Gratitude

This is a scan of a card that I opened yesterday, before I went to bed. It was placed on the mantel during yesterday's party and I forgot about it until later that night. When I opened it, I found lots and lots of money with a note that said something very clever about what the money was for: care-giving cash for Sophie and for me.

This overwhelming gift was from six of my dearest, most special friends. I'm not sure how to honor them as they have honored me, except by expressing my gratitude. I'm grateful to Johanna for her rocking sense of humor and ability to cheer me up with her exclamations, for her daily morning phone calls, the kind that I just can't get enough of -- hours tick by as we talk about everything under the sun every single day. I'm grateful to Cara who befriended me and Sophie on instinct one day many years ago, whose gentle spirit and near-mystical relationship to Sophie is a source of great comfort and relief to me. I'm grateful to Diana for her steadfast cheer and friendship, for her soft, mothering ways. I'm grateful to Dorie for her no-nonsense practicality, for her forthright opinions and soft, soft heart. I'm grateful to Janet for her powerful advocacy for me and for Sophie, for living around the corner and tolerating the constant comings and goings of my boys, for her honesty and tolerance and curiosity to know everything about the world of disability. I'm grateful for Shannon for her irrepressible mirth, for her intellectual stimulation, for her gentle laugh and strong, strong support, always.

I am so blessed to know these women and can only hope and pray that I might reciprocate what they've given me, not just yesterday, in celebration, but always.

Thank you, Ladies!

Sophie's 15th Birthday - Part 2

Every year we invite our friends and Sophie's over to celebrate her birthday and life, in general. We missed last year, so this year we went all out. I like the party to be not only an expression of love for Sophie's life with us but also a gesture of gratitude toward my friends -- the women and men who cry with me, laugh with me and whose lives I share as well.

Sophie and Mirtha, woman extraordinaire.

The amazing mermaid cake was made by my dear friend, Laura from Piece of Cake.  It was absolutely gorgeous -- vanilla buttercream and vanilla cake -- incredibly delicious, too. I'd like to say that I taught everything I know about pastry and cake baking to Laura, but that would be a lie. She far surpasses anything I might have done or could do now. And that's why I didn't bake the cake.

Can you guess what we ALL wished for?

Opening presents --

Lots of them...

Feeling Beautiful

We're running around like chickens with their heads cut off because today is the day of Sophie's birthday party! You know I'm going to post all kinds of photos soon, but until then I'll let you eavesdrop on this conversation I had with Oliver on the way to pick up balloons.

Me (glancing into rear-view mirror at my grumpy face): UGH! I look terrible.

Oliver: Why?

Me: I guess I'm a little stressed out about the party.

Oliver: I think you look beautiful and sokissifitted. How do you say that word?


(I think he meant sophisticated, but I prefer sokissifitted. And then he said What does sokissifitted mean, anyway?

Caregivers Unite

If you are the caregiver of a child with special needs, please think about completing a short survey. You have a chance to win a Target gift card for your efforts, in addition to participating in something that could potentially help those who are caregivers.

Researchers at Claremont Graduate University and Harvey Mudd College are investigating the well being and support-seeking of caregivers of children with special needs, of all ages and types. They are trying to learn more about the nature of caregiving tasks and the impact of those tasks on well-being. The goal is to bring about an understanding of the joys and challenges that come with raising special needs children and ultimately to help caregivers have the most positive experiences possible.

Go HERE.

Where I Spent Six Hours

8:00 AM: The Nationals vs. The Rockies
4:30 PM: The Red Sox vs. The Mariners

It's a good thing I had this sky to look at during hour number six:

Unbound: A True Story of War, Love and Survival

Dean and Jessica King are two of my oldest friends from college days in North Carolina. Dean is a writer and has published a number of non-fiction books to much acclaim. He and Jessica recently came to Los Angeles to promote his latest book, Unbound, which is coming out on March 24th. Last night, I attended a reading and presentation at the Pacific Asia Museum in Pasadena. The story tells of the amazing journey of thirty women who traveled as soldiers with Mao's army on The Long March. The Red Army covered more than four thousand brutal miles on foot, battling warlords and facing extreme deprivation. Babies were born and newborns were left on the trail. There were more than 80,000 men on the journey and tens of thousands died. All thirty women lived, though, and it is their story that Dean has chosen to tell, avoiding, as he says, the polemics of communism and capitalism to tell a story of great courage and humanity.

I look forward to reading this fascinating book and hope that you all might, too. Click here for Dean's website.

Jessica and Dean

Epileptic by David B.

****see below for text at the top of the panel

I ordinarily don't read graphic novels because I'm not a visual-type person. I like words, and pictures confuse me. I don't even listen to recordings of books, except for poetry, because I just can't pay attention. I've had the book Epileptic by David B. for many years, but it has always sort of horrified me. David B. is a famous European comic artist who grew up with an epileptic brother. The book is a memoir of that childhood, an account of David's and his sister's coping with the diagnosis of epilepsy that his brother received at age eight. He coped with the horror of the epilepsy by drawing elaborate battle scenes. Their mother evidently dragged their entire family to alternative healers as well as many traditional doctors in an endless pursuit to help her son. Her son only got worse, and the book is upsetting for that alone. When I first picked it up, I happened upon a picture of the mother and it upset me so much that I put it down again. She looked like a raving lunatic monster, a monster whose face I myself probably take on at periods. While this family was very close and deeply loved one another, it was more than upsetting to me to see a pictorial representation of what these children saw when they looked at their mother. I just couldn't read it and put it up on the shelf, until today.

If you remember, I posted recently about my son Oliver's drawings of elaborate battle scenes, drawings that his teacher had determined to be "violent" but that I think are rather brilliant and deeply imaginative. When I pulled this book down off the shelf, having forgotten about it, I was struck by the similarities. They make me nervous but perhaps as I read the book, I might gain some insight into what Sophie's brothers go through, living in a family that deals with this terrible disease. The effects of having a sister with such a stressful disorder are well-known to me and I do believe that I've done "the right things," ensuring that they get attention and don't feel responsible for their sister's seizures and difficulties. I'm also very sensitive to them feeling their own emotions and not feeling responsible for mine -- I have always been open with feelings of grief but have assured them that we (The Husband and I) are taking care of Sophie and that it's all right to express anger or sorrow or other difficult emotions. And I think, for the most part, that they have not just endured but thrived in a less-than-orthodox family situation. I do wonder, though, about their interior lives, knowing full well that the impact of their sister is an immense one. I look forward to really reading this book with the awareness that it is someone else's experience.

*** This disease would eventually make off with all of us. I was sure of it.

A Story

I didn't mention it earlier, but I took Sophie last week to another appointment with The New Neurologist. This neurologist sees adults and her specialty is women and epilepsy. We landed up spending at least an hour and a half with this doctor which could either be a reflection of the fact that she is awesome or that adult neurologists have more time to spend with their patients than pediatric neurologists. In any case, she affirmed/confirmed my feelings that Sophie's seizures, right now, are often the manifestation of stress caused by hormones -- the terrible ups and downs that all young women face as their bodies navigate puberty. I've been talking about this for what seems like years and I haven't had much response until now (and that's another post entirely -- the unique differences of women and disease and the often terrifying lack of studies regarding those differences). At one point, our pediatrician was willing to put Sophie on birth control, and I filled a prescription but put it into the medicine cabinet, chicken to put another chemical substance into her body (and we were actually trying the new drug Banzel at that time, anyway).

Did you know that the treatment of seizures with drugs is often no better than a crap shoot?

We're definitely losers in that area.

Anyway, back to the New Neurologist. She prescribed a certain type of birth control and wrote the prescription, of course, as a hormonal treatment for seizures. She indicated that Sophie would need a continuous supply. We wrapped our long conversation up and I left feeling heartened, feeling that new eyes and a new brain with a fresh look might help Sophie.

I dropped the prescription off at Rite-Aid in my neighborhood, a drugstore that I must say I have to be vigilant about because they make mistakes all the time. They don't make life-threatening ones, at least not yet, but on more than one occasion they've messed up our prescription and I've had to call them on it. But I digress. Two days later, I went back to pick up the birth control.

That was yesterday, Sophie's birthday, and who doesn't want to fill and pick up a prescription for birth control on one's daughter's fifteenth birthday? 

In lieu of belaboring my encounter with the pharmacist, though, I think I'll just make this a play, a two-act play of absurd proportions.

ACT I

The Lady (me): Hi. I'm here to pick up my daughter's prescription. The Lady gives the name of her daughter and the woman behind the counter turns around and begins riffling through the plastic bags hanging on a closet-like rack. She finds the prescription, looks at it and motions to me to walk down the counter to a semi-private cubicle.


The Pharmacist (in a whisper-like word): Your insurance doesn't cover birth control.

The Lady (her heart begins to pound because she suffers from insurance PTSD): Um. As you can see on the prescription this isn't being filled as birth control but as a treatment for my daughter's seizures.

The Pharmacist: I'm sorry but you'll have to speak with your insurance company. If you want to take this as is it will cost you $75.

The Lady: What? $75? For a three-week supply? The neurologist said that she needs a three-month continuous supply. Despite her status of being an insurance snafu/fuck-up veteran, tears are pricking her eyes. She can't believe that this is what she's doing on her daughter's fifteenth birthday. 


Chorus: THE IRONY! THE IRONY!


The Lady walks out of the pharmacy shaking, not because it's such a big deal, actually, but because she's been dealing with this sort of crap for way too long and she's feeling really, really sorry for herself. She had intended to go run pleasurable errands but instead drove home to call said insurance company.


Act II

The Lady sits at her kitchen table with the phone standing next to her on speaker. She is on hold and the tinny sounds of "Mandy" come out of the speaker.


Oh, Mandy, you came and you gave without taking.
I need you toda....


Voice: Hello. How can I help you today.

The Lady: I need you to tell me why the prescription the doctor ordered for my daughter is not being covered. The next couple of minutes are taken up by the sound of a computer, clicking. The Lady answers all the questions asked with a rising sense of hysteria. She is especially stuck on the fact that it's her daughter's birthday and when she is asked by The Voice what the patient's birthdate is, The Voice doesn't wish her happy birthday.


Chorus: THE IRONY! THE IRONY!





Voice: Well, it says here in your policy that birth control is not covered.

The Lady: The doctor specifically prescribed this as a hormone treatment for seizures. That's why the prescription is written for a continuous supply.

Voice: I understand your frustration but the policy doesn't cover birth control. You'll have to get your doctor to contact us with a letter of medical necessity. May I place you on hold?

The sounds of "Mandy" continue to trickle out, but the Lady is sitting in her suburban kitchen and something appears to have snapped within her. She is staring at the small Buddha statue that sits in front of the Once in a Blue Moon picture frame on the kitchen windowsill. She is considering standing on top of the kitchen island and smashing the telephone into bits. She thinks, too, of organizing some sort of posse. She has thought about it before but the Chorus is drowning her out.


Chorus: THE IRONY! THE IRONY!


If you've stayed with me through this long and boring two-act absurdist, post-modern comedic tragedy, you might consider joining my posse. Leave me a comment. And if this blog is being monitored through Homeland Security, no worries (the irony, the irony). Honestly.

Birthday Party #1 - The Family

The Husband left The Mistress and brought tomato soup and grilled cheese sandwiches home for Sophie's birthday celebration. I bought cupcakes that Oliver picked out from a local bakery (think HUGE, think GROTESQUE and don't think BADLY that I, a former pastry chef did NOT make my daughter's birthday cupcakes). We all close our eyes and make wishes -- don't you wonder what we wish for?

Oliver was concerned that we insisted on cutting the cupcakes in half. 

Sophie got a beautiful hand-knit scarf from Cousin Michelle in her favorite color.

She also got a lovely white dress and shoes to wear to her BIG party on Sunday.

I forget what these little wooden Asian dolls are called -- Momji, maybe? -- but this one is an addition to her growing collection. I love them.

We convened in Sophie's room and listened to a stirring rendition of the Beatles' Today is Your Birthday from our new guitarist, Glamour Boy Henry

Happy Birthday Sophie

What does one write on this day? Fifteen years of staring into the dark pools of her eyes, wondering what she is thinking, what she sees and knowing that she very possibly knows all. Tracing the thin scar that lies one inch above her right eyebrow, the mark of a fall, long ago when the pool of blood under her head made me draw in my breath and out to her. Tracing the thin ridge of her nose, the faint freckles, the delicate flutter of her breath. The full beautiful lips that form no words but curve gently, rarely, in a smile. The soft, curly hair and tiny rounded shoulders, the downy hair on the nape of her neck, the straight back and gentle, graceful body. Her hands are like birds, long slender fingers untouched by labor or use, tapered like some sort of ethereal musician. What does one write on this day when she is fifteen years old? I love birthdays, my own included, but especially those of my sweet children. For Sophie, the birthday is something different, something more ephemeral, something to be seized, to mark, to be grateful for, another year, another year, another year.

Last week during a meditation I saw a mermaid swim before my eyes, undulating by me, her tail the greens and blues of legend, her hair a floating mass of curls but I couldn't see her face. I'm not sure how to describe the vision exactly, but I was filled with the immediacy of Sophie, filled with knowing that she had swum into my life, swum from my body and was on her way. I realized in the moment that she swam by, from the corner of my eye that I was wasting my time in sorrow and that there was only joy in her.

Happy Birthday, Sophie-girl!

Redemption

After last night's crock-pot disaster and subsequent shameful wasting of food, I pulled out all the stops today for LUNCH, and made these two pizzas. The one on the left is butternut squash, red onion, fresh thyme, pine nuts and grated cheddar cheese. The one on the right is sauteed mushrooms, fresh tomato, salami and mozzarella cheese. Both were finished and none was wasted.

I hate crock-pots

It rained almost all day yesterday, and I had two packages of defrosted chicken in the fridge that needed to be cooked. I also had three children with various schedules and no babysitter for Sophie. I knelt in the kitchen and pulled the dusty, old crock-pot out from the back of a cabinet. I had to remove stacks of newspapers that I "save," one of Federico Fellini's obituary, one from when Clinton and Gore won the election, one from the day after 9/11 and a few of Obama's victory last year. They're old and crumbly, but I love them and God forbid I should actually get the online versions. But I digress... I pulled the crockpot out and began to chop some onions, carrots and shallots and garlic for what was called "Old Fashioned Chicken and Noodles." I placed the chicken pieces over the vegetables in the pot, poured chicken stock over the contents, put the lid on and turned the thing on.

Nine hours later...

I boiled some farfalle and threw that in there with the chicken stew, some herbs and salt and pepper.

It looked terrible and I don't know why I'm using this as my Sunday post. Maybe because I threw the whole thing away, literally pushed it down the garbage disposal and ground it up, feeling sick to my stomach at the waste.

We ordered mexican food from the local mom and pop, tacos and quesadillas, guacamole and chips. I drank a Blue Moon with an orange slice, as I am wont these days.

I'm throwing the crock-pot away today because I've never liked anything that's come out of it.

Tomorrow is Sophie's birthday and I'm working on something that will hopefully be a bit more enlightening than this absolve my guilt at wasting good food post.

Listening to this

Little Fire (Feat. Emmylou Har...

Pretend I'm the Sign