Sunday, February 8, 2009

Opening commentary

I want to preface, I am in no way a writer nor a blogger. I have no idea what I am doing! I have been spending way too much time on trying to get this blog to look the way I want it to - so I will get the content out there, and work on the rest later. Excuse the Construction zone, bare with me. Upcoming posts will document dr. appts, the diagnosis and our road to upcoming procedures and possible clinical studies. I don't know how much I can get out here today, because I have a 4 month old, a vivacious, 4 yr old, and hubby who glares. LOL I will try to get all this data out on a post by the end of today.

I want the content of this blog to reach my family and friends and give updates on Gavin. I have family that live out of state, and so much family for that matter, I wanted a repository to hold all the data that has been thrown at us the past week. I also want this blog to serve as a means for me to connect with other families in a similar situation. Thirdly, I want this blog to serve as a timeline for Gavin, so he can one day READ his own story that we are documenting, as we all know it is very difficult to hold onto every single detail by memory alone.

I'm glad you are here. You either know us, love us, or just have an interest in our journey. Either way, thank you for reading the story/documentation of our precious little boy, and PLEASE let me know if you have any questions, resources, people in a similar situation as us, etc.. Knowledge is power, and I am on a mission. I'm not sure where this mission will take us, but I am determined. The past week, since learning new information, I AM on a mission most of the day. In between these feelings of determination, lies a very deep sadness for my son. Sometimes I cry so hard, and so deep, it's hard to breathe. Sometimes I glance at him, and wonder if he will ever see his mommy's eyes, and SEE how much joy he brings to us. I know he feels it, and that is what gets us through the day. To quote my aunt, from a very touching email she sent us, "His eyes only impair his sight, not his heart, brain, personality or love for life and his family." These words are so profound, and so true.

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