I could write a book

I've been neglecting my blogging duties. I started a big writing project in November, and still working on it. I am trying to write an interesting book about me. It contains 6000 words so far, and is broken into three parts.

• being born with Turner Syndrome, a genetic condition that accounts for as many as 10 percent of all miscarriages. Yet, I am here. Though, one cannot be born with a genetic defect and live a completely normal life, and sometimes I have struggled to live among the "normal" people.
• living with brain cancer. Bam! One day I was well, the next day I was diagnosed with a life-threatening illness. I now have a huge piece of a brain missing. Think of how frustrating it is when your computer doesn't work, and you will have some idea what it's like living with cancer.
• parenting an adopted child. Having Turner Syndrome comes with infertility, but I still wanted to be a parent, so my husband and I adopted a son. Although every child is a gift, adopting a child is bittersweet and complicated. My book will describe some of the hiccups and speed bumps we have encountered in our parenting adventure.

So, I will probably be blogging more sporadically. I need to focus. I wonder who would want to read it, if and when it gets finished.

twists and turns in our adoption story

About four years ago, we were going to visit our son's birthmother.  We scoured our letters from her and tried every number on the letters with no luck. The purpose of the visit would be to meet our son's half-brother.

We thought she had disappeared. Letters kept coming back to us.  We got hold of her husband's phone number and called him.  He is the father of Austin's half-brother.

Shocking news.  Austin's birth mother is in jail, but for what, we don't know.

Until she writes to say that she was in a house where a fatal shooting happened, and did not contact authorities, therefore, making her an accessory.  She asks us not to tell Austin. I'm thinking she didn't want him thinking poorly of her.

After asking a professional for advice, we kept this secret.

But Austin did a Google search, seeking information on the ethnicity of his birth name (Kantak), and his birth mother's name came up, complete with her record.

"I found out about my birth mom," Austin announces.

As he's telling me this, it becomes clear that he thinks she has committed a murder and been sentenced to die.

Oh My God!

I tell him that she was in a room where a murder happened, but she didn't do the killing, and as for her sentence, I don't know what it is, only that she's appealing.

Yes, he is upset that we didn't tell him sooner, Yes, he is wondering if he will end up like his birth mother.  He is her blood kin, but choices play a big role in the mark we make on the world.  He will not necessarily be affected by his birth mother's choices, so much as the environment in which he grows up.

outsourcing

It has been almost a year since a neurologist strongly suggested that I not drive. As such, I have to "outsource" that task to others; friends, family, taxis, or my feet.

As of this writing my husband is out of town, meaning extra burden on other family members and/or friends. My sister had to take me to my son's parent-teacher conference. Both my sister and mom have to take my son to tutoring, while the Old Man is away.

So I'm trying to expand my network of potential drivers. I contacted Ride Connection, a transportation service for disabled people, and a volunteer will be talking me to my cancer writing group, which starts up again tomorrow. Another friend suggested that I contact the local chapter of the Cancer Society, and still another  said her daughter would be willing to drive me.

All of this requires better planning and organization on my part, so I can give potential drivers fair notice. Others can be more spontaneous with their plans.

It takes a village to me me.

my ode to pizza

Imagine there's no pizza
I can do that with ease
No crust below me
Above me only cheese


Imagine all the pizza
Eating til you puke
You may say I'm a glutton
But I'm very very nice
I hope some day you'll join me
For a beer and a slice....

Herman Cain's Ode to Pizza

self esteem

Two things are prompting this post, one is I'm seeing a number of males who have similar body-image/self esteem issues that females have. They want to lose weight, or they want more hair. The other is an article about Turner Syndrome forwarded to me by a woman in the TS community.

Regarding males and self esteem, its somewhat refreshing to know that males feel pressure to look good. God knows girls and women do, so why not men. I have to say though that I believe it's easier for a man to be overweight, for example, than it is for a woman. I think that is because I can honestly say that I have never judged a man, solely by his physical appearance.

Regarding the TS article, it was actually about how a girl with the syndrome can be diagnosed in the womb, so that HGH (human grown hormone) injections can start early. What bothered me about it was how in describing TS, the words abnormal and defective came up too often in reference the missing chromosome in TS girls (others have 46 chromosomes, TS girls have 45), and non existent secondary sex characteristics(breasts and womanly stature).

I think it was my 8th grade year, two boys, James Salisbury and Scott Blake, decided to play "Fuck with the dwarf". Scott told me James wanted to go out with me. He didn't. I assumed my looks had something to do with the prank. I do hope that before I die, I can put this unhappy incident in my life behind me.

In the meantime, I hope our society encourages and enforces the notion that beauty is not on the outside.

The Walk! 2011

This past Saturday (August 20) I once again participated in the Portland Brain Tumor Walk. I've been doing it since I was diagnosed. Even though technically the walk is for brain tumor research, I like to think that this is my way of making a contribution on behalf of all kinds of cancer. Although I have lost many brain buddies, this year I dedicated my walk to my friend Paula, who is battling cancer of her bile ducts.

I have a team I call Eden's Army, thus the visor. The team usually includes my mom, sister and husband. Last year, I had a few former classmates join me. This year I was gifted by the presence of two very cool people, Travis and Heather Smith.

My sister wasn't able to join us, because she was helping my nephew prepare for a performance of Shakespeare's Romeo and Juliet, and my mom was feeling a little sick to her stomach, so the "army" was me, T and H and my husband.

There was a huge crowd this year, and hundreds of thousands of dollars were raised. However, I don't do well in crowds. I'm always thinking I'm going to bump into someone. And the walk happened to fall on the hottest day of the year. My sister says, that because of the crowd issue, she will sit future walks out, though she will still support the cause.

I plan to do it as long as I can.