"A year ago yesterday, I sat in my child’s pediatrician’s office listening to her say words I have never heard before. Our lives changed forever, and the word Chiari became an everyday vocabulary word in our house. Emotions were everywhere, and today they still are, occasionally. But we have learned to make it into a positive. I don’t let it control my life, nor do we dwell on it. Instead we spread awareness, that one-day a cure will be found. I have heavily involved myself in the non-profit American Syringomyelia & Chiari Alliance Project, to help educate the medical community where I live, to help the patients that suffer from these conditions, and to believe one day my grandchildren or great grandchildren will not have to face this journey Kaylie will travel for the rest of her life.
The year has been a crazy ride, and I am so proud of my family of how well we have gotten through it all. We also Thank all of our family & friends who have rode the ride with us, and never left our sides."
I wrote that yesterday on my Facebook page. Tonight I was watching Grey's Anatomy, part of it was about this mom, that fought for her child.... her "mama gut" told her something wasn't right, and they finally found out what was wrong.... But Meredith told her she "fought" for her child. I get all that.... and I love that I do! Because it was exactly how I have felt at times with Kaylie... you feel like your going crazy, about how you talk about symptoms, explain things, or even thinking about the decisions you make about traveling for treatment. But in the long run... you know you made the right decisions, and all that time you were just fighting for your child.
It shouldn't be that hard for parents. They shouldn't have to fight for good treatment, doctors that listen, teachers and schools to understand. But it is what it is.... once over one big hurdle, it seems another is around the corner. I will always fight for my family, that's what love is....