Thursday, December 02, 2010

All the Right Words?

During our nightly prayers, I added a new name to the very lengthy list of angels and those battling illness for which we pray. Meghan peered up at me from her bed with love on her face along with the call of sleep in her eyes.

“Megsy, let’s add a new name to our list for prayers tonight. Mommy’s Alpha friend, Ed, needs some prayers.”

“What happened to him, Momma?”

“Well, he is an adult with Alpha-1, like you. I think it was about 7 years ago that he received a new lung. They took out one of his old, tired Alpha-1 lungs, and gave him a new one. He liked it very much that he could breathe easier again. But now, his liver is pretty sick from his Alpha-1. He needs some prayers so maybe God will help his liver get better,” I replied.

As she listened, I could see the questions rising up inside of her. Her facial expressions revealed her brain was inquiring, pondering, and pensively beginning to analyze how she was like Ed. I thought, “Aha. There it is. She is beginning to realize what Alpha-1 might mean to her.”

“Mommy, what is wrong with Mr. Ed’s liver? What happened to it? I hope he gets better soon,” she whispered with a bit of fear in her voice.

“Well honey. Ed has Alpha-1 like you and Gracie. Remember how I told you that you have a liver on the right side of your body underneath your ribs?”

“Uh huh.”

“Well, when you have Alpha-1 Antitrypsin Deficiency…”

“What? Is that the real name for it?” she interrupted.

“Yup. It is. That’s a mouth-full, isn’t it?” As she nodded her head, I added, “All people have a liver which makes something called bile to help digest your food, but your liver also makes really important things called proteins and enzymes which are used in other parts of your body.”

“Oh yeah. I ‘member that Alpha-1 is a protein. You told me that a different time.”

“Yes, I did. So when you have Alpha-1 deficiency, there is something that happens inside your liver that isn’t so good. Your liver is really great at making the Alpha-1 proteins, but then something goes wrong. The way your liver makes your Alpha-1 proteins is not quite right, and they get stuck inside your liver. It is like being stuck behind a locked door that you can’t open or go through. Sometimes, though some of that Alpha-1 sneaks through the cracks around and under the door.”

“It is sneaky,” she exclaimed.

“Well Momma wishes it were sneakier. Gracie and you don’t have very many Alpha-1 proteins floating around in your blood where they should be. That is why we have to take very good care of your lungs. Remember that your blood should bring Alpha-1 proteins made by your liver into your lungs where they are important. Alpha-1 proteins are really cool little helpers in the lungs.”

“How do they help, Mom?” she asked as she wrinkled her brow and scrunched up her nose.

“I know we’ve talked about how our bodies are really great at kicking out the bad stuff that makes us sick. That is called your immune system. Well, Alpha-1 proteins are helper parts of your immune system.”

“How do they help my immune system, Momma?” I could feel my heart starting to pound a little harder as my anxiety about the topic began to increase. I thought that I had better put more of a smile on my face so I would not bias her learning or pass on some of my fears from her and her sister having Alpha-1.

With my right hand, I made a sign language letter C. “Well Megsy, when you breathe something yucky into your lungs like a germ or dust, your lungs “ask” a different kind of helper called a neutrophil to kick out that bad stuff. Neutrophils are like hungry little fish.”

I took my “chomper” hand and pretended to munch down on bad things in the imaginary land of the lung. “Neutrophils work like this. They eat up the germs and dust and keep your lungs really nice and clean so you can breathe. There is a whole army of neutrophils that clean up your lungs. That is normally a really good thing, but when you have Alpha-1 deficiency, there is a problem.” I took my right “chomper” hand and pretended to chomp down on my left fist.

“Munch. Munch. Munch. Alpha-1 is kind of like having an army of really big fish, bigger than the neutrophils. Those Alpha-1 “fish” go into your lungs when the neutrophils are done cleaning up the bad germs and dust in your lungs. Then, something cool happens again. (I outstretched my arms and pretended to use them to chomp up imaginary neutrophils in the air.) Alpha-1 takes its really big chomper arms and catches all the neutrophils before they eat up the good parts of your lungs that aren’t germs or dust. Does that make sense, Megs?”

“So Alpha-1s grab all the neu, neu, neu…”

“Yes, neutrophils. And do you remember what those neutrophils eat up in your lungs?”

“Yeah. They eat up the germs and yucky stuff we breathe.”

“Woohoo! You are a smart girl and good listener, Megsy Rose. But here is some bad news, and I wish I could change it for you. I wish I could take away Alpha-1 from you and all of our Alpha friends.”

“What’s wrong Momma?” she inquired with concern on her face.

“Well honey, your liver doesn’t make Alpha-1 proteins the right way. They get stuck behind the “door” of your liver and can’t get out except through the cracks a tiny bit. So, your lungs might get slowly damaged over many years. We really don’t know what will happen so we do our best to take care of your lungs and hope your liver doesn’t get very sick again. Both you and Grace had sick livers when you were babies, but then your livers got a bit better.”

“Why doesn’t my liver make Alpha-1s the right way?” she seemed to ask in protest.
“Because you were born that way. God made you and when you were made, you were given a liver that doesn’t make Alpha-1 the right way. But you need to remember something really important. Every person born has something wrong with them.”

“In their genes, Mom?” she guessed.

“Absolutely right Meghan Rose! You are so smart to remember that our genes are like maps for what might happen to our bodies as we grow. Not everyone knows what genes they have. In fact, we only know that you have the gene for Alpha-1, but we don’t know all of your genes. So we will do our best to take care of your lungs and liver because we know about your Alpha-1 gene.”

“Like stay inside on oze actshun days?”

“Yes. When it is an ozone action day, you and Grace must stay inside in the air conditioning so you don’t breathe that yucky air. If you did, the neutrophils would come marching into your lungs to eat up the yucky stuff, but then those neutrophils would keep eating and eating up the good parts of your lungs because too little Alpha-1 is in your lungs and can’t munch up all those neutrophils. So we just try really hard to keep those bad things from getting into your lungs in the first place.”

“The Alpha-1s can’t get that door open in my liver, huh?”

“Right Sweetie! It sometimes sneaks through the cracks of the door, but most of the time, it just stays inside your liver causing it to be just a little bit sick. Whenever the Alpha-1 gets stuck inside the teeny-tiny parts of your liver called cells, that Alpha-1 gets all mad and angry. It “throws a fit” and messes up that cell by making it swell up like water that goes into a water balloon. For some reason though, your liver is lucky. It seems to be able to do something called regenerate. That is a big word for fix itself. It keeps rebuilding your cells.”
“My liver is fixing itself when the Alpha-1 throws a fit?”

I could feel myself becoming elated that she was actually following along on the convoluted path that I had formed off the top of my head trying to explain Alpha-1.“Yes. It is. Gosh Meghan. Does this really make sense to you?”

“Yes. I think I get it Mommy, but I can’t ‘member all the right words yet.”
“Megsy Rose, you don’t need to remember all the right words. You just need to know that we love you very much, and that we’ll do our best to take care of you and your Alpha-1.” I felt myself take a very long, deep breath as I seemed to be holding it during most of the conversation.

“Ok, Mommy. So is Mr. Ed’s Alpha-1 throwing a fit inside his liver?”

“Yes, it is. Let’s pray his liver can fix itself again. Sometimes that doesn’t happen. He might need to get a new liver from someone who goes up to heaven and doesn’t need it anymore.”

“God bless Mr. Ed,” she concluded. I couldn’t help but feel enormous pride in her realization, but also some sadness as she figured out her Alpha-1 can cause bad things. God bless Meghan and her sister, Grace.

Sunday, November 28, 2010

For Kripity

Kripity, Kripity, doc
Sister of mine
Cancer lit up your clock
Giving its sign

Reminding us all
Of life’s preciousness
Scaring us all
Scaring you most

If I could
Will it away
I’d take it away
But what I know best

Is that fear
Brings change
Change for the good
Change for the better

It isn’t easy
To be the medium
Delivering the message
To help others remember

That life isn’t about
Having the newest car
The biggest, newest house
The best designer purse

It isn’t easy
To be the one
Wearing cancer
For all to see

You know life
Comes in those moments
In between

A smile and a giggle
Light up your life
A warm embrace
Pours life into your soul

A quiet moment
Seals up your cracks
And settles into your bones
Allowing your core to emerge

Poignant moments
With the ones you love
Reveal the true meaning
Of your existence

Life is rarely
Easy and carefree
It has hills for climbing
But also for coasting down

We slip and slide
Cry and laugh
Beg and plead
For your returned health

You are amazing
Resilient, adored
And most of all beautiful

Your strength
Shines from within
Pulling you up
In your darkest moments

Lifting you up
Into the light
So you can take back
Your cancer-free life

I love you.

Wednesday, November 10, 2010

Tooth Loss

Grace lost her upper left lateral incisor on Saturday, November 6th.

Monday, October 25, 2010

School Days 2010

It is time for a long overdue update on the girls, as we recently had parent-teacher conferences.

Grace's teacher reports that she is doing quite well in 3rd grade. Hooray for Gracie! Grace is now reading to learn rather than learning to read. This is more of a challenge for her, but she seems to be embracing that challenge quite nicely. I'm super proud of her ability to express herself in writing. Her English spelling is atrocious, but that is to be expected considering her primary way of being taught is in German. Grace enjoys writing her own stories, drawing maps to find buried treasure, or reading Harry Potter books along with anything Junie B. Jones. She rapidly learns her math, which still amazes me. She loves learning to write in cursive, and is enjoying being a "big kid" at school. Finally, Grace still tends to be a bit more shy than her classmates. She is easily embarrassed by speaking in front of her peers, but overcomes that with some time and patience.

Meghan's teacher tells us that she is advanced with her printing and drawing, which was nice to hear. She is rapidly acting like one of the big kids at school even though she is still tiny for her age, coming in at a whopping 35 pounds. She is doing very well with her spelling words in German, and learning to add and subtract. Reading is rapidly coming to her in much the same way Grace acquired English reading...all by herself. She sometimes gets the words wrong by guessing, but I like that she just goes full steam ahead Meghan-style. Being the true Meghan that she is, we also learned that Meghan has some trouble with patience for others in her class. However, she has infinite patience for herself. LOL We also were not surprised that she is easily distracted by others chatting, although she does not initiate the chatting. Meghan has two best friends, Miana and Sophia. They love to play together at recess. Overall, Meghan is growing up fast, especially chasing after her big sisters.

So, it was a good report all-in-all. Way to go my beautiful daughters! Mommy is so proud of you and your accomplishments.

Sunday, October 10, 2010

RIP Uncle Gary

My uncle Gary was called home to Heaven today. :(

Another Tooth Gone

Grace lost her upper right lateral incisor today. She was quite excited, and Meghan was not so happy since her teeth are just a teensy bit wiggly.

Saturday, October 02, 2010

Pink is the New Jen

The last two weeks have been rough. One of my dearest sisters, Kristen, has been diagnosed with breast cancer. She is only 36, and is the proud mama to a 10, 7, 4, and 8-month old. She has just begun her chemo process. And, no, we do not have a family history of breast cancer. Not that it matters anyway. Kristen is still fighting for her life.

It is odd, but I've never been in this position before. You may ask, "What position?"

Well, I've never been the one, who sits on the sidelines watching the nastiness unfold. In the past, I've been the one who nearly died from severe preeclampsia twice, watched my precious fragile babies fend off prematurity, and agonized over the fact that both of my daughters have Alpha-1 Antitrypsin Deficiency which brings on liver and lung disease.

Me. I was in the thick of it. I cheated death. My girls cheated death.

Me. I've embraced and immersed myself into the existence I had not planned for myself at the outset.

Me. I've been the one in the fish bowl, where all peer in wondering how and what to do.

Being a supporter on the side lines is an odd place for me to be.

It doesn't quite seem to fit yet. I'm so used to my preeclampisa, prematurity, sensory processing disorder, and Alpha-1 Antitrypsin Deficiency awareness and advocacy starring roles. How on earth can I integrate another one? And a role where I get to feel powerless to provide any real help.

Gosh to integrate another role...hmmmmmmmmm. This is going to take some time, but I know myself. I'll embrace the pink. Kristen is so worth it, and so is her family.

Hopefully, my perspective on being the patient and dealing with health challenges will help Kristen in some small way.

Gosh, I want to take those cancer cells out of her in some magic way.

Life threw Kristen a curve ball, and I'm going to help her hit it out of the park.

Monday, September 27, 2010


I've been going over how to write this.

And over.

And over.

And over.

My sister, Kristen, has breast cancer.

My sister.

My 36-year old sister.

How on earth did this happen?



It's so not fair.

I'm mad.

Thursday, September 02, 2010

Tim is Home from Afghanistan

When you were just a boy of 5
I left to start my adult life
Off to college I went
Before I left, you tugged my sleeve, and said
"You can't go. You're the other mom."
"Sorry Timmy. I'll miss you, but I must go."

Then we reversed roles
Last summer as a man of 24
You journeyed to Afghanistan
To serve your country and your fellow man
Before you left, I hugged you close, and said
"Please be safe, Tim. This is could mean your life."

Now, hallelujah!
You’ve safely left the strife
I celebrate that blessing
But never forget your comrades
Who didn’t come back
Who don’t have their lives

With each day
I know you will find
A little bit of peace
And a different meaning to your life
So please be kind to yourself
And know your fortitude amazes big sis Jen

As you reintegrate
And process all your experiences
Without the filter of war
Remember it is one day at a time
One memory at a time
And ask for help as you need it

I’m one phone call away
Always available to you
Very unlike the hills and mountains
You climbed up and down there
Never forget that I want you to know
How proud I am of you and the man you’ve become