Guest guest Posted January 20, 2000 Report Share Posted January 20, 2000 Carla Welcome to the list. I'm so happy to hear about a CHARGE family who has extended relatives who are helping and doing what they can for the family. For a lot of families (like me) it can be a real feeling of isolation when the extended family is in denial and can't always help. My daughter is 4 years old and each and every birthday is a celebration of a birthday we didn't expect to have her for. Caitlyn had 3 open heart surgeries her first year along with 2 heart caths, 2 mos in severe (undetected) heart failure, appendicitis, 3 other surgeries, hundreds of diagnostic tests, IVs and a multitude of days in the hospital. In short it was a nightmare. The following 3 years brought on repeated pneumonias, croups, and 6 more surgeries. Every cold and flu she caught she became very ill and the dr and therapy appointments are endless. However, a very bright, happy, charming, beautiful, and amazing little girl has shined through it all. She has taught me more about resiliency and perseverance than anyone I've ever known. She is my teacher and my hero. There's a song by Merchant on her Tigerlily album called " Wonder " that we consider her theme song. If you want to check out the kids pix on the CHARGE website, the words to the song are there. It's not just me that finds her amazing. My child receives Christmas and birthday gifts from strangers who's lives she's touched deeply and they never forget her. She has amazed her doctors as she's far surpassed their expectations developmentally and physically. We don't know what the future holds for her, but we've learned to treasure each day we have and to not worry about the future. With technology advancing at rapid speed every day, we have faith that her doctors will someday learn how to repair her heart and make her healthy. Until then, we just hold on for the rest of the roller coaster ride we're on. Whether it gets better or not in time, I can't answer yet. But I can say that you eventually learn to cope and even the worst crisis becomes a normal event that you take in stride. God Bless. Jeanne ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
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