Thursday, January 31, 2013

Sophie World

I got this photo today from Sophie's teacher with the following email:

After a very long walk, a community trip and a cooking lesson, Sophie is just plain sacked out!

Sometimes I worry about Sophie at school -- well -- not sometimes, but more like nearly all the time. We parents of children who are non-verbal and/or completely defenseless in a myriad of ways take a certain leap of faith -- some might call it insane -- when we drop them off for six to eight hours with strangers or entrust them to school-assigned nurses and aides. While I've actually learned to at least understand the merits of the medieval chastity belt, I do believe Sophie to be safe at school, and I know that her teacher and aides do a bang-up job teaching and caring for a diverse group of special education students. My expectations for the gigantic morass that is the Los Angeles Unified School District are definitely zilch, though, and I've long let go of the legalese in Sophie's IEP, even caring whether or not her "goals" are being reached. There's only so many years when learning to feed oneself with maximum assistance is something for which to fight tooth and nail. What I'm grateful for, though, are these snippets of her life there that her teacher periodically sends me. They reassure me that Sophie has a life at school that is rich with activities and friendships and care.

Tomorrow, I'll be attending a workshop on conservator/guardian issues. Sophie will be eighteen years old in March -- good lord! -- and it's time for her to go out on her own and make her way in the world.

Just teasing. I'll no doubt learn about how to become her guardian without exploiting her rights as a human being. Stay tuned for what I imagine will be some Monty Pythonish moments as I navigate yet another system. I'll end here with a clip from a movie that my friend Jeneva recently posted on her FB page in anticipation of her son's IEP. I think it pertains to the parents' perspective dealing with any of the systems we encounter (insurance, medical, education, social, etc.). And it made me laugh out loud.

It's Only Rock and Roll

and we like it.

It's Decade Day in ongoing Spirit Week at The Brothers' school, and Henry is a combination of Mick Jagger in the late sixties and perhaps a transvestite from Los Angeles, circa 2013 (although I didn't note that similarity this morning when I kissed him good-bye). Unfortunately Oliver is sick at home with the flu and unable to participate. Henry was going to wear my high heeled boots but couldn't squeeze his giant man foot into them, and as he turned away and walked to his carpool, I clawed at the patch of grass that he'd stepped on, pulled it up and kissed it.

Wednesday, January 30, 2013

Respite: The Greatest News Ever


If you cup your ear and lean toward the west, you will hear a big ruckus coming from California. If you lean a little further, you will hear some squeals of surprise and pleasure coming from the Southland. If you lean even further and perhaps nearly tip over your chair, you will hear my tiny yet inexhaustible voice nearly shouting with happiness.

You see, I just received word from Caregifted that I am going to Victoria, British Columbia for a seven-day all-expenses paid trip of rest and relaxation.


What more can I say? Heather McHugh, the esteemed poet who also received a MacArthur genius grant, founded Caregifted as a non-profit organization that aims to bring respite in the form of all-expense paid getaways to full-time life-long caregivers of severely disabled family members.

When I applied for the respite week and wrote about my life and history caring for Sophie, I told them that after nearly eighteen years,  a week-long respite specifically awarded for long-time caregivers seemed more like a dream than a reality.

Good grief. I'm near speechless.

Level the Playing Field

Here are some statistics from the Centers of Disease Control and the National Institutes for Health. Notice the disparities.

Disease                      NIH funding       Americans      Annual                
                                    2012                      afflicted           deaths

                                   (in millions)

Alzheimer's                 $498                    5.4 million         83,000

Epilepsy                       $153                     3.2 million        50,000
Breast Cancer            $712                     200K*                41,000
Parkinson's Disease$151                     1 million                15,000
Multiple Sclerosis      $121                    400K                     2,400

**annual new cases on invasive breast cancer equal to annual number of new epilepsy cases

My friend, the writer Christy Shake of calvin's story is working tirelessly on behalf of children with epilepsy and their families. She would love for you to sit up and take notice of the facts outlined above and the dire need for funding to help eradicate this disease that so adversely affects her son Calvin and my daughter Sophie, two among millions who have epilepsy. Donate to cure epilepsy now here.

Tuesday, January 29, 2013

Super Heroes

It's Spirit Week at The Brother's school, and Tuesday was Dress Like a Superhero Day. I imagine both my boys warrant a natural superhero status, given how much they help me and how much they endure, but both were insistent on using the costumes pictured above and working them into the theme.

Hence, Superhero Chicken and Superhero Horse.

I'm so proud of my boys.

Life is weird.

How We Do It: Part XXII in a series

Adjective: hanging by a thread

That's a leaf that was hanging on my windshield nearly all day, yesterday, as I drove about the city. Blown from the tree that overhangs the driveway and wet from the rain that fell off and on all weekend, the leaf clung to the window for hours, and I didn't want to clear it. Sophie was sick with the flu all last week, and as her fever spiked up and fell down, she had, paradoxically, no seizures. We discussed this last week -- the phenomenon of neurological abnormalities abating during periods of illness and fever, common among the autistic community and rarer in the epilepsy world. Around these parts, though, we were quiet, our breath was held collectively. No seizures. No seizures for a week. No one uttered a word about this -- not The Husband, not The Babysitter, not Henry, not Oliver and other than the passing observation on this blog, neither did I. Because that's how we do it around here. We hold our breath, superstitious, wary of the other shoe dropping, the proverbial jinx. 

On Sunday I went to a daylong class about the Four Noble Truths of Buddhism, taught by the great Sharon Salzburg. The first Noble Truth is the truth of dukkha, which roughly translates into anxiety, suffering, and dissatisfaction. Dukkha attests to the human tendency toward dissatisfaction with circumstances and an expectation for something different. The second Noble Truth is the origin of dukkha, or the cause of suffering, and this is craving, attachment, aversion. I thought about the first and second Noble Truths as I drove around yesterday, the yellow leaf filipendulous on my windshield. I thought about them, again, later in the afternoon, when Sophie had a huge seizure for the first time that week, right before dinner and then again, when she had another one during dinner. Oliver stood in the doorway, his face grim and asked is she all right? when it happened, again, twenty minutes later. As Sophie jerked, her face contorted into a grimace, the phlegm of the past week's flu and congestion rattling in her throat, I felt fear come flooding back, the other shoe, dropped, the jinx a prophecy. I had a minutes-long internal debate on whether or not to administer Diastat. I wondered, frantically, if she had something else, a secondary infection. She had no fever, though. I panicked, briefly, about her dying. I acknowledged that, as I have so often done and watched the thought slip away. 

A week free of seizures and then a flurry of them, and I thought, at first, that it might be some cruel joke, the brain rushing to catch up, a perverse reversion to normal. 

When the adrenaline calmed, I sat for a long time at Sophie's side and watched her breathing, her eyes open but vague, and I felt resigned to all of it, or perhaps not resigned but, rather, cool. 

The third Noble Truth is the truth of the cessation of dukkha, the removal, absence or non-arising of suffering, and the fourth outlines the path to the cessation of dukkha. Earlier in the day, as I'd driven around the city, the leaf clinging to the windshield, I had thought about the four Noble Truths, how the experience of giving birth to Sophie, to receiving her diagnosis, to looking for help for her, to fighting for her and to watching her seize, over and over and over again while simultaneously living was a near perfect parallel to the path of the four Noble Truths and that I was infused with them quite beyond my own consciousness. 

Sophie had another big seizure this morning during breakfast, and when we brought her to her room, both Henry and Oliver, dressed as SuperHorse and SuperChicken, stood in the doorway, anxious. Is she all right? they asked, and I assured them she was. They left for school, and an hour later, so did Sophie. When I went outside to my car, the leaf, of course, was gone.

Monday, January 28, 2013

Poetry, Absolution and the Disgraced Cardinal Mahoney

The Chinese word for poetry is made up of two characters: word and temple. That's what I'm thinking about as I sift through my poetry books, looking for something to memorize, to think about, to ring a bell, because before this, before the sifting, I had read of Cardinal Mahoney, the repugnant former archbishop of the Roman Catholic diocese in Los Angeles, the powerful Cardinal who shuffled the priests around, the priests who had preyed on the flock. The Cardinal, whose morality is less than the bird's, whose scarlet plumage (those robes! those ridiculous hats!) served as a cloak for hubris and his flock (those that weren't raped or sodomized, those that didn't retreat from his Church) bowing and apologizing, his and their words weak, as ineffectual as the index cards he professed to carry around with him (index cards!), the names of those he'd wronged on the faint blue lines, at his craven lips as he fingered his rosary beads in prayer.

I have no idea what the Chinese characters mean that symbolize absolution (above), but should there be absolution for this man and for those who defend him, still (both literally and figuratively?). He lives comfortably, somewhere, here in Los Angeles, for all we know cloaked in scarlet, fingering those index cards of names, surrounded by sycophants who live and work and breathe to protect him.

Cardinal Mahoney, Olvera Street April, 2007**

His Prayer for Absolution

For those my unbaptized rhymes,
Writ in my wild unhallowed times,
For every sentence, clause, and word,
That's not inlaid with Thee, my Lord,
Forgive me, God, and blot each line
Out of my book, that is not Thine.
But if, 'mongst all, Thou find'st here one
Worthy thy benediction,
That one of all the rest shall be
The glory of my work, and me.

Robert Herrick (1591-1674)

**I took that photo many years ago when I brought my children downtown to see the Blessing of the Animals. It nearly makes me sick right now, to have been so close to such a terrible, terrible man.

Awful People Edition

I picked up that game the other night as I wandered around a mall in Santa Monica with Oliver. It was raining lightly outside, and we were waiting for Henry's lacrosse game to start at the ridiculous Saturday night hour of 8:00 pm. We haven't played the card game, yet, but I thought about it when I left our house this morning, mid-getting-ready-for-school festivities. The word festivities is a euphemism for the grinding hell that is mornings of late, and this morning I took a different tack by eschewing getting involved in the sibling bickering, the haranguing on getting out of bed, eating breakfast and who is supposed to feed the dog, as well as the hysteria over whether or not to dress in costume for upcoming Spirit Week.

I am a morning person stuck in this life with a houseful of non-morning types, and they're bringing me





Because I know that only I can change or, rather, respond to external stuff as opposed to reacting to it, I decided to cheerfully absent myself from the festivities. I put on my walking clothes and grabbed my walking stick (just kidding on the stick) and said, as I walked out the door, I'm going for a walk! Have a good day, guys!

When I turned my face up to the sun and the crisp, after-rain air, my coffee cup in hand, I could almost hear the mouths drop inside into lunchboxes that were not yet filled, a stunned silence that probably morphed into incredulity that one person, at least, was throwing in her hand and not playing any more Awful People Edition.

Good morning!

Sunday, January 27, 2013

Iris and the Guitarist

The old Station Inn, Nashville, TN

He lived in a dingy room in a dark corner of Nashville, Tennessee, and when Iris looked back, she realized that she'd acted inappropriately in a colossal fashion. She had found herself revelling with him under frayed sheets on a bed without a headboard in a room with one window that looked out onto a bare tree whose branches reached up into an iron-gray winter sky.

Comments from the Peanut Gallery

I was putting my earrings in and just generally "fluffing up," as Oliver put on his basketball shoes in my bedroom yesterday morning. I wore a pair of jeans, a black tee-shirt and a light blue cardigan sweater with one button buttoned and a pair of red clogs. I squinted at myself in the mirror and probably sighed, but Oliver must have been appraising the goods because he said, Mom, you sorta have a style, but it's not like that many other people's. I asked him whether that was good, whether it's a good style or what, exactly do you mean? And then I steeled myself and waited for what I was certain would be a vanity-obliterating comment. He paused, though, and carefully said, Well, it's sort of a style, and maybe it'll be what people will wear eventually, like they'll catch on or something when they're older, but it's sorta good. I asked him what sort of style he thought I had, and he answered, Sort of like yoga - y and hippie-ish and momish all combined. And then he got up and walked out of the room, and I honestly didn't  know whether to feel flattered or resigned.

Saturday, January 26, 2013

Saturday Night West Coast Re-Post (I missed last week!)

Busy in South Carolina with my beloved college girlfriends, I completely forgot last week to continue my time-honored tradition of capping Saturday with a re-post from the old archives. I stumbled upon this one from that Link Within thingamajig below every post and just couldn't resist posting it. What strikes me as wild is how much Henry has grown in the past three years -- from little boy to man, really! On the other hand, Sophie seems nearly age-less -- she hasn't changed much in the last three or so years, and I don't actually know how I feel about that.

If you have a post that you'd like to re-post, please leave the link in the comments! I don't know how to do that linky thing, and when I looked up how to do it, I got agita, so let's just keep things unorthodox, shall we? I'd love to see what strikes your fancy on a Saturday afternoon (West Coast) or evening (East Coast) or beyond (the rest of the world).

FRIDAY, MAY 29, 2009

Sophie and Henry

Do we look alike? Henry asked tonight.

Yes, I said, you look like brother and sister.

I'm glad she's my sister, 
he added, and I say prayers that her seizures will stop and maybe she'll talk.

Friday, January 25, 2013

Shame on You: Episode 3,234,678 in a series

In his inaugural address, Barack Obama said the commitments we make to each other through Medicare, Medicaid and Social Security don’t make us a nation of takers. But the actions of Amgen and its cronies under the dome on Capitol Hill show who the real takers are — not those who look to government for support in old age and hard times but the ones at the top whose avarice and lust for profit compel them to take as much as they can from that government at the expense of everyone else.
from Big Pharma Buys Off the Senate by Bill Moyers 

You know my little story of Sophie's anticonvulsant -- the drug clobazam (known as Frisium outside the U.S. and Onfi inside) -- that costs $63 for a one-month supply if I buy it in Canada and nearly $1,000 if I buy it here in the United States ($500 with Sophie's private insurance policy)? It's such a small, small story if you compare it to the one I read about today, a story of cronyism and corruption and grievous ethics that makes your fingernails curl. In a nutshell, the enormous for-profit biotechnology firm Amgen (that, among others, manufactures a profitable drug for those on kidney dialysis) used its team of 74 lobbyists in Washington, D.C. to sneak in a huge loophole in the recent fiscal cliff deal that gives the company two more years of relief from Medicare cost controls for certain drugs for patients on kidney dialysis. Three senators, two Republicans and one Democrat, evidently "hold heavy sway over Medicare payment policy" and all three -- surprise, surprise -- have "received hefty campaign donations from the company whose bottom line mysteriously just got padded at taxpayer expense."

You can read about the whole pile of sh**t, here.

Shame on Amgen.
Shame on Senators Mitch McConnell, Max Baucus and Orrin Hatch.
Shame on Big Pharm and its lobbyist henchmen.
Shame on all those who support this shit, whether you're a government employee, a consumer with shares in these companies, a lobbyist for Big Pharm, a drug manufacturer, an apologist for the grossest inequities in our country or someone who just doesn't want to admit that money rules.


The perfume bottles rattle when the dryer is on, a click a tinkle as the clothes tumble silently under the smile of Sophie sitting in the ranunculus field, a world away.

An old woman with one black sock and a flip-flop pushed a cart down the street this morning, reached into the blue cans, fishing for plastic and bottles before the truck came by, rattling.

He sneezed so many times in the early hours of the morning that I woke up from a dream of water and sticks floating, a house with open doors, rattled.

I Dwell in Possibility --
A fairer House than Prose --
More numerous of Windows --
Superior -- for Doors --

Of Chambers as the Cedars --
Impregnable of Eye --
And for an Everlasting Roof
The Gambrels of the Sky --

Of Visitors -- the fairest --
For Occupation -- This --
The spreading wide my narrow Hands
To gather Paradise --

Emily Dickinson

All Retch and No Vomit

How long has it been since you've listened to Alan Watts' cool voice and been mesmerized? Have you ever listened to Alan Watts' cool voice and been mesmerized? I read Alan Watts when I was just out of college, when I lived in a white farmhouse on a country road in North Carolina with a boy I loved. While I might have been a tad too earnest in my explorations, an earnestness that tipped precariously close to pretension, I learned about Zen Buddhism from Watts' books as well as the more mystical aspects of Catholicism, into which I'd been baptized but had lost interest in somewhere around age fourteen. The two titles that come to mind were Myth and Ritual in Christianity and The Way of Zen, and I might be able to rustle up my dog-eared copies somewhere in this house in this life that I live right now. Both books affected me profoundly and gave me the beginnings of what I might call a more settled approach to religious belief and practice. I might, perhaps, delve into them again and see if the fuss they provoked then still carries weight now.  I listened to countless tapes of the man, too, because so many of his lectures and talks and teachings were recorded, which leads me to why I'm even writing about Watts here. I stumbled upon this recording of a talk that Watts gave, one of many hundreds that are now accessible on the internets, and as a parent frequently called upon to impart some kind of sense and wisdom, I found it resonant.

Thursday, January 24, 2013

Rainy Day Music

This makes me think of a rainy night in Newport, Rhode Island, an old movie theater, running from there to here, faces wet, the way he kissed the drops, pushing away the cold of Canada, the older woman, our laughing through screens, my long legs.

Rainy Morning, Immunology and Other Rare Things

A rare sight in Los Angeles

We woke up to gentle rain this morning, and after the swirl and angst of getting-ready-for-school, the house is relatively quiet, save the humming of Sophie who has been sick all week with the flu. She is better today, up for the first time since I got home on Sunday. The strange thing is that Sophie doesn't have seizures when she has a fever. It's been a phenomenon since she was a tiny baby: high fever, no seizures. In case there's an immunologist reading, I have three questions:

  1. Sophie began having seizures and was diagnosed with infantile spasms shortly after her initial vaccinations at two months of age. She had no fever, just the myoclonic jerks that soon morphed into other type seizures.
  2. The only treatment that Sophie responded to when she had bouts of ESES (electrical status epilepticus in slow wave sleep) was infusions of intravenous immunoglobulin (IvIg).
  3. When Sophie has a fever -- particularly over 101 degrees, she stops seizing.

Well, those are actually three observations -- not questions -- and my question is: Are these three observations related?


Wednesday, January 23, 2013

Xanthippe, back in the saddle

That's me in my car, waiting for one of my children to come out of an appointment, looking (as Brittany told me on Instagram) insouciant.

Insouciant:  free from concern, worry or anxiety; carefree; nonchalant; marked by blithe unconcern (from the French in - not and souciant - trouble, first documented usage 1799)

Hilarious! I particularly love the phrase blithe unconcern.

Lately, I've thought of myself more as a Xanthippe.

Xanthippe: a nagging, ill-tempered woman (after Xanthippe, wife of Socrates, who was portrayed as a nagging, quarrelsome woman, the word derived from xanthos (yellow) + hippos (horse), first documented usage was 1691)

Being back in the saddle, haranguing insurance companies, driving carpools, staying married and parenting all call for the Yellow Horse, no?

Reader, are you insouciant or a Xanthippe?

Big, Long F**ing Sigh (and a bit of a rant)

from Anthem Blue Cross, dated 17-Jan-2013:


We would like to follow up regarding the grievance referenced below. We appreciate your taking the time to express your concerns to us, since it is through such communication that we are able to continually improve the quality of service that is provided to our customers. 

Please be assured that the issues you have brought to our attention have been reviewed and appropriately addressed.

Anthem Blue Cross (Anthem) received a grievance regarding the non-formulary status of the prescription drug Onfi. The grievance requests that we add the drug to the formulary, since it is a very expensive medication. You are now forced to go to Canada to purchase it at a reasonable price, and your doctor has included a letter of necessity.

I can understand your frustration with the classification of your prescription. Unfortunately, Anthem is unable to alter the terms of the plan for any one member. If you wish to take a medication that is non-formulary, you are certainly permitted to purchase this drug.


The Onfi prescription is expensive and there may be only a limited number of members who use this drug. Anthem regrets that at this time it will continue to be considered non-formulary. 


[Blah, blah, blah]


G&A Representative
Grievance and Appeals Department

Well, I guess my next step is to request that the drug be "reviewed for formulary consideration at the next quarterly meeting." I'd love to call up Ms. Skala and give her a piece of my mind, but why bother? She's probably not even a real person.

I've beaten the dead horse on this one, folks, over and over. Who the hell are these people? Why, why, why don't we have universal health coverage? Why does an insurance behemoth constantly come between us and our doctors? Why are the obscene profit margins of insurance companies not more roundly denounced? Why does a drug cost Sophie $63 a month in Canada and $990 in the United States? The same drug? Why? Could there possibly be millions of children in Canada who are on the drug and thereby the price is lowered due to demand? Why is Sophie not entitled to a medication that helps her at a reasonable price? Why do people object to entitlement when it benefits a seventeen year old disabled young woman who has grand mal seizures twice a day every single day of her life? Why?

Tuesday, January 22, 2013


This moves me powerfully. I know that it will move you as well, particularly if you have been the caretaker of a child with a disability for more than ten years. It is a clip from a documentary, not yet completed, being made by poet Heather McHugh and filmmaker Adam Larsen, "celebrating and giving voice to one of the most 'under-sung' of human communities: long-term, full-time caregivers of disabled family members."

Read more about it here.

Inauguration day and why I'm a tad jealous of my kids

When I was Henry's age, Jimmy Carter was trying, ineffectually, to bring our country out of the dark days of Watergate and all the lying and paranoia of the Nixon years as well as the lingering poison of the Vietnam War and the ripping social changes that occurred as a result. A few years later and still too early for my first presidential vote, Ronald Reagan was in charge. The only thing I can remember in high school was the day Reagan was shot, and by the time I was immersed in college and had found my people, those with broad and tolerant liberal ideals and traditions, Reagan's second term represented nothing but superficial cheer and jingoism. I understand now that Reagan was unable to utter the word AIDS until 1987, so huge was his discomfort over homosexuality, and one has to wonder if the epidemic had broken out in the "straight" world whether more might have been done to stem it and prevent the hundreds of thousands of deaths from the disease during his tenure and the millions afterward.

But then there's this:

Our journey is not complete until our gay brothers and sisters are treated like anyone else under the law ... for if we are truly created equal, then surely the love we commit to one another must be equal as well.
President Obama's Second Inaugural Address 

And there was also this:

We, the people, still believe that every citizen deserves a basic measure of security and dignity.  We must make the hard choices to reduce the cost of health care and the size of our deficit.  But we reject the belief that America must choose between caring for the generation that built this country and investing in the generation that will build its future.  For we remember the lessons of our past, when twilight years were spent in poverty, and parents of a child with a disability had nowhere to turn.  We do not believe that in this country, freedom is reserved for the lucky, or happiness for the few. 
President Obama's Second Inaugural Address 

 and this:

We, the people, still believe that our obligations as Americans are not just to ourselves, but to all posterity.  We will respond to the threat of climate change, knowing that the failure to do so would betray our children and future generations.  ...  Some may still deny the overwhelming judgment of science, but none can avoid the devastating impact of raging fires and crippling drought and more powerful storms.The path towards sustainable energy sources will be long and sometimes difficult.  But America cannot resist this transition, we must lead it.  We cannot cede to other nations the technology that will power new jobs and new industries, we must claim its promise.  That’s how we will maintain our economic vitality and our national treasure -- our forests and waterways, our crop lands and snow-capped peaks.  That is how we will preserve our planet, commanded to our care by God.  That’s what will lend meaning to the creed our fathers once declared.
President Obama, Second Inaugural Address 

I remember wincing when Reagan spoke during his later years, and for the life of me I can't remember a single thing he said in an inaugural address.

Not so my sons Henry and Oliver, and the experience they are having as kids growing up during the Obama years. They are at once nonchalant about his race and the enormous gains that his presidency represents and enamored of his cool eloquence, his smile, and his beautiful children the exact same age as they. They know he supports the gay parents of their friends, and that his health plan will help families of children with disabilities like theirs. They know that he not only believes in global warming but that he is (however belatedly) pledging to do something about it.

We watched the inauguration all morning, and while my eyes teared up again and again, finally spilling over at the ringing words of his address, both Henry and Oliver took it in stride, enjoying the music and even the wonderful poem that the openly gay, Cuban-born and American-raised Richard Blanco read in a Billy Collins'-like incantatory tone:

You guys are so lucky and blessed to be coming of age during this time, I said to my boys, proudly. This  man is our President and he represents what is good about our country, what our country should be proud of  -- you're lucky that when you look back on your childhood, he will be the man that you remember as our country's leader.

You know, I realize the inauguration used far too much corporate money, and I've never been one to appreciate splendor or fawn over celebrity, but I do revel in the words, and I heard them as authentic and true and resolved. I can't pretend to know whether things will unfold as the President wishes them to, but I can hope they do, and I can sure as hell impress upon my children that the ideals spoken of yesterday are the right ones, the honorable ones, the ones that their father and I espouse and support.

Reader, what did you think of the President's address and if you are conservative and dislike the President, what did you tell your children?

Monday, January 21, 2013

The Greatest Weekend in a Decade, at least

This is the year we all turn fifty -- and to celebrate we flew and drove to a grand house in South Carolina. We came from Paris, France and Los Angeles, California. We came from Georgia, and North Carolina. We came from Virginia and South Carolina and Maryland and Tennessee. We are married and divorced. We are with children and without children. We have adopted children. We have children in college and children at home and children with disabilities and children without. We are gay and straight. We love our families and we love each other, passionately.

We went for a big hike in DuPont park on Saturday morning. Some of you who saw the movie Hunger Games might recognize the gorgeous, wild beauty of the place.

We enjoyed the scenery and took many group photos,

But we mainly talked. We couldn't stop talking!

In fact, it was nearly impossible to take a photo of anything other than us talking!

After dinner, on Saturday night, we convened at the homestead for caramel birthday cake and champagne.

We ended the evening with wish papers that I brought from Los Angeles. Evidently, this has never been seen on the east coast, and I was roundly mocked for the whole ceremony being "very LA." But we all made wishes and watched them float up and into the ether.

I am home, now, happy to see my family, but I am filled with warmth and love and happiness and gratitude for friendships that have lasted nearly thirty years, for the women who knew me when I was oh, so young, for the beautiful ways that they live, for the beauty of their faces, for the sound of their laughs and their voices filling my heart.

Friday, January 18, 2013

Girls, the real ones, not the ones on television**

I am on a plane, again, when you read this and am heading back to the east coast to see some of my oldest and best friends from, probably, one of the happiest times in my life. Those were the four years I spent at The University of North Carolina at Chapel Hill, and the above women, all ten of them plus one who is mysteriously NOT in that photo, will be together this weekend. We're celebrating fiftieth birthdays -- most of us are turning fifty this year and some -- sadly, some -- have already turned fifty.

Oh, my lord, I'm so excited I can hardly stand it! I know I'm going to cry when I see them, especially those  I haven't seen in nearly 25 years. And I know I'm going to laugh as hard as I've ever laughed over the next three days as we remember our time together and share memories about then and stories from now. I think we look about as cute in 1985 as we could have in the mid-eighties, and I'm certain that everyone will look more beautiful in our half-century year, given the lives we've all lived.

Like I said, I'm so excited that I can hardly stand it.

**And those girls on television? I just don't get what all the hubbub is about. I paid nearly $20 to download the first season and found it boring, superficial and not even remotely interesting. Maybe that's because I'm almost fifty and no longer a girl?

Project Access Learning Collaborative: A challenge

So, I'm feeling bright and chipper, a far cry from my earlier-in-the-week self when I nearly died on the airplane coming home from a business conference. I swear it wasn't hyperbole, either -- I must have had some sort of near-deadly 24-hour virus.


I work part time as a Parent Lead for a group that participates in a collaborative called Project Access. Teams from across the country, funded by grants from the federal government, participate in unique projects to improve the access to and quality of healthcare for children with special healthcare needs. Project Access works on quality improvement for children with epilepsy and their families, and these teams meet three times over the course of the grant, all together, to identify and work on strategies to not only improve care for children and youth with epilepsy, but also to foster the spread and sustainability of their efforts beyond the learning collaboratives as health care reform evolves. Each team is required to have parent and youth participants who are equal and integral partners, and my job is to help ensure that the parent and family voices are heard (I also do a fair amount of talking myself, as you well know!).

Here's where YOU come in.

Do you remember the astounding Spice Island Queen, the medical student who asked those of us with children with special needs for OUR OPINIONS? The post was titled Blog Call, and the response to this wonderful doctor's request for our help in guiding her as she continued her residency in Pediatric Neurology was enormous. If you didn't check back and read the comments that poured in after that post, please do -- they're all quite moving and very powerful. I knew that it was going to have to be my presentation at the collaborative meeting, so I asked my friend Cara's thirteen year old daughter to help me make a Power Point out of it and a subsequent conversation that I had with the Spice Island Queen -- a true collaboration. I think I can honestly say that my presentation, and the Parent Panel that came afterward, made up of several of the terrific parents on the teams present with our wonderful leader, Christy, was the hit of the two day brainstorm. If I knew how to post a Power Point slide show, I would, but I don't, so I won't.

But enough self-congratulation. I also want to highlight parts of the conference that drew my attention, in particular, and ask YOU, once again to help in our spread and sustainability efforts. If you find these interesting (and I know many of you will), please check out the links and send them to others in your circles.

Next week, I'll post the first of a short series of highlights of the conference and the work of the teams.

Carry on, Readers, with your own work! I have some exciting news that I'm posting later today!

Thursday, January 17, 2013

Sophie and her magic wand

Do you know how hard it is to find a toy or something of interest for Sophie, other than trees and the beach? This magic wand vibrates, sparkles and makes pretty sounds and cost me $12.99.

It's the little things, ya'll, the very little things.

The Big O's I Have a Dream Speech

Yosemite, 2012

He's achingly sweet and scythe-sharp and gets from one to the other with breath-taking speed. He was assigned an I Have a Dream speech as part of the celebration of King's life, and while there was a whole lot of grumbling and agony, this is what came out (I should add, here, for new readers, that Oliver despises school and is moderately dyslexic, so he has to work very, very hard, and even then, feeling successful is very elusive):

I Have a Dream

I have a dream never to come back to school. I have a dream never to do my math homework again. I have a dream never to write any DBQ or mini-Q again. I have a dream never to open my orange science book. I have a dream never to fill out my P.E. log.

But I know that this dream will probably not come true.

I have a dream instead to wake up and build a big farm with animals and a river going through it for kids with disabilities and kids that are in wheelchairs and kids that need help. I have a dream that I’ll be the director of this farm so that everything runs smoothly and only kind, thoughtful and hard-working people will work for me at this farm.

And I know this dream will come true.

Wednesday, January 16, 2013

A post about hallways and home

I'm still really proud of the photo that I took at the Ugly Hotel I stayed in on my business trip to D.C. this week:

I'm just wondering what they were thinking when they decorated? Your comments in response to my The Shining reference were hilarious. I think my favorite was about the identical twins. That really WAS the most frightening movie ever, although one of my favorite film-makers, the guy who made Pan's Labyrinth, has a new movie coming out called MaMa that looks even more terrifying than The Shining. I saw the trailer for it not too long ago with my friend D, and we both nearly jumped out of our skins. I will NOT go see it. In any case, Oliver lay down all his Kid Time magazines in our hallway this afternoon and spent an inordinate amount of time using his iPod Touch panoramic camera to take a photo. The photo didn't come out nearly as well as my simple photo of our hallway, but I promised him that I'd show you his "TimeLine." Here it is, and I'm feeling a bit better which means I probably only had a small virus and not the dreaded flu OR the Chinese remedy I took this morning did its work:

I sure am grateful to be home and looking down this hallway, feeling better already.

Hitting the ground, staggering

Gustave Leonard de Jonghe

At some point on the plane ride home last night, I felt like I was dying. I'm actually not exaggerating, although I'm prone to drama. I had been feeling exhausted all day and attributed it to too little sleep and jet lag, two days indoors, the relentless gray skies of D.C., but around hour three of my flight, I felt that tingly feeling all over my body -- not a good tingling but a kind of warning that you're getting sick or you're already sick. I pushed it off for a bit, denied it but it kept coming and I nearly whimpered when I stood up to go to the bathroom. Halfway down the aisle, I stopped and turned around to go back to my seat because I knew I was going to faint. I made it to my seat and closed my eyes for the next few hours, feeling miserable and like I was going to die and I didn't care.

So, I'm home sweet home and have, perhaps, acquired the flu, but maybe only a mild version as I feel slightly better this morning and will, hopefully, live. I'm crawling into bed and staying there. I miss writing on my blog and I miss reading and commenting on yours. Hopefully, I'll be able to tell you about my trip and the great work being done for children with epilepsy and their families, but it's not going to be today.

Tuesday, January 15, 2013

I don't know whether it's jet lag compounded by too little sleep the last two nights or the two days spent under interior lights or Seasonal Affective Disorder triggered by the leaden skies, but I'm California dreaming and will wake up in six or so hours, there.

Monday, January 14, 2013

Inside all day, even hallways are tricky


Still life break with suitcase and hotel parking lot view

My presentation went well, I think, but it's the voices and stories of the other parents that compel me to keep at it. I know there are readers out there that have stories to tell, and I urge you to do so. The healthcare of our children with epilepsy and our families will improve, however incrementally, as long as we keep talking.

Sunday, January 13, 2013

So, in case you're wondering,  the government is downsizing, budgets have been cut, and the times I attended conferences during the Bush administration -- ahem -- I stayed in far nicer accomodations than the outlier hotel I'm in right now. Despite shrinking funds, though, the work goes on, and we'll continue to put our heads together and collaborate on how to improve the lives of children with epilepsy and their families.
I won't be able to blog much until later in the week, but my presentation on Monday uses that wonderful exchange we had with the young doctor seeking a residency in pediatric neurology a couple of months ago -- if I could figure out how to link to it on my phone, I'd do it, but the title of the post is "Blog Call" -- you can search for it if you're so inclined!
Here's the sad, little coffee maker in my bathroom, and when I flushed the toilet tonight, the color of the water was an orange pink sunset. I knew it wasn't from me, so when I notified the front desk, the manager said he had no idea why and that perhaps the water was rusty in the tank. Bless his heart.
I'm just telling you these things so that you don't think everyone working for the government is living high on the proverbial hog.

Close-up blow-out

So, when you read this I will be on a plane, heading to the other coast. I'm making a presentation on Monday morning for My Job. I got a haircut yesterday from a guy who's no bigger than my right thigh. He might have been about seven years old, too. He showed me a photo of his family -- a beautiful Filipino one -- and he pointed out his mama and told me that he'd made her beautiful. She was beautiful and about as big as my left thigh. She was probably about as old as me, too. When I get my hair cut, I steal glances in the mirror every now and then and feel nearly horrified. There's something about the wet hair slicked back, the creases by my nose and the chin, oh, the chin! I can't look away fast enough, and I might even hum as I  do. I can't even shift my head to make the chin disappear because I might mess him up, and I imagine what would happen if I just stuck my tongue out at myself. The no bigger than my right thigh hairdresser asked me whether I wanted my hair blown out, and I said, OK, sure. I felt different when I saw what he'd done -- I'm not a blow-out kind of woman -- and when the boys and The Husband saw me, they thought it looked good. I swear Sophie looked at me differently, but I can't be sure. A few people that I saw at Oliver's basketball game and Henry's lacrosse game exclaimed that I looked glamorous, that they loved my hair, what had I done, where was I going? Earlier, when I had asked the hairdresser what type blow-dryer I should buy as I don't own one and generally go au naturel, he told me that it wasn't the blow-dryer but the technique that mattered, which basically means this is the last time my hair will look like this because I can't be bothered to do what it takes, at least until I go see him next time. I thought ya'll should see it before I go back au naturel and let go, let God, let myself go.

Saturday, January 12, 2013

Saturday Night West Coast RePost, #2

In case you weren't here last week. I inaugurated a tradition of posting something from the old blog archives every Saturday night. Since I posted the following last year, I came upon this photo of myself (above) in the described bedroom. I was actually only ten or eleven in this photo, apparently still wearing Danskins and not yet a teenager, but the canopies had come off the bed, and the decor coming was only a twinkle in my eye.

Teenage Bedrooms

Mine had green and white shag carpeting and two single beds, canopied, with green and white polka-dotted bedspreads. I hid racy books under the mattress that I found lying in my parents' room or den: copies of Jaws by Peter Benchley, books by Harold Robbins andLooking for Mr. Goodbar. I had a record player/stereo with a smoky plastic cover that sat on a low chest in the bay window (one of the perks of being the oldest of three daughters was getting the room with the bay), and I'd lie on the rug and play music for hours, The Carpenters and John Denver, the Beach Boys and the Mamas and the Papas -- later the Beatles and Van Morrison and Boston and Fleetwood Mac. I'd lie on my back with those huge squishy black headphones on.

Oh, the seventies.

I was powerfully awkward, a bookworm behind glasses, sweet and smoldering all at once. The photo above is around sixth grade, so I was on the edge of being a teenager, still confident, for the most part.  I think that's a Holly Hobbie necklace, and I must have taken off my aviator framed glasses for the picture and endured the giant blur.

On one wall was a giant cork bulletin board, filled with photos and awards, swimming ribbons and magazine covers from Teen and Seventeen. On the back of my door was a life-size poster of Clark Gable. Weird, right?I think it had something to do with living in Atlanta and being enamored of Gone with the Wind for a time. I had my own bathroom then which was also carpeted in shag. I had a bookshelf in the bathroom, and on top of that resided my owl collection. Over the bookshelf and all those owls, I hung a circular hook rug that I'd hooked myself -- a large owl. It was green and orange and spectacularly ugly. I wish I still had it -- I could probably find something similar, though, in Anthropology. On the bathroom sink lay an array of big, fat Bonne Bell Lipsmackers, a Clairol hot roller set, my rouge (that's what we called it, then) and mascara, Love's Baby Soft and Jean Nate.

I was reminded of all of this when I stumbled upon this website:

What did your teenage bedroom look like?

Friday, January 11, 2013

Coffee Klatch

Oliver, Noah and I sat at a little table in the coffee shop, sipping our drinks and eating treats. We were waiting for Henry to get out of his school meeting. I used the opportunity to slyly inquire about the goings on at the middle school -- you know -- smoke out who has what boyfriend or girlfriend, who's in trouble, etc. I heard about a young "couple" who were "dating," and asked, "Who?" Oliver and Noah exchanged smiles and started laughing, and for a split second I thought it was going to be about Henry, but then they named another boy and another girl, both of whom I don't know.

Oliver: What that girl and her boyfriend do is so gross.

Me: What do they do?

Oliver: Ugh. It's just so gross. I don't even want to tell you.

Me: At your school? Come on! Tell me!

Oliver: NO! I can't! It's too gross!

Me: I think I can handle it, Oliver. Tell me.

Oliver: Give it up, Mom. You're past that. You're too old. You don't get it. You're soooooooo over all of that. You need to give it up.

For a split second I felt indignant and defensive, and then I realized that the image of ancient crone who has no idea of what's going on is a proper charade in these times. I smiled into the sunset and tried to figure out in my head just about when I realized that my parents were people. Good Lord, it took a while.

Reader, do you let your tweens and teens think you have no idea what's going on?


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