some secrets should stay secrets.

I have Turner Syndrome. If you don't know what it is, it's a genetic disorder due to a missing chromosome. For more info, try searching the Internet. Having this disorder makes me who I am, from my short stature, to being barren. Yet, I feel uncomfortable advertising it, because I don't want to be thought of as a syndrome, but as a person, but even when I look up TS on the Internet, I am shocked by what I see and read.

Example:  I found a piece on You Tube called "The Faces of Turner Syndrome". The video shows various women and girls saying things like, "I'm your teacher",  "I'm your nurse," etcetera. The beginning and end slogan is a young girl saying, "I'm like you, but I'm NOT like you." Exactly!  But should I let the public think I'm just like everyone else? In doing research for the book I'm writing I found out t,hat many girls with TS are miscarried, but yet I'm here. To hell with Survival of the fittest! Sometimes the weakest links survive.

But because I see so many doctors and I take so many medications, I have had to let the secret out. For example, a good doctor will want to know what medications a patient is taking, and the reason for taking it. Sometimes I am asked if I'm pregnant, or wishing to become pregnant, and I have to read chapter and verse on Turner Syndrome. There are a few doctors who don't know what the syndrome is, but that is a subject for another post.

I liked the Faces of Turner Syndrome video enough that I posted it on my Facebook page, because some of my FB friends are in the TS community. Nevertheless, in the future, I think I'll be quiet about it. Most people like to use FB for lighter banter.

moving on

As I write this, it is a Sunday. In two-days time, my beloved parents will move out of what was supposed to be their retirement home, and move IN to a retirement village, where their meals will be provided for them, and transportation provided, as needed.

This is all mostly good. Mom and dad will still  be living together, but the move was mostly prompted by my dad's declining health, and my mom's increasing lack of ability to take care of him. He has dementia, diabetes, glaucoma, and a history of heart disease. My mother has been the one to remind him to take his medicine, and take his verbal abuse, when symptoms make him frustrated. The house they live in now works fine for folks with physical disabilities, but not so much for people with  these kinds of issues.

I credit my dad for wanting me to be smart, go to college and work. He also passed on to me his love for music.  However, he cannot always remember that I have cancer, or how I am being treated, and that makes me sad. They will be closer to me, and my mother still plans on driving me places that Bruce can't.

I'm 45, but I still need both my parents, and love them.

Big Government

I've wanted to post this question on my Facebook account, but it's too political.  The question is: How is government run health care big government, and mandatory ultrasounds NOT big government. The stereotype is that the Democrats  want to rob Peter (you) to pay Paul (the less fortunate) and that's bad because the government shouldn't be our nanny. If you need help, it's your own fault, so just get a job.  It's that easy.

On the other hand, the lawmakers who make these kinds of arguments seem to be the first to want government in our bedrooms and lately, women's bodies. State legislatures around the country are trying to pass laws that would require ultrasounds and waiting periods before getting abortions. In Arizona, a law recently passed goes so far as to redefine when pregnancy begins. Personally, I am not for abortion, but I don't think women who have abortions do so easily, or without emotional or physical distress Call me crazy, but I don't think it's the government's business to make laws regarding our junk. I want to be in charge of my own body, whom I love, and whom I do or do not worship.

And I am not a republican, because I think the party wants to control the most personal parts of my life. If the Democratic Party is for Big Government, the Republican Party is too.

Cracks in the foundation

We grow up thinking that our parents are like super heroes. Just a hug from mom, or some words of praise from dad will make everything better. If we are sick, the parents' magic will  make us well. Nothing hurts as much as their disappointment.  They seem perfect.

But once a person gets to be my age, the parents are older too, and their perfections have perhaps been eroded by age, and frequent use.  A grown child's system is shocked to see that the people she counted on to kick her butt, and help her in so many ways, simply can't anymore. They need some help themselves.

In my case, my father, who is one of the coolest, funniest, and smartest individuals I've ever known, recently made the painful decision that it was time to give up driving, for safety reasons. He has vision problems, and is forgetful.  Meanwhile, my mother, once again has to be an emotional rock,exercising patience, when she wants to scream. She has had to do that too often. She deserves a break.


My husband's mom is currently laid up in a PT facility, following a second fracture in her back.  As of this writing, It does not sound like she is much better. Her back is basically as brittle as fire kindling. She has always been good about flying from Chicago to Portland to see us. We will have to start taking more trips there.

Having a life-threatening illness, I'm one to celebrate being alive.

For some, though, getting older sucks.

Lose a brain, gain a beemer.

Ever since I can remember, my husband has wanted a BMW. He first got the bug when our son was two years old. We headed into the sunset one day doing errands and we pull into a BMW (beemer) dealership.  He looked at a 2-series, because it was the only vehicle remotely in our price range. I killed Bruce's joy by asking to see the trunk.  It can't hold groceries, much less toddler paraphernalia, so no beemer, for now.

Flash forward to the present. My son is now 13, and I am not safe for the road, due to having a massive gaping gash in my head. I see no need for us to be a two car family.  I was pleasantly surprised when Bruce sold his Audi A4, which he liked, as it was sporty enough for him, and began driving our remaining vehicle, a Honda CRV. The Honda had roominess and fairly good gas mileage, but was apparently no fun for Bruce to drive. Lately, Bruce has been feeling confident enough in his job, that he is ready to take on the encumbrance of car payments. He goes out test driving while doing errands with our son, and it's all over! Bruce is in love, and when one is in love, no expense is too great. He takes me to see the car of his dreams. The only thing I care about is can anyone sit behind Bruce? Another is how much can we get for the CRV? Still another is the trunk size?

We were very pleased with the amount of our trade in, and so a love connection was made between us and a 528 sedan, thanks in part to the fact I cant drive anymore.  My days as a chauffeur are over. That door of independence is now officially closed.

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.