So, we almost made it a year without any unplanned hospital stays…..

We’re at Children’s this week. Samantha is fighting an infection but we haven’t been able to find the source. She’s been in a lot of pain and spent yesterday with a 104 degree fever. Last night took us from our ‘penthouse’ on the 8th floor down to the ICU so she could be closely observed as her stats started to drop.

We are keeping our fingers crossed that the worst is over. She’s on two I.V. antibiotics that seem to be controlling the infection and her vitals look good. She’s now sleeping and has her pink hue back 🙂 Thankfully, she went through this without any breakthrough seizures.

We’re hoping to be home by Friday. I’ll be updating my blog with any news. If you have a moment, send her a smooch.

Thanks, as always, for the support 🙂

Love,
Heather, Bart and Samantha

I got third in a writer’s contest! I get a $25 gift certificate and to sit with the author at our writer’s lunch. Free lunch! Whoo hoo! The rules of the contest were….you had to invent your own fad, it could be no more than 250 words, and you had to incorporate the following words: bellwether, flip and serendipity. Here’s the final result….

Susan met John at the door wearing donkey ears. “Welcome to the bellwether of political events!” She said.

“Thanks but remind me why I’m here? I like to keep my political views private.”

Susan rolled her eyes. “We’re in the wireless age, Honey. Nothing’s private.”

They walked into a gutted office building. Professionals stood in workout gear,
drinking beer and conversing. It looked like a typical gathering except for one odd fashion accessory. Everyone wore elephant or donkey ears.

A whistle blew and the referee called out. “Okay, grab your mud balls and go to your assigned sides. We’ll start slinging in two minutes.”

Susan rummaged through the mud balls. Each ball had a tag naming different political
issues; economy, Iraq, global warming. She took out oil dependence and juggled it
between her hands. “Are you going to take a side?” She asked John.

“I’m independent. Can I take you all on?”

The whistle rang. Susan turned with a flip of her donkey ears and hurled a mud ball
labeled Health Care.

“Hey Susan!” An elephant eared man called out and lobbed a gooey orb.

“What? Oh, ouch! I’ve been struck by Foreign Policy.” She wiped the sticky mud across her forehead and sat down by John.

“Physical political mud slinging?” he asked.

“We all have political angst. We have to get our aggression out somehow. It’s dirty but good fun.” She picked up a ball. “Ah, sweet serendipity; this is a good one, lipstick. I’ll be back”

Rub a Dub Dub….I like the Hot Tub….I think

Pops shoulder and a hot tub…life is good!

I’m Queen of the World!

My Mother is a Floating Head

So it’s an interesting thing….after these pictures were taken, Samantha had a week of seizures that were really hard to control. We ended up in the emergency room the next Saturday. You can kind of tell that she’s not on her ‘A’ game but she’s still hanging in there. She’s a tough little fishie!

Hi All:

So I didn’t win this writing contest….wasn’t even a runne-up darn it! We had 24 hours to turn around a story. The theme of the story had to circle around a woman walking into a toy store, picking out an item and being told that item was not for sale….this is what I came up with….

Easy-Bake Beauty

Angela turned away in shock and anger. How dare she? I’ve been eyeing this for months. Who does she thinks she is? Angela looked down at the counter where the coveted Easy-Bake Oven used to be and then up at the owner who enveloped the toy within her cheesy arms. She cleared her throat. “Ahem, I see. Well thank you.”

Angela stepped outside into the sweltering heat of the city. To make matters worse, the anxiety of the situation triggered a hot-flash. She could feel drops of sweat pool between her bra and in the creases of her panty hose. She ducked into an alley way, cursing. In desperation she pulled off her hose and deposited them in trash can. She breathed a sigh of relief. Better.

Off Broadway in a cheeky French restaurant, Angela met her best friend, Rebecca over a glass of wine.

“Where’s the Easy-Bake?” Rebecca said. “I’ve been looking forward to this trip down memory lane!”

“She wouldn’t let me have it,” Angela shook her head. “It was odd. I’ve been collecting toys for years and I’ve never seen anyone so attached. She would have gone after me if I tried anything funny. It’s only an oven.”

“Maybe it makes really, really good cookies.”

“Oh, I’m so sad! I scoped it out for weeks. Original, first produced 1963 Easy-Bake Oven….in turquoise. God, I’m hot in here. Waiter! Can I get a glass of water?”

Angela couldn’t get the encounter at the toy store out of her head. Later that afternoon, she decided to pay another visit to the owner. She stopped off at the bank and withdrew more cash. Playing a little hard ball.

Angela peeked in the window looking for the shopkeeper. Afternoon light streamed through the dusty windows. She could make out vintage toys from childhoods past but no sign of the owner. Angela quietly squeezed through the door trying not to ring the bell. She was greeted with enticing, scents of vanilla and sugar…mmmmm…..cookies but not any just any cookies, Easy-Bake Oven cookies. Angela closed her eyes and was taken back to a time of bobby socks and print skirts, pigtails, Barbie dolls and tea parties.

She tip-toed towards the back where the smell was getting stronger. The owner was in the bathroom hunched over the Easy-Bake Oven. What is she doing? The smell of cookies was almost overwhelming. Angela stepped closer. The shopkeeper’s head was practically stuck inside the oven.

“What are you doing??!!!” Angela cried out.

“What? Who’s there?” The owner pulled her head out of the oven. “Oh hello dear, weren’t you just here this morning?” Her face was covered with cookie batter dripping off her chin and nose.

Angela stood there stunned.

“Let me wash my face, I must look a mess. I can only imagine what you’re thinking. What is that crazy lady doing with her head in the Easy-Bake Oven? Oh, just fixing a little odds and ends. These older toys never work quite right. Let’s move to the front of the store, shall we?”

Angela couldn’t believe her eyes. The shopkeeper looked twenty years younger. Her crow’s feet were gone, the wrinkles around her mouth had disappeared and her skin had tightened up. “The Easy-Bake Oven did this?”

“What? Oh no, don’t be silly.”

Angela looked at her suspiciously. “Something’s going on here. There’s nothing worse than a shady toy store.”

The shopkeeper sighed and wiped the remaining batter off her nose. “The Easy-Bake Oven did this; just the very first 1963 model. I think it’s something about the light bulb and the old cookie batter. To be honest, I’ve never felt better.”

“Does it work for hot flashes too?” Angela asked.

“Like a dream. The Easy-Bake seems to reverse any consequences of aging. I found twenty minutes with the sugar-cookie recipe works the best. I stay away from the carrot cake. I find it makes me too orangey. So you see dear, I can’t sell you my Easy-Bake.”

“You didn’t look this good this morning.” Angela said skeptically.

“I couldn’t find the oven for a week! Someone hid it in the store. When you brought it up to the counter, I was so relieved. I had to sneak in a beauty treatment this afternoon. Easy-Bake magic is only temporary.”

Angela dug into her purse looking for the cash she brought. “You have to sell me this oven! I don’t care the cost. Menopause is killing me; hot flashes, sleepless nights, wrinkles….please….or just let me stick my head in the Easy-Bake…just for a minute or two.”

“No, it would be too cruel. Once you’ve had it, you would want more and I can’t give you mine. No dear, you will have to find your own beauty treatment.”

Angela left the store feeling sad, forlorn and fighting another hot flash; damm that woman her and her Easy-Bake Oven.

Two years later, an older woman walked into a dusty old toy store. Ahh, there it is. I’ve been looking for ages; the 1963 Easy-Bake Oven in turquoise. She proudly carried her new find up to the cash register. “Ma’am? I would like to take this.”

Angela turned from behind the register. She smiled a flawless, wrinkle free grin. “Oh no, no, no, I’m very sorry,” Angela grabbed the box. “This item is not for sale.”

Easy Bake Beauty
Submitted: July 27, 2008
Heather Simms-Schichtel
heather.schichtel@gmail.com

Hi All!

I will post about the week later today….all is well!!! But I have been struggling with the release of Tropic Thunder and how to ‘keep my sense of humor’. I think Timothy Shriver does a good job of relaying my thoughts. 🙂

Timothy Shriver, Chairman of Special Olympics, has an op-ed piece on
“Tropic Thunder” in the Washington Post (read below).

By Timothy Shriver
Monday, August 11, 2008; A15

I’ve been told to keep my sense of humor about the film “Tropic
Thunder,” which opens this week. Despite my requests, I have not been given the
chance to see the movie. But I’ve seen previews, read about it and read
excerpts of the script. By all accounts, it is an unchecked assault on the
humanity of people with intellectual disabilities — an affront to dignity, hope
and respect.

Consider this exchange:

Ben Stiller’s character: “There were times when I was doing Jack when I
actually felt retarded. Like really retarded.”

Robert Downey Jr.’s character: “Oh yeah. Damn.”

Stiller: “In a weird way, I had to sort of just free myself up to
believe that it was okay to be stupid or dumb.”

Downey: “To be a moron.”

Stiller: “Yeah.”

At another point, about acting like a person with intellectual
disabilities, they say:

Stiller: “It’s what we do, right?”

Downey: “Everybody knows you never do a full retard.”

Stiller: “What do you mean?”

Downey: “Check it out. Dustin Hoffman, ‘Rain Man,’ look retarded, act
retarded, not retarded. Count toothpicks to your cards. Autistic,
sure. Not retarded. You know Tom Hanks, ‘Forrest Gump.’ Slow, yes. Retarded,
maybe. Braces on his legs. But he charmed the pants off Nixon and won a ping-
pong competition. That ain’t retarded. You went full retard, man. Never go
full retard.”

I worked with the Farrelly brothers on a film on this topic. I know
about edgy comedy. I’m also told that movies are equal-opportunity offenders.

So here’s an equal-opportunity response to the equal-opportunity
offenders:

People with intellectual disabilities are routinely abused, neglected,
insulted, institutionalized and even killed around the world. Their
parents are told to give up, that their children are worthless. Schools turn
them away. Doctors refuse to treat them. Employers won’t hire them. None of
this is funny.

For centuries, they have been the exception to the most basic spiritual
principle: that we are each equal in spirit, capable of reflecting the
goodness of the divine, carriers of love. But not people with
intellectual disabilities. What’s a word commonly applied to them? Hopeless.

Let’s consider where we are in 2008. Our politics are about overcoming
division, our social movements are about ending intolerance, our great
philanthropists promote ending poverty and disease among the world’s
poor. Are people with intellectual disabilities included in the mainstream of
these movements? For the most part, no.

Why? Because they’re different. Their joy doesn’t fit on magazine
covers. Their spirituality doesn’t come in self-help television. Their kind of
wealth doesn’t command political attention. (The best of the spirit never
does.)

Sadly, they’re such an easy target that many people don’t realize whom
they are making fun of when they use the word “retard.” Most people just
think it’s funny. “Stupid, idiot, moron, retard.” Ha, ha, ha.

I know: I could be too sensitive. But I was taught that mean isn’t
funny. And I’ve been to institutions where people with intellectual disabilities
are tied to beds or lie on concrete floors, forgotten. I’ve heard doctors say
they won’t treat them. I know Gallup found that more than 60 percent of
Americans don’t want a person with an intellectual disability at their child’s
school.

I’ve talked to people with intellectual disabilities who cry over being
insulted on a bus. I’ve received too many e-mails from people who are
devastated not by their child’s disability but by the terror of being
laughed at, excluded and economically devastated.

It wasn’t funny when Hollywood humiliated African Americans for a
generation. It’s never funny when good and decent human beings are humiliated. In
fact, it is dangerous and disgusting.

This film is all that and more. DreamWorks went so far as to create a
mini-version of Simple Jack and posted it online. The studio has since
pulled it down, realizing it had gone too far, even in an age of edgy, R-
rated comedies.

So, enough. Stop the hurtful jokes. Talk to your children about
language that is bullying and mean. Ask your friends, your educators, your religious
leaders to help us to end the stubborn myth that people with intellectual
disabilities are hopeless. Ask Hollywood to get on the right side of dignity.

I hope others will join me in shutting this movie out of our lives and
our pocketbooks. We don’t live in times when labeling and humiliating
others is funny. And we should send that message far and wide.

The writer is chairman of Special Olympics and a columnist for
washingtonpost. com’s On Faith discussion site.

The oncology nurse, Nurse John came down to get us. He was a big, burly man who handled Sarah with delicate hands. I chuckled to myself as he carefully lifted our tiny daughter. His biceps were decorated with tattoos. He looked like he should be watching the door at a biker bar instead of wearing Thomas the Train scrubs. He reached down to get Sarah and held her as though she were made of porcelain.

“Let’s get you upstairs and settled.” He cooed to Sarah.

We followed him up to the 5th floor, listening to him in our catatonic state. There was a huge STOP sign on the door to the ward.

“This is a clean floor.” Nurse John said. “The kids up here have such compromised immune systems we really have to be careful. No colds, no other siblings and you can’t use the bathroom in the room; it’s shared with the kid next door and we can’t contaminate it with anything.” He handed us a sheet of paper explaining the 5th floor protocol. I felt filthy, germy and infectious.

I always wondered what went on behind those doors with the big red stop sign. Drama, I thought, doctors running through the halls, children screaming behind closed doors. Instead, it was very quiet and very clean. Doors were decorated with bright get well cards and big signs as to whose room it is….Welcome to Ashley’s room, Nathan’s room…it hit me, kids are here for a while.

We walked in our room and laid Sarah down in the crib. The front bars of the crib were down since they needed to treat her and there was no fear of her rolling. Sarah used to roll; but not today. The hospital crib looked like a baby jail. The bars were metal and made a loud clanging sound when locked into place. She looked so small in this big metal cage. I wanted to crawl in with her and cuddle.

I tried to schooch in next to her. “Will the crib hold me?” I asked, trying to sneak a hip up on the mattress.

“Hmmm, probably not,” Nurse John said.

I got off the bed and wandered aimlessly around the room biting my cuticles, trying to think of someway to feel useful.

“Can we feed her?” my husband asked

“Sure, let me get you some formula, we’ll see how she tolerates it.”

Finally! I thought. Some sense of normalcy…feeding the baby; all normal, healthy babies eat. Sarah was going to be just fine.

Nurse John brought in a couple bottles of soy formula.

“She takes milk based formula.” I said.

“Why don’t you give this a try. Soy is easier on sick kids tummies. We use it around here all the time.”

I glanced over at my husband. We had asked our pediatrician about switching to soy months ago due to her reflux. “No, no” he assured, “milk protein is the best. We don’t need to switch her.”

Stupid, stupid, stupid, my husband and I had talked after our doctor’s visit about concerns we had with our pediatrician. We decided to stay with him until Sarah’s six month appointment. I felt that we had lost precious time listening to a doctor who dispensed flippant information. Maybe if we had switched to soy we wouldn’t be here, I thought.. I took the formula, gently cradled my daughter and started to feed her. Sarah seemed to wake up a bit. She took the nipple and slowly began to eat. I breathed a sigh of relief. At least I can still feed her.

Sarah drank two ounces and seemed pretty content. She looked directly at me as her body tensed and gave a loud farting sound. Bill, Nurse John and I looked at each other and started to laugh. Sarah gave a slight, relieved smile.

I looked down at my jeans and saw that Sarah’s little noise left me covered in yellow baby poo. “I could be wearing these clothes for a while.” I thought. I set Sarah down, cleaned her up and then cleaned my jeans off. Funny, a couple of days ago I would have been a little disgusted by being coated in poo, now it was just part of the day.

I remember reading a book when I was a teenager about a 19 year-old boy who had leukemia. His mom was donating blood one day when she noticed the woman by her side had poo on her crisp, white pants. When she pointed it out to the woman she said “honey, when you’re in the leukemia ward, your life is covered with shit.”

Samantha is two years old today! YAY Sam!

We said goodbye to the first year last night in the Emergency Room. Samantha had a series of seizures this week. Last night we realized it was a urinary tract infection causing her problems. Not wanting her to have a bad birthday, we loaded her into the car last night to ‘nip this in the bud’ so to speak.

As the clock ticked towards midnight I became really antsy. Samantha cannot start her second birthday in the hospital. She just can’t. We needed to be out before midnight. I parked myself in the hallway with my arms crossed staring the nurses down. Finally at 11:45, we were sent home with antibiotics and discharge papers. Whew!

Today Samantha is sleeping comfortably (still) upstairs. She missed her pool-playdate birthday celebration but seems no worse for the wear. I however, am stuck with 36 birthday cupcakes. Come on by if your blood sugar is low.

The urinary tract infections defined our first year. As I sat in the E.R. telling the doc that I would like to cath her instead of the nurse because I “know where the goods are” I felt it ironic that we were here four hours before her birthday. Ah, what we learn in a year. I told Samantha that as we say goodbye to one year tonight, we are also saying goodbye to these nasty UTI’s….let’s hope her bladder listens.

Happy, happy birthday to beautiful, complex, determined, life-changing Samantha! We love you.

A couple people have pointed out that I switched from Sarah to Samantha in the last post. Sorry about that! In the final version, Samantha’s name will be changed to Sarah…I just forget to change it when I’m writing! This is why I need a good editor 🙂 Hope you all are well!

The Plus Sign

It was the first weekend of December 2006 when I found out I was pregnant with Sarah. The mountains had been hit with a huge storm and we were planning on skiing. The alarm went off at 5:00 in the morning. I stumbled to the bathroom to pee on a stick; our morning pregnancy ritual.

After my deed was done, I set the stick on the nightstand and collapsed back into bed. “I don’t care how good the snow is, 5:00 is early” I thought to myself. I waited the mandatory 3 minutes and turned the light back on. The test showed a minus sign; negative; no baby.

“Nope”, I said to my husband and curled back under the down comforter.

“Give it a couple more minutes,” he said.

I groaned and buried my head in the pillow; annoyed by his optimism. Unbeknownst to him, I had taken several throughout the week and they had all been negative. At $20 a pop, these little tests weren’t to be taken lightly. But I couldn’t help it. I was addicted, a slave to the pregnancy test. But Aunt Flo was due tomorrow. This, according to my husband was the right time to test. I left my neurosis to myself.

“Maybe next month,” I thought to myself and drifted back to sleep.

“Check it again.” My husband nudged me 5 minutes later.

I grumbled, turned on the light, and checked the test. There was the slightest line crossing over the minus sign….a tiny, faint plus…. positive?

“Do you see this?” I handed the test over to Bill. “Do you see the plus sign? It’s really, really faint, but can you see it?”

“Hmmmm…Yep, there it is.” He answered with a confident grin as though he knew we would get pregnant this month.

“Oh my God, we did it. We’re pregnant; holy shit.” I buried my head in the pillow and started to cry.

“Hey, are you ok?” Bill stroked my back.

“MmmmHmmm” I answered, muffled in the pillow and overwhelmed with emotion. “It’s just that…Jack…he’s going to have a brother or sister.” At that moment, I felt at peace with the world. We were going to be ok. This little baby, barely there, barely able to make a plus sign, was a testament that the universe was ok.

We skied that weekend. The snow was fantastic but it was one of the coldest Decembers in history. I felt like I was soaring down the mountain; this little creature safe and warm in my belly.

“We’re skiing.” I said to the tiny pulsing bundle of cells in my belly. “I’ll take you someday.”

We stopped at the bottom of the mountain; my cheeks red, my breath a little labored.

“Hey, you need to take it easy.” Bill said. “This little person doesn’t have any arms to help them hang on. They’re just bouncing around.” He started doing this little dance on his skies; arms and legs flailing about. “Hey mom, slow down….whoa…I can’t hang on.”

I laughed, leaned over and kissed him. “I love you. I’m so glad we’re doing this again.”

“Me too.”

******

The IV machine beeped loudly jolting me back from my lovely memory.

“I think it’s empty.” I said to Bill. “I’ll go find a nurse.”

Dr. Abbey came back in. “Everyone has called me back. We would like to do a CT scan of her head just to make sure there is no infection behind her eyes. We also want to take an x-ray of her chest to check for pneumonia and we’re ready to do the spinal tap.”

My head whirled. Spinal tap, pneumonia, infection behind her eyes, the brain is behind the eyes, I thought. They are checking for an infection in her brain. I silently thanked Dr. Abbey for her tact; for not announcing that a brain infection is an option they were considering. I couldn’t handle those words hanging in the room.

Two nurses were opening packets, setting gauze and iodine on trays.

“So,” Dr. Abbey said, “you can stay for the spinal tap but we really don’t recommend it.”

“I’m staying,” my husband replied.

“I think I’ll take a walk.” I said. I got up, leaned over and kissed my daughter. I walked out of the room, unsure of where to go next, leaned against the wall and cried.

The next couple of hours went by like a crazy dream. “Wake up” I kept telling myself; pinching my leg.

We carried Sarah from room to room as they did different tests. I sat outside the radiation room next to a video game…Zombie Wars…The game played creepy music over and over. I sat on a hard. plastic chair, my head against the wall, listening to zombie music. I would occasionally glance down the hall waiting for the undead to emerge from the corridors. “Zombies,” I thought, “would make a nice addition to this night.”

“We have a room for you.” Dr. Abbey proclaimed triumphantly. It was 9:00 at night. We had watched families filter in and out…lucky ducks, I thought. How smug they looked putting their jackets on, carrying their children out the door. But honestly, I didn’t want to take Sarah home. If they had discharged us I think I would have handed her back to the nurse. We ruled out Spinal Meningitis, an infection in her brain and pneumonia. Sarah remained a mystery.

“You will be in room 510. It’s the oncology floor.” Dr. Abbey said. Leukemia had not been ruled out due to her high white count. Oncology, cancer, sick little kids.

“A truly great man never puts away the simplicity of a child.”
– Confucius

This evening as I watered my garden I watched my nieghbor, Russ teach his son how to mow the lawn. They spoke loudly over the roar of the engine. Russ’s voice was composed and instructional. His son Logan excited, almost giddy, finally getting to do something he’s watched his dad do week after week for years.

The lawn….a right of passage. A source of teenage income and a grown up chore. Mowers have engines, blades and use gasoline. This is a machine! You have to be old to handle this one; double digits at least, age ten and up.

“We’re going to switch it into gear….see that? Alright, now the blade is down and you just walk in a straight line. Is the blade down? I don’t think you’re cutting anything. Pull the lever. There you go, make it straight.” Logan finished a row by himself, stopped at the tree and turned around towards his dad. They both started laughing.

I walked into our house. “Russ is teaching Logan how to mow the lawn.” I told my husband.

“I know, I’ve been listening. It’s a big day.”

I kept the screen door open so I could hear them in the summer air. I was such a voyeur but I got such a kick out of their father-son moment. Logan, now big enough to mow the lawn.

It’s the little events that make a life.

So I’m playing with the title….let me know what you think! XO-Me

The doctor came into the room. She was young, in her 30’s with a look of ambition and concern.

“Hi, I’m Doctor Abbey. I’ve looked at Sam’s lab results and I’m at little stumped. She’s seems very dehydrated. So we’re going to start her on an IV. I’ve called in a couple specialists for a consult. Her white blood cell count is really high indicating an infection. I would like to order a spinal tap. How long has she seemed sick?”

I suddenly second-guessed everything I had ever done; the glass of wine when I was nursing, maybe I should have pumped longer, then there was that time when she fell off the couch….

“She’s been sick with a fever since Tuesday. I took her to the doctor’s and they gave us an antibiotic. They said it wasn’t serious and she was ok to travel.” I answered. “We’ve been concerned about her weight gain and hearing for a while and we were just starting to get second opinions.”

“Any brothers or sisters at home?” She asked.

I looked over at my husband. Do we answer this? Do we go there? It’s probably important that they know. God, I hate this question.

“She had an older brother, Jack. He was stillborn at 40 weeks.

Dr. Abbey looked up from her notes. “I am so very sorry.”

The silence in the room was deafening but I could hear the blood pounding in my head.”

“Do they know why?”

“It was a cord accident.” I answered.

“Did they ever do an autopsy?”

“No, the doctors said it seemed pretty obvious that was what happened.”

“Hmmmmm” The doctor looked down at her clipboard and scribbled some more notes.

“No!” I wanted to yell “they didn’t do an autopsy because we shouldn’t be here. We should have had our awful tragedy, grieved and moved on with our life. We shouldn’t be in Children’s with our second child. We shouldn’t be answering these questions. Life should be giving us a green light. And it’s so very unfair it kills me, it makes me want to puke, to crawl in a little ball, to hurt something as much as I’m hurting!”

Instead, I shrugged, looked over at my daughter and searched for something to do to mask my pain. I should probably refresh my lipstick, I thought.