped the tooth fairy would come when it fell out, but I said it sort of jokingly, assuming that he still didn't believe in such things. (I mean, really, how do they believe in a tooth fairy to begin with?). Henry then told me that he didn't think there was a tooth fairy and that I put money under their pillows when they lost a tooth. I didn't say anything but smiled. He looked over at me and said, "Do you?"
I guess this conversation all leads up to the incredible innocence that just about breaks my heart. As he walked from the bathroom to his bedroom, his hair wet from the shower, his legs long under his tee-shirt, he said good-night to me and gave me a kiss.
Has there ever been anyone who had seizures and talked? he asked. Or wait, has there ever been anyone who stopped having seizures and didn't talk?
Breaks my heart but in the good way -- breaks it to bursting.
Monday, June 29, 2009
In one year, I've written almost three hundred posts and received over 25,000 hits! I've met the most amazing writers, artists, photographers, crafters, gardeners and most of all mothers and fathers struggling with some of the same things that I do but who are almost always graceful and beautiful in the evocation of that struggle. I've laughed my ass off at many blogs, fought viscerally with some commenters on my own and have begun friendships OFF-LINE all over the world. I've received gifts and support and words of love from all of you.
And I thank you, deeply, for the experience. I am amazed at the power of the internet, at the wonder of community.
I think, for tomorrow's post and perhaps as the week goes by, I'll post my favorite entries. But I'd like a little help. If you care to comment on what YOUR favorite post of mine is, I'll listen and on Monday of next week, I'll draw your name for a free, signed copy of my friend Vicki Forman's amazing new book This Lovely Life.
My first giveaway!
Saturday, June 27, 2009
I wrote a while back about a little boy named Pablo who was fighting for his life.
He passed away today, surrounded by his family.
His family shared his smile with us and his short life and all their love for each other. He was a beautiful boy, and I'm saddened by their suffering, wishing them solace as they go forward.
And did you get what
you wanted from this life, even so?
And what did you want?
To call myself beloved, to feel myself
beloved on the earth.
Friday, June 26, 2009
Oliver is at Cub Scout camp, and the theme is Native American Pow Wow 2009. Oliver is fierce and defiant, characteristics that I've talked about before, and he's also funny as hell. He does love a uniform, though, and all the order that goes with it. Here he's wearing a traditional bone breastplate and, as you can see, he is thrilled.
Henry, on the other hand, is hanging out with me at home. He's enjoying his week without his little brother, I think, and all the drama that he brings. Henry is instinctually averse to anything with a uniform (much like me and his father). And he doesn't particularly love authority or conformity, either, but maintains a basic sweetness and ease in the world that is enviable.
They're both wonderful boys -- really, really wonderful.
Yesterday, Oliver was helping me to situate Sophie in her stroller. She had just had a seizure and I asked him to pick her foot up and put it on the footplate. He did this to both her legs and sang this song while he did it:
Yankee Doodle went to town
Riding on a heater
Accidentally turned it on
And barbecued his weiner.
Yankee Doodle went to town
Riding on a pony
Stuck a feather up his butt
And called it macaroni.
Gotta love this life, is what I thought.
Wednesday, June 24, 2009
I'm hard put to explain just how important music is and has been in Sophie's life. It has reached her when nothing else has, and the efforts of K, her music therapist, week after week have been soul-changing for all of us, but the effects are less than obvious, not clinical in any real sense and it's hard to quantify them. From the early days of osteopathy, when Sophie was seen by Dr. Viola Frymann in San Diego who was accompanied by a piano player right there in the treatment room to today's Wednesday music therapy sessions with K, Sophie has been exceptionally responsive to tone and rhythm. Her favorite toys are actually music makers:
rapper snappers (maybe not music, but the sound of the pulling apart is so pleasing!)
the beautiful guitar-playing of K
and actually strumming the guitar herself
Every year we're supposed to come up with a justification for music therapy so that our local regional center will continue to help fund it. How to quantify or even qualify her calming down at certain tones, her taking a turn doing something, her attempts at vocalizations, her being reaching out and toward those who play with her?
And here's one of our favorite songs that we listen to in Sophie's room as we lie on her big bed, looking out at the trees swaying as the sheer curtains flutter. It's an old Irish blessing, sung at the end of yoga classes taught by those who practice Kundalini yoga.
For other corner views and more music, visit Jane at SpainDaily by clicking HERE.
Tuesday, June 23, 2009
I am going to be reading/performing a chapter of my book (and I italicize the word "book" because I have no right to call the few hundred pages I've written an organized book) next Tuesday night.
Here's the crazy information -- if you're around, come on over!
Darlings....Chi Chi's Word Parlor is back!
On Tuesday, June 30th at 8:00PM,
we are having yet another scandalous evening of story telling, music, improvisation and of course a wine and cheese after party.
Meet great people, be entertained and hear some fun "Hot" stories.
The Atwater Playhouse
3191 Casitas Ave.
Los Angeles, CA 90039
Cost - $8.00
RSVP @ email@example.com
**Be advised we have sold out every show anywhere from 3 hours to 3 days after the invite is sent out so if you want to come please RSVP.
Also, we usually have a wait list so if you can't make it and are on the list, email us so we can give someone else your seat.
MC: Susan Howard
Kristin Waltman, Elizabeth Aquino,
Howard Leder, Brad Griffith, Bill Wolkoff, Jonathan Groff and Halie Rosenberg
Music: Mandy Steckelberg
Sunday, June 21, 2009
I rarely write about The Husband, mainly because the blog isn't about him. I respect his privacy and the gnarly nature of marriage. I always feel that there's enough buzzing around in my own head without delving into his, or our's together!
But it's Father's Day, and he's one hell of a father. He's my partner in this whole she-bang and a steady one at that. He's the hardest working father I know and maybe the most stubborn. A long time ago, when I was freaking out about Sophie in one way or another he said, "You know, we just have to worry about giving her a happy life."
He's done that for all of us.
Happy Father's Day to him and to all you fathers out there.
Saturday, June 20, 2009
When people, including some of my closest, dearest friends, see Sophie, they always say, Oh, she looks so good! They comment on her beautiful hair, her beautiful face, her "fashionable" clothes.
She looks so good! They exclaim, always, she's so thin but she looks so good!
A couple have even said, You know, she looks so good! I've never even seen her have a seizure! While I know, perfectly well, that they're being gracious, that they're expressing incredulity that someone so beautiful could actually have such a hard time of it, it also always strikes me in a curious way that there might be the tiniest implication that maybe, just maybe it isn't so bad? Because certainly they hear it from me, they read it from me, they know that something is bad because Sophie can't talk or go to the bathroom or eat by herself or really do anything by herself so it's got to be at least that bad. But I think, too, that most people want things to be better and they often want me to reassure them that things are all right. The alternative is just too much, I imagine, for them to consider.
But she always looks so good!
Tonight, I was at a party and children were invited. Generally, I don't bring along Sophie to these things because she's really not so great in a crowd. She is uncomfortable and, frankly, I'm uncomfortable. I can't really relax, enjoy myself, eat or drink and I feel vigilant. The way one might feel with a small toddler at a pool party. That kind of on-edge, distracted vigilance. Tonight, though, I brought Sophie along with the boys because she had been having an exceptionally good day. In fact, she's had a really good week. Dramatically reduced seizures, good nights and a spring in her step. I told a friend that I hated to jinx it, but I thought the homeopathic remedy might actually be working again. Too early to tell, I hedged, but it seems good. And then I knocked wood three times.
I was talking to a friend at the party who knows me, knows Sophie but has probably never really seen a big seizure before. And probably right after I had whispered that she hadn't had a seizure all day and I was so pleased with that, well, Sophie had a really big seizure. My friend stood up as I stood up and asked me what she could do. I told her nothing, just stand here and sort of block the whole thing for me. So she stood on one side of the stroller and I stood on the other, bent over Sophie as she seized. It was a big, long, ugly one, with groans and stiffening and jerking arms and legs. Sophie's face twists to the side and her eyes roll up and blink monotonously. I always go into a sort of protective crouch over her, almost like filling up the space around her so that she is shielded -- from eyes and sounds and enquiries. I think that I am probably really good at this because people were coming and going around me, drinking their margaritas and calling to one another. I've done this in so many public places that I'm almost certain that no one actually sees it. And in case you didn't know, there's really nothing one can do during a seizure but make the person comfortable as best as you can, make sure they are not choking and wait.
Wait until it's finished and she stops and then it's just some twitching and an exhausted sigh and her eyes flutter and she slumps to the side.
So that's what we did and when it was over, I calmly rolled Sophie's chair into the house and lay her down on the couch in the dimly lit living room. My friend followed me inside after a few minutes and murmured comforting things to Sophie and stroked her hair back from her forehead. And then she looked at me with tears in her eyes and I knew that it was tough for her. That it's horrible to see a seizure and very upsetting. I think she said something about how amazing I am as a mother, something that I brush off because really, it's what I do, what I've done, what I'll continue to do until God knows when.
But what my friend didn't realize is that I am grateful less for those words than for her witness. I am grateful that what she saw made her cry a bit, and as silly as it sounds, that those tears affirmed just how difficult it all is for Sophie, for the boys, for my husband, for me.
It's a kind of release to have a witness, someone who knows in some small way what it's like to watch helplessly as a seizure occurs. And then to realize that this is what we do, every day and sometimes multiple times a day, year upon year. I feel, then, that I don't need to reassure this person that it's not that bad because they've witnessed that it is. I feel, too, that they know, on some level, that while she may look good, there is This, too.
Thursday, June 18, 2009
I just received my copy of This Lovely Life by my friend Vicki Forman. She is an amazing person and while I'm at risk for using too many superlatives, Vicki is also a beautiful writer and incredible mother. But you need to buy her book, read her story and see for yourself.
You can also pre-order a book of essays, including one by yours truly. The book is called My Baby Rides the Short Bus:The Unabashedly Human Experience of Raising Kids with Disabilities.
And stay tuned for my upcoming "performance" at Chi Chi's Word Parlor.
How's that for tooting a friend's and one's own horn?
Wednesday, June 17, 2009
I'm posting two of my favorite photos that I took a couple of years ago in Santa Monica. They're really the ultimate beach photos to me, the beach being the Street, a stereotype, a cliche, well -- here you go (and the FASHION!):
For more corner views go here:
Tuesday, June 16, 2009
"O and the sea the sea crimson sometimes like fire and the glorious sunsets and the
figtrees in the Alameda gardens yes and all the queer little streets and pink and blue
and yellow houses and the rosegardens and the jessamine and geraniums and
cactuses and Gibraltar as a girl where I was a Flower of the mountain yes when I put
the rose in my hair like the Andalusian girls used or shall I wear a red yes and how
he kissed me under the Moorish wall and I thought well as well him as another and
then I asked him with my eyes to ask again yes and then he asked me would I yes to
say yes my mountain flower and first I put my arms around him yes and drew him
down to me so he could feel my breasts all perfume yes and his heart was going like
mad and yes I said yes I will Yes."
-from Ulysses by James Joyce
Monday, June 15, 2009
I'm assuming that the following beautiful poem refers to her. It appeared on the Writers Almanac this morning. I'm going to read A Good Man is Hard to Find tonight.
Lead us to those we are waiting for,
Those who are waiting for us.
May your wings protect us,
may we not be strangers in the lush province of joy.
Remember us who are weak,
You who are strong in your country which lies beyond the thunder,
Raphael, angel of happy meeting,
resplendent, hawk of the light.
As Oliver got into The Husband's car this morning to go to school, he shouted,
Just wait until I get home later, Mom. There's going to be a holy mess. I'm setting up the armies, the Indians and the cowboys. There's going to be a war!
Henry climbed in the car and blew me a kiss. He had on skintight jeans with a hole in the knee and a tie-dyed polo shirt. He was reading a book as he got in.
The Husband helped Sophie into the car. She looked bewildered this morning, rushed into breakfast and dressed. She had slept most of the day, yesterday, probably going through what one of my blogger friends calls "restructuring."
They drove away and I went back inside.
Saturday, June 13, 2009
Today was my very first official book-signing. I don't have A Book, technically, but I do have an essay in an anthology that is an actual book. And my local bookstore, Chevalier's (see sidebar for a link!), was kind enough to allow me a morning to sit amongst books and sign copies of A Cup of Comfort for Parents of Children with Special Needs. Thank you, Liz and Sue and Norman and Filis.
Many of my good friends came, the women who support and love me through everything. Thank you so much, dear women. I love you.
And others came, as well. One man grabbed a few goodies to eat (made by The Husband at The Larchmont Larder) and said, as he walked out the door, his mouth full I don't have one of those and he nodded his head toward the book. Meaning, not the book, but the special needs kid.
Lucky, you! I called after him, but I didn't really mean it.
I'm so very lucky, actually. Lucky in friends, lucky to have gone down a path that I never knew existed, lucky to have turned out all right despite the thickness and darkness of that path.
And guess who was in the next room, evidently cut from the same cloth as her bookworm mother?
Friday, June 12, 2009
As I navigate the public school system here in Los Angeles, I'm keeping this close to my heart. And here's an example of the reason why arts and music funding needs to be preserved.
And to read more about the school, here's the link to their website: http://ps22chorus.blogspot.com/
Thursday, June 11, 2009
In my other life (a life that has not been written), I wanted to live in one of the above lookout towers. I hoped to watch for forest fires with the boy I loved. I was going to surround myself with books, stacks of them and read poetry and novels. I would write and take pictures and go for walks. It would be quiet and I would be vigilant, looking for wisps of smoke, of fire, of danger. I'd be alert and open but safe inside.
I was reminded of all of this, today, as I drove Sophie to school. I had to stop the car because she was having what seemed like an endless cluster of seizures and she was hitting her hand, hard on the window. At first I just nervously glanced in the rearview mirror and spoke quietly to her. But with every thump against the window, I started to wonder whether she could break a bone in her hand. She has such slender hands. So I stopped and opened the door and sat with her until they stopped. Gardeners across the street were mowing and blowing and one touched the brim of his Chinese hat. A couple of crows hopped across the road and pecked in the grass.
Here are the lyrics to one of my favorite Van Morrison songs from the album Hard Nose the Highway. I wish you could listen to him sing them, but I couldn't find anything to download.
Well the summertime has gone And the leaves are gently turnin' And my love I wanna take you To the place heart-a-yearnin' Will you go, lassie go And we'll all go together In the wild mountain thyme All around the blooming heather Will you go And I will build my love a tower At the foot of yonder mountain And visit by the hour From a lonely wooden tower Will you go, lassie go And we'll all go together In the wild mountain thyme All around the blooming heather Come on At the foot of yonder mountain I will visit by the hour With the lily of the valley Go, will you go, lassie go And we'll all go together In the wild mountain thyme All around the blooming heather Will you go, lassie go Will you go Will you go, will you go
And here's a link to an article that appeared, mysteriously, on my computer tonight in tomorrow's New York Times.
If I were to really write about the kinds of things we face as caregivers of children with special needs, it would be a blog unto itself. I just listened to this podcast, though, that really addressed them. If you have the time, listen to it like I did, while I was cleaning out my closet.
Not fun, but good stuff.
(It's a podcast, so click on the one titled Caregivers Count! Support for Women and Families with Special Health Needs Children)
Wednesday, June 10, 2009
Join me and others around the world as we show you this week's theme: The View From My Back Window. In this case it's my door -- looks like overnight one of those giant palm fronds came crashing down. I always wonder what would happen if it hit someone. Those things are incredibly hard and heavy. We have a wonderful backyard, although today's photo looks a bit gloomy. We Los Angelenos are going through what we call "June Gloom" and it's a particularly gloomy month this year. Every morning we wake to dull gray skies and chilly air. Sometimes it burns off to typical sunshine by mid-afternoon, but lately it hasn't. You hear lots of complaining about this, and each year I laugh because we all talk about it as if it doesn't happen every single year.
You can't see it here, but we have an apple tree, a tangerine tree, an orange tree, a Meyer lemon tree and about a zillion blooming perennials. And virtually no maintenance. Really, nothing to complain about.
For some more probably FAR more interesting Corner Views, click on any of these:
Tuesday, June 9, 2009
I haven't been able to sit and write Part 3 of my Flagstaff trip, mainly because the visit verges on the sacred for me. And for Sophie, of course. So this part is quite different from Part I and Part 2 which you can review HERE and HERE (and perhaps not go any further!).
We visited this same homeopath four years ago, when Sophie had suffered through a considerable decline. Within a month or so of trying the remedy he prescribed, she had her first seizure-free day in her life. She had a week with no seizures and then almost a month. Although we haven't had nearly that good of a time since, there have been periods during the last four years when I've been able to say She's GREAT! when asked how she's doing.
For all of you who have been following the blog, you know that she hasn't been doing great by a long stretch. In fact, it's been about a year, now, since I've been able to say that with any bit of confidence. To make a long story short, we went back to see the great homeopath in Flagstaff last week.
And I still don't really want to write about it. The estimable homeopath whom we see regularly here in southern California went along with us -- he works with the Arizona guy and sort of "presents" Sophie to a class taught there. Other than airfare and hotel, the trip is free because The Homeopath doesn't charge.
I like that.
So, instead of going into the particulars -- the rainy day, the sun breaking through, the ineffable gratitude, I'll give you a few quotes about the type of homeopathy this man practices. He's considered one of the four or so great homeopaths in the world, and if you don't believe in this sort of thing, stop reading now because it will all seem too crazy to you. I've decided NOT to defend homeopathy because it's worked for Sophie, for me and for my other children. I look upon them, particularly Sophie, as a double-blind, placebo-controlled whatever, and compared to the eighteen or so regular old antiepileptic drugs that we've tried in fourteen years, well ... you get the picture.
Human beings are not just physical bodies. We have 4 levels: spiritual, mental, emotional and physical. The spiritual is reflected in the other 3 levels. When there is disharmony, some people may sense it on their physical, mental and/or emotional levels. The source of disharmony, however, is always reflected spiritually. This state may be expressed as an illness or injury in the physical, mental or emotional areas for some people. Homeopathic remedies have no effect whatsoever on the body, mind or emotions. A scientific analysis of homeopathic remedies would reveal nothing of medical value, no ingredient that can have any direct or other effect on the body, mind or emotions. Homeopathic remedies have quality that is invisible, and cannot be measured scientifically. They work only in the spiritual, an area that is undetectable, and immeasurable. Homeopathic remedies enable elevation to a higher state of consciousness by getting rid of the disruption at the spiritual level and so increasing spiritual strength. When on rises to another state of consciousness, one may lose symptoms at the physical, mental or emotional level because one is no longer the same being. (copyright ESSH 10/03)
Now, is that crazy enough for you? Like I said, I won't defend anything, just report. And as you know, I'm sometimes a desperate person but I never stop thinking. And when something is right, it's very simple to say and to admit that it is right. I've spoken before about the randomness of fate and my belief in that randomness. I truly believe that we come to things in their right time. I also believe in curing and healing as two separate entities.
The meeting with The Homeopath was wild and sacred. We drove away from it as the skies were filling up, again, with monsoon rains. I was empty of tears and filled with hope.
Monday, June 8, 2009
I just read an article about the Amazon Kindle and whether its popularity is going to ruin the book industry. I always like to say that the ONLY constant in my life is my love of reading. Despite anything I'm going through or feeling, I can always read. I've read like a madwoman since the day I learned how, and my passion is equally spent on books themselves, the actual paper, the binding, the heft in the hand, the smell of the page.
But I have a Kindle, and I love it.
In the article, Sherman Alexie, the novelist said something to the order of: I saw a woman reading a Kindle in an airplane and I wanted to punch her in the face.
I'm rolling my eyes at that. My Kindle isn't taking the place of my books -- they're scattered literally everywhere and live, even, inside of my head. I think his comment is ridiculously pretentious -- the worst kind of whine.
I'm a bit of a literary snob, I suppose (although the photo above of the library book is actually the FIRST thing by Bellow that I've ever read), and a Luddite, certainly, when it comes to Twitter and some of the more advanced computer stuff out there. But the Kindle is really just like a book, to me. Perhaps a little colder, it hasn't taken the place of my "real" books. It's just added to them in a far more compact way.
Sunday, June 7, 2009
I have a Flagstaff Part 3 in the works, but after a weekend of end-of-season baseball games and parties, school fundraisers and a nasty cold, I'm spent.
But here's something from the estimable Thich Nhat Hanh:
Many Westerners attracted to Buddhist practice have abandoned their own spiritual traditions. They reject the churches and clergy of their own traditions because they feel constricted and uncomfortable with the attitudes and practices they have encountered there. They have suffered within their own tradition and so have sought another. They approach Buddhist practice with the hope of replacing their own tradition and may wish to break away from their own tradition forever.
According to Buddhist wisdom, such wishing is in vain. A person severed from her own culture and traditions is like a tree pulled out by the roots. Such a person will find it hard to be happy. Buddhist practice can offer effective means to heal, reconcile, and reunite with one’s blood and spiritual families, in order to discover the precious gems in one’s own traditions. Thanks to the practice, people will see that Buddhism and their own spiritual tradition have many things in common, and therefore it is not necessary to reject their own spiritual tradition. They will see that there are things that need to be transformed in Buddhism as well as in their own tradition.
–from Teachings on Love (Parallax Press)
Saturday, June 6, 2009
I read the following, this morning, in the final pages of Joseph O'Neill's beautiful novel Netherland:
We were sailing on the Staten Island Ferry on a September day's end. The forward deck was crowded. There was much smiling, pointing, physical intertwining, kissing. Everybody looked at the Statue of Liberty and at Ellis Island and at the Brooklyn Bridge, but finally, inevitably, everybody looked to Manhattan. The structures clustered at its tip made a warm, familiar crowd, and as their surfaces brightened ever more fiercely with sunlight it was possible to imagine that vertical accumulations of humanity were gathering to greet our arrival. The day was darkening at the margins, but so what? A world was lighting up before us, its uprights putting me in mind, now that I'm adrift, of new pencils standing at attention in a Caran d'Ache box belonging in the deep of my childhood, in particular the purplish platoon of sticks that emerged by degrees from the reds and, turning bluer and bluer and bluer, faded out; a world concentrated most glamorously of all, it goes almost without saying, in the lilac acres of two amazingly high towers going up above all others, on one of which, as the boat drew us nearer, the sun began to make a brilliant yellow mess. To speculate about the meaning of such a moment would be a stained, suspect business; but there is, I think, no need to speculate. Factual assertions can be made. I can state that I wasn't the only one on that ferry who'd seen a pink watery sunset in his time, and I can state that I wasn't the only one of us to make out and accept an extraordinary promise in what we saw--the tall approaching cape, a people risen in light. You only had to look at our faces.
Friday, June 5, 2009
Thursday, June 4, 2009
So I left Part I with rain and my gratitude for its grace. But the plot thickens, and you know the saying of "when it rains, it ...."
I checked the two of us into the Holiday Inn Express in Flagstaff, and then we got back into the Sentra and drove around town a little. I always carry a small notebook with me, wherever I go, and take notes in it. One of my writing teachers and mentors tells her students that if they're going through a crisis and it's difficult to write authentically, then write through it. Take notes, she says, if you can't do that.
Anyway, I managed to scribble down a couple of things that I noticed while driving around Flagstaff, Arizona in my rental. These were:
The Hog Family Restaurant and Diner
The Wicked AZ Coffee Shop (and I actually didn't get it, really, until I'd driven at least a quarter of a mile away)
A man wearing a huge hiking hat (I'm an urban girl and don't even know that there's such a thing as a hiking hat, but it was huge and khaki-colored) riding on an ENORMOUS UNICYCLE.
I wish I'd had my camera.
Sophie was happy, in the car, looking out the window. We drove around and around and then finally went to Denny's for dinner.
I don't think I've ever admitted it in public, but I hate going out to dinner with Sophie. I hate the stares and the tight smiles and the uncomfortable concern. I hate that I hate it, actually. I can never quite figure out how to position her stroller so that I can feed her properly, and I'm always tense, waiting for her to have a seizure and hit her head on the table. At the table next to mine a family sat down with a tiny baby in a car seat, perched on the table. There were three women, one obviously the mother of the two others and a big, burly guy. I could tell, right away, who the new mother was. She looked terrible. Her hair was tied messily up and she had on glasses (she looked like the sort of person who only wore glasses when she just didn't have the energy to put in her contacts -- I'm one, as well). She was slumped in her booth, her head back. The other young woman had short, neat hair and cute clothes. She picked up the baby and jiggled it a little, cooing into its face. Look, he's holding his head up, real nice, she said. And then she said it again. And again. There was no reaction from the woman I just KNEW was the mother. It was sort of funny and sort of sad. I wondered if she had post-partum depression or she was just too damn tired to care whether her baby could hold his head up properly or not. And then I thought about how having a child with severe disabilities is sort of like having a very young baby, in some respects, forever.
But I digress.
We went back to our room at the Holiday Inn Express and I put Sophie into her pajamas and into the king-sized bed we were going to share. And she actually went to sleep! And there I was, in my own pajamas, happily reading my stacked-up New Yorkers and watching tv while I turned the pages. Sophie had a couple little, in-sleep seizures, but nothing that upset me too much so I eventually turned out the light and went to sleep myself.
I woke up abruptly during one of Sophie's BIG seizures. It was pitch dark in the room and when I squinted I saw on the clock radio that it was around 12:45 am. I put my hand on Sophie's arm to comfort her and pulled it away because it was soaking wet. What the hell, I thought and fumbled for the light, turned it on and turned back to Sophie who was now lying quiet and spent. I put my hand again on her arm and realized that her entire sleeve was soaking. And then I felt it, a big PLOP of water on my hand. I looked up and PLOP, another drop of water landed in my eye. What the hell I thought again and decided to call the front desk. The phone rang at least ten times and then a man answered.
Now pretend that you're watching a scene from a David Lynch movie.
Uhh, hi. I'm in room 522 and I think the ceiling is leaking?
Yes? (the tone is very flat, very slow, very dull)
Well, can you help me? I have a daughter here that has some pretty serious disabilities and it's almost one in the morning. Could someone maybe come and help me move the bed?
I'll have to call maintenance but they're not in the hotel.
How long will that take? (woman's voice is growing slightly more high-pitched, as she looks worriedly at her daughter who has woken from her post-ictal state and is now sitting up, breathing heavily)
About twenty minutes.
Listen. I've got a HANDICAPPED DAUGHTER HERE. SHE HAS SEIZURES AND THIS IS GOING TO BE VERY UPSETTING TO HER! Maybe we need to change rooms? (the moment the woman says this, she looks around the room, realizing that she's going to have to pick everything up and re-pack it and it's literally strewn everywhere, something she ordinarily never does but did tonight because she felt like it)
I'll call maintenance and see if we can move the bed (the man's voice is so dull as to seem robotic)
He hangs up and I hang up and pace around the room, throwing all my shit into the suitcase, alternating patting Sophie in her disoriented state, preventing her from toppling off the bed while keeping her out of the drip, drip, dripping that I finally stop by putting the ice bucket on the bed. The phone rings.
Uhh. We can't move the bed. I'll have to go look to see whether a room is ready for you somewhere else.
The woman's voice reaches its highest pitch and she says, slowly and distinctly that since she has a handicapped child she's going to need some help and this is going to need to happen quickly because it's after 1 am in the morning.
The man says that he'll be up as soon as he finds a clean room to help me.
I hang up and morph fully into my night/time psycho self. I won't go into details, here, because it's just too, too much.
When the door rings, I've managed to pull a dress over my worn pajamas and put Sophie into her chair. My bags are packed and I go to the door and open it.
The guy who I had been speaking with is standing there.
He is a very short, American Indian with black hair reaching past his waist. He is a stereotype. He has a CANE and is clearly disabled. He appears from Central Casting.
Native American cripple.
He eyes me, towering over him in my dress over pajamas get-up and glasses and he eyes Sophie, sitting wild-haired and eyed in her stroller wheelchair. He says, in the same flat tone to follow me to your new room, and then he starts literally hobbling, shuffling down the hallway toward the elevators. When we get into the elevator, I struggle with Sophie's chair and the suitcase and he is patient. The light is garish, and I try not to make eye contact. Sophie has started to have small seizures, the kind where her arms fly out and I have to make sure that she doesn't hit them on the walls.
And then, as I follow him out of the elevator and down the long, empty hallway, I have the sudden feeling that perhaps I've had a stroke or something and this really isn't happening. Me, pushing Sophie, seizing in her stroller, in a Holiday Inn in Flagstaff, led by a handicapped American Indian at one in the morning.
But I must add that the man was preternaturally calm, and I appreciated that. He calmed me down, actually.
We got our room. Sophie didn't go back to sleep the rest of the night, not really, so I slept only fitfully. But when I woke up, the sun was shining brilliantly and there didn't seem to be a trace of rain -- in the sky or dripping from my ceiling.
Like another writing teacher once said to her class, You can't make that shit up.