Monday, August 9, 2010
Today one of my heartmom friends posted on Facebook that she was nervous about taking her baby to the cardiologist office. She was apprehensive about something being potentially wrong with her daughter, who also has Tetralogy of Fallot (just like Scarlett). Fortunately for her, the cardiologist (Scarlett's cardiologist, Dr. Pophal) said that her baby looked and sounded great and that she doesn't have to go back until November.
Her post brought tears to my eyes. I was so happy to hear that her daughter is doing so well. Truly I was. But I can't help but think that I was also emotional that I wish Scarlett's cardiologist appointment back in May had the same outcome. I wished that Dr. Pophal was able to give me the same news about Scarlett. Instead, I was told she has a leaky valve. Not only that... but that it was leaking "a good amount". Ever since that day, I've been an emotional wreck. Crying at the drop of a hat. Living in fear that her heart is working overtime. Worried about every abnormal behavior. Praying for more time. Holding my breath during echos that the leak hasn't gotten worse.
All it takes is some unsuspecting person to say "How is the baby doing?" and I break into tears. But not always. Usually I'm okay. Usually, I can talk about Scarlett's heart condition with a poker face. I can fake it pretty well. I can pretend that I don't live with the thought that each day with my youngest daughter could be her last.
I read stories about heart parents who lose their children unexpectedly do to complications from their child's heart defect. Here one day, and gone the next day. It is every parent's greatest fear to lose their child, but for normal parents it is an unjustified fear. The risk of something happening to their healthy child is about 1%. But for a heart parent, especially for the parents of the babies with complex congenital heart disease who's children are never truly "fixed", that fear is more prevalent, justified and REAL.
I'm one of those parents. I was reminded again in May that Scarlett will *always* have something wrong with her heart. Scarlett will always be waiting for the next surgery. Waiting... not knowing... wondering.... how long will this one last me?...when will the next one be? How much time do I have?.... It makes me very, very sad when I think about it. Sometimes life isn't fair.
Geez, I didn't mean for this post to be such a downer, but I guess I'm just praying to God that next week's MRI tells us that she has at least another year before her next surgery. Hasn't she been through enough in this last year? Can't we just let her rest and be a "normal" happy kid for a little bit?