Saturday, July 3, 2010

Breathe In, Breath Out

Sitting on a vinyl covered bench in the lobby of the hotel, I found myself people watching. I was waiting for the bus to return from Epcot with my family on board. I was ready to go home. The suit cases were packed, and stowed with the bell hop.

As my thoughts drifted back to the education conference I had just attended, I reflected on new information I had learned. A pediatric pulmonologist, Dr. Blake Noyes, surprised many of us there by saying that we should be taking our kids, six and older, for pulmonary function tests. He shared that it is very important to ensure that Alpha-1 kids do not have undetected asthma. Because asthma causes inflammation in the lungs, it would be important to treat undetected asthma to hopefully reduce the amount of damage occurring in the lungs. While I understood his logic, I heard myself sigh as I lamented yet another thing to add to our list of surveilling Alpha-1 in the girls' bodies.

As my thoughts brought me back to reality, Meghan's blond locks bounced up and down off her shoulders as she approached me. "Mommy!" she shrieked as she launched herself on my lap. "Mommy!"

"Hi Sweetie, did you have a good time?"

"Uh huh! It was good. Daddy and Grace went to look at the gift shop."

As she snuggled on my lap, a famous face in the world of Alpha-1 appeared in the lobby. John Walsh, one of the founders of the Alpha-1 Foundation, pulled his suitcase behind him and smiled at me. He was still dressed in his suit, but had removed his jacket. The heat was oppressive in Florida this time of year.

I motioned him over to us, and said, "Hi John. I thought you might like to meet my daughter, Meghan." He approached with a large smile and one that seemed rather grandfatherly in nature.

"Well hello there Meghan. It so wonderful to finally meet you. I've heard a lot about you and your sister." He bent down to Meghan's level and cupped her face with his hand. She slumped down in her place a bit in shyness, but my heart melted. His love was powerful. John is a ravenous advocate for anyone with Alpha-1 Antitrypsin Deficiency, and here he was taking a moment to meet my baby girl, Megsy Rose. He struggles for breath from Alpha-1 daily, but there he was making Meghan feel special.

For me, it was a memorable moment. Meghan had no idea what it meant to me. She just knew another one of Mommy's Alpha-1 friends was there to greet her. I found myself wishing that Grace could have met John too. I've been in the world of Alpha-1 since 2002, when Grace was diagnosed. Alpha-1 is so much a part of my life now, and I can't imagine not having met such wonderful people, such as John.

I'm so proud to be helping our Alpha-1 community in the ways I can help, yet still remain a hopeful parent.

Hopeful Alpha-1 doesn't make my girls life too difficult.

Hopeful that I'll be able to help my girls integrate a genetic disorder into their everyday lives as they grow up.

Hopeful for a cure for my girls and all the people who live their lives struggling to breathe or coping with liver disease from Alpha-1.


1 comment:

  1. It's so good to hope - that's one reason we're all here! And I join you in your hope, and in the pleasure of actively participating in, and helping, your community. You are a blessing to your community.