Thursday, June 04, 2009

Alpha-1 Antitrypsin Education Conference

Here I am in San Francisco. My girls are at home with Daddy, and I’m here to attend an Alpha-1 education conference.

I’m here to learn more about Alpha-1. I’m here to meet up with my online family of fellow Alpha-1 parents and patients. I’m here to learn. I’m here to grieve those we have lost, especially a precious little boy named Gavin who fought such a brave fight but became an angel at age 11 months.

I’m also here to get a reality check. It is often times easy for me to forget that both of my children have Alpha-1. They both have liver disease. We are very fortunate that their liver disease is currently stable. Knock wood!

This conference always reminds me of reality. That nothing is certain in the lives of my daughters. That we may get a shocking blood test result or that we may notice yellowing skin or yellow tinting the whites of their eyes. As they grow up, they may need oxygen as emphysema develops in their lungs. My girls’ bodies may fail them over time. It is just a matter of when that happens. Each Alpha is different. It is often times hard to accept that uncertainty.

But even with all of that uncertainty, I do know this. I am not alone here in San Francisco. I am here among those who know how this feels. I am among some of the bravest, most determined human beings I’ve ever met. I’m grateful for this opportunity, and for what Alpha-1 has brought to my life…knowledge that I should never take things for granted. Life is short and uncertain. I hope to keep this perspective until next year’s conference reminds me again.

Long live the Alphas.


Mary said...

Welcome to my neck of the woods! I know exactly what you mean -- conferences can be both sobering and comforting. An odd mix. I draw strength and information and go back to doing the best I can and enjoying today.

Sorry about the weather. Bleck.

Wendy @ The Shabby Nest said...

Hi! I'm not sure if you remember visiting my blog, but I did a post on my three boys who all have Alpha-1 at the beginning of May for Alpha-1 Awareness month. I have been wishing that I could attend the conference this weekend as well...alas finances being what they are, I don't have the opportunity.

I feel very much the same way you do, in that since my boys are relatively healthy, sometimes the Alpha-1 takes a back seat in my mind. But as you mention, it may just rear it's ugly head without any warning. It is sobering.

I hope you enjoy the conference. I'd love to chat about it. Maybe you can drop me an email... shabbynest (at) yahoo (dot) com.

Megan said...

Wow, you wrote EXACTLY what I felt after attending the conference this weekend. Something about this conference just really hit me hard. Not sure if it was pregnancy hormones or what. I try to remain positive and hopeful that a cure is right around the corner for our Alpha kids. I know that this baby could do better or worse, but this weekend I really began to doubt what I was doing. It was definitely a reality check. I was glad to see familiar faces and meet a couple of new ones.