Wednesday, November 28, 2007

In Memory of a Beautiful Angel

Just yesterday, I read this on a blog of a Preeclampsia Survivor who lost her 22 week twin sons. I love this sentiment.

The Buddhists believe that babies lost before they live are souls that have already taken many turns on this earth, and they have already endured all the suffering they needed to. They merely needed to touch on this earth one last time long enough to be loved, and they get to stop being reincarnated and go straight to Nirvana.

We love you Tante.

Wednesday, November 21, 2007

Happy Birthday Mom

Today is my mom's 58th birthday. I hope you have a great day Mom. Love you and miss you.

Monday, November 19, 2007

Happy Birthday Jen

Happy 35th to my oldest, dearest friend. I miss you.

My Refound Love

When I was a child in the early years of grade school, I was quickly labeled as a "slow learner." In fact, my kindergarten teacher wanted to hold me back a year, but my mother refused. I remember seeing her face as she emphatically told Mrs. Johnson, "She is ready. We are not holding her back."

I didn't quite understand what was going on, and actually thought it would be lovely to stay in Mrs. Johnson's room. She was a very kind, nurturing teacher who had a "grandmother-like" quality to her. I loved getting hugs from her. In any case, I made the move into first grade at the age of 5. Yes, I was young. My birthday was actually five weeks before the December 1st cut off date though. Still, I started first grade as a 5 year old, and yes, I had peers who were up to 1 1/2 years older than me.

As I reflect on that using my adult perspective, I think that I should have been held back. Essentially, I was immediately put at an age disadvantage in first grade. I often wonder if I had stayed another year in "warm and fuzzy" kindergarten, would I have received the "slow learner" designation? I'll never know, but what I do know is that my early start to learning helped shaped some of my misguided notion that I'm not intelligent.

Reading and writing came very (is there a way to stretch that word out?) slowly for me. In third grade, I finally got it. Before then, I remember taking my dad's paper back novels and reading the word "the" over and over again because it was a word that I could read. It made me feel good to know I could read it, and often times, I underlined the word "the" over and over again in Dad's novels.

In any case, I was often a child who was in her own world. It took me several years to understand that I was a "slow learner." Fortunately for me, my kindergarten teacher had recommended a private school which had specialized education. Upon enrolling in Saint Bernard's school, I was given an individually guided education plan. This plan allowed me to learn at my own pace in my own time. I thrived in that until the school dropped the format. Then, and only then, did I realize that I was dumb, stupid, slow, or whatever pigeon-hole in which my classmates placed me.

It was a harsh realization. Thank God I received a teacher in the seventh grade who saw something in me. Miss Reeseman noticed that I could "express myself." I was confused by what that meant, and often times, I was lost when she would force me to designate a piece of writing as literal or interpretive and then prove my hypothesis. I struggled and struggled with it, but she kept pushing and pushing and pushing me. "I know you can do this, Jenny. You can express yourself." She even made me enter a local writing competition, and low and behold, I won. The Daughters of the American Revolution loved my essay on the Statue of Liberty. My Grandpa 'Mood was so proud that I won too. "Darlin' did you know that you could be a member of the DAR?"

Miss Reeseman discovered my writing abilities, and as I grew up in high school, I began to take more and more writing classes. Grammar became my friend. Well, sort of.

I earned a specialized degree in journalism in college, and then promptly started writing my heart out as a professional technical writer for a financial services company. Somewhere in leaving college and beginning my work life, I lost creative writing. I don't know why. I guess it was all those exciting user manuals and online help I was writing. LOL

Then in 2004, my daughter Meghan was born 13 weeks too soon. I began my first web journal to document the comings and goings of Meghan's life in NICU. I painstakingly began to document what was happening to her because it was all that I could do while others saved her life. In those early "blogging" days, I began to let little bits and pieces of me come out in those posts. It was a freeing experience. Writing was cathartic.

Soon, I decided to create a different Caringbridge page where I would write about the girls' journey with Alpha-1. That too brought out more and more of my own observations while documenting the achievements and milestones of Grace and Meghan. Eventually, I started this blog, and now I feel very much at home here in my little corner of cyberspace.

This weekend, someone asked me why I blog. "You write all that stuff for strangers." My first thought was that this person should read my blog to understand. My answer was this:

I blog to be creative, to feel a part of a larger world, to make myself feel better. Writing is a part of me. I cannot separate it from myself. It is an integral part of me and my self-esteem.

Thanks Miss Reeseman. I'll never forget the gigantic impact you made on my life even though I did forget your first name.

Friday, November 16, 2007

Remedial Parenting?

Meghan toddled out of her room, and came up to my side of the bed. "Mommy, it is morning time. The sun came up."

"I know Meghan, but Mommy is still very sleepy. Come up here with me so we can snuggle?" She grabbed a hold of the comforter with both hands and hoisted her foot up on the wood slat, which holds the head board and the foot board together. She tumbled onto my knees and crawled up to Charlie's pillow. Her polar bear "feety" pajamas were chilly since Meghan hates to use blankets at night. She doesn't like to feel constricted.

Meghan wispered, "Mom, can we watch the exercise lady?" (Meghan enjoys watching a woman on PBS who does yoga.)

"In a little while Meghan, Mommy doesn't want the TV on yet."

"Where's Daddy?" she inquired.

"He is downstairs making your lunch for today."

"Oh," she replied. I pulled my blankets up to her chin to warm her up. We snuggled together, and it seemed to me that the day was starting out very nicely. Meghan slurped her thumb and used her index finger to stroke circles around the tip of her nose.

My alarm clock rang, and I reached to the side of my bed to turn it off. I grabbed my glasses and placed them on my face. My fuzzy bedroom suddenly appeared with clarity. I switched on the TV, and the exercise lady's soothing voice came into the room.

My day was beginning, and the count down to leaving the house began. Meghan continued to lounge in my bed, and Charlie delivered a cup of milk to Grace in her bed. She has sucked down six ounces every morning since she was a toddler.

After getting ready, I walked into the girls' room. "Grace, do you want to get dressed first?"

"Uh huh, Mommy."

"Okay Grace. Please take your pajama top off, and pull off the band-aid on your owie." (Grace is still receiving treatment for her suspected MRSA infection.)

Whining came forth from Grace. "I don't waaaaaaaannaaaaaa take my band-aid off." She huffed, folded her arms, and frowned.

Tick, tock...time running out.

"Gracie, it is time to remove the band-aid so I can put more cream on it. You and I had a bad morning yesterday. I don't want another one. C'mon. Take the band-aid off or I will."

She folded her arms again, "No! I don't want to!"

I began thinking, "Fabulous. This is great. Oh, I'm having so much fun already."

"Gracie! 5, 4, 3, 2, ... 1." Grace began to take her pajamas off, and I walked into the bathroom to get the antibiotic cream. I grabbed the tube, a Q-tip, and a fresh band-aid.

Tick, tock...time running out.

When I returned to her room, I noticed that Grace's pajama top was hanging like a hoola hoop around her neck. There had been no further progress while I was gone. Frustration began to rise up within me.

"Grace! I asked you to take your pajama top off and take that band-aid off. I guess I'll have to take the band-aid off for you."

"Nooooooooooooooooooooooooooooooooooooo. She jumped off her bed and bolted to the other side of the room."

"Grace come back here. We are going to get dressed now. I do NOT want to fight with you this morning. We had a bad morning yesterday, and I will not have that again. I will NOT!"

Tick, tock...time running out.

She sheepishly shuffled her feet along the hardwood floor toward me at what seemed to be a snail's pace. "Now Grace, not tomorrow. Now!" Anger began to rise up within me. She sat down on her bed, I dressed her wound, and then I essentially dressed her, the 5 year old. I was watching the clock and thinking that I was not going to be late to work again...not again! It was already beginning to spiral out of my control though.

I didn't want it to happen again. The day before I had been reduced to a screaming, yelling shadow of my former self. I grew up with yelling, and my ideal parenting style would be a calm, firm tone. I began with that approach, but mornings are not my best time. I'm raw and unrested most of the time. I don't sleep well. The muscles in my neck and back are knotted, and emit pulses of pain for nearly an hour until I can warm them up. When I was in college, I was told I had fibromyalgia. Grace and Meghan don't understand this though. Sometimes, my husband doesn't even quite understand although he offers to rub my shoulders quite often. Too bad I hate back rubs. The toxins in my knots are released during a massage, and then I feel like crap for days. I'd rather have knots.

Tick, tock...time running out.

In any case, I managed to get Meghan dressed without much difficulty. She had toddled back into the girls' room, and parked herself in a child sized stuffed chair that Grace received for Christmas one year. Grace was sitting in another chair with her mouth agape watching Sesame Street on the television.

I left the room for about 10 seconds to put water on Grace's hair brush. As I turned around to leave the bathroom, I heard, "No MEGHAN! No MEGHAN! Leave the TV on!" The TV clickd off, and Grace's "world" came to an end. Oopps, I mean my 5 year old completely overreacted.

I commanded, "Meghan Rose turn the TV back on and sit down!"

"I don'ttttt wantttt toooo, Mooommmmmy!" Meghan protested.

"Guess what Meghan! Mommy is now fuming mad. Turn it on now, or you're in a time out! 5, 4, 3, 2, 1" Surprise, Elmo began squaking in the background.

"Girls, you are going to be good listeners. You ARE going to be good girls. You ARE going to do what I say. Mommy is in charge here. You are NOT!" I thought, "Oh man, here I go again. Here comes Darth Mommy! You know her. The mommy who normally is a sane person, who can have normal adult conversations, who can multitask, who doesn't care what others think, who isn't swayed by silly childish inclinations, who can command others' attention without yelling, screaming, or protesting loudly...especially not the screaming mimi, Darth Mommy. No, not her!"

Tick, tock...time almost out.

"Mom, Meghan is smiling at me. She is happy she turned the TV off! Mom! Meghan needs a time out. She is teasing me! Mom!" Frustration, anger, and loathing of my children sprang forth my mouth. If you had been an observer of the morning's events, you might not have understood why I was erupting like Mommy Vesuvious. It was the cummulative effect of many weeks of non-listening children, refereeing, negotiating, nagging, separating dualing duos, and just overarching disdain for the same crap day in and day out.

"OK! THAT IS IT! I'VE HAD IT! LISTEN UP! I WILL NOT TOLERATE ANYMORE OF THIS BAD BEHAVIOR! I WILL NOT! I WILL NOT HAVE BAD CHILDREN! I WILL NOT! YOU WILL LISTEN TO ME NOOWWWWWW!" Ut oh! There she was again, Darth Mommy...evil incarnation of Do Gooder Jen. "I WANT SILENCE! NOT ANOTHER WORD! NOT ANOTHER WHINE! NOTHING! I WANT SILENCE! You WILL go with me downstairs. You will put your coats on, find your mittens, and get your backpacks. YOU WILL not push! You WILL NOT fight anymore! You will NOT SAY ANYTHING! NOTHING! YOU HEAR ME?"

The both blankly stared at me, and Grace said, "Uh huh."

Tick, tock...now, we're late.

As we descended the stairs to leave the house, Grace hurried to be the first one out the door. She is forever trying to be the first to do anything. It is driving me a little nutso because she can be quite ruthless about being first. Meghan has been knocked down in the process several times.

"I WANT TO BE FIRST! I WANT TO BE FIRST!" Grace chanted as we approached the back door.

I replied calmly, "There are no firsts or lasts in our house. We all go together. Nobody wins. Nobody loses. Nobody is first. Nobody is last. We go together."

What Grace heard was probably something to the effect of, "Blah, blah, blah, blah. Blah, blah, blah." She stuffed her arms into her coat's sleeves, and promptly morphed right into a tantrum because her zipper would not cooperate. Her face turned red, and the whining began, "I caaaaaaaannnnnnnn'ttttt doooooooooo this! My zipper is stuuuuuuuuuuuccccccccccccckkkkkkkkkk Mommy. I DON'T WANT to wear this coat! I want my purple coat. WAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAA! WAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAA! WAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAA!" As Grace was whining, Meghan began taunting Grace with, "Gracie is a poopy pants! Gracie is a poopy pants! Gracie is a poopy pants!"

"Grace, USE YOUR WORDS! Meghan, if I hear you use potty talk one more time, you'll get a time out!" I shouted.

"WAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAA!" continued forth from Grace. Meghan had now folded her arms in protest, and was chanting, "I DON'TTTT WANNTTT a TIME OUTTTTT! I DON'TTTT WANNTTT a TIME OUTTTTT! I DON'TTTT WANNTTT a TIME OUTTTTT!"

Tick, tock...we were now 10 minutes behind schedule.

"C'MON GIRLS! Get your coats on, find your mittens and hats, and let's go! We're late! Let's go! Let's go!" I said with exasperation. Yep, they did it. They sent me over the edge of reality. I now sounded like them. I was yelling, screaming, and just basically reduced to a puddle of nonsense because I was so angry.

I commanded silence from my peanut gallery again, and we walked out the back door. Grace pushed past Meghan to be first. Meghan whined at Grace. I inhaled the crisp morning air deeply, hoping that I'd find my inner strength to make it Meghan's preschool and Grace's kindergarten without ending my childrens' lives first. I felt sure that I was slowly going insane. That my daughters' mission in life was to make me insane, and it was working.

Tick, tock...

When we got into the mini-van, Grace hopped into her booster seat in the third row. Meghan noticed this while standing next to her second row seat, and began whining, "I WANTTTT TO GOOOOOOOOO IN THE BACK SEAT! I WANT TOOOOOOOOOOOO!"

Darth Mommy replied, "NO WAY MEGHAN! I DON'T HAVE TIME TO MOVE YOUR CAR SEAT RIGHT NOW. WE ARE LATE! I DON'T HAVE TIME! WE ARE LATE! GET IN YOUR CHAIR NOW!"

"NOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO!" Meghan choked and sputtered and gagged on the large lump forming in her throat.

"DO NOT THROW UP MEGHAN! DO NOT! I WILL NOT DEAL WITH PUKING THIS MORNING! I WILL NOT!" I screamed. (Ever since Meghan was intubated in the NICU, she has a very strong gag reflex. Whenever she gets remotely upset, she pukes.)

At this point, Grace began to whine. Her frustration with her winter coat was winning. She didn't like how the coat felt underneath her seat belt. "IT'S TOOOOOOOOOOOOOOOO TIIIIIIIIIIIIIIIIIGGGGGGGGGGGGGGGGGGGGHHHHHHHHHHHHHHTTTTTTTTTT! It's too tight! Mommy, can I take my coat off? Can I take my coat off?" she pleaded.

"NOOOOOOOOO! ABSOLUTELY NOT! WE ARE LATE! I AM NOT PUTTING IT BACK ON YOU! You have to deal with it. It is a short drive. Deal with it!" I commanded. I put the mini-van into reverse to leave the garage. Both the girls cried the entire way to Meghan's preschool. I was fuming and extremely short tempered. It was beginning to feel like the morning would never come to an end. I just wanted to get to work.

I dropped off Meghan. Grace and I got back into the mini-van, and she promptly started in again about her coat. More whining, crying, and general annoying behavior came forth from Gracie. By this time, I had had it. I was done. Kaput. Over. Complete. Finished.

As we drove to Grace's school, I let out a primal scream, "I HAAAAAAAAAAATTTTTEEEEE MORNINGGGGGGGGGGGGGGGGGGGGGG! I HATE ITTTTTTTTTTTTTT!" Grace wasn't phased by it all. She just kept whining about her coat. We finally arrived at her school, and I took her into the before school day care room. Her cheeks were red and tear stained.

Remorse began to bubble up inside of me. Tears filled my eyes. I felt completely insane, and embarassed at what I had said to the girls. I was nuts. I didn't mean anything I'd said. I couldn't believe I had treated my precious blessings that way.

Grace's eyes said it all. She was scared of me. She was hurt by my words and actions. I squeezed her into a tight embrace, and said, "I love you Gracie. I'll see you after school. Have a good day."

She replied, "Hugs and kisses Mommy. See you after school." She began to cry a bit, and I said, "Gracie, let's have a better day now honey. It's okay. We're okay now. I'm sorry."

As I left the school and walked toward my mini-van, tears filled my eyes again. I cried most of the way to work.

Things have to change. I can't keep doing this. I'm better than this. I think I need remedial parenting or something. I know that most parents have been in similar situations, but I feel like a gigantic heel.

Tick, tock...45 minutes late to work.

The Road to the Cure...

This article will be published in the next edition of the Alpha-1 Association's Alpha-1 News. Enjoy this advanced preview. Copyrights apply.

The road to a cure for Alpha-1 just became a little more enlightened. Dr. Jeffrey Teckman, Associate Professor/Director of the Division of Gastroenterology & Hepatology at Saint Louis University, recently published a groundbreaking research study in the journal Hepatology. The title of that study, Alpha-1 Antitrypsin Mutant Z Protein Content in Individual Hepatocytes Correlates with Cell Death in a Mouse Model, might seem a bit daunting, but rest assured Dr. Teckman’s clarity about his research shines through.

Dr. Teckman’s research team has a goal to figure out how the liver gets hurt in Alpha-1 Antitrypsin Deficiency. Essentially, experts have known that the build up of the Z protein in the liver is what damages the liver. This knowledge was built off of experiments that were conducted in vitro, also known as cells in a dish.

Dr. Teckman clarified, “That is useful, but it is a long way from a cell in a dish to a liver because in a dish, all the cells are the same.” Dr. Teckman wanted to take a big step forward and move that knowledge into an animal research model. Applying theories using animal research models is a critical step of research aimed at finding a cure for Alpha-1. Dr. Teckman further clarified, “In the liver, there are many different types of cells, and the cells are arranged in a very complex arrangement. Those may be important factors that are difficult to model just in a dish.”

Dr. Teckman’s team worked for the last four years to answer questions about how the Z protein causes damage in the liver. He added, “Part of the way that cells die is a process called apoptosis. That is a common way for cells to die, but the problem was that we couldn’t figure out why the whole liver just didn’t die. Because there is a lot of Alpha-1 in the liver, we focused our study on answering questions such as: Are liver cells dying because of apoptosis? And if they are, why doesn’t the whole liver just die from apoptosis? How could we understand that?”

Dr. Teckman shared, “And so it turns out that within the liver, the build up of the abnormal protein is very heterogeneous. So some cells build up very large amounts, and some cells don’t build up any. The liver cells with the most Alpha-1 tend to die from apoptosis; however, certain cells seem to detect the buildup of Alpha-1. Those cells “decide” to try to stay alive. That process works well. There are only a small handful of cells at any one time that are having trouble, and it is this very slow turnover of cells in the liver which make this disease slowly progressive in most people.”

So in finding answers to those questions, Dr. Teckman’s team formed more questions that need answers. “It is 5-10% of Alphas, who seem to have trouble, and then the other 90% do fine. We still need to figure out the differences between the group who does fine and the group who doesn’t. With this study, we are beginning to understand about the 90% who do well. This study isn’t the final answer though. We think this an important step on the way to finding the final answer, and especially for developing a kind of a flow chart for how the liver gets hurt. That allows researchers to investigate every arrow in the chart, and figure out a medicine that could block certain “arrows” in the chart.”

Dr. Teckman envisions this for the future, “Now we are trying to understand the liver cells that have the large amount of Z protein build-up. We are trying to determine what that build-up might mean in terms of developing liver cancer. We are also trying to test drugs that would block the build up of abnormal protein so we can hopefully take some of these drugs we are testing in animals and then try them in humans in clinical trials.”

The research sounds very promising. Dr. Teckman added, “Well, we hope so. It takes time and money to fund research. That is why we need to increase funding into Alpha-1."

Dr. Teckman's study was funded by the National Institutes of Health (NIH) as well as the Alpha-1 Foundation.

Thursday, November 15, 2007

Life Insurance

Neither of my children can obtain life insurance. Well what I mean is that I have not been able to obtain life insurance on my children. They've been flat out denied because of their Alpha-1 Antitrypsin Deficiency.

I know that this can be a morbid subject for some people, but I've faced the idea that my children's lives are not guaranteed. Yes, I hate to even write that down. If I lost my children, I'm pretty sure I'd curl up in a ball somewhere and never emerge again. My only hope for life insurance policies for my girls would be to pay for funeral expenses. Money could never ever replace them or begin to soothe the emptiness I'd feel.

It has always bothered me that Gracie and Meghan won't be able to take advantage of the benefits of life insurance, though. I've even asked insurance agents if they'd write a policy that would cover my girls only if they didn't die from anything related to a complication of Alpha-1. Nope. Nada. Nothing. Denied.

Recently, my company went public. We have a new benefits package now. It includes dependent life insurance without proof of insurability. Voila! Kesa, Grace, and Meghan now have life insurance. Wow, how did that happen?

Wednesday, November 14, 2007

Interview with an Alpha-1 Expert

On Friday, I had the opportunity to interview a man helping to find answers for how Alpha-1 damages the liver. He is Dr. Jeff Teckman, and I've gotten to know him as an acquaintance through my volunteer work with the Alpha-1 Association and Alpha-1 Foundation. It was an enlightening experience in that I got to better understand how the true process of research happens, but then I had a realization.

Research takes years and years of trial and error. Successes are often fleeting or just out of reach. In talking to Dr. Teckman, I learned about in vitro research, which is based on cells grown in a petry dish. I also learned about in vivo research, which uses animals or humans. His latest publication was based on a well known assumption that the build-up of the Alpha-1 Z protein in the liver cells causes damage. He took that theory, which was proven with in vitro research and applied it to a mouse-based model. The mice in his study displayed that Alpha-1 liver cell damage is very heterogeneous. Some liver cells display damage, and some don't. Why this happens to some cells and not to others is still in question. Dr. Teckman and other Alpha-1 researchers are working hard to figure out the reasons.

My realization often comes in the form of small spurts of inner panic.

Panic for what might happen.

Panic for what will happen.

Panic for what I can not control.

After all, I want to do my job as Grace and Meghan's mommy. My job in life is to protect them from harm. Alpha-1 is the big, bad monster from which I can't protect them. It may harm them. It may not harm them.

I have to have faith. That is a hard thing to acknowledge sometimes. I have good days where Alpha-1 doesn't get a moment's thought, and other days, I immerse myself in a sort of quest for more knowledge of Alpha-1.

The interview with Dr. Teckman was both exciting for its reveal of possibilities, and a let down in that the elusive cure is not coming soon enough.

Until then, I pray and help to guide the girls into their lives including, but not limited, to Alpha-1.

When I receive Dr. Teckman's approval of my story, I'll post it here.

Tuesday, November 13, 2007

Prematurity Awareness Month



November is Prematurity Awareness Month.

A little more than 5 years ago, I learned that my first baby would be born too soon at 34 weeks gestation. My precious cargo, Grace Ann, had to be born early because of my preeclampsia. She was my biggest baby weighing in at 3 pounds, 14.5 ounces, and 17 1/2 inches long. She had difficulty breathing, eating, and growing. To this day, Grace still deals with issues related to her prematurity, but nonetheless is doing well overall in kindergarten. Can she really be 5 already? Wow! I'm eternally grateful for Grace and the wonderful neonatal care she received.

A little more than 3 years ago, I learned that my second baby would be born extremely too early at 27 weeks gestation. My tiny peanut, Meghan Rose, was born because I developed preeclampisa yet again. She was unbelievably small to me weighing in at just 725 grams, aka 1 pound, 9.5 ounces, and 13 inches long. She was called a micropreemie, and proved herself to be a fighter every scary step of the way. Today, she still contends with issues related to her prematurity, too. We're happy she is growing, albeit ever so slowly, but she is happy and quite the character. Way to grow Meggie. :)

Every day 1 in 8 babies born in the U.S. arrives too soon. Premature birth can happen to any pregnant woman. It is a serious, common, and costly problem. The March of Dimes is leading the campaign to reduce premature birth by supporting research and by educating the public and health care providers.

In tribute to the miracle baby survivors of preeclampsia, please consider donating to the March of Dimes. I would be so proud if you could. Grace & Meghan thank you too.

Jen, mom of Grace & Meghan

Sunday, November 11, 2007

Saturday, November 10, 2007

Laternenacht

I slid the door of the mini-van closed, and as I turned around, one of the lanterns slipped a bit in my hand. It was Laternenacht at Grace's school, which is a politically correct version of Martinstag, a German holiday celebrating Saint Martin and his good deeds.

I readjusted the lanterns in my left hand, and I took Meghan's mittened hand in my right hand. Grace grabbed my left elbow, and we shuffled along toward the school. As we walked along, children swung their lanterns back and forth as their parents reminded them to be careful.

"Mommy, I want my lantern on!" Grace protested.

"Sorry Grace, we'll turn it on when we get inside the gym. Hurry with me. We're a little late, and the program is starting."

We walked through the glass-paned front doors of Grace's school. The main hallway was teeming with parents and children. Some parents were still trying to buy their children lanterns to use in the procession around the park later. I kept hearing, "I want that one!" from various little helium voices. Laternenacht was a big deal for these grade schoolers. They had been preparing with their teachers for weeks by making lanterns and practicing the traditional German songs such as Laterne, Laterne.

Last year, we had missed Laternenacht because Gracie was incredibly sick with a stomach virus. I wasn't sure what to expect. We finally squeezed past the table where the lanterns were being sold, and quickly proceeded to the gym.

"Stay close girls. I don't want you to get lost in here."

The lights were down in the gym except for the backlighting on the stage. A "high tech" overhead projector shone onto the screen. A blurry song form appeared. I couldn't make out any of the letters. Four parents were standing on the stage, and each held various instruments readied for the sing-along.

"Mommy, I want to turn my lantern on." Grace said again.

"Go ahead Grace. Let's take your hat and mittens off."

The folded accordian-style paper of her lantern light glowed. It was a traditional style German lantern in the shape of a ball. Two round metal wires held the ball together.



Families were packed in like sardines in the gymnasium. We sat down on the floor.

Just as we were sitting down, a young boy bumped into Meghan. She fell directly onto her paper lantern. It ripped in half. Grace promptly began to cry because she thought it was her lantern.

"Gracie, this is not your lantern."

"Oh." She turned around, wiped the easily formed tears from her eyes, and turned her lantern off and on several times.

"Mommy! My lantern is smooshed," Meghan whined.

I wispered, "I know Megs. Mommy is going to fix it for you." I dug around in the pocket of my slacks, and found a small black binder clip that I brought along just in case the mechanism on which the lantern was perched failed. I felt rather MacGyverish because it worked perfectly to keep Meghan's lantern together. I thought, "Yay me!"

The sing-along began, and Grace's prowess of her Laternenacht songs came shouting out of her. She was in heaven. The songs flowed easily out of her memory, and her voice matched the tune perfectly. A mom sitting in front of her turned around smiling. Gracie was clearly shouting songs in her ears, but that mom didn't seem to mind.

Ich gehe mit meiner Laterne, Laterne Laterne, Der Herbst ist da all were sung by the children. Some of the parents are native Germans, and it was clear they were reminicing about their childhood Martinstag memories. Lots of smiling faces were reflected in the glow of lanterns.

The program was entirely auf Deutche, and only lasted for 10 minutes. I was glad because the gymnasium was beginning to swelter. Meghan attempted to sing along, but didn't know the songs yet and as a result, became quite bored. She shifted and poked her lantern. A couple of times, she smashed her lantern into my face. My patience was slowly eroding. Thank goodness for short programs, though.

With what seemed like an abrupt halt, all of the families streamed into the main hallway of the school again. We proceeded East toward the playground exit. As I stopped to take a picture of the girls with their lanterns, I heard, "Gracie!"

I turned around, and there was Grace's best pal, Zoe. Her pink, piggy lantern glowed in her hand. Zoe's brother, Sam, was on his dad's shoulders. His Winnie der Pooh lantern glowed in his hand.

"Mommy, I want to go with Zoe," Grace whined.

"Alright Grace. We'll catch up to them. Now smile please." I snapped the picture, and we walked out the playground area doors.





As I inhaled, I started to cough since there several moms who had lit their cigarettes just outside the school doors.

Out of my mouth came, "Oh gross! Who is smoking?"

A response came out of the darkness, "I'm so sick of people telling me I can't smoke. C'mon. I am outside!"

I thought, "Yeah, just outside the doors of a school, where you know people are bringing their children to join the Laternenact procession. You can't wait another half an hour to get your fix, huh?"

I kept walking with the girls, but said loudly, "I have 2 children, who have a genetic disorder that doesn't allow them to be exposed to cigarettes. It is a huge deal when someone smokes around them even if it is outside. A little bit of their lung function just got damaged from your addiction."

No reply came forth, and we ran ahead to get away from the smoke. My inner evil side thought, "What a hag!"

"Why are we running Mommy?" Meghan huffed.

"To catch up with Zoe and Sam and to get away from the cigarette smoke."

Grace found Zoe, and they held hands. As they walked along, their lanterns glowed and bounced in cadence with their steps. They began singing, "Ich gehe mit meiner Laterne..."

It was a crisp fall evening, and leaves crunched under our feet. I held Meghan's hand, and she would periodically shout toward Sam, "Hi Sammy!"

It was our first Laternenacht but will be one of many we'll attend in the coming years. Time is speeding up as my girls go full speed into their school years. I soaked in the memories as I'm sure I'll eventually reflect on nights like Laternenacht as some of the best of my life.

We reached the end of the procession, grabbed our cookies, and piled back into the mini-van as it was now close to bedtime. Ah to be a kid again...

Party Bugs Update

Grace is definitely allergic to Bactrim so no more of that ever again.

We kept her off any antibiotic for 48 hours, and the pedi started her on a powerful ointment to be applied to her wound twice per day. He wants us to call on Monday to report on the progress. We'll see what happens.

Wednesday, November 07, 2007

When It Rains...

It pours...

Gulp. My child is one of the children that most people in my city would fear. She has a staph infection that may be MRSA, but hasn't been cultured. She is taking antibiotics for it, and we keep it covered. We wash our hands, and we encourage her to wash hers often. Even with all of that prevention, she still got a huge staph infection. I don't know why. She just did.

Last night, Grace said, "Mommy, it feels like there are bugs biting me on the inside." She pointed to her back near her right kidney. I didn't think much of it at first since Grace is often in sensory overload, but I did tell her that if the "itchies" got worse to come find me in the night.

"Okay Mommy." Her sleepiness must have overruled the "itchies."

In the morning, I gave her 2 teaspoons of Bactrim as prescribed without thinking much about those "itchies." When she came home from school, the tops of her hands were flaming red sort of like a sun burn. I knew the drug made her photosensitive, but she claimed that she was wearing her mittens on the playground.

At dinner, Grace said, "Mommy, I'm really itchy." She scratched the sides of her torso up and down and said emphatically again, "I'm itchy!"

A light bulb turned on inside of me.

"Crap, she must be having a reaction to her Bactrim. Crap!"

I turned to my husband and said, "Great. Now, we have to take her to the doctor for a third time in two weeks." Don't misunderstand me though. I have no problem taking her to the doctor, but I feel like Gracie can't catch a break here. It really can't be fun to take antibiotics all the time.

MRSA, hmmmm?

Monday, November 05, 2007

Party Bugs

When Grace was two years old, she developed a pretty high fever which scared me quite a bit. It was the first time I had seen her get so incredibly ill from a virus. She was beginning to really understand what was happening to her then, and that day, I began, what I think will be, a life long journey of helping Grace to understand the world around her.

I don't recall the exact conversation anymore, except for two words that sprung forth from my explanation. At that time, my inexperience as a parent was giving me much to ponder. I was literally stumbling over my words with her, all while Grace was suffering from a 104 fever.

Grace kept asking me why she didn't feel well. She wanted to know why, to get it, to understand. Gracie's fever made her more adament than ever. She was determined to know what the heck was making her feel so bad.

I struggled to come up with something to appease a two-year old. I hemmed and hawed and even thought that Grace might be delirious.

The final result was that I explained to Grace that there were "party bugs" having a dance party inside of her, and she needed to take her medicine to kick the bugs out.

This explanation has transcended her current state of knowledge. We mention party bugs frequently in our house now.

Recently, some nasty party bugs took up residence inside of Grace. I'm worried about it, but hoping that things turn out for the best.

I took Gracie back into the pediatrician today because the "boil" on her collar bone had become angry looking, had grown larger, and a tell-tale halo of infection was beginning to appear again. The pedi thinks it may be MRSA, Methicillin-resistant Staphylococcus aureus. He didn't culture the infection though. He wants to see if the bacteria responds to a drug in the sulfa family first.

She began taking Bactrim tonight, and after her shower, her wound opened up. The party bugs erupted from their house inside of her, and hopefully, this is the beginning of her healing.

"Mom, are the party bugs getting kicked out by my new medicine?"

Isn't she so smart?