Wednesday, August 29, 2007

Ode to Clean Air

Well, I'm just jokin' about the ode part...

Charlie and I just got back from sin city, aka Las Vegas. We attended our dear friend Shanna's wedding to Steve. It was 107 that day, and well, I've never worn sun screen to a wedding before. :)

In any case, it was fun to get some one-on-one time with my husband. It was down right decadent at times what with us being able to lie down on the bed, and lazily flip channels without a child whining something to the effect of "I wanna watch Dora!" I missed the girls, and they were frequently our topic of conversation.

What I didn't like about Las Vegas was the amount of cigarette and cigar smoke I encountered on what seemed to happen in 30-second intervals. Blech! Now that I've been educated about how exposure to one cigarette completely wipes out the available Alpha-1 hanging out in a person's lungs, I'm a whole lot neurotic about avoiding the stuff.

At one point, Charlie and I were walking to our elevator to go up to our room, and there were 4 young men (approximately 21 years old) carrying pints of beer, and smoking swisher sweets. Eeewwww! Immediately I tried to avoid them. Well upon entering the area outside of the elevators, the men came strolling in past humongous signs that read "It is against the law in Nevada to smoke in this location." Pas de fumer!!!!! A-holes!

I pointed to the sign, and said "You can't smoke those in here." One kid acknowledged what I said, and promptly extinguished his cigar in that sandy stuff...don't really know what it is called. Anyway, the others blew me off, and of course, the elevator comes and they decide to get on still smoking. So...

I got off the elevator, and said, "I'm not riding if you're getting on!" A-holes!

They then decided to leave the elevator because I've supposedly made them feel uncomfortable. Yeah right. One kid says, "We're really nice boys maam. We're from Canada." Meanwhile I've crossed my arms in anger, and the elevator doors close. As the elevator went up, I heard, "Bitch!" Charlie got mad and yelled back "F you!"

I know that youth makes people feel invulnerable, but it just makes me cringe to see those men smoking. I mean there are so many Alphas who'd love to have their healthy lungs, and there they go wasting them. Sometimes, I just don't get it.

Tuesday, August 21, 2007

An Alpha Realization

As I was tucking Meghan into bed tonight, I told her that she would be going to the eye doctor tomorrow.

"Why'm goin' ta the eye docta Momma?" Meghan inquired.

"To get your eyes checked out Meggie so that they stay healthy. Sometimes, kids who were born too early need to get glasses like the ones I'm wearing Meggie. Daddy will take you to see if your eyes need glasses."

Meghan responded, "Okay, Mommy."

Grace joined in, "Mommy were you born too early?"

"No honey, I wasn't born too early. I was born one week late."

"Did your mommy get sick when you were in her tummy?"

"No honey, but my mommy's mommy got sick from those nasty "party bugs" called preeclampsia like me.

"Mom, when can we make the Alpha go away?" Grace pondered.

Ah ha, there it is again. Gracie is growing up so quickly now, and her self-realization is expanding.

"Alpha-1 is not party bugs Gracie. Honey, we can't make the Alpha go away. It is part of who you are. All that we can do is take care of ourselves by staying healthy. It is in your genes, and I'm not talking about the jeans that you wear on your legs."

"How come Havalah got a new liver Mommy?"

"Her liver got very sick, and she almost had to go to heaven. Thankfully, they put a new liver inside Havalah, and she is better now. She didn't have Alpha honey. She had something else wrong with her liver."


"Honey, if you have questions about Alpha-1, always ask Mommy. We can figure out your questions together. Okay?"

"Uh huh."

"Now, you get some sleep."

Friday, August 17, 2007


I'm not sure where to begin except that I was on the receiving end of someone's rage today. I'm confused.

When I was about 5, I visited my grandparents' home. My sister and I had been playing in the side yard of the house near the garden. We were running and jumping and doing what little girls do best. At some point, I decided to go inside to use the bathroom. I scrambled up the steps, and opened the screen door. An old-fashioned black and white tile kitchen floor appeared beneath my feet. On my right, I could see the thick pedastal of the oak kitchen table. What shocked me into paying attention was the arguing and yelling and swearing. I didn't know what it was about, but the argument was quickly escalating. My grandfather grabbed my grandmother's wrist in a rapid wrenching motion. Grandma swore at Grandpa. I must have gasped because the next thing I heard was my grandfather shouting at me, "You! You get outta here." It freaked me out, and I quickly retreated. I ran as fast as I could, and grabbed my little sister. We ran into the garage, and crouched down low. My sister was confused, but I didn't want to say anything. I just stared at the cement block walls of the garage, and collected myself. I recovered in a few minutes. When my mom arrived, I told her what had happened. I don't recall what she said, but I will never forget seeing unbottled rage for the first time. Ever since, I have dreamt of what I saw.

To be honest, today's run-in with rage scared the hell out of me again. It only lasted about 30 seconds, but it was enough to make me question a whole lot of the decisions I've made in my adult life. I wasn't prepared for it, and it was petrifying.

I spoke a few words before they were cut off abruptly. A fist came crashing down on the table close to me. Arms went flinging up and a foot slammed a chair backward. The chair fell over. Another person was nearly injured by the chair falling. As I sat in the chair, a pointed index finger was within a few milimeters of my nose. It was meant to intimidate me, and the person succeeded.

Although I did initially tremble with fear, my next reaction was one of preservation. To put it bluntly, I was not going to be subjected to that rage, and I removed myself from the situation. I had to protect myself.

When I was a teenager, I dated someone who had a problem with rage. At one point that person punched the slate top of a pool table in anger. His rage was never taken out on me, but I've always wondered to myself. If I had stayed with that person, would that rage ever have been redirected into the form of hurting me? I suppose I'll never know, but I do know this:

When the fuse was lit, there was no way I could calm the person down today. It literally was like TNT was about to blow, and well, all of us around the enraged person knew it was going to happen. It was glaringly obvious in demeanor, expression, and in a bright red face. One ran away to try to hide. Another shook and burst into tears. All I wanted to do was diffuse the situation. I wanted it to stop. It was terrifying me and those around me. It was not warranted. It was not deserved. It was not appropriate. It was not fair. I will never forget it.

Why can't we all just get along? Why does the stupidest thing set someone off? Why am I shaking as I write this? Why?

Thursday, August 16, 2007

Connecting the dots...

Is is possible for a 5-year old to begin philosophical thinking? You know. The kind of person who thinks of how we came to be. I'm reminded of that character on Northern Exposure who was the disk jockey. Chris was his name. In one episode, Chris wonders if we are a flea on the tick's back or something to that effect. Tonight, Grace seemed to be spiraling into a philosophical debate with herself and me.

"Mom, Zoe says that when we go to Heaven that our whole body goes in the our skin and everything. I told her it doesn't."

"Grace, everyone has a different idea of what happens when we go to Heaven. Next time Zoe talks about that, tell her she needs to ask her mommy and daddy about it. Okay?

Are you talking about how we believe that our soul goes to Heaven when we die? You know the part inside of us that thinks and feels and knows we are Gracie or Mommy or Meggie."

"Uh huh. Zoe says it doesn't. I don't ever want to grow up and get old."

"Grace, it takes a long time to grow up. You don't need to worry about getting old and becoming a lady."

"I don't ever want to have a baby and be a lady."

"Gracie, you don't have to do anything you don't want to do when you are an adult, but honey, we all grow up. We can't make our growth stop."

"Who goes to Heaven, Mommy? Does everybody?"

"Not everyone goes to Heaven Grace."

"Why not?"

"You have to be a good person to go to Heaven."

"Am I good Mommy?"

"Yes, Grace, you are very good. You'll go to Heaven when you are an old lady."

Meanwhile, I'm thinking, "Where is this coming from? Why is Gracie so obsessed with death, dying, and Heaven. More importantly, why are we talking about this at nine o'clock at night?"

"Mom, where is Heaven?"

"Uh. It is a place very, very high in the sky up past the clouds where the angels live...where unicorns and pegasus horses live. It is a beautiful place."

"Why do unicorns and pegusus live there? You said they aren't real."

"You're right Grace. They aren't real. Mom is trying to tell you that Heaven is a beautiful place where you'll go when you are a very old lady. (Fingers crossed.) I've never been there so I don't know for sure. We live on a big ball called Earth."

"Mom, IT IS NOT A BALL! It is called Earth and it is a planet."

"Alright Grace! It is shaped like a ball."

"It is a very large. Mom, who told you about Heaven?"

"My mommy and daddy told me about it."

"Who told them?"

"I suppose we all learned it from Jesus."

"How does Jesus know?" Questions were coming out in rapid fire sequence...bam, stuttering mom, bam, more stuttering mom, bam, bam, more bumbling stuttering mom, bam, bam, bam...

"Where is Jesus? Who is he? How do we know him?"

"Grace, you learned about Jesus at your day care, right?"

"Uh huh."

"You tell me about Jesus."

"I don't wanna Mommy."


"Where did we come from Mommy? Who lived before us?"

"The dinosaurs."

"No, Mommy, not the dinosaurs. Which people lived before you and me?"

"Well, let's see. Your Grandma Kathy's mommy is Grandma Lorraine, right?"

"Uh huh."

"Grandma Lorraine's mommy and daddy lived before us, right?"


"Grace, it is time to go to sleep honey."

"Mommy, I want to talk. I want to talk to you."

"Grace, we can talk and figure stuff out together anytime honey. You are yawning, and well, Mommy, needs to get some rest too. I'm turning out the lights now."

"Okay Mommy. Sing me Cici and Chickory-Chick."

Friday, August 03, 2007

Visit to GI Clinic

Well, today was a big day for the girls. We went in for the annual liver check-ups. Last year had been a very difficult visit since Grace was quite distressed by the requisite lab work. She attempted to bite the hand of the lab tech last year. I suppose remembering that fact heightened my anxiety too.

I had spent most of the morning preparing the girls for what was about to happen. I described how Dr. B would talk about what had happened in the last year. We also went over and pretended to have Dr. B check our livers. We tap, tap, tapped on each others tummies and pressed down gently to figure out if we could feel our spleens. It was something I had to do. My kids need a perfect amount of prep time, but I have trouble determining what that amount of time is.

Before the kids woke up that morning, I had spent a few minutes trying to figure out how to approach them about the visit. "Should I tell them about the labs? How do I tell them about the labs? Gosh, I don't want Grace to go balistic again. I wonder how Meghan will do this year."

I know that these are my issues, and I must be careful not to project my fears onto my girls. Besides that lingering fear of what will happen to my girls, I find the constant questioning of my approach to Alpha-1 tiring. Most of my friends will tell me I'm a good mom because I question myself, but this affirmation doesn't make those questions stop inside my head. Maybe it is all just normal "mommy" worries, but I feel like the Alpha-1 adds yet another layer of complexity to my life.

The actual visit went quite well. Grace bravely jumped up on the exam table without coaxing. Dr. B examined her, and exclaimed, "I don't feel her spleen, and her liver is not enlarged." I breathed a sigh of relief. It was Meghan's turn next.

In a perfectly opposite reaction to what I had envisioned, Meghan promptly started to cry and refused to cooperate. She squirmed, twisted, whined, and cried through the entire exam which took place on part of my lap as well as Dr. B's lap. Again, Dr. B said that all was well. A weight seemed to be lifted off my shoulders. Or should I say my lap? ha ha

So, the girls' Alpha-1 is so far staying pretty dormant in their livers. That is great news, and I pray this trend continues. Grace is now 3 feet, 9 inches tall, and weighs 46.8 pounds. Meghan is just shy of 3 feet tall, and has made some small gains again. She is up to 26 pounds, 8 ounces. She falls between the 5-10th percentiles for height and weight on the female growth charts.

Both of them had liver labs drawn today. Grace had an extra set of tests run though. We reported that Grace has bloody noses here and there, but has always been a kid who bruises easily. So, Dr B. ordered a clotting time study, which just meant an extra couple of tubes of blood. All of this went right over Grace's head so she is none the wiser. Whew!

I'm pretty confident that each of my girls will have mild elevations in ALT/AST, and Grace's clotting time will come out normal as it did when the test was run when she was 2. Okay. I should probably say that I'm crossing my fingers for those results.

As you can see, I struggle with denial versus reality versus maintaining a normal childhood experience for my girls. Both of them identify themselves as Alphas, but I still don't think they quite "get" what Alpha-1 is yet. I wonder how much longer I can help maintain that blissful ignorance. I wonder if my girls will appreciate how difficult the one-at-a-time decisions were when they get older. Only time will tell, but I wonder. Who wouldn't?

Thursday, August 02, 2007

Reality Setting In

Tomorrow, my girls go for their liver checks at the GI clinic.

Why does it always send me into an inner panic mode? Well, I can answer that question, but I guess this just an Alpha mom voicing her inner most fears. Please God, please let everything be fine.

Oh and God, please help Gracie with her anxiety over blood draws. Last time, she tried to bite the lab tech, and well, we need some bravery Lord. Please?

A humble Alpha mom,


Wednesday, August 01, 2007

Talecris Sues Baxter

The Delware IP Law Blog is reporting "Baxter Loses Bid To Have Patent Declared Invalid for Indefiniteness."

Augmentation therapy is big pharmaceutical business in the Alpha-1 community. I suppose this goes on more than most of us know. As a parent of Alphas, I hope this kind of drama stays far, far away from my girls as they get older.