what day is it?

Day.....what?

Tomorrow we will have been here for 2 weeks.
I am sitting in the waiting room alone while Sophie is having her THIRD procedure. Surgery guided by radiology. 3 incisions. One incision is dangerously close to her sciatic nerve. I am a mess. A stress mess.

Sophie keeps getting sent down to the dungeon - oops - I mean basement - of Cedars. This is where trolls operate the giant sci-fi looking CT scan machines. And other instruments of torture.
She is being VERY brave.

After this third 'procedure'. She will have either 3 or 4 plastic tubes sticking out of her abdomen to drain the infectious mess out of her body.

I am experiencing empathy pains. When her stomach hurts, mine does, too. When she is nauseous, I am, too. When she is so exhausted she doesn't even wake up to have her finger pricked, I am in the same state. As if a big, heavy blanket of sleep has been pulled over me and I can't get out from under it. And the last couple of days, I have watched Sophie's face become thinner than ever, and her eyes look bigger and bigger. I told her that she looks like a baby owl.
Then, today, when I looked into the mirror, I saw that my eyes looked bigger, too. Rimmed with dark circles. Now I look like a mamma owl.

Sophie has requested that I write about the time we went to the piano bar in NYC. So - OF COURSE - I shall. Happier days.

Sophie's Snakes.

May 7, 2011. 11:35 am.

I am sitting next to Sophie's hospital bed watching green slime make it's way out of her stomach via a tube through her nose and down the back of her throat. The tube full of green stomach bile snakes it's way around until it reaches a vacuum tight container that is attached to another tube that goes into the wall. Along with other hallucinations (from the morphine, I suspect) she has been having terrible nightmares about snakes. My poor baby who is terribly afraid of snakes now has one coming out of her body.

I don't think Sophie is a princess anymore. I think she is a super hero. She has been so, so brave. And I wish with all my heart that I could stick that nasty tube down my nose and throat for her. I am now reaching my stress limit.I keep bursting into tears in front of my daughter.So I have asked Val to bring me something to calm my nerves. Wonderful Val. She'll have them here this afternoon. The 'don't freak out' pills.

And I have begged Mieke to come.I need a hug from her like you wouldn't believe.I need an infusion of her strength to face another night of snakes.

From Bad to Worse.

May 7, 2011. I have never seen anyone look as pale as Sophie looks now. She is as white as a ghost. her lips and eyelids tinged purple. She is so weak, but still cries out in pain during her sleep. Her cries are soft and kitten weak.

I am terrified.

it's horrible, the comparisons you start to make in a place like this.Like, it's horrible when Sophie was crying out loud in pain, but then at least she had the energy to do it. The CPs and nurses are getting worse,too.3 times in the last 12 hours no one came at our call at all. Ever. And I needed help. No matter that between our expensive Blue Cross insurance and what will be out of pocket, this will cost a FORTUNE. Apparently, a fortune doesn't buy you much in this country when it comes to health care.

The night we just came through was gory and horrible. So much so, I will spare you the details. But now it's even worse for me - because she looks so, so terrible. So pale and so weak.

Something's got to give.

And Counting

Day 7 of living in the hospital with Sophie. I am living in her nightmare. What should have been a speedy recovery is NOT going well, and my eighties angel is reaching critical mass as far as pain, anxiety, and fear. Sophie has had no less than 8 different IVs in 7 days. This last one is a "pick line" -- the mother of all IVs. She has small veins in her thin little arms. "Bad veins," the IV nurse muttered last night at 2:30 a.m, shaking her head as she poked the needle repeatedly into Sophie's hand, moving it around as she tried to find a vein that wouldn't explode.
I am sitting next to Sophie's bed. A moment ago she was crying out in pain. Her stomach hurts. Her IV hurts. We are waiting for an X-ray (another one) so they can move the painful IV up into her "pick line." (Further up her arm.) She has finally nodded off, and I am grateful for I am reaching critical mass, too. Stress and exhaustion are finally taking their toll on me. Earlier when Sophie asked me to sing to her, I couldn't make it through "Blue Skies" I was overcome with tears. Sophie scolded me. "Mom, you're supposed to be cheering me up!" she said plaintively.
"I'm sorry, I'm sorry. I know. But I can't help it. It's so awful to see you hurt this much," I managed to choke out.

I am losing it.
There are many more days ahead. Poor Sophie. My poor little bear cub. She has been fighting terrible infection. High fevers - she's packed in ice every few hours... Super high heart rate. And pain. As soon as the opiates wear off - terrible pain.

A couple of days ago, the nurses seemed like they were really out to lunch. They kept disappearing, forgetting to give Sophie her pain meds, so that they were being administered anywhere from an hour to three hours late.
I was beginning to think I was going to have to pull a Shirley McClain from "Terms of Endearment." You know -- when she runs out to the nurse's station looking like crap yelling, "My daughter is in pain! Where is the medicine? My daughter's in pain!" and then she basically chases down a stupid nurse until someone gives Debra Winger's character the meds.

They will send Sophie for another CAT scan tomorrow. And then she might have to go under the knife again...

I keep trying to tell myself we are lucky. Lucky to have insurance for her, lucky to be in such a wealthy country, lucky to be in such a nice, clean hospital. But as I watch my daughter scream out in pain or watch her fever spike with her shivering uncontrollably, or hear her beg for water when she can't have any - it all just feels like really bad luck.

Immigration. And Color Codes.

May 4, 2011. It is my baby's 13th birthday today. Or was. August Blue turned into a teenager today. But I was still living at the hospital with Sophie. Her routine appendicitis turned into a nightmare. This is what I wrote the other night when I couldn't sleep for worrying about her.
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It is 3:30 am. I haven't been able to sleep even a minute - even though we are now in a private room up in the OR section and the nice people at Cedars Sinai brought a fold out cot for me.

I am worried. The nurses are worried, too. They keep coming in to fuss with Sophie and check on her. Her heart rate is too high and she has a fever. They have packed her in ice.

Our main nurse is called Suzy. She looks like an African Queen. She is tall and beautiful with very dark skin and what seems like hundreds of tiny braids pulled back from her face into a cascading pony tail from the top of her head. She has a beautiful soft,round accent.So many of the people who work here are first generation immigrants. It makes me think of one of my heroes - Lawrence O'Donnell.He has an interstitial running on MSNBC right now in which he speaks in favor of immigration. A brave thing to do in this country right now.

We are a country of immigrants. My Cuban grandmother came to this country when Castro was coming into power and never looked back. She brought her culture with her. (My mother makes the best Cuban empanadas you have ever tasted. They melt in your mouth!)

My grandmother, Dona Hilda, married a German/Irish professor. The classic American melting pot fairy tale. They bought a cute house,had 4 children, traveled, enjoyed their grandchildren and their big extended family and were in love with each other until the day they died. American,Cuban, Irish and German customs all made their way into my grandparents' house. This was a good, fun thing to grow up around.

On my father's side...it was pretty waspy. White people with black servants. The servants wore uniforms.My grandmother had a cook/maid called Willie the whole time I was growing up. When we were little, we got to stay in the kitchen with her. Watch her make chicken and dumplings or banana pudding. We ate our dinner in there, too. There was a special little table and chairs in the kitchen just for the kids. I was scared of my grandfather, so it was much better to eat in the kitchen with Willie.

She gave us our baths, too. In my grandmother's big, pink bathroom. I LOVED that pink bathroom.(Now I have a pink bathroom of my own) Then she'd wrap us up in Granny's soft, fluffy towels, put us in our PJs, tuck us into the guest bedroom beds, and sing old, Southern songs to us. Spirituals, I guess. 'Old Black Joe' was my favorite.
Then my grandmother would come in and say the Lord's prayer with us. As if Willie was the opening act, and my grandmother was the headliner. She always looked so pretty and smelled like Channel.

The Christmas that someone decided it was ok to give me a sewing machine at the ripe old age of 6 and I sewed my finger, Willie washed me and calmed me in the bathtub that evening. I had to hold my bandaged finger up high while she ran a wash cloth all over my body and talked to take my mind off of it. (I was really traumatized) She started telling me about her funeral - how she wanted it to be. A shiny black car for her son and friends, the biggest, shiniest hearse for her coffin (mother of pearl color - she had picked it out), and everyone wearing black and dressed properly.
"And I want to be in that cemetery over yonder." she said, "The one with the great big shade trees and all the yellow flowers in front as you drive in. That's the one I want. That's where I want to rest."
I burst into tears, of course. I couldn't BEAR the thought of Willie leaving me. She was my second grandmother - well, sometimes she seemed like my first grandmother!
"Now, child!" she clucked as she gathered me in a pink towel, "Ole Willie's not going anywhere for a long time!" she laughed her soft, throaty laugh. "I couldn't leave my babies!"
"You're not old, Willie!" I cried into the towel, "and I don't want you to die!"

Then one day when I was much older (a teenager), my aunt Mary said we had to go visit Willie and bring her some money and some things because she was sick. I was thrilled. I hadn't seen Willie for a couple of years. She'd retired from my grandmother's house when she was finally too old and too blind. But she still made us Christmas cookies every year like clockwork.

Driving to Willie's house was one of the strangest things I'd ever done. I couldn't believe it was real - even as it was happening. My aunt drove us from the rich, white part of town (Dallas, TX)across the railroad tracks (not very far) and it was if the tracks were a solid dividing line between rich,sunny, azalea lined houses and falling down,tiny,crap houses. Once we crossed that line, there were NO more azaleas. NONE of the houses were freshly painted. They were ALL in disrepair, the street itself was in terrible shape, and everyone was black. My aunt and I were the ONLY white people I saw the entire time we spent on the other side of the tracks.

I knew now where that expression came from. It had never crossed my mind that it was LITERAL. I had been coming to Dallas for my entire childhood, and then lived there for a few years - and I never knew this part of town existed. I was shocked.It was like a big, dirty secret - just a few miles away. In the EIGHTIES!!!!

Willie's house was a shock, too. I couldn't believe she was living in such poverty.It was like something out of a movie. A movie about poor people in 1930.

I held on to my sweet, old Willie for dear life and choked back my tears as hard as I could. I was outraged and heartbroken. I couldn't believe she made us those wonderful cookies every year from this dark,dusty,falling down, molding little house. It didn't seem possible.

On the drive back to the white side of town, I railed against my grandparents - hot tears running down my face in helpless anger.
"They didn't PAY her enough!!" I wailed accusingly to my aunt.
"Well you're partly right, Jennifer. But only partly." my aunt said kindly.
"Your grandmother has kept paying Willie for this whole time she hasn't been working, and she paid for all of Willie's medical expenses. That was a lot. She even offered for Willie to move in with her - into that cute cottage in the back - but Willie didn't want to. And the biggest reason she's so badly off now is because of her son."
"That man that was there?" I asked. Willie had said something in passing to a man who came out of the bedroom in a dirty wife-beater for just long enough to glare at us before he slammed out of the front door.
"Yes. That's Willie's son. And he's been to jail a lot of times. Your grandmother payed his bail the first time, but she wouldn't do it again. When he got arrested the second time, Mom wrote him off as a bad egg. He's really been a drain to poor Willie."

Flash forward to me, now.
I have a housekeeper. Her name is Dora. She's from El Salvador. She drives a nicer car than I do, has better credit than I do, and I pay her 20 dollars an hour to clean my house once a week. She's a terrible cleaner, and can barely heat up a pizza. But she's been helping me out since August was born, and I love her.

Willie made my whole family Christmas cookies every year until she died, even though she was legally blind for the last five of them.

My aunt and I dressed up and went to her funeral - which my grandmother paid for - and was exactly the way Willie wanted it to be.

I'm not saying that my grandmother was right, or the way she was raised was right. Not at all. I'm just saying....that's what happened.

Sophie's first surgery. April 29, 2011.(or, Only the Good Die Young)

On the day of my best friend's picnic on the anniversary of losing her 14 year old daughter, I am in the E.R. with my daughter, Sophie. The younger one, who has not had the occasions that my older daughter, Izzy, or Mieke's daughter, Marieke, have had to spend hours and days and nights in the hospital.

This may sound a little screwy, but as I put my beautiful, 17 year old daughter into the car to come here today, even as she was moaning in pain, I thought, "I am so lucky to HAVE a daughter to take to the hospital. I wouldn't trade places with Mieke for all the tea in China or all the money in the world."
As awful as it is to see Sophie (my little bear cub) hooked up to IVs, hurting, scared - I am shockingly aware (every moment of this) - that SHE is ALIVE. She is alive.

Life comes with pain.
Death promises the lack of pain.

I have been here for 6 hours. Some inane sci-fi-zombie-vampire thing is the constant background noise, along with the nurses' chatter and an occasional 'bing'. Sophie says they shouldn't be playing scary zombie-vampire- end- of- the- world movies in a place where people aren't feeling well to begin with. I agree. The remote control is lost. We are stuck with the zombies.

I have been looking at drawers marked with their exotic contents. They boast labels like : urethal catheritization tray, micromist nebulizer, oxygen connecting tube, salem sump 14fr., 15fr., 18fr. All of theses things sound technical and foreign to me.

My daughter is shivering uncontrollably.A sweet Indian nurse piles warm blankets on her. Even in this helpless state, she is more than capable of acting like a princess. Treating me like her serving maid. It's funny because my older daughter, Izzy, was always the bossy one. The alpha dog. But when she is in this moveable bed, hooked up to IVs and contraptions, her bossiness goes out the window. She looks up at me with sweet, helpless, kitten eyes.
"Thank you, mom. I love you." she has said to me countless times in this very hospital. In complete gratitude. As if I might NOT come and stay with her. How could I not? And thank you for what? Giving her the shitty genes that keep her coming back here? If only I could take them for myself. I would without a nano second of hesitation.

I am watching Sophie finally sleep. The morphine and the pain have finally done her in.I am sitting here watching her breath through her beautiful, full, pink lips. Her taped together glasses sliding down her nose. She looks like an eighties angel when she is asleep - with her pixie hair cut and her pretty skin. Right now her cheeks are flushed bright pink.

I watch her (under all those blankets) and think about the picnic we are missing. The anniversary picnic to remember when Marieke was still with us. I think about the times when the girls and I went to visit Marieke in the hospital. She was always at Kaiser. I hated that hospital. Walking down the fluorescent lit hallways with horribly bright,garish "children's" murals all over the walls. But I sort of loved it for making her better. In the middle of the night sometimes. Or in the middle of a family vacation. Whenever she needed it, they were open. Ready to help. As were the EMs and the ambulance drivers. I have been watching EMs and firefighters and police officers wander in and out of the ER all day.

Sophie's doctor just came in and told us "appendicitis". Thank goodness. Not her sister's thing. Surgery, then better. The nurse is surprised at our happy reaction to appendicitis. Sophie and the doc make a joke about "being patient."

I am so lucky to have a daughter with appendicitis. I am so lucky to have a beautiful,eighties princess of a daughter to order me around in the ER.

Doctor Short just walked in. He is very tall. Pediatric surgeon. He speaks to Sophie in a low, monotone voice. His eyes are bloodshot, but otherwise he is handsome. He explains the scars that will be made on Sophie's perfect 17 year old stomach. "Scars are cool." she says.

I'll sleep here tonight. Thanks to Izzy, I am prepared. Toothbrush, cozy clothes, a good book.
My daughters lend me books. Both of them. My daughters both paint and draw. They are both really good writers. They are both smart and kind and beautiful. They are both alive.

Wherever you are, Marieke, I'm sorry we missed your picnic. I don't understand why it was your time to go. And it shakes my tenuous belief in God to it's very core.

Only the good die young.

So, please, PLEASE, my darling, beautiful Sophie - DON'T STOP ORDERING ME AROUND!!!!