Monday, June 29, 2009

The Artificial Woman-pt. 6--The real girl becomes an artificial woman

The fact that Rainbow was different from other girls was not lost on her family doctor--a country doctor with a hunch.

By the time Rainbow had turned 13, she still had not even started puberty--no growth spurt, no menstrual cycle, no breasts, no anything that would be of any interest to a boy going through puberty. These facts combined with Rainbow's puffiness, bad eyesight, constellation of moles over her body, and overall physical anomalies gave her doctor pause.

Without explaining why, he ran a blood test during a routine checkup. Rainbow's fear of all things with needles had not subsided, still she submitted to the mystery blood test.

When the results of the Mystery Test were in, the doctor called Rainbow's parents and asked them to come in for a chat, sans their daughter.

Not liking the unknown, Rainbow fussed and tried to determine what was so wrong with her that her doctor had to have a private conversation with her parents. When her parents came home they told her: A blood test called a karaotype revealed a rare genetic disorder called Turner Syndrome, and as a result, among other things, Rainbow would not be able to bear children, and would need to take pills (hormones) to gain "secondary sexual characteristics".

"But mom and dad," she said, "I like guys."

Rainbow's mom, a nurse, broke it down for her. "Secondary sexual characteristics are what make you a woman on the outside," she explained.

As to the what and why of the condition, Rainbow studied a booklet given to her parents called, Good Things Come in Small Packages. On the cover, was a sketch of a girl who had a very similar shape to Rainbow--short, soft shoulders, puffy hands and feet with arms sticking out. The book said that about 1/2000 girls have TS. In general, girls with TS have 45 chromosomes instead of the standard 46. Being only 13, not all of it sank in. Thankfully, the book had a question and answer section:
  • Are girls with TS retarded? Answer: no more than anyone else (whatever that means);
  • Are girls with TS promiscuous? Answer: no (presumably this question was asked because nothing says, "pork away pal!" like a girl who can't get pregnant);
And the book went on about some of the potential health problems associated with Turner Syndrome, including heart and kidney defects. There were two options available to Rainbow and her parents for treating TS and helping her get her boobs, period and maybe even height. The boobs and period could be covered by taking a mix of estrogen and progesterone for most of the month, at the end of which, a period (monthly visitor/horror, Aunt Flow) would appear, and Rainbow could experience the joys of being "on the rag".

It turns out these hormones would add some inches, but not many to her height. In order for Rainbow to grow to a "normal" height, the doctors offered up the idea of taking male hormones (androgens).

All of this confused Rainbow, so her parents took the lead and decided "yes" to the period and boob hormones, and "no" to the male hormones, as they could endow Rainbow with male secondary characteristics, such as a deep voice and facial hair, that wouldn't go away.

And all of this was shocking, but the part of the TS news that bothered Rainbow the most was the fact she would never bear children. She thought that's what all girls grow up to be--mothers--all girls except for her.

up next: ultrasound and a visit to the "crotch browser".

Friday, June 26, 2009

The Artificial Woman-pt.5 (eating=balloon belly)

As far as Rainbow's performance in school was concerned, her academic prowess was overshadowed by her behavior, and apparent lack of motor skills. For example, even though she was consistently reading above grade level, she didn't have good comprehension of what she read, according to her report cards. Her teachers also commented on how sloppy her writing was, and how she bothered other students, and how other students bothered her. "Her feelings get hurt too easily," was a popular refrain.

Yes, indeed they did, especially when she started to eat "people food".

Big mistake!

For the longest time, Rainbow ate nothing but cereal and toast. This had to change once she started school. Her first love was peanut butter, so her mom first made her peanut butter crackers, and then peanut butter sandwiches for lunch. She refused to eat "hot" lunch, though. In fact, one time in 3rd grade when the teacher made Rainbow eat her warmed-over canned spinach, she threw it up.

The teacher never made her eat spinach after that.

Rainbow's parents were happy when she would eat, since she normally wasn't interested in food. They didn't mind when she had seconds of burgers, pizza, spaghetti and the like.

But Rainbow wasn't growing, so she gained weight, starting at age 10, when she should have started growing up, and not out.

As kids will do, they noticed Rainbow's explosion in size. Frankly it was hard not to notice her. She was shorter than her classmates, wore glasses that could have substituted for binoculars, and was turning pudgy. Both boys and girls called her "balloon belly".

This is not to say Rainbow didn't have friends. She provided much entertainment due to her lack of impulse control, talking out of turn, making jokes. She was "funny". Plus, even in elementary school, some boys were starting to "like" girls. If Rainbow befriended a girl a boy liked, she became a conduit between her friend, and the boy who liked her friend. Often Rainbow "liked" the boy who "liked" her friend, but she was happy for whatever attention she could get.

Case and point: In 3rd Grade, there was a boy named Scott. Scott liked Rainbow's friend Julie. He asked for Rainbow's number, so he could ask her questions about Julie. This might have offended other girls, but it thrilled Rainbow. Just by virtue of being Julie's friend, Rainbow earned a kiss on the hand and cheek from her favorite boy in class. It didn't matter that it was Julie he "liked".

Rainbow was giddy. She came home after school the day Scott kissed her, and unlocked the door to her house with one try. Kissing a boy had evidently released some courage and confidence. Throughout grade school Rainbow would worship the ground Scott walked on. Scott would worship the ground her friends walked on. Still, she would do anything to try to impress him, including running down the hall so fast, she fell, chipped her teeth and split her lip. Yes, you could compare Rainbow to Olive in Little Miss Sunshine, both in looks and spunk.

But the older she got, the more she, and everyone it seemed, noticed she wasn't like her friends, and the the more her spunk dwindled.

Tuesday, June 23, 2009

The Artificial Woman-pt. 4

It was sometime in First Grade that Rainbow needed surgery on her ears. This was discovered after several visits to an ear, nose and throat specialist, where her mom would talk with the doctor, and she would sit there with eyes glazed, looking at charts on the wall, and complicated machines.

She did however manage to hear the word "surgery" and went into panic mode, much to her mom's annoyance, as once Rainbow was in a panic, she didn't get out.

It was explained to Rainbow that because of her frequent ear infections, doctors were going to put in tubes to help fluid drain from the ears. And while they were at it they would take out her adenoids, with the goal of preventing further bad infections. Too many infections would cause hearing loss.

She stayed overnight at the hospital in a room with a boy who was even more afraid than she. A nurse came by taking dinner orders. Rainbow's dad was there and ordered toast for her. Her mother was in nursing school and couldn't make it.

When the toast came, Rainbow deemed it too dark, plus it was cut in half. She selfishly brushed it aside.

Throughout the night a stream of nurses came in, taking vitals. Rainbow didn't sleep well anyway, but it seemed like the nurses would arrive just as she was finally about to drift off.

Then, the next morning, surgery time--a shot in the butt and a foul-smelling mask and Rainbow was on her way to la-la land. She woke up unable to swallow without pain. Orange juice was requested and denied, but a Popsicle provided much needed relief.

Rainbow was surprised at how long the pain lasted. When she got home from the hospital, she immediately asked for toast.

Then she tried to swallow. Not easy, in fact, impossible with her throat dry, swollen and painful. She also had to keep her ears from getting water in them. Her mom washed Rainbow's hair in the sink, being careful to avoid the ears.

All told, she maybe missed a week of school because of the surgery and recovery. Whilst away, her classmates had made get well cards for her, and her teacher had finished her art project--an ashtray with a smiley face.

No doctor it seemed even knew about Turner Syndrome, let alone think Rainbow's problems with her eyes and ears were related to it.

Until she turned 13.

Monday, June 22, 2009

The Artificial Woman-pt. 3

Rainbow slept little. In the summer she'd wake at the crack of dawn, hit the backyard swings, and turn a portable radio WAY UP.

Too bad her parents slept with their window open.

She knew every song from the am radio, such as Marvin Gaye's "What's Going On", and "Never Can Say Goodbye", by the Jackson Five. Rainbow listened and swung happily, as ponies in the pasture chased each other, and crop dusters swooped overhead.

In the evening Rainbow would listen to her father's albums. She didn't have much choice. He played his music loud too.

He would put on Led Zeppelin II, and quiz Rainbow about the song.

"Kool-Aid," she say, thinking the words to "Whole Lotta Love" were, "You need Kool-aid."

And so began Rainbow's retention of all things trivial, which lasted until 2006, when she had to have part of her brain removed.

Because she wanted to be so much like her older sister, she was excited about going to elementary school at Mooberry Elementary in Hillsboro.

Rainbow's favorite activities included swinging at recess and playing instruments. She had a hard time with arts and crafts for some reason. Fortunately Rainbow made some friends, some of whom remained her friends through High School.

So Kindergarten went well. At that age it's okay to be a little wild and crazy. Plus it doesn't last a whole day.

But First Grade was another matter. Two problems existed because of Rainbow's unique personality.
  • At that time, she didn't eat anything but toast and cereal (and the toast had to be white and spongy, and NOT cut; cereal had to be Cheerios);
  • Thinking she was at the height of elementary school fashion, Rainbow HAD to wear patten-leather shoes, and would almost miss the bus, because she had to stop and brush the smallest speck of dust off of them.
So Kay, Rainbow's mom, suggested this may be a problem, since toast was not offered as part of the school lunch program.

As a matter of fact, Rainbow went on a hunger strike and won. Kay ruled that Rainbow could have toast once a day, and milk, but otherwise would have to eat "people food".

So Rainbow had her one meal of toast and drank milk whenever she wanted, but did not eat "people food".

She would eventually eat "people food," but would discover that eating had a natural consequence.

Saturday, June 20, 2009

The Artificial Woman-pt. 2 (naked time)

Perhaps impulsive would be a better word than hyperactive to describe Rainbow when she was a young child. When Bob and Kay would have friends over, Kay would ask Lynn and Rainbow to play quietly upstairs.

Quiet wasn't Rainbow's strong suit, at least at that time. When her parents and their friends would least expect it, Rainbow would take off her clothes and run naked through the living room, to the huge laughter of her parents friends, and to the horror of her parents. As long as she was encouraged by the applause of her parents' friends, the entertainment continued, sometimes with clothes on.

Rainbow's family also likes to recount this other story of poor impulse control: One hot summer in 1972, Rainbow's mom, aunt and cousin's were shopping at Mall 205 for material. Rainbow's mom and aunt were going to make bridesmaid and flower girl dresses for another cousin's wedding. Rainbow assessed she was too hot and needed to cool down. Once she got a notion, it didn't go away.

The nearest place she found to cool down was the fountain at Mall 205. Deciding again that it was naked time, Rainbow strayed from the group, disrobed and jumped into the fountain, even though she didn't know how to swim. Rainbow invited her cousin to join her.

Instead her cousin went and told Kay, "Rainbow's in the fountain wading, and she says it's okay. Can I go too?"

"Dammit Rainbow!" Kay cursed as she went to retrieve her wayward daughter.

Well, at least an elderly couple sitting by the fountain got a laugh.

On another occasion, one of Bob's friends named Doug, invited the family over for a swim at his apartment complex. The fact that Rainbow couldn't swim didn't stop her from jumping into the deep end, even when there was no one to catch her. Bob, an excellent swimmer, would hurry to catch her and tell to stay in the shallow end.

Her response to this advice was to run to the deep end and jump in again...and again...and again.

This impulsive and potentially dangerous behavior seemed "free-spirited" to the outsiders, but just plain weird to those closest to Rainbow. Back then, there weren't as many drugs to give a "weird" kid. The parents just bit their lips, and prayed for the child to grow up and out of it.

To Be Continued.

Wednesday, June 17, 2009

The Artificial Woman

The following is a work of fiction, but based on my 42 years of "research" as a girl with Turner Syndrome:

She seemed like every other baby, a little smaller than average, but not by enough that it raised any red flags for any of the doctors. Her parents named her Rainbow, because it was a popular name in 1967, the year she was born.

One thing the doctors did comment on was Rainbow's toes. They had unusual creases in them.

Like any other baby, Rainbow was loved by her parents, Bob and Kay Yebdog. And her parents received many congratulations from their friends. Rainbow was the second--and last--child for
the Yebdogs. Two years previous, the Yebdogs had been blessed with their first daughter, Lynn.

Mrs. Yebdog says that as a baby, Rainbow didn't so much crawl as slither like a snake. And while Lynn learned to walk at nine-months, Rainbow was about 14 months when she started to walk. And although Rainbow talked a lot, she didn't potty train until she was ready--sometime between two and three years of age.

The problems began shortly after. Rainbow wasn't growing or eating much. Doctors accused her mom of not loving her enough. This, of course, was wrong, and today, wouldn't be said by a doctor.

Then there were the ear infections--one right after the other it seemed--usually combined with nausea and vomiting. Rainbow, being an anxious little girl, didn't like going to the doctor to get treated. Mrs. Yebdog, would try to stealthily call, but somehow, Rainbow knew. Rainbow would cry to her mother for hours, "Am I going to get a shot." And usually she would--of an antibiotic. It seemed possible the Rainbow might lose her hearing because of all of the ear infections.

More on that later.

Another issue was Rainbow's vision. Sometime in pre-school a screening was done that revealed that at the tender age of four, Rainbow would need glasses. At the time this excited her, thinking glasses were a cool fashion accessory. She went to a special eye doctor, and picked out a pair of glasses she called "Cupcake Spice Brown." Eventually glasses would earn Rainbow the nickname "four-eyes".

She didn't know then that there would be other, more cruel names she would be called before she graduated high school.

Despite the problems with her eyes and ears, still no major red flags were raised with respect to Rainbow's health. Everyone, be it friends or family, noticed that she was a rather hyperactive child. This amused many, but sometimes frustrated her parents. be continued........

Sunday, June 14, 2009

The Missing "X" Again.

I was disturbed by something I read in the local paper today. A couple is suing because they were allegedly misinformed about their daughter's condition. A pre-natal test did NOT indicate the girl had Downs Syndrome, but after the girl was born, it became evident she did. The couple says had they known this, they would have aborted.

I don't usually write about my Turner's Syndrome, but this story reminded me of when I was first diagnosed at age 13. I felt like a freak. Hated being a "syndrome". And the book my parents were given seemed so condescending.

A brief reminder, TS is a chromosomal defect that affects some 1/2000 LIVE births. Only girls get TS. Those girls that become live births can have a multitude of "problems" ranging from infertility to heart and kidney problems. Often learning can be difficult for TS girls.

The book my parents were given was called "Good Things Come In Small Packages". What bothered me about that book was the FAQ section. It had questions like:
  • Are TS girls retarded?
  • Are they promiscuous?
And there were others, but the "retarded" thing stuck with me. So when I read the article today, it made me wonder what my parents would have done, had they known sooner of my TS. Of course they love me, and it's a moot point now. I'm 42, a college graduate, mom and wife. But still it makes me wonder, with today's pre-natal testing what lengths parents will go to to get the "perfect" baby and if a TS baby is too "imperfect".

Thursday, June 11, 2009

The Tale of the Chubby Programmer and the Short Assignment Editor

Sometime in either 1990 or 1991 it happened. I was working till midnight at KOIN-TV on the assignment desk, listening to a million scanners and dispatching crews as necessary.

 After my shift, I staggered home.  I was living with my parents at the time, as they felt sorry for me, and didn't want me to try and live on $5 an hour.

When I enter the house, I hear my dad's stereo  blaring in the basement.  I go downstairs and find a strange man on the couch, rocking out to Pink Floyd with my dad and sister.

Turns out this man works with my sister at a start-up company called Verdix. He had bragged about the awesomeness of his stereo, and wanted to hear my dad's, presumably to compare and contrast. My sister obliged, and invited him over.

As soon as the strange man stands up to shake my hand hello, I am almost frightened by the size of this creature--over six feet tall! I'm just shy of five feet.

"Hi, I'm Bruce," he might have said. "My dad always taught me to stand up when a lady is present."

I must have said "hello" back, but again, I was a little awestruck.

A couple of weeks after that meeting, my sister calls and asks me what I thought of Bruce, and if I would date him (provided he asked).

Sometime after THAT, Bruce calls. We spend three hours on the phone talking about Madonna, Frank Zappa, and Midnight Oil (all music acts). We finally discuss the idea of dating, and I tell him that I would love to go to a local pub, and then go to his house to listen to his stereo.

He was overjoyed! He thought he'd have to take me to an expensive place.

We date for a year, and live together another two, before getting engaged. I'll never forget the reaction I got from my dad.  Granted, it was late at night (11pm) but I called to tell my  parents anyway. Here's how I remember the exchange with my dad.

ME: Dad, Bruce and I are engaged.
DAD: Your mother's asleep, do you want me to wake her up?
ME:  No that's okay.
DAD: Are you happy?
ME: Yes.
DAD: Okay, I'll tell your mother (click).

June 11, 1994  we get married. Much has happened since then, but I have learned a couple of things from being married 15 years:

Opposites attract, and learn to love the roller coaster.

Wednesday, June 10, 2009

tears of a clown

It's a bitch being human. More to the point, it's a bitch having human feelings.  Right now I'm having too many--feelings that is.

Just yesterday, I was marveling at the sun.  Today--right now--it's raining.  

I have made many friends on my journey with cancer. I wish I could get used to the notion that they are sick, too, but every time I hear that one of my cancer friends has taken a turn for the worse, it feels like shock and awe, and not the good kind.

I know their worry, and I have cried their tears, but what can one do when one is helpless.

I need answers, and I simply haven't found any. I will continue to try to comfort my friends in any way that's useful, whether it's laughter, or tears of a clown.

Tuesday, June 9, 2009

Having a Moment.

It's  my favorite time of day--morning before anyone else awakens. Nothing but my coffee with skim milk, and a ray of sunshine streaming through the basement window. The peace before the chaos of getting everyone (including my husband) out of bed.

Today I was up just as the sun was rising. I watched the sun rise, and since then, have not been able to have a negative thought today.

It's supposed to rain later. I'm sure I'll have new thoughts then.  My moods change like the weather.

Until then, I'm worshipping the Sun God.

Thursday, June 4, 2009

Happy (belated) Birthday Dad!

Seventy-two years ago yesterday, a man named Elmer Bartelle Godbey was born. The world would never be the same.

About the time he turned 30, he became my dad.

I owe a lot of things to my dad, starting with my interest in music and writing. 
I would say I also get my sense of humor from him.  It's the kind of humor where you don't know the direction of the jokester's train of thought, or if he is really joking.

Dad chose to celebrate his 72 years on the planet relatively quietly.  We went to his favorite Chinese place, followed up by a visit to my sister's for lemon cheesecake that was to die for.

Ironically, on his birthday, I also visited his mother a.k.a. my grandma.

I would not be here without either of them.

Monday, June 1, 2009

June: A Month of Anniversaries

But first a mention of our son's 11th birthday, which was yesterday, May 31, 2009. Like any mom, I have vivid memories of the day he was born.  Here are but a few:
  • He was born to his birthmother, with me about six friends of hers in the room.
  • My husband was asked to wait outside, so he brought a science fiction book. I ran back and forth with updates.
  • We named our son Austin, because it was a name we and our birthmother could agree on.
  • She gave him his middle name "Kyle".
  • Our birthmother got a phone call right before Austin was born (and still took it).
  • The nurse handed Austin to me before his birthmother.
  • Austin was born naturally.
  • Austin got to stay with his birthmother a few days before we brought him home.
  • He was 8 lbs. 5 oz. at birth.
  • He's now over 90 pounds and taller than his mom.

Other important dates this month:

June 3:  Dad's 72nd birthday;
June 11: Our 15th wedding anniversary;
June 16: 3 year anniversary of my brain cancer diagnosis;
June 27:  3-year anniversary of my awake craniotomy to remove (most of) said cancer;
June 30: I'm a little fuzzy on the date of this one because I was in the hospital when it happened, but on (or around) this date a very dear friend of the family died suddenly.