Monday, February 28, 2011

Breakthrough


Confession: I haven't been to the doctor (other than my dear Dr. Jin and the yearly lady stuff) for over three years.

Confession: The reason why is that I don't want to get on a scale. I also don't want to have blood-work done and find out that "my numbers" are bad. I don't want to pay an ungodly amount of money to be told that I'm really fine and just need to lose some weight. I don't want to find out that I'm not fine.

Realization: These have been and continue to be really poor reasons not to go to the doctor. The doctor won't think it's a moral failing when she notes my weight. I'm not doing myself any favors, as they say, by not going. I'm an idiot not to go.

Breakthrough: I made an appointment to see the doctor for a physical in mid-March.

Afterthought: My doctor is a naturopath who uses modern, leech-free methods for my health and well-being. Other than getting on a scale, it won't be so bad.

Addendum to last night's Oscar post

The word of the day today was just perfect. Here it is:

SITZFLEISCH

It means "the ability to sit through or endure something boring" AND "the ability to endure or persist in a task." As in:

I had great Sitzfleisch last night watching the Oscar Ceremony.

and

Sitzfleisch will be required this afternoon when I pick up my sons from school and let them know all electronic gadgets, including Wii, iPod Touch, iPad and PlayStation are off-limits until further notice.

There's a new sheriff in town, as they say.

Policewoman, suffragette, 1908

Sunday, February 27, 2011

Oscar, LA-Style



Wasn't that just about the weakest, most lame Oscar ceremony ever?

Here in La-La Land, we hear the helicopters rounding up over the hills all afternoon. The Husband nearly always has a party to work (he used to be Wolfgang Puck's Executive Chef for catering and did the Governor's Ball every year!), so I walked around the corner to our neighbor's house to watch the shindig. Because it's mid-afternoon, here, when it all starts, the kids come, too. We fill out those forms and have a contest to see who picks the most winners. We eat trashy food and catcall, some years more than others. It was that kind of year. I just told a good friend that it was either a sign that I was just getting too old or that I'm profoundly depressed, but I didn't care about any of it this year. Not even the gowns. O.K., I did like Cate Blanchett's weird yellow and pink thing. And Javier Bardem looked ghastly in white but divine in black. And Annette Bening was my favorite -- mainly because of those green drop earrings she had on. I hated The Social Network, so any time they won anything, I got busy feeding Sophie. And while I enjoyed The King's Speech and love Colin Firth like 99% of other women, the movie didn't knock my socks off or anything. Anne Hathaway is darn cute, but she was an AWFUL host, and I just couldn't wrap my brain around the whole world watching it. In a dark moment, I might have muttered that it was just another sign of the decline of the empire, American, that is -- and when the two folks won Best Documentary for The Inside Job, which I'm sure is an excellent one, and they made their clever comment about how none of the bankers that masterminded the spectacular fall of Wall Street two years ago were in jail, yet, and everyone in the star-studded, powers-that-be audience tittered and clapped -- well, that made me squirm in my seat and feel embarrassed.

In fact, the highlight was seeing those cute kids from PS22 sing Somewhere Over the Rainbow because they, at least, still seemed pure and in love with entertainment.

And I still don't know whether it's all because I'm getting old or because I'm profoundly depressed, but I think it's a bit of both.

Blog Gems - Air Your Archives #10

The King and EYE is hosting another fun linky -- Blog Gems -- where those who participate air out an older blog post, look for new readers, re-live something that they've posted of old and get a few new comments. This week's theme is anything Happy, Heart-warming or Funny -- something to warm our host's heart as she sits in the hospital with her little one. You can join the linky by going HERE.

And you can read my happy post HERE.

Saturday, February 26, 2011

Blustery Day

It's blustery today, here in Los Angeles. The kids went to bed last night hoping that perhaps there would be snow when they woke up. I'm not kidding you -- there were rumors that San Francisco would get some and perhaps even a few flakes would fall on the Hollywood Sign.

No snow. A lot of bluster. (and they've spelled Winnie the Pooh wrong here, but for some reason I've been singing this all day) -- god knows why as I'm so not a cutesy video poster type.




Oliver played basketball today as passionately as he plays every sport -- that means a lot of aggression, some tears, some gritting of the teeth, a couple of baskets -- a lot of bluster.


And the world's least crafty mother cooked up the idea that we could spraypaint the boys' bedroom door with chalkboard paint and that it would look really good.


That was a lot of bluster on my part, too.

Just notes

Tibetan blue sky


A couple of days ago, before I was felled by the flu, I participated in a live webinar on contemplative activism.   The Association for Contemplative Mind in Higher Education hosted the webinar, and the speaker was John Makransky, the author of Awakening through Love: Unveiling Your Deepest Goodness. Makransky teaches at the Harvard Divinity School, and the webinar was aimed at those who work in areas of service and social justice. It was designed to offer methods and practices for preventing emotional burnout and 'compassion fatigue,' as well as ways to strengthen your sense of presence in relation to yourself and others. I have practiced mindfulness meditation for years, sometimes more diligently than others, but I am finding that it's really the main reason that I am coping at all with the particular difficulties of my life. Makransky's presentation drew heavily from the principles of Tibetan practices of compassion, and he led us through a couple of meditations in addition to answering questions from the more than 100 online participants.

During one of the meditations, as we were led into a deep relaxation, I saw a blue, blue sky, in my mind, a blue sky that opened up and poured into an open head. I don't know of any other way to describe it.


I also took some notes and have transcribed them here:
  1. compassion practices in Tibet to empower letting go, to inherent capacity, drawing on power of loving compassion to relax more fully
  2. the array of figures in the following drawing help us to draw upon our benefactors -- those people, figures both ancient and modern who embody tremendous love and compassion
  3. the meditator communes with those figures and the mind relaxes so deeply that it settles into a pre-conceptual state in which peace and simplicity is available
  4. an exercise: we took deep breaths and called on our own benefactors, those who have aided us on our journey, those who make us happy, who give us joy. In calling upon our benefactors we reconnect with them and receive their lovingkindness; we merge into one-ness with benefactors and achieve a natural simplicity
At the end of the webinar, I emailed the question I am a mother of a child with significant disabilities. I know the value of meditation for myself, but I am wondering how I can meditate or can I meditate for my child since she cannot?


Dr. Makransky answered by saying that we need to learn to be present ourselves -- to being held in lovingkindness before we can actually meditate for others. We must get out of our own way. 


That's what I'm thinking about today, as I crawl out from under the flu. I'm calling on my benefactors, those beautiful souls upon whom I send lovingkindness and from whom I accept the same.






Friday, February 25, 2011

iPad Mania


I'm still sick, but I wanted to tell you about a pretty fantastic giveaway over at Marissa's Bunny. Marissa is a little girl who suffers from infantile spasms, the same seizure disorder that my Sophie was diagnosed with nearly sixteen years ago. Marissa's father is a terrific advocate for not only his daughter but for all children with seizure disorders and other healthcare issues. His company is going to give away FIVE iPads in a merit-based contest. Read about it here.

Wednesday, February 23, 2011

What are you doing, Oliver?





I'm playing by myself, Mom, he replied, as he ran by, clad in camo pants and jacket, Nerf gun in hand. The helicopter circling overhead and the sirens in the distance, a normal scenario on a weeknight, lent a bit of eerie reality to the scene. But, it still seems incongruous, sometimes, that I'm the mother of boys.

Our lives are Swiss

Mollis, Switzerland, The Husband's home

Our lives are Swiss -
So still - so Cool -
Till some odd afternoon
The Alps neglect their Curtains
And we look further on!


Italy stands the other side!
While like a guard between -
The solemn Alps -
The siren Alps
Forever intervene!


Emily Dickinson
c. 1859


It's strange and true and wonderful how one can open a book of poetry and find something so apt, so perfect, so apropos. I am of Italian descent, The Husband Swiss-German, and I love how Dickinson captures so neatly our union.

Tuesday, February 22, 2011

Shooting on Roller Skates

Shooting on roller skates

Sophie is humming incessantly in her room and I dread going in there to get her up and changed and breakfasted and then onward to five hours of intravenous immunoglobulin infusions. Oliver is hacking in the living room and has just informed me that he's not going to lie down all day because he did yesterday and it made him dizzy. He told me this after insisting that I look down his throat and tell him why every time he swallows he feels something, there's something there and it's stuck there why? Henry, god bless him, is still sleeping and the sky is very blue today, the birds are actually singing and The Husband has already gone to The Mistress. I'm going to do what I have to do, skate along the edge, ready to fire and not jump in.

Monday, February 21, 2011

Drum roll, please

The fantastic Shabby Dress giveaway WINNER is hereby announced with the help of Henry of the beautiful hands and  recently recovered from the flu :





CONGRATULATIONS, SHEILA!
(Sheila is an artist and has the most wonderful blog, Watching the Paint Dry, featuring her art and her adorable little girls. You should check it out -- maybe she'll model the dress when she gets it!)

Man Cold

As Oliver, child number three and my most INTOLERANT of being sick (think EXTREME DRAMA) falls to the flu, this -- and this only -- is bringing me comfort:

Shabby Apple Dress Giveaway Reminder

Don't forget to visit Shabby Apple, leave a comment for me HERE and enter the great-looking dress giveaway! I'll be announcing the winner today at NOON, Pacific Coast time!). If you missed the original post, here's what you could win:



Read more about it HERE.

Sunday, February 20, 2011

I just don't get it



I opened the newspaper last night -- the local section of the Los Angeles Times -- and read this headline:

Man who assaulted 3 disabled women gets 8 years

I'd heard about this horrific case more than a month ago and wondered then why it hadn't gotten very much attention. The convicted man confessed to sexually assaulting three "mentally handicapped" women at an El Monte, California day care center where he worked. He confessed to raping three women who were severely developmentally disabled, one of whom wore diapers. The eight-year sentence was "the product of a controversial plea bargain." The mother of the defendant said that she had gone to authorities the same day her daughter reported the assault to her, but the rapist was not arrested for almost a year -- a period during which he assaulted others. As part of his sentence, the rapist will have to register as a sex offender upon his release.

What the hell? 

I generally don't talk about such things on this blog -- there are many great blogs that I would call "activist" blogs -- those that admirably expound and explain and argue about the nuances of disability and disability rights. There's also the whole emotional aspect of things like this -- those of us who hand our disabled and non-verbal daughters and sons over to aides and teachers and therapists, etc. every day at school do so with what I imagine is about the biggest leap of faith a parent can muster. If we didn't take this leap and let our imaginations run wild, I think we'd keep our children locked up in a room at home. However, most of us have been stymied at least once, if not continually, by callous school officials who condescend to our fears and make lame assertions of how they know best. Here, in Los Angeles, at our local school, I've spent weeks arguing with Sophie's school about a new policy that would rotate the aides riding the bus with Sophie -- a "budget cut" that basically takes away the aide who I know and who knows her and replaces her with virtual strangers. When I objected, the school official basically laughed off my concerns, told me that the person would be "trained" by a school nurse (the same school nurse who works there for three days a week and who I had to educate about seizures when we enrolled) and that I would have "to trust the system." I have many friends and acquaintances that face equal frustration when they attempt to advocate for their children in many different venues, including inclusion and even basic medical care.

You know that expression "helicopter mom" and the whole parenting debate that circles it? Just like the tiger mom controversy, I tend to dismiss these cultural debates as a luxury for the elite, those who parent disabled kids or not.  I might contort my face into a mask of pleasant accessibility when even my friends bring it up, but my eyes are rolling crazily in my thoughts. But in reading about a man who gets only eight years in jail for assaulting three disabled young women, I'm going out on a limb and saying that those of us in the trenches have to damn well know how to fly a helicopter, too.

Saturday, February 19, 2011

Another one bites the dust --

Henry, recovering from the flu, on the tails of Sophie and Oliver

How long does it take to eat one half of a grapefruit

when you're nine years old and love to talk?










Thank you!

illustration by Wolf Erlbruch

All your comments the last few days, your words of support and friendship and love, have meant so much to me. More than you could possibly know.

Thank you.

Friday, February 18, 2011

Movies and Faith

I remember sitting in my air-conditioned apartment one insufferably hot summer in Nashville, Tennessee, the insufferable summer of my divorce. After long hours working as the chef at The Slice of Life Restaurant, I'd stop at the Blockbuster on my corner, pick up a few movies and watch them, back to back during my off hours. I'd say that in addition to the first foreign movies or "films" that I saw at my university student union, I received my film education that summer, largely alone. I remember checking out literally every single movie available in the foreign film section, even the Japanese westerns. Many of those movies remain in my top ten favorite list. Here it is:

1. Wings of Desire
2. 8 1/2
3. The Seventh Seal
4. The English Patient
5. Harold and Maude
6. Breakfast at Tiffany's
7. La Strada
8. Days of Heaven
9. The Graduate
10. Casablanca

There's also The Philadelphia Story, Five Easy Pieces, Lolita, Dr. Strangelove -- well -- I could go on and on and on.

Yesterday, I doodled around on one of my favorite websites and found a list called The Arts and Faith Top 100 Films. The cool thing about the list was that it provided a short clip from each movie and a summary. Many of my favorites were on the list -- you can check it out here. In fact, they even had the clip of my favorite part of Wings of Desire -- the part that I wrote about here, part of a larger article that was published in Spirituality and Health Magazine. 


Thursday, February 17, 2011

Wired


Sophie's brain has had a break of late, a break from the seizures that have plagued her for nearly sixteen years. We don't know if the IVIG is finally taking effect or if the Vimpat, a new drug, is working where eighteen drugs that came before had not or whether the new homeopathic remedy and the attentions of our beloved osteopath, Dr. Frymann have righted her brain into a semblance of calm. I actually shouldn't say calm because she is not calm. She is alert and awake and a bit agitated. She is wired,. Her eyes are large and inquiring; her hands are busy and she wants to put everything in her mouth to chew. She hums constantly and throws herself around, banging her head to the right. I imagine that she is seeking input, pressure, focus. I imagine that her brain, anesthetized, rendered nearly comatose from constant seizures is free and open but buzzing and not in a good way. I imagine that outside stimuli is immense and that she has no way to organize it all. I imagine the neurons as wired as her curly hair. It makes me a bit tired. Today, when her head hit mine as I was feeding her breakfast, tears pricked my eyes and I rebuked her. Tears came more freely then as I felt the transitory nature of things -- my fear that it was going to end soon, this seizure-less respite, my sorrow that I even have this fear; my feeling that I should be crawling on my knees to some sort of shrine in gratitude but I'm not, my worries and anxieties about money and care for her even when she has no seizures, my near-disgust that it's not enough when it is enough.

Wednesday, February 16, 2011

Feeling Shabby

When I scroll down and read my posts of late, I realize with not a little embarrassment that the overall tone is one of negativity, frustration, a bit of moodiness and a lot of sarcasm. I haven't really dwelled, too much, on anything positive, and there's a whole lot of positive going on right now. I want to write about it: I want to tell you all about it, but I'm still too darn superstitious.

I did finally bring Sophie to the pediatrician after three successive nights of outrageously high fevers. I suspected that perhaps she did have a secondary infection and might need antibiotics. Lately, I've been nearly bragging about how none of my children have been on antibiotics -- Sophie not in well over a decade, and the boys literally never. I don't know why I'm so arrogant about this because God knows, it's not like some sort of triumph or competition. In fact, it carries about the same weight as your baby walking early or any of those other milestones that mothers and fathers sometimes like to pull out and take credit for. Anyway, I imagined my statements about antibiotics might have somehow jinxed me and that Sophie would, indeed, get a prescription for one. But, you know what? The pediatrician listened to her lungs, looked into her ears and did an examination, but she decided that Sophie was suffering from the flu and that antibiotics were just not necessary.

And you know what else? I'm just going to be thankful for that. That's all. And when I'm good and ready and not nervous about jinxing everything, I'll tell you all about some other stuff.

In the meantime,  I can express my gratitude to you because I have a wonderful Giveaway! Shabby Apple is an online vintage-inspired boutique, filled with really fabulous women's dresses and little girls' dresses.  They even tell you what dresses fit your body type -- apples, pears, asparagus, pumpkins, string beans -- it looks like they have something for everyone. They've got maternity dresses, too! I am happy to tell you that you can be the not-so-shabby, apple-of-someone's-eye owner of the great-looking Cider dress:




Isn't that cute? Leave a comment here if you want to enter the giveaway. Tell me something funny or tell me something sweet. Tell me something not too shabby and then hop on over to ShabbyApple and check out the website. You should also "friend" Shabby Apple on Facebook and receive some really great discounts and notices of promotions. That link is HERE.

Finally, if you visit the site and just have to have something, right now, right away, Shabby Apple is offering a 10% discount to my readers. Just leave the code amoon10off.


Good luck! Winner will be announced next Monday.

Tuesday, February 15, 2011

Correspondence

One of two pages sent in every correspondence from Anthem

Dear Sir/Madam,

Recently, you were kind enough to send me a letter indicating that you were terribly sorry to have to raise our health insurance premium again, especially given your dedication to providing excellent service to your clients. The increase of 39%, you stated, was due to rising costs and in no way reflected your corporate culture to, again, "provide optimal health benefits to your subscribers." Yesterday, I received a Statement of Benefits Claim from your central offices, probably the thirtieth or so in the last six months. I should stress that each of these Statement of Benefits is NOT for a separate medical claim; many are doubles and some are erroneous. However, each of these statements of benefits is accompanied by two other pieces of paper, once of which I've included here and a blank envelope. The two pieces of paper are not personalized but are, rather, standard Notice of Language Assistance papers. As you might know by now, since we have been your clients for nearly five years (and for ten years before that under a different plan), we need only get information from you in English, the primary language spoken in our home. While I appreciate your efforts in cultural competency (I have actually done a bit of work in that area myself and it's GRAND to see how it's being taken up by private enterprise), I imagine you could stop sending me that extra paper and the envelope (I'm not certain what its use is) and thereby curtail some cost. It also might lend some credence to your claim that you are constantly raising premiums due to rising costs, thereby improving our relationship and perhaps making it less antagonistic. I'm not sure how many persons it takes to gather all this paperwork, collate it, stuff it into envelopes, stamp and mail it or whether this is all done by machine, but given the other inefficiencies of your organization, I imagine you might save a bit of cash if you eliminated some of this paper. Perhaps you could use one of your sophisticated computer programmers to tag a client with his/her language and then send the necessary information in that language only, saving the two pages of Notice of Language Assistance for your new clients (those lucky enough to be signing up now for your excellent service).

In the meantime, I am making quite a stack of recycled white paper on which to print out my memoir, some of which, I'm sure, will pertain to our relationship over these many years.

Respectfully,
Elizabeth Aquino

Monday, February 14, 2011

Heartless on Heart Day

A Great Depression Soup Line


Are you as confused as I am when you hear about Republican efforts to privatize Social Security? Periodically, I get those little notices in the mail that tell me how much money I will receive when I retire, based on how much I've earned so far. When I look at the amount, I sigh and file the paper away, hoping that one day I'll be able to work more -- which brings me to Sophie, the reason, however worthy, that I am unable to make a more solid contribution to our family's livelihood. Many of us who care for our children with special healthcare needs can't properly enter the workforce and use our education and skills because of the difficulties of finding proper childcare, the expense and quality of that care and/or the instability of our children's medical situations. We navigate all the complex systems of care and file papers and negotiate services only to eventually face catastrophic cuts in these services in the name of "balanced budgets" or, worse, "freedom from government," as the hated (and, yes, I do hate them and know that I've lost readers here because of my stated strong feelings against tea partiers) Tea Party and its supporters call it. As a disabled person, Sophie will qualify for Social Security benefits at eighteen. She currently receives in-home supportive services that enable her to be cared for at home as opposed to an institution, like she might have been many years before we, as a country were enlightened by the notion that it is civilized to care for our most vulnerable citizens, the elderly, the sick, the disabled.

Many of these social safety nets are being decimated, their necessity and humanity all but stifled under rhetoric, fear and political bullshit. And while I understand there is much graft, corruption and misuse of government funds, I firmly believe we can root that out without cutting these programs. Bernie Sanders, the great independent senator from Vermont wrote a beautiful, informative op-Ed piece in today's Los Angeles Times about Social Security that I hope you'll take the time to read, even if you are a tea partier.

LOVE





St. Valentine is, in some historical texts, noted as the Patron Saint of Epilepsy. Here he is, standing over an epileptic child, a sculpture dating from the 1400's in Ulm Cathedral in Germany. Evidently the German word for "fall" could perhaps be associated with the name Valentine, but there is also some indication that Valentine "healed" a person of epilepsy and thus was canonized.


When I researched this a bit on the internet, I found a fascinating medical study of medieval artistic representations of saints and disease, particularly epilepsy. The article stated that the depictions of epilepsy by artists of this period were actually quite comprehensive with real "knowledge" of the various types of seizures and what they looked like. However, I also learned that most of the "victims" were either dressed in rags of a certain color that were directed against demons or meant to protect the victim from the demons inside of him OR were dressed in rags in distinct opposition to the "Saint" in all his Christian "glory," indicative of the appalling ignorance of the medical condition and, sadly, why the disease is still marked by incredible stigma today. Black clothing, like on the child at left, refers to debt, punishment and penance -- the sick person might have burdened himself with debt and has been punished with the "falling disease" as a penance. If a child wears black, his parents are guilty in some way.


What do I have to say about that? Well, let's say the whole Catholic thing has always troubled me a bit and I might just have to discard the notion of celebrating St. Valentine as the Patron Saint of Epilepsy!



Sunday, February 13, 2011

Cool Store Window and Aging, Part 567

Silverlake, Los Angeles

I was walking down the street with Oliver today, listening to his constant stream of chatter, on the way back from the nearby stationary and gift store where we were looking for valentines. In the same instant that I inwardly noticed how sore my feet felt, even though I was wearing The Clogs, I tripped on some minuscule bit of sidewalk that jutted up, and I went down spectacularly, landing on my hands and knees. I almost NEVER fall, so I'm going to add it to the list of new experiences due to aging. After showing much compassion and helping me up, Oliver demonstrated what I looked like as I fell, and it wasn't pretty, to say the least. What is it about falling that is so damn ridiculous that it brings tears to one's eyes?  Oliver also told me that now you know how much it hurts when I fall, Mom, and I said, No, it probably hurts a whole lot more because I'm big and old, Oliver, and he nodded and agreed to carry my purse home as I hobbled the rest of the way.

Graffiti


art or defacement?

Saturday, February 12, 2011

Saturday Afternoon Sunlight and Sophie



Contrariness

The Invalid -- Carl Larsson (1853-1919)


Sophie began shivering uncontrollably last night at dinner, her fingertips slightly blue. She had been sick earlier in the week but hadn't run a fever in two days, a residual congestion in her chest the only sign that she had been sick. I felt a rising panic inside as I bundled her in blankets and draped myself around her, wondering if the Vimpat was causing these strange symptoms and because no one in our house gets sick enough to warrant owning a thermometer, (how dumb is that?) I had to tell Henry to run to the neighbor's house and borrow one. When I pulled it out from under Sophie's arm and read one hundred and two point seven which meant one hundred and three point seven, I blinked and shook it. It was, literally, the highest temperature I'd seen for Sophie in at least a decade. I gave her Motrin and debated internally whether or not to call the pediatrician. I knew, though, that the pediatrician would just say it was a virus, to watch her fever, push fluids and if it didn't come down she would need to be seen, perhaps, for a secondary bacterial infection.

I didn't call the doctor and instead waited in that agitated and forced calm way that I remember from my children's infancy. Despite the fact that I've witnessed tens of thousands of enormous seizures and true crisis, fever is still something that brings out the irrational in me and it's all I can do to stifle thoughts of meningitis or viruses that attack the heart and kill you in a flash, etc. etc.

Sophie's fever went down and she woke up this morning without one.

And why the title "contrariness?" I've never mentioned it here, but Sophie has the peculiar characteristic of being free from seizures when she is feverish.

Friday, February 11, 2011

Inbox Scrap


Every day I wade through literally hundreds of emails, the vast majority those that I delete before even opening. If I wasn't so attached to my email address, I'd open a new one and start fresh.

Today, I received one that had this in the subject line:

ARE YOU CONSCIOUS?

I didn't open it up, but it did crack me up.
The legislative alert I posted yesterday is so ugly, not just aesthetically but ugly because it makes me feel frantic and hangs over my head like a sword of Damocles.


I drove around in my car all day yesterday on the brink. I woke up with the intention to not be sharp with my children, to make their lunches sweetly and to kiss them sweetly and say I love you as they skipped off to school. What I landed up doing was yelling that I was so tired of picking up the wet towels from last night! and I can't believe you're actually sneaking around with the iPod Touch when I told you not to use it during the week! and a final shout of WHY CAN'T WE HAVE A PEACEFUL MORNING FOR ONCE?  When I dressed Sophie, who had not been to school all week because of the flu, I lamented in front of her that it is so hard to dress you and not get any help (this said as I tried to pull her skinny jeans over her foot which was arched back because she doesn't relax her muscles properly, a bit of cerebral palsy). She just stared at me with her big, dark pools of eyes and I hustled her out of the house. On the way to her school, her aide texted me that she was sick and maybe I didn't want to bring Sophie to school and that little text, that I read at a red light halfway to the school, my salvation, drove me to tears. Bitter, angry tears of self-pity. I can't take it anymore, I thought and glanced at myself in the mirror. Bitter and angry, I looked, and it was startling. I took Sophie to school and handed her into the arms of her teacher and learned that due to budget cuts IT WAS A MINIMAL DAY, so I needed to be back at the school by noon which as far as I'm concerned was like preschool hours -- drop them off and turn around and go back. Tomorrow, the teacher added, is also a minimum day and your aide is on furlough.


I hate Los Angeles Unified School District, is what I thought. I entertained the hate, the feeling it gave me and while not entirely unpleasant -- because there is a smugness to rage that is seductive -- I

LET
IT
GO.

I won't bore you with the rest of the day I had yesterday -- the telephone conference calls for my job, my trip to Trader Joe's where I saw a woman, the mother of one of the boys' old classmates, a woman who I haven't seen in ages and whom I barely know, who said to me as I perused the bagged salads, Hello! and when I turned around she said, I knew that beautiful profile! and so strong is my pathetic-ness these days, my vanity, my barely holding it together-ness, that I whimpered a bit to her, WITH TEARS, and thanked her for the compliment. And then I proceeded to blather on, right there in the cheese and produce section about how unmoored I am, how I've plunged into this rut and can't find my way out and how this compliment, these sweet words -- and she finished my sentence:


You'll take them! And she smiled and we laughed and commiserated and then awkwardly broke the intimacy and finished our shopping.




Weirdly enough, I felt happy, then. And when I picked the boys up from school later that day, we stopped and got donuts -- glazed donuts -- and one had a small sprinkling of bacon on it, and who doesn't like a bacon donut? (actually, me -- it was disgusting)

Thursday, February 10, 2011

Alert to all my readers who have children with special healthcare needs


As if we didn't have enough on our plates, I received the following from a colleague and hope that you'll help to take action, inform others about this, blog about it, post it on FB, scream it out your apartment building window, down the farm road on which you live or through the telephone.

Today House Appropriations Committee Chairman Harold Rogers (R-KY) released initial details of a House proposal (available here) to revise the current continuing resolution (CR) that would fund federal government through the rest of the fiscal year.  The proposal includes a $210 million cut to the Title V Maternal & Child Health Block Grant and is expected to be voted on in the House early next week.  It is absolutely imperative that your Members of Congress hear from you today about how devastating this cut would be to the maternal and child health and children with special health care needs programs in your state.

AMCHP urges all members and friends to call your elected officials NOW with the following message:
·       I am calling in strong opposition to the proposed $210 million cut to the Title V MCH Block Grant included in the revised House continuing resolution. $210 million is a 32% cut to an effective, important, and vital program in our state.
·       Cuts this deep will devastate state and local programs serving women, babies, children, and children with special health care needs in our state.
·       This cut is counter-productive because health issues that we don’t prevent or detect early through this program now will ultimately cost us all more later.  For example, the average cost of a premature baby is $58,000 - it makes no sense to cut programs that work to prevent maternal and child health issues like prematurity that will save us money in the future.
·       Please tell (Your Representative’s/Senator’s name) that we should not balance the budget on the backs of babies and our nation’s most vulnerable.
Members of Congress need to hear from you today.  They listen to constituents and it is imperative they know how these cuts will impact mothers and children in their jurisdictions.  Therefore, in accordance with your organization’s advocacy rules, AMCHP urges you to contact your elected officials now.  AMCHP also asks that you share this email with all MCH advocates in your state and urge them to also contact their Members of Congress.

Your efforts to reach Members of Congress will be critical to preventing deep cuts to MCH programs in FY 2011. Please share any  feedback you receive with AMCHP staff about your contacts as this will be helpful as we continue our advocacy efforts  on your behalf.   For more information or to share feedback please contact Joshua Brown (jrbown@amchp.org) or Brent Ewig (bewig@amchp.org) via email or at (202) 775-0436. 

Need helping finding your Representative’s or Senator’s Phone Number?
To find your senators' and representatives' phone numbers, use this searchable online congressional directory or call the U.S. Capitol Switchboard at (202) 224-3121 and ask for your senators' and/or representative's office.  Ask to speak with the aide who handles health issues and leave a voice mail if you cannot reach them directly.   While the urgency of the situation requires immediate phone calls, you may want to follow-up with an email or fax to reiterate your point.  You can find email addresses and fax numbers at www.house.gov andwww.senate.gov.   First priority is to contact members of the House of Representatives as they will vote first, and we also urge you to call your state’s two Senators to share your views with them as well.



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