Sunday, June 14, 2009
Saturday, June 13, 2009
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.
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.
Monday, June 01, 2009
Tooth #4
Grace lost tooth #4 tonight. She is rakin' in the money lately. The tooth fairy had better make some good investments. haha
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