Something New Under the Sun

Yesterday Sophie and I drove over to Will Rogers State Park, sat in the grass and watched the polo game. I'd never seen an actual polo game and was fascinated by the way the riders held their sticks. The little ball was hard to see, but everytime the horses thundered by us, Sophie looked up and followed them. We walked through the grassy field and then we got back in the car and drove home. It was a good morning, but Sophie had her fair share of seizures, and somewhere along the way I realized that I hadn't thought to ask Dr. Jin about Sophie. I had a post a while back about Dr. Jin and how Chinese medicine helps me. I've also written about it in my book, a chapter of which was published here.

I called Dr. Jin from the car and in a teary voice asked her whether I could bring Sophie over for a treatment. She said, yes, so that's what I did.

With needles all over her head and in between her eyebrows, Sophie didn't even flinch. She lay back on the table and closed her eyes periodically. She looked out the windows, at the trees through the blinds. She looked at me, and I sang songs to her. Oliver was with us, and while Dr. Jin left the room to prepare the teas, he fiddled with the heat lamps and sang along with me.

May the long time sun shine upon you
All love surround you.And
the pure light within you
guide your way on.

When I drove home the sun was behind me and it came through the back window of the car and backlit Sophie's and Oliver's heads. They looked like they were floating in it. Floating in sunshine.

Nothing New Under the Sun

It's been dark around here, I know, for a week or so.

I was in Chicago for a health conference and didn't really have computer access. I was surrounded by healthcare professionals, most positively noble in their efforts to change the abyss that is the American healthcare system. I was surrounded by other mothers with special needs children, some who had more than one. We are all damaged, pieces of us ripped off and hanging, but together we are somehow whole. From Colorado and Minnesota and Maine and Washington and Florida and New Hampshire and California, we wear different clothes and have different accents and some believe and others don't and it doesn't really matter. I haven't met a mother with a special child who I didn't connect to in some way (except, I imagine, THAT WOMAN).

I'm also feeling dark and not much in the mood for writing. Sophie is doing terribly right now, wracked by seizures and fluctuating hormones. She got off the school bus this week and staggered to her room, lay down and slept for over five hours. I wonder how much a body can take. I had one of my classic late-night breakdowns last night where I curse everything and everyone, certain that my life is ruined and that Sophie's is as well. I don't know what takes me over but all that I've learned seems to fly out and away and I sit and hold Sophie and rock her and wail at it all. It sounds dramatic, and it is.

And then the sun comes up and I feel better. Sort of. The boys run around laughing and screaming. The Husband starts dicing and slicing in the kitchen. If I'm lucky, I have a babysitter, one of the saints, really, who murmurs to Sophie sweet, soft words and I can then walk away and into the shower where I press my face against the cool tiles and feel the hot water pounding on my back. I remember all the cool tiles of the showers I've hidden in during the last dozen years, my tears mixing with the water and washing away.

My mother wrote today of a friend who is worried sick about the world and the state of America. My mother is intensely partisan and unfortunately conservative, and this kind of talk is just plain irritating to me. But I guess if I had voted for and supported a president who has squandered literally everything our country has ever stood for, I'd feel depressed, too.

I had the thought that when the Roman Empire fell, it ushered in the Middle Ages and then the Renaissance came and with it humanity was restored (at least for most!). Except for that rather long period of The Dark Ages. But we live in a fast world, now, right? And I'm hoping that our own Fall and Middle Ages (think torture and the Inquisition and anti-intellectual fervor)are all sped up and don't last for much longer and that we see some sort of Renaissance. At least for all these children that surround us. That sort of cheers me up.

Call me selfish (but this is a blog, after all), in my own small world, the small world that contains Sophie and Sophie and Sophie, I'm hoping for a renaissance, too. And that would really cheer me up.

And I write this fully aware that I must sit in the present, believing in its passing, believing in its change.

My favorite passage in the Bible:

Ecclesiastes
The Teacher (see his image at the top)
from the St. James version

All Is Vanity
1 The words of the Preacher, the son of David, king in Jerusalem.
2 Vanity of vanities, saith the Preacher, vanity of vanities; all is vanity.
3 What profit hath a man of all his labor which he taketh under the sun?
4 One generation passeth away, and another generation cometh: but the earth abideth for ever.
5 The sun also ariseth, and the sun goeth down, and hasteth to his place where he arose.
6 The wind goeth toward the south, and turneth about unto the north; it whirleth about continually, and the wind returneth again according to his circuits.
7 All the rivers run into the sea; yet the sea is not full: unto the place from whence the rivers come, thither they return again.
8 All things are full of labor; man cannot utter it: the eye is not satisfied with seeing, nor the ear filled with hearing.
9 The thing that hath been, it is that which shall be; and that which is done is that which shall be done: and there is no new thing under the sun.
10 Is there any thing whereof it may be said, See, this is new? it hath been already of old time, which was before us.
11 There is no remembrance of former things; neither shall there be any remembrance of things that are to come with those that shall come after.


So, that's that. Healthcare and seizures and sorrow and back again.

Read This

My new friend and fellow mother to a special needs child wrote this beautiful piece, a farewell to her readers at literarymama and to her son, Evan, who died in July. Both Evan and Vicki are nothing less than testament to love.

This Boy

This boy is my middle child, born on a midsummer day the way he was supposed to be born. This boy has always been jolly, pleased with himself and happy in the world.

This boy is now ten years old and went with me to the Beck concert last night at the Hollywood Bowl. He stood on his chair with his arms in the air and screamed, he said, "Like a little schoolgirl," a phrase that he borrowed from his younger brother.

I know next to nothing about Beck but loved him instantly for affirming my son's essential joy. I got to see it for almost four hours, pure and wild and loud.

I Can't Resist

I loved this quote from Mary Beth Crain at Soma Review, a wonderful webzine about spirituality and culture.

"It’s only in this vapid, vacuous excuse for a country that a brilliant, thoughtful man with degrees from Columbia University and Harvard Law School, who rejected lucrative career opportunities to devote himself to the poor, could be given a run for his money by a second-rate populist reactionary who, when questioned about her college-hopping days at Hawaii Pacific University, North Idaho College and Matanuska-Sisitna College in Alaska, glibly replied, “See, I did a lot of courses—no biggie, but it’s not the only mushing going on.”

And while I don't want to turn my blog, which is supposed to be about poetry and raising a child with a disbility, into a political forum, the times actually call for it. I had the great privilege of going to see Obama on Tuesday night here in Los Angeles, and while the benefit was a scene as only scenes are in Los Angeles (senior men impeccably dressed with their much younger wives, television celebrities, Magic Johnson, Barbra Streisand singing "Happy People" or whatever the hell that song is and slipping in Obama's name, Bentleys pulling up to the hotel driven by lavender shirted men with pink scarves wrapped around their necks and countless women of indeterminate age, their lips puffed and breasts like torpedoes, etc.), I heeded Obama's call to go out and argue for him and his platform, to not speak incessantly of the trivialities of That Woman and to be proud to argue and fight for what I believe. So after a week or so of silence on that end (especially because I had offended a couple of conservative friends), I'm back. Sharp-tongued and loose-lipped, serious and sarcastic. And hoping and hoping and hoping.

Anne Lamott has the answer to my anger

Click on this link of Anne Lamott's recent article in Salon.

My name is Skein Chug, by the way.

THROWING MY HAT IN

My friend Moira of dreamdogsart told me that I should throw my hat into the Vice-Presidential race, and the more I thought about it, the more I realized that yes, I should, I'd be a really good Vice-President and have a whole list of qualifications that pertain to the job. So, here they are and I hope that you'll vote for me:

I was born on August 27th, 1963, and the following day Martin Luther King made his "I Have a Dream" speech. Even though he is black and I am white, he spoke in Washington, D.C., and I was born in a small hospital in Southampton, New York, such was my karma that the speech has literally colored my whole life. I was born with a dream , and I know that I could be a voice for millions of disaffected people of all colors.

I spent the first five years of my life shuttling back and forth with my parents from the resort town of Southampton, NY and the resort town of Palm Beach, FL. Despite the fact that my father and mother are the hard-working son and daughter of immigrants from Italy and Syria, they lived a glamorous life in those early days and again, by osmosis, I have a unique understanding of what it's like to be surrounded by the rich but actually be poor. I realize this comes in handy in an increasingly connected and disconnected world (the Internet makes everything complicated, you know?). In fact, this is my campaign slogan:

FRIENDS WITH AND SURROUNDED BY THE RICH, I AM POOR, LIKE YOU!

I am a diplomat by nature but not averse to conflict. When our little family moved to New Jersey in the late seventies, I attended public school with many other white children from my neighborhood but also had the advantage of exposure to the many children of color who were bussed into our neighborhood school. In third grade, I got into a fight with Bonita Covington, a young black girl who wanted a monkey sticker that I refused to trade. The fight took place in the schoolyard and when Bonita seized my stocking cap and threw it into a muddy puddle and punched me in the face while a throng of people stood round us chanting, "Fight, fight, fight," well, I was saved by the playground monitor. I agreed to go to the principal's office and listened politely to his lecture on getting along at school. I even shook hands with Bonita, despite feeling an incredible sense of injustice that resonates today, almost thirty years later. But I still have the monkey sticker.

I tell you these anecdotes to illustrate not just my strong character credentials but to emphasize that my experiences are worthy. They are real. I am like you. You can identify with me. I don't want to belabor the point and will highlight, below, the rest of the reasons why I am uniquely qualified to serve as your Vice-President:

1. I am smart but not too-smart. I am basically the smartest of the dumb and the dumbest of the smart. My old high-school pals told me that I was able to really "hang" with those in "dumb math," without making them feel dumb when I actually took honors math.

2. I have worn glasses since I was six years old which, I believe, is a requirement for smart people.

3. I have a very mixed background of Syrian, Italian and, most importantly, white Scotch-English heritage. My maternal grandmother is from the great state of Mississippi and while I don't look a whit like it, we're actually descended from George Ross, the signer of the Declaration of Independence.

4. I'm related to Betsy Ross who sewed the first American flag.

5. I spent several years as a writer in a small regional brokerage firm in Nashville, TN and know my way around the stock market. It's big and crazy, but we seem to have survived the stock crash of the 80s all right, so I'm feeling positive about everything economic right now. It all comes round in the end.

6. I guess you could say that I'm a liberal, but my parents are staunch conservatives and I get along just fine with them.

7. I have a daughter with special needs.

8. I have a daughter with special needs.

9. I have a daughter with special needs.

10. I have two sons, aged seven and ten. The younger wants to be a mailman or a clown when he grows up, and the older wants to be a racecar driver. We're simple people and have instilled good values in our boys.

11. I live in Los Angeles and enjoy watching a couple of television programs, just like you.

12. I have a special needs daughter.

13. I'm not a big drinker.

14. I struggle with my weight just like you.

15. I'm a stay-at-home mom, but I currently hold several positions and have been successful at all of them, except maybe the last because it hasn't started yet. These are: Parent Chair for a national organisation that aims to help improve the quality of healthcare for children, founder of a national non-profit foundation that raises money for pediatric epilepsy research and outreach, Publicity Chair for a non-profit foundation, Room Parent for my son who is in the fourth grade (and spent two years on a school parent board as Head Room Parent), Den mother for my second-grade son's Wolf troop (this is the one that I am only now beginning).

In other words, I'M ORGANISED.

Organised, smart but not too smart, friends with the rich but not rich myself and the mother of a special needs child.

VOTE FOR ME. I'M JUST LIKE YOU.

No Longer Stewing, I'm Cooked

I haven't figured out its legitimacy, but this is a pretty scary website:


Saw this bumper sticker today and didn't have a camera:

JESUS WAS A COMMUNITY ORGANISER AND PONTIUS PILATE A GOVERNOR

You've got to love America, right? Some guy thought it up, made a bumper sticker and before you can blink, it's plastered all over.

Stewing

All week I've been stewing about Sarah Palin and her comments about special needs families. I've stewed and boiled and roasted despite all attempts to calm myself down. I hadn't felt this angry since, well, fights with my younger sister when we were teenagers. I posted some sarcastic remarks on Facebook and offended a friend, but I still felt angry. I commiserated with like-minded angry souls and cracked up laughing trying to concoct various scenarios where the Governor and her First Dude would be unveiled as kinky sex lovers (have you taken a look at that Bear Rug/Throw on Palin's couch?).

I lie in bed at night, ruminating on Jonathan Swift -- how we appear to be living in a parallel Gulliver's Travels.

I thought about writing an op-ed piece for the Los Angeles Times newspaper. A good friend who is incredibly knowledgeable about government could help me to tone it down, put some facts in.

But then I read "Politics of the Broken." And it's all written, beautifully. Read it. Let me know what you think. You already know what I think.

www.schuylersmonsterblog.com

The Placard

For those of you who don't know, I've been working on a book, a memoir of sorts, about my experiences raising a child with a severe disability. I'm struggling now with the structure of the manuscript, trying to shape the several hundred pages into a book. It's not linear at times and other times it's the simple telling of our story, but one of the devices I use to tell that story is the insertion of quick one or two-paragraph chapters entitled "Things People Say." The impetus to really write my book began with "things people said," the often outlandish or rude or shocking things that people say when they find out Sophie is disabled. They're also those moments where I've chosen to think "hmmm-- that'll go in my book," as opposed to "where's the gun when I really need it?"

So tonight, I had one of those "things people say" moments that just begged to be written down.

Here goes:

I went to a meeting at my two boys' new school tonight and picked up a friend on the way. We also went to pick up someone she knew who had asked for a ride, someone whom I've never met. We chit-chatted on the way to the event and when we pulled into the parking lot of the school a little late, realized that there were no parking spaces left. Except for a handicapped one. Now, I want to emphasize that I really NEVER exploit our handicapped placard (o.k., occasionally I overstay a meter and if it's hanging on the rear view mirror, I don't get a ticket). At risk of sounding self-righteous, I feel a sense of pride that I take it seriously, and when Sophie is not in the car, I never use a handicapped space. Except that tonight I felt like it was the only space left, and there were other cars parked haphazardly in the other handicapped spaces so it didn't seem like anyone was going to use it anyway and we were late and etc. etc.

I said, "O.K. should I use the handicapped placard?" And quickly explained that I really never use it when Sophie isn't with me. I told the woman that I didn't know -- let's call her Shirley -- that my daughter was handicapped.

She said, "What's wrong with her?"

I said, "She has seizures."

AND HERE'S THE "THINGS PEOPLE SAY MOMENT":

Shirley said, "AND THEY GIVE YOU A PLACARD FOR THAT?"

I know it sounds nutty, but my first impulse with this sort of thing is to feel apologetic and want to, well, explain things. Even though every fiber of my being is taken aback, I laugh, probably an uncomfortable laugh, and say something lame like, "Oh, no. She has more than just seizures. She doesn't walk well. She's really disabled." Like I need to prove it or something.

In the book I'd just leave it at the thing that the person said. Let it speak for itself without explanation. But the great thing about a blog is that I can also do a "Things That I Thought." And this is what I should have said in response to her rude, insensitive and ignorant remark (and she did go to an Ivy League college, so I can't give her any slack on this one for ignorance).

Oh, she's thirteen and still wears diapers. She needs help eating and drinking and walking. She has seizures just about every day. So, yeah, THEY give a placard for that. Isn't that great! To have a placard! Aren't we lucky?

The good thing about these moments is that I actually feel grateful when they occur. They make me crazy in a sense, but they really make me laugh more. And they make good stories, don't you think?