Sunday, May 27, 2012

Big things to do

When you get bad news in life, the first thing that comes to mind isn’t always how am I going to make a difference with this experience? For me, that wasn't anywhere close to my thoughts when we found out about Olivia's condition. Yet, in those first few days of shock and disbelief, I had to do something. Brett focused on reaching out to fellow parents and I quietly wrote every politician in Louisiana. My letter was vague, because at the time, I was just desperate for someone to listen. I received a letter from some lady in a little town agreeing how bad the disease was but she donates to AHA, so she was sorry to hear about us. I received a blah letter from Mary Landrieu. So to say, I was over the lack of response is an understatement.
   Much to my surprise, I finally received a letter from. Mr. Dan Claitor. It was heartfelt and honest. I spoke with him by email and telephone and he actually tried to help us get info about the best care for Olivia in Louisiana. He is not my district representative or in no way would his career benefit from helping a small family struggling to overcome a huge hill. He gave us his time anyway.
   After Olivia arrived, he kept in touch and wanted to make an official CHD awareness day for Louisiana. I was tired, busy, and too overwhelmed to even contemplate how I could make a difference. Mr Claitor though did not forget. He has arranged for Friday June 1st to be that CHD day. It just so happens to be the day Olivia turns 7 months old. We will go to the Capitol Friday and Olivia will be the first HLHS baby to be the ambassador of sorts for Louisiana's CHD day.
Today, I think back to July 5th, 2011and know that Olivia will make a difference. Bad news doesn't always have to be a bad thing. Olivia for us and many others has a huge purpose and we are excited about all the possibilities.

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