Monday, August 28, 2006

The Perks of Having Charlotte in the Hospital:
The 9:00am hospitality cart with all manner of stale donuts
The chocolate covered pretzels in the cafeteria
The nurses who feed Charlotte while I sleep
The TV all to myself
Charlotte's heart rate, breathing and O2 sats being monitored 24 hours a day
The tumble form chair Charlotte loves
Having someone else make up the bottles
and change the diapers
Time to read
wearing jams all day and night
not going to work
not having to clean
not having to cook
not having to shower

At night I sometimes get up and go for a wander. I used to do it in highschool too, around the dark streets. I called it "walkabout." What a geek!
I walk past the mural of Jesus and the kids in the 3rd floor lobby and see if there is a free computer. I look at the faded art work of elementarty school kids in neon splatter paint frames. I might get a package of pretzels in the cafeteria. I look out the windows over the city on bridge and watch the Life Flight come in. I pass the locked NICU doors and am glad I haven't been inside since nursing school. I stand in front of a vending machine for 10 minutes. it is quiet. The lights are dim and anyone else in the hall is like me--a tired, stressed, lonely parent in yesterdays pajama bottoms and a pony tail. Sometimes i end up crying like a boob, for my baby, for myself, for the other parents and the other babies who are worse off-the ones with strong vital minds but sick little bodies. The ones with bald heads and masks on.
I end up back in Charlottes room, crying, taking out my contacts, wraping up in a blanket and kissing my baby girl. This is not how I imagined parenthood.

Monday, July 03, 2006


Urgent to Britney--I still believe!
Oh sweet Britney. We've been through so much--me hating you with such passion when you first came on the scene with Baby One More Time--please forgive, I hated my beloved dog Molly when she was young and perky too--and writing my infamous version--Now Your Boobs Look More Like Mine. Making up the dance to "Sometimes" and performing it on cruise ships, drawing a picture of you with udders in the red jumpsuit to Oops I did it Again. And finally I relented, accepted, and you became my ally, my beloved.
Blasting What U See is what U Get before going clubbing to get my confidence up, defending your haircuts, your voice, your videos. I cringed when you started smoking, I forgave that ridiculous concert with the rain, I carried around your keychain depsite it all. I pretended to understand the suicide video and danced to the remix with a ten year old girl.
And then...Oh I weep for you!
The trucker hats, the cigarettes, and then...sin of all sins, that hideous man child of a husband!
Britney, we've been through a lot together. I know you wanted to rebel, to grow up, and it wasn't your fault a million seven year olds were singing "I'm a Slave For You" in the shower, much to the horror of their mothers. I rebeled myself in my mild, mormon girl way--(ie. making out and iced coffee from 7-11)--Hell, hon, we've been pregnant together. But it's time to grow up for real now. I don't blame you for the baby snafus; you can't be the only one making the carseat mistake or my doctor wouldn't ask me about our carseat at every biweekly visit.
I must however, as your friend, your ex lover, one only looking out for your best, --point out a few serious issues.
One--the Husband. You know he was a mistake. DUMP HIM.
Two-the clothes--you aren't 13 anymore baby. And arms don't look so giant and fleshy if you cover them a bit. Same with legs. We shorter, rounder girls don't look hot in minis and flip flops.
Three-the Hair. I see you've dyed it--good girl. It was looking way stripperish.

Finally, love, I want you to know I say all this because I LOVE YOU. You are a Goddess and you should act like one. Leave that nasty man and marry that sweet looking body guard of yours, give the uterus a break and let your body recover before you go for #3. No matter what, sweetums, I will buy your next album, but please no masturbation songs, how embarrassing for you.
You will always be the Talented Miss Spears and all is not lost! Pull yourself out of the gutter! Hit me Britney One More Time! I must confess, I still BELIEVE!
Sincerely, your ex lover, Erin

Wednesday, June 07, 2006

My baby's first birthday has snuck up on me!
"Oh, is she running around?" ask the platelet donors who remember me pregnant, leaning over a giant belly trying to reach their veins.
No, she is...she is...
let's discuss.
Charlotte is developmentally disabled. Thats the term I use. In a few years it will probably be considered inappropriate and kids will use it on eachother on the playground--like the latest-"Retarded."
At work a coworker will say "Whoops, I'm retarded" and I will cringe a little. Once I promised myself next time someone said that I would respond
"oh, like my daughter?"
But I never did.
The word retarded doesn't mean developmentally disabled anymore. It means stupid or foolish.
So I let it go. Even the ARC-Association for Retarded Citizens--no longer goes by that phrase. It's simply "The Arc."
Once in the hospital I listened, ear pressed to the door, to the nurses giving report about Charlotte. She said "She looks a little Down-sy." Downsy? I guess that's fair. With her bald head after surgery I said she looked like a cancer patient. Was that wrong?
I come across old articles that use words like "mongoloid" or "idiot". How the language changes.
Even Developmentally Delayed isnt' right anymore--many of them aren't delayed. All the work in the world won't help bring them "up to date."
In nursing school I heard the phrase "FLK" used in report-I guess the inapporpriate term for "downsy." Funny Looking Kid. I didn't find it offensive then and I don't now, but I know many parents do.
Handicapped is even frowned upon now, referring to parking spots only. For a brief period a few years ago the term of choice was "differently-abled" but really...that's a mouthfull.
Slow, retarded, handicapped, mentally disabled, developmentally delayed, idiot, otherwise abled, differently-abled, different, Special. The words we've come up with to describe those who are different, unfortunate, slow, delayed, challenged.
First and foremost, a baby. My baby.
My beautiful, happy, joyful opinionated baby girl, who sings herself to sleep and loves playing with pinecones and ice cubes. I use the term Developmentally Disabled. As well as "Princess Pea" "Booferdeedoo" "Sweetheart" and "Love." No man made term can describe all that she is, and that goes for all of us. She's my baby, and that's what counts.

Friday, March 17, 2006

A child with Down Syndrome will roll over by themselves anywhere from about 6 to 22 months,
or so I've read.
Charlotte is nine months old. She cannot roll over by herself. But then, she doesn't have Down Syndrome. I read about the developmental milestones of trisomy 21, or Down Syndrome kids, the other night, and I was overcome with guilt.
Charlotte gets lots of cuddles. She gets soy formula and oatmeal, various foods such as sweet potatoes, peas, applesauce, pears, peaches (which she hates) carrots, and squash at regualar intervals. She gets frequent diaper changes, baths, and lotion rubdowns. She gets a beautiful crib and pottery barn bedding. She has the best furniture in the house. She gets toys galore, play mats, a bumbo chair, a bouncy chair, and a boppy. She gets enough clothes to outfit ten kids her age. She gets beautiful church dresses that the old ladies and young mothers fawn over. She gets professional photo sittings and a haircut from mom. She gets a dozen different doctors. She gets a blog (mostly) about her. She got a trip to Hawaii when she was two weeks old. She gets lots of love.
Charlotte does not get enough physical therapy.
She does not get enough tummy time.
She does not get enough ab exercise.
She does not get enough gross motor sessions.

I fretted and cried a little and called upon my friends in the trisomy family group. They patted me and told their own stories, gave encouragment, all from their terminals at home, with their own little triers behind them on blankets.
Charlotte knows she is loved. She knows she is cherished and she knows how to snuggle.
For now, it is enough.
But tomorrow, she'll get her therapy in, come hell 0r high water.

Thursday, March 09, 2006

Developmental Delays
Hello, it's been a long time.
But a busy time. Much has occured, then un-occured, and now we're back to square one, just where we were before...never mind. I'm not really in the mood to write.
Here's what has changed:
Booferd's looked bad on echo. she had an mri. Her skull surgery was canceled.
The MRI looked great.
Heart surgery was scheduled, then canceled.
She was cleared for Skull surgery.
We are moving into a house in Taylorsville. It will be done in May. It's actually a Town House. It has two bedrooms and a scrapbooking room. Unfinished basement. I need new furniture.
I bought a new vaccuum because I will not take that broken dirt devil to the new house.
I refined my phlebotomy tecnique with help from co-workers after offering to quit my job. It was humbling. Now I rock the blood-letting world.
I have lost 12 lbs.
Charlotte got a haircut. She has a bob.
Zar lost 25 lbs.
Charlotte has gained 4 lbs. Zar made a rude comment about her thighs and I made him feel like crap for it.
I have a crush on Gunnar Peterson. Creator of the core secrets work-out.


Sunday, January 29, 2006

Before she got at the bottle:
Don't pretend you never woke up in a pink leopard print onesie, a feather lined sweater and an empty bottle in one hand. Don't judge Charlotte just because she's a booze-hound.

Sunday, January 22, 2006

I'm jealous of our neighbors and their top floor condo with red walls and vaulted ceilings. I come home from playing scabble and eating pistachios and our place seems like a cave. A cave with a giant bean bag on the floor, baby toys and a low ceiling. It's gross. There is a lot of crumbs and dried pasta and baby formula under the microwave and I refuse to clean it up. We let the cat destroy the arms of our couch so not only does it look like something from a swamp, but it is curiously fuzzy. The ceiling fan doesn't work. The carpet is matted. The pictures on the wall are not hung expertly in clever, pleasing formations, despite my yearbook editor experience. The coffee table is still against the wall in in our bedroom. My scrapbook stuff is in a plastic rainbow rolling cart in the MAIN ROOM. There is a chair against the fridge to keep it closed. I HATE IT!
I want a new couch, the green one that wraps around from Costco. I want an electrician to fix the fan. Kristen says "you should see my "CRAFT ROOM!" CRAFT ROOM!!!?? I have a ROLLING RAINBOW CART! I want a fridge that stays closed on its own. I want a maid.
Mostly, I want a house. A small house, with ample closet space, and a craft room. Zar says "lets be out of here in three years." Three years? I will be 28. I should be rich by then, living in a $400,000 home with a hot tub, right? how is that possibly going to happen? I just spent almost $200 on sugar free cookies and strained peas! I almost bought a "diamondique" ring off QVC today! I am not a saver.
I want a couch. And a house. And red walls and ceiling fan
But I still want sugar free cookies and dinners out and whatever other crap I buy that eats at my paycheck. I wish Zar was independently wealthy. And would let me hire a maid.

Sunday, January 15, 2006

Life's pretty decent on the Beach
I am rapidly approaching the end of Phase 1 of the South Beach Diet. Unfortunately I am not rapidly approaching my goal weight. Shame. All those beans for so little.
I have always, ALWAYS wanted to lose a few pounds. Now I look back at pre-pregnancy days and think "wow, what a hot young bod." And so underappreciated! Oh well, I still fit in those clothes, they are just uncomfy now. But here is what I miss that is Body Related:
time to go to the gym every day and trot on a treadmill watching CNN and listening to "The Middle" over and over.
When my belly pooch was smaller and did not have stretch marks.
Buying Gym Clothes and Self Magazine
My attitude that life without rasinettes and gummy items was not worth living.
Buying a new swimsuit every January to push myself to workout although I've never had Swimsuit Body by any means.
And right now, bread--soft chewy, delicious bread.

Oh well. I tell myself I'll never be obese. But I will always be just a little bit fat, to quote Briget Jones. And I will always be Charlotte's mom. And I will always be Zar's wife and the boss of my household. And I will always be in love with mountains and big dogs and earrings and raisinettes. So I can let the stretch marks go.