Well, here it is over two years since I last wrote. So much has happened. Genevieve is now 4 years old. She is happy. Healthy. Smart. Funny. Crazy. Beautiful. Spunky. And so much more. She has shown so much strength over the years, and I am very blessed to be her mommy. As I continue to write (which I hope to do often again), I will get everyone caught up on our crazy life over all this missing time. I promise :)
Today is May 1st, 2013. It is the beginning of Ichthyosis Awareness Month 2013. I am doing a "31 Days of Ichthyosis with a new picture or fact every day.
So here is the first one:
Every year, more than 16,000 babies are born with a form of Ichthyosis. It is usually present at birth, or within the first year of life and affects the patient throughout their lifetime.
I remember February 8th, 2009, like it was yesterday. I was so nervous and scared to become a mom. I never knew my whole world would be turned upside at the same time. Doctors told us to prepare ourselves that we most likely would not be bringing her home from the hospital at all. And to prepare services. How could a doctor tell us that? I had a seemingly normal pregnancy. They didn't even know what was wrong with her, yet. My heart was broken. Anxiety was sky high. I was no longer scared, but absolutely terrified. I couldn't touch my baby, let alone hold her or try to feed her. All we could do was look at her and talk to her. And we did exactly that, every chance we had. I remember she would open her eyes every time I spoke. She knew her Mama was there with her. There was no way I was going to give up on her. I knew she was strong... afterall, she was my child.