March 5, 2012 at 4:35 pm Leave a comment

Losing someone you love is a very hard thing. I can only imagine losing a child is the hardest thing someone could go through. Today I met a woman who lost both of her daughters at birth to ADPKD. The other day I emailed someone who has also just recently lost her second daughter to ADPKD. Yesterday I emailed with another mom who recently lost her soon at birth to ADPKD. Years ago it was always thought that people lived to be middle age before suffering the affects of the dominant form of the disease. But that is just not the case. And it’s devastating. Not to mention the MANY women I have been in contact with and am currently in contact with who have lost their babies to ARPKD. I am honored to know these moms and grateful they have shared their stories with me.

As Gabe’s 6th birthday nears I remember the day he was born and the fear I had of losing him. His birth and first few days of line are ingrained in my brain. How the doctors struggled to get him out during the C-Section because of the lack of amniotic fluid. His first weak noise/cry as they whisked him by my head. But most especially to the moment twelve hours later when they wheeled him into my room and told me to say good bye in case he didn’t live through the night and handed me two Polaroids they had taken. I’ve always known I was traumatized by that day. I cannot express the amount of fear I felt but I also cannot express my overwhelming love for Gabe and gratitude that he is here with me almost 6 years later.

So in honor of National Kidney Month I honor those moms who have lost babies to ADPKD and ARPKD and I honor Gabe for pulling through his NICU experience.


Entry filed under: Uncategorized.

PKD Foundation Management of the disease

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