Monday, January 17, 2011


"Faith is taking the first step even when you don't see the whole staircase."

~ Martin Luther King, Jr.

Saturday, January 08, 2011

Ed Brailey In Tribute

When I met Ed in 2005, I was a newbie to the Alpha-1 community. He and I were elected to the board of the Association that year. Previously, I had read his story in the Foundation's Alpha 1-to-1 magazine.

I was touched by his amazing dedication to give back to the COPD, transplant, and Alpha-1 communities. As a mama to two beautiful little girls who have Alpha-1, I was always looking for inspiration. Ed was pure inspiration to me.

In fact, the day we met I will never forget. He sat down next to me and said, “Jen, tell me about yourself, and about those beautiful girls I’ve heard so much about.”

That conversation created a connection.

And that, to me, is the epitome of our precious Ed Brailey – connecting Alphas one-by-one using his subtle charm and unpretentiousness.

When Alpha-1 came into my life, I felt very alone. There were not many parents of Alpha-1 children that I could find at that time.

Ed helped reassure me as I doubted how much of an impact I could make or how much I could help.

I remember the smile that grew upon his face as he said, “Jen, keep up the great work. We need to bring the kids into our group. You being here will help draw out the other parents. We’ll do it together, Jen!”

I couldn’t help but smile in return.

Ed may not have realized how much he cemented my connection to our community, but I know one thing for certain.

I promise to continue the mission until every last Alpha gets the cure.

So thank you, Ed! Our world has an Ed Brailey-sized hole in it. Your dedication, perseverance, and amazing service will be missed.

Long live the Alphas!

God speed, Ed!

Sunday, January 02, 2011

I'm a Preemie

"Meghan! Meghan! Earth to Meghan!" I said impatiently.

"Hey Megsy Rose! Are you listening to me? Can you please get your pajamas on?" I sighed as more attempts at saying her name in different cadences and tones met no response.

Silence from Meghan ensued as she continued scanning the bathroom with intense interest. I was standing right next to her. Her towel was wrapped around her as she peeked behind the closed shower curtain. I could feel my impatience growing.

In my thoughts, I heard, "Oh come on kid! Really? Seriously? You can't hear me at all. Really? Good grief!"

And then my thoughts leaped from my mouth, "Gosh, you have such A.D.D."

Of course, she suddenly heard that.

"I have what Momma?"

"Whoops," I thought.

"Um. Oh. Well, ADD stands for attention deficit disorder. It means you have trouble paying attention," I stammered.

And then my former micro-preemie, smart-as-a-whip, daughter said, "I'm a preemie, Mom."

As I searched my thoughts for a response, I couldn't believe that Meghan had grown up enough to deduce that former prematurity and ADD might go together. "Well, Megs, you used to be a preemie. If you were still a preemie, you would be living in a "box" in the hospital still growing. You are a big six-year old girl now. You don't live in a box (isolette)."

"Why was I in the box? I don't remember the box," she inquired.

"Well Meghan, when you were born 13 weeks early, you body wasn't quite ready to be born yet. The box kept you warm and safe. Your body still had a lot of growing to do, and the box was kind of like my tummy was for you. One thing that wasn't done growing yet was your lungs. We had to wait for your lungs to grow before we could bring you home." As I answered, I helped her into her pajamas to expedite the process.

"Oh. OK. Why did I come out early?"

"Remember that I was very sick. I had preeclampsia, which is kind of like having an allergy to having a baby in your tummy."

"Did you have a runny nose and sneeze, Mom?"

Her question elicited a smile across my face. "No, not an allergy like that. My blood went way too fast in my body (high blood pressure), and then my kidneys began to shut down."

I took my index finger and pointed to her lower back. "This is where you have kidneys. There are two in your body, and they clean the bad stuff out of your blood. That bad stuff gets kicked out through your pee. Anyway, when I had you in my tummy, my kidneys didn't want to work anymore. If my kidneys stopped working, I would have gotten too sick to keep you alive. So, the smart doctors said they would take you out of my tummy using surgery so my preeclampsia would go away."

"Oh, where did I come out again?"

As I pointed to my lower stomach, I said, "Right here."

"Where did Grace come out?" Her older sister was born by c-section due to preeclampsia as well, but just six weeks early.

"In the same spot, Megs."

"What did I do when I came out?"

"Well, I was having a surgery but your daddy told me that you mewed like a kitten. That was before they put the tube in your lungs to help you breathe," I responded.

"But I could breathe when I was born, right?"

"Yes, you could, but you were too little. You got so tired from breathing that they helped you with the breathing machine until your lungs grew stronger."

"Oh," she dryly remarked with what seemed to be understanding.

"Hey Mom! Do you think we could go visit where I lived in the box?"

"Sure, Megsy. We could do that."

"Yeah, I wanna see where I used to live. Do all the preemies have 'tension order too?"

"I don't know if they all have attention deficit disorder, but I remember your preemie doctor told us that it is really common for babies born 13 weeks early. You aren't the only one. Momma had ADD growing up, and Uncle Tim, too. People born not-too-soon can have ADD, too. I was born 1 week late."


"Just remember that having problems with paying attention does not mean you can't pay attention, Meghan. Momma learned to do it. Uncle Tim learned how as well. You just need to try to listen. Remember to listen. As you grow up, it will be easier."

"I know, Mom. You always tell me that kids are still learning how to be good people. I'm learning. I just need to practice."

God, I love that kid. Amazing...