Sunday, February 24, 2008


As a parent, I often feel like I've got the "pulse" of each of my children pretty much down to an exact science. Gracie is my serious, often tentative child. She is genuinely concerned about a lot things which impact her life, and it often shows on her face. She has a worried expression most of her days, and we need to coax her into trying new things. Don't misunderstand me though. She loves to play, imagine, and get down to the business of being an almost 6 year old. I just have to remind her to have fun. Her innate nature is to try to act like an adult.

Meghan is my mischevious, carefree child. Generally, she could care less what other children or adults think of her. She has an innate sense of self-esteem, and I find myself reminding her to be empathetic toward others. Her favorite thing to do right now is find ways to annoy her big sister, Gracie. Like Grace, Meggie loves to play and imagine, and most days, she is singing nearly 60% of her awake hours.

It isn't often that one of them truly surprises me. I don't know if that is this mommy feeling lulled into a false sense of truly knowing my children or something else. To put it plainly, I've always been able to figure out what each one of them was thinking. Sometimes Grace wonders out loud, "How did Mommy know I was going to do that?" Honestly, I don't know how I know her so well. Call it a mother's intuition. Call it intelligent guessing. Call it being empathetic. Call it lucky.

I don't know what exactly to call it except that yesterday, Grace truly surprised me. It was an amazing sign of progress for her, which had me "beaming" from the inside out.

As I stated earlier, Grace is tentative about most things. She has always been tentative about learning how to swim. (I was tentative about her being exposed to the swimming pool chemical, chlorine, but that should be another blog post related to her Alpha-1.) Her comfort zone lies in her ability to be able to hold onto either me or Charlie while swiming. When she first began swimming lessons at 18 months old, we had to coax Grace into participating in the classes, which were filled with "torturous" singing of songs like motor boat or the wheels on the boat go round and round. I remember her wailing her way through several classes. Finally, she stopped the tantrums, but she would only cling onto the side of the pool with a death grip. Eventually, she switched her death grip from the side of the pool onto me or Charlie. Then, she eventually relaxed a bit, but was always sure to be holding onto Charlie or me with a firm grip.

Next came coaxing Grace into putting her mouth into the water to blow some simple bubbles. One day, we finally encouraged her to "talk to the fish." She finally told the fish that she didn't like any vegetables. It was amazing progress for Gracie, but it was painstaking, careful, plodding Grace. Eventually, she would put her face and nose into the water, but her eyes were always slammed shut during that process. Her first reaction was always to wipe the water from her eyes, and blink, blink, blink the water out too.

As she grew larger, her ability to coordinate her arms, legs, and breathing for a front crawl came together. It wasn't what I'd call graceful. Pun intended. :) It was Grace swimming, but I had one hand on her tummy always there to give her a subtle helping hand. A couple of times, I removed my hand to see that she could go a few strokes without my assistance. Yay! She would always notice my hand missing, and usually would sink knowing I let go. I knew it was about her confidence. We all knew she could swim by herself, but Grace didn't know that about herself. We'd have to wait for Grace to figure that out.

Just last week, Grace was able to swim on her back across the width of the pool. She liked swimming that way since her face wasn't in the water. She also did her requisite bobs during class, which was the greatest amount of progress for Grace in a long time. Charlie came home singing her praises. We were all proud of her.

Yesterday, Grace finally figured it all out. To use a driving metaphor, she rushed into first gear, flew into second, skipped right past third, and went directly to fourth. I suppose you want to know what she did, right?

This time, she swam 1/2 way across the pool using her front crawl with face in the water, arms scooping, and legs kicking in a coordinated effort. In addition, she dove for rings off the bottom of the pool. This meant that Gracie not only put her face into the water, but she opened her eyes under water to see the ring.

I was amazed, and she kept repeating, "This so fun, Mommy. I want to do it again."

Call me a surprised, beaming with pride mama!

Tuesday, February 19, 2008

Pay It Forward

I'll never forget the moments when Grace's pediatric gastroenterologist sat Charlie and I down in some rocking chairs in the NICU and said some words I couldn't quite comprehend. She had diagnosed Grace with Alpha-1 Antitrypsin Deficiency.

According to the Alpha-1 Foundation, the birth rate of Alpha-1 is approximately 1 in every 2500 births. This is actually similar to the birth rates for cystic fibrosis, and most readers of this blog likely recognize that condition. It is also passed in a similar genetic fashion to CF. A mother and a father much each pass the Alpha-1 gene to a child in order for a child to obtain Alpha-1 Antitrypsin Deficiency. CF is passed in the same way with a different gene. So, why is it that Alpha-1 is so underrecognized?

I admit that I had never heard of it before Grace was diagnosed. Although since then, I've heard it mentioned on the television shows ER and House. I'm sure as most people watched those shows they let the words Alpha-1 Antitrypsin Deficiency just skirt into their present and then quickly evaporate out of their memories. Rightfully so, I suppose. Alpha-1 Antitrypsin Deficiency doesn't exactly roll off the tongue with ease.

"Alpha-1 what? How do you spell that? Can you say that again?" were some of the questions I uttered in my state of shock. I even wondered what the Alpha-1 protein looked like. Image courtesy of Wikipedia:

So if you take that birth rate for Alpha-1 and apply that to the US population, that means there are about 100,000 people with Alpha-1 in the United States. Less than 10% of those Alphas are diagnosed.

So where did all the Alphas go? Well, a lot of those Alphas are living their lives without the knowledge that they are slowly losing lung or liver function. They don't know that they should be protecting themselves from cigarette smoke, maintaining a healthy body weight for good liver health, and paying attention to air quality.

Most Alphas don't know that they are Alphas.

Some of these Alphas have symptoms already. They chalk it up to being out of shape. They might be diagnosed with COPD, a catch-all term for pulmonary issues. They are accused of being smokers or alcoholics. They are alone without critical information to help them. They don't know that there is a treatment for Alpha-1. There are intravenously administered products which replace the Alpha-1 protein in the bloodstream. This medicine doesn't correct lung damage already sustained, but it can maintain current lung function. This medicine is not approved in children though, so my girls can't have it yet. :(

So where am I going with this rambling? My children are diagnosed, and I view that as a blessing. I can help them to assimilate Alpha-1 into their lives. It will not come as a shock to them that they have Alpha-1. They already call themselves Alphas, and while they may not completely understand that, I can help them to understand as they grow. Therein lies my power in this situation. I do have some control. I can help them. I may not save their lives from Alpha-1, but I can remind them everyday that they have lives and to enjoy each moment like it is their last.

Not only can I help my girls, I can help others in the Alpha-1 community. From time-to-time, I meet parents of newly diagnosed children who have Alpha-1. Most of the time, I meet these parents online. There stories aren't the same as mine, but they are familiar. Their stories display a combination of fear, guilt, and anxiety for the future. Often, all that they hear/see is the worst possible outcome. I can help them see the shades of gray that make up Alpha-1.

Each individual with Alpha-1 follows his/her own path on the journey of Alpha-1. There is no way to predict how or when Alpha-1 will run its course. As a proud "mama bear" to two beauties with Alpha-1, it is often difficult for me to acknowledge the true reality of what that means. Denial is my friend, and I'm sure I'm not the only one who uses it as a coping mechanism.

I only hope that by sharing my thoughts here in cyberspace that I can help others dealing with Alpha-1 in their lives...whether that is yourself, your loved ones, or your acquaintances. I know it helps me to have my blog as a release...a release of stress, of worry, and of fears.

It helps me to pay it forward.

Sunday, February 17, 2008

Happy Birthday Timmy

My baby brother, Tim, is 23 today.

Gosh, I remember when he was 5, and visited me in my college dorm while dragging around his security blanket. Where has the time gone?

I hope you had a great day Timmy. I love you.


Long Overdue

Michelle at In the Life of a Child awarded me with the Daily Dose award. :) The award is supposed to be passed along to “All the blogs that you’ve discovered that you can’t possibly live without. They make you laugh, cry, think and feel connected every time you read a post. They give you a thrill as you see them loading into your browser and you get an equally satisfying thrill when you see that they have commented on your blog.” Michelle, you have become a true cyberfriend, and I thank you for stumbling upon my blog. I applaud and appreciate your eloquence and ability to remind me that life changing medical issues still qualify as a life.

Michelle also granted me with these awards, and each one made me feel special. I've never received a blog award until Michelle gave me several. They were uplifting, and I hope they are for others as well.

So since the point of a blog award is to pass it along, here I go:

These ladies are my preeclampsia survivor friends, and I think I would have gone a little crazy had I not had my PE survivor community to hold me up in dark days. You ladies deserve all of these awards. Please pass them on!

Denise at A Woman With Hobbit Feet

Amy at Living With Grace

Mama at Mama Really Needs a Nap

Christie at The Mis-Adventures of Captain Poopy

Sabrina at PE Mommy

Lori at Blue Eyed Bunch

Cara at The Stevens Family

4onfaith at Belphia

Kate at Mother Words: Mothers Who Write

There is one more person I want to acknowledge here, but she is not a blogger. I visit with my long lost twin, jen_miracles, on the Preeclampsia Survivors discussion forum just about everyday. I "met" her shortly after Meghan was born. Like me, she developed severe preeclampsia twice, and earlier the second time around. This is a rare way to develop it, and she and I have that in common among some other things. Jen, if you had a blog, you'd get these awards too. :)

Saturday, February 16, 2008


As I drove the van to the median and took a left turn onto Capitol Drive, I was suddenly behind quite a line of cars. It was morning drive time, and I had just dropped Grace off at school. I was on my way to work, and it was like most of my mornings. The only difference of late was that my city had been blasted by one snow storm after another. The medians and curbs along the boulevard had mounds of snow stacked up about four to five feet high. Driving down most streets is like driving down in a tunnel. It is difficult to see what is on the other side of the mounds.

I was only on Capitol drive for about ten blocks and then I took my usual right turn onto 92nd Street. Ahead of my mini-van was an emerald green sedan, an American car of some kind. The green car was in the right lane, and I moved over into the left lane.

At this point, our cars were now neck and neck driving down 92nd Street. Most of the snow had melted on the pavement, but there were some spots where the salt hadn't completed its job yet. The snow was mounded up on the curbs and medians in the same fashion as all the other streets. The snowy landscape was intensely bright, and my sun visor was helping to shield my eyes from the bright sun. Slushy puddles had formed since some of the snow had started to melt. I could hear whooshing sounds underneath the tires of my van, and I was about to approach an area of the road where the snow had been reduced to a grayish version of sandy slush. I slowed as I approached the gray mess. I'm glad I did because what happened next is one of those life events that takes your breath away. It was one of those moments where time seems to slow, and get very sureal.

Suddenly, the green sedan veered left into my lane.

How to recount this is difficult since it is not what I would characterize as logical or sequential. It is rather my disjointed sensory experience than anything else.

The green car was suddenly diagonally placed into my lane directly in front of my mini-van. He had moved over without using his turn signal. His car was in such close proximity to mine that it reminded me of two cars intimately parallel parked on the side of a road, except we weren't parked. We were in full motion at about 35 miles per hour. I heard myself scream in a "aaahhhhh ahhhhhhh ahhhhhh" way.

On instinct, my right foot slammed on the brake. My arms were tensed up on the steering wheel. I lifted my right hand off the steering wheel, and pounded on the horn so that it was one long continuous blast. I felt my van's wheels sliding on the snow under the tires. The van's sensors were flashing at me in a ferocious yellow blinking way as if to say, "Slow down stupid. You are sliding. What the heck do you think you are doing?"

The antilock braking system suddenly engaged in an attempt to stop the van. The stop/start thuding under my right foot was getting rapidly faster in an almost machine gun firing sequence. The green car kept coming and coming and coming. My work bag, which was on the passenger seat, suddenly flew forward into the floor of the van.

At this point, I knew I was going to T-bone the green car. I just knew it. I could feel it in my bones. I knew it was a fact. My thoughts kept repeating themselves, "I'm going to hit this idiot. I'm going to hit him. I'm going to hit him. Oh my God, I'm going to hit him. Aaaaahhhhhh! Aaaaaahhhhhhhh!"

Then, my brakes finally engaged. The brakes instantly stopped the wheels from spinning, and brought my van to a sudden stop. It felt like the body of the van lurched forward on the chassis. My hand slipped off the horn. My head and neck were flung forward toward the steering wheel, but my seat belt was locked in place to keep me where I should have been. I didn't hit the green car, but we were "this close." If I had to guess, I'd guess we were 1/2 inch away from each other. Too close for comfort.

I instantly wondered if my wheels had suddenly found a dry spot on the pavement, and I also thanked God for the inventor of anti-lock brakes, traction control, and electronic stability control. I never give these things a second thought usually, but there I was trying to picture some incredible MENSA-smart engineer. Who was this person?

Then my thoughts returned to the green car. It had darted over into a turning bay in the median, and kept on going. It finally sped into the parking lot of a Health Care center.

Outloud, I said, "You'd better have an emergency, buddy!"

I noticed in my rear view mirror that traffic was approaching my mini-van from behind, so I lifted my foot off the brake and got out of their way. As I drove down the left-lane past the health care center, I was glaring at the green car. I just had to know what the heck happened. I had to know why he had nearly caused a serious collision.

Guess what?

He was on his cell phone. There was no emergency.


I will never understand.

Tears welled up in my eyes. I felt my body begin to shudder from the adrenaline released. Expletives erupted from my mouth. He had nearly injured or killed me, and all because his phone call was "too important" to pay attention to driving. Ugh.

Something intervened that morning. I don't know if it was fate or my guardian angel or luck or simply the miracle of mini-van engineering. I'm here to write this recounting, and I thank God for my life.

The green car keeps popping up in my dreams, in my day dreams, and especially in random moments. Perhaps it is a bit post-traumatic? Perhaps it is that I'm still mad at what nearly happened. I don't know for sure. I just know that I'm thanking God for Gabriel Voisin, the inventor of anti-lock brakes for aircraft. His invention led to the invention of ABS for automobiles.

Technology helped to keep me safe that day, but I'm not ruling out any guardian angels or higher power. He certainly works in mysterious ways.

My muscles still ache from the experience, but overall, I'm fine.

Thursday, February 14, 2008

Happy Valentine's Day!

The day started out well with an exchange of valentines among each of us in the B family. On my way to work though, I had a pretty significant near miss car accident. I had to make a very sudden stop, and now I'm sore in a variety of places. I may blog about that experience, but tonight I'm exhausted. Enjoy the pictures. :) Jen

Tuesday, February 12, 2008

Mystery Diagnosis: Alpha-1 & Len Geiger

When I went to the national Alpha-1 conference a few years ago, I sat down next to a very clean cut looking man. He introduced himself as Len, and he immediately asked me my story and how I came into the Alpha-1 community. He shared his story with me too, and like most of the stories I've heard from Alphas, his touched my heart. Please enjoy these videos of Len, who appeared on the television show, Mystery Diagnosis. Kudos to Len for getting the word out about Alpha-1!

Click on each video to watch Len's story. Part 1 is 7 minutes, 15 seconds, and part 2 is 8 minutes, 16 seconds.

Death and Politics

I just love the way Grace's thoughts meander during our conversations. Tonight, we were enjoying a "mommy and me" night together as Meghan and Daddy had gone off to watch a UWM Panthers basketball game.

As we enjoyed our dinner, Grace gleefully stuffed rice into her mouth as she said, "Mommy, I'm going to miss you when you die. I love you so much."

My first reaction was to chuckle as this didn't seem to be typical dinnertime conversation around the B family dinner table, but it made me smile nonetheless. Afterall, what mommy doesn't thoroughly enjoy having a child's unabiding love?

"Why are you laughing Mommy?"

Whoops, busted... :)

"Well Gracie, it makes me so happy that you'll miss me when I die and go to Heaven, but I really don't think you need to worry about that. I'm not sick and I'm not awfully old. You and I will have time together before I go off to Heaven."

"You ARE old Mommy."

Sigh. I forgot what it feels like to be five, almost 6, with a plethora of your lifetime ahead of you. I especially forgot how it felt to believe that...shock of all shocks...35 is so incredibly old. Aw, to be a child again...

"I'm not that old Grace. I'm not even old enough to be president of the United States yet."

"What is principal?"

"Do you mean president, Grace?"

"Uh huh."

"You have a principal at your school. He is in charge of the school. Well, a president is in charge of the United States where we live."

"Oh. Can a girl be president?" Aha, that's my girl. My heart swelled with pride. I've been working hard to teach her that women are just as capable and deserving as men are.

"Oh yes, a woman can be president. We haven't had one yet though."


"There are a lot of reasons why, but I think we will have a woman president while you are alive Gracie. I don't know who it will be, but I'm hoping that it happens because it will help little girls like you to know that they can be leaders and help people in our country.

Right now, there is a lady running for president. Her name is Hilary."

"What is running for president?"

"In our country, the people who want to be in be hard to tell people that they want to be president. This is called running for president."

"I think you should be president, Mommy." More heart swelling with pride. :)

"Well Gracie, I'm not old enough to be president yet. You have to be 36 to be president. Daddy is old enough."

"Why do you have to be that old?"

"Well, the people who made our country wanted the president be wise so they made that rule. People who live a long time are often called wise or smart because they have lived a long time and learned a lot. The people who made the United States thought that 36-year olds would be smart enough, but even people who are 100 can be president."

"One hundred! That is really, really old."

"Yes, it is."

"Who is our president right now?"

"George Bush is our president, but his job is almost done. You can only be president for a total of 8 years. Now there are people running for president so that when George Bush is finished, we'll have a new president."

"Eight years! That is a long time." I suppose it is a long time in the lifetime of an almost six year old. That made me chuckle.

"Yes, it is. Right now, there are three people who are running for president. They are Hilary Clinton, Barack Obama, and John McCain."

"Barack! That is funny name. Why does he have that name?"

"Because his mommy wanted to name him that, Grace."


"There are lots of different names for people. Barack Obama is a fine name just like Hilary or John, the other people running for president. We should never laugh at someone's name."

"Okay Mama. I want to vote for the person you want to vote for."

"Well Grace, I hope you vote for the person you choose when you grow up. It is important for you to make your own decision about how to vote."

"Oh. After dinner, can I watch a Barbie DVD?" There it was: our first conversation about death and politics, and it was over in the flash of a thought in Grace's brain.

Monday, February 11, 2008

Another Meghanism

Tonight as I was tucking Meghan into bed, I kissed her cheek.

"Ooooh Meghan. You smell fresh and clean from your bath. I love it when you smell fresh and clean."

Meghan responded in her typical tongue-in-cheek fashion, "I only like when I'm dirty. I like to smell fresh and dirty."


Sunday, February 10, 2008

Sunday, February 03, 2008

Mommy's Answers to Life's Questions

Or rather, my crude attempt at answering the questions of a three and 1/2 year old. LOL

Tonight, as I was putting the girls to bed, we had quite a profound conversation, which taught me a little more about my daughters and their innate abilty to understand their surroundings, others in their life, and others' belief systems. While we have taught our children a specific belief system, I applaud and welcome learning about other belief systems. It helps the girls to see the larger world, while also encouraging them to accept diversity. Growing up with Alpha-1 Antitrypsin Deficiency will already provide the girls with a different life vantage. I hope to cultivate diplomacy and understanding in them as well.

I don't have a set plan for sharing information with them. Rather I try to use simple, everyday interactions as opportunities for learning, sharing, and explaining. With that said, here is one of those simple conversations, which also helps to remind me of life's simplicities.

"Mommy, wook at my finger. My owie hurts."

"Oh Meghan, I think it is getting better."

"It is not wed (red) anymore, Mama."

"That's right! It has a scab on it now. Your body is working hard at putting your owie back together. Our bodies are really good at fixing themselves."

"Why my body do that Mama?"

"Because God made us that way, Meghan. Isn't that so special that we can fix our own owies?"

Meghan responded, "Jesus is God, Mama."

"You're kind of right Meghan. God is Jesus' father. Jesus is God's son. They are family like we are."

Why I decided to add this statement, I'm not quite certain except that it was a very girly moment. Children are so completely "black and white" and are often confused by shades of gray until they get older. "Did you know that some people believe God is a woman?"

At this point, Grace joined the conversation. "Some people call God mother nature, Mommy."

As I was suddenly shocked at Grace's ability to see one of those shades of gray, I responded, "You're right Grace. Some people call Him that."

Meghan's thoughts returned to the cut on her finger, "My owie is gettin' betta, Mama."

"Yes. Yes, it is Meghan. Now, let's sing our goodnight songs girls."

"Okay Mama."

Saturday, February 02, 2008

10,000 Hits


Wow! My blog has surpassed 10,000 hits. Geez! I get sick for a few days with a nasty cold virus, and I get a 10,000th visit to my blog. Wouldn't you know it? It was a visit from across the pond in the United Kingdom, and it was a cross-referral from a post I made on the Alpha-1 Association discussion forum.

I can't believe so many people are reading my blog. Of course, since I'm sometimes bummed that few people leave me comments, I'd like to solicit any family, friends, or lurkers to delurk and leave me a message. It helps me to know that you're reading and care about what I write. Thank you!