Timmy Celebration

We all got together with Tim for a family dinner before he ships out to Afghanistan sometime next month.

For My Babies

Inside my heart races
Yet I keep my reserve
I hate these blood tests
As much as they do

Smile!
Keep calm!
They need to draw
On your strength

Sitting in a green chair
I offer my arm
To give of me
So they may find a cure

DNA links us together
And they will sequence it
And grow cell lines
Hoping to find shared genes

My girls gather around
Meggie holds my hand
Grace's eyes study
As life flows from me...for my babies

Surprising Results

My hopes were not high
Past experience taught me
You have trouble
With blood tests

Once you tried to bite
Another you bounced
Off all four walls
Others we restrained you

Many tantrums erupted
Even as a small baby
We had to
Poke your life from you

We had to know
If Alpha-1 would show
Even if your senses assaulted
Even if it hurt

My momma heart bled
Every time
I wanted to run
Run with you far away from Alpha-1

So this time we prepared
We had mental rehearsal
A tourniquet would go on
Numbing spray applied

The poke would be quick
Hurt less than a shot
"I know you can do it."
"But Mom," you'd whine.

But I doubted
I prepared for the worst
Even bribed you
With 25 cent jewelry

Some told me you could do it
But I believed otherwise
Until you turned on a dime
And showed me you could

Sitting there peacefully
Watching it all calmly
Making Mama so proud
My brave Gracie :)

Celebrating

The 4th of July began with parade preparations, and decorating of bicycles. Next came face painting, games at the park, surprise run-ins with school friends, rides on the swings and slides, and a fire engine spraying a plume of water all over the park goers. Upon returning home, we rode bikes and set up for our back yard barbeque. Out of town cousins arrived. Tante and Hailey popped over. Favorite Auntie Lo Lo drew shrieks of delight. Much food was eaten, and we wrapped it all up with the girls' first ever official, get to stay up late, fireworks display at Hart Park. Ears were covered. Senses offended. Eyes widened. Fears emerged so we had an early departure, which helped us beat the traffic home. Fun for all...

Fireworks Moment

As I sorted through the mound of "paper nightmare" which had been stowed away in a drawer, I tossed various papers into the recycling bin. My finger stumbled upon a crumpled post-it note, upon which "Alpha-1 Antitrypsin" was written. Tears pooled, and I was transported back to the day when Grace's pediatric gastroenterologist first uttered those words and wrote the diagnosis down for me.


But wait; let me back up a bit…

About two weeks into Grace’s stay in the NICU, her neonatologist mentioned that something might be wrong with her gallbladder, and he wanted an ultrasound with some blood work. He was so casual about it that we didn’t think much of it since Gracie was being put through the gamut of NICU experiences anyway.

In NICU with Gracie, we passed some of the time by reading her chart from top to bottom. Most of the time, we didn’t know what we were looking at but did see abbreviations in the chart that had abnormal values. I can still picture that piece of paper in my mind. The letters AST, ALT, GGT, and Alk Phos had abnormal results. We both wondered what that meant.

We asked the doctor about the ultrasound results. He said they were normal. I also asked about her blood work. He said that premature babies often have abnormal blood work, but that he was calling in a specialist from our local Children’s Hospital to check her out just in case since her direct bilirubin was still elevated.

I can’t remember the exact day that the gastroenterologist found us in the NICU, but I do remember my husband and I were caught off guard and quite confused. The doctor kept asking us if any members of our families had ever had emphysema or liver issues. I didn’t know of any and neither did my husband. I finally asked her, “Why?” Then came the words that changed our lives forever…Alpha-1 Antitrypsin Deficiency. I thought, “What did she just say? Did she just say genetic disorder? Alpha what? Possible liver transplant? Huh? How do you spell that? We carry what gene? Can you write that down for me? I don’t know how to spell that.”

One silly little piece of paper brought it all back. One bit of paper, which I clutched inside my sweaty palm desperately hoping that the doctor was wrong. One paper, which to most people, would mean nothing. One look and I was back there all over again.

Now, it is a little over seven years later.

And guess what?

Grace still has Alpha-1. Grace is growing up with Alpha-1, and lives her life knowing she has Alpha-1. I help her to understand what that means to her. Grace even helps her younger sister, Meghan, to understand Alpha-1. I’m glad they have each other.

On the day I first heard the words Alpha-1 Antitrypsin Deficiency, I had no idea of the type of journey I’d begin. I remember that it felt as if fireworks were going off inside my brain. I really couldn’t hear much except for the huge boom of Alpha-1 Antitrypsin Deficiency that day.

Now, I can sit back and appreciate the beauty and amazing Technicolor that Alpha-1 brings to our lives. I can park myself in a lawn chair, and see them streak through the yard. I can close my eyes and hear them shriek with joy. Their cacophony hits me like the boom of fire works. I love every moment.

So on this 4th of July here in the United States, I’ve shared a "fireworks" kind of moment from my life.

How about you? Share an example of a fireworks moment from your life. I’d love to hear about them.

Happy 4th of July!