Thursday, February 28, 2013
As I sat at children's Hospital with TJ this morning, no children around us, because we were the patients; i realized that just over 8 years ago I had never heard of Anencephaly. Then my niece, Avery, was born and passed away. I still didn't know much about it. To be quite honest I had no idea how to pronounce it.
Today as I sat in a Human Genetics Office I am quite certain I knew more about it than the med student. I have spent the last 5 years researching, asking questions, reading, anything I can do to wrap my head around this horrible defect. For the last 5 years I have tried to find somewhere to go, Someone to listen. Someone to acknowledge that this was more than a fluke.
If I have learned anything in the past 5 years it is how to be an advocate. For myself, for my children and for my future. I have learned that if you want something done you have to keep trying. I never wanted a concrete "reason" or a definitive answer. I just wanted someone to listen. Someone to hear our story and to tell us anything!
Today we got that chance. We were able to spend two hours in the Human Genetics Department at Cincinnati, Childrens. We saw a Genetic Counselor who asked questions and actually cared about the answers. She asked about how we coped with our losses, about the support I had with Prenatal Parnters For Life, they asked about everything I had written in my emails - which made me realize they all took the time to read them. They asked about our family history and my pregnancies. Which still to this day I seem to know dates and details like it was yesterday. She was kind and compassionate and made sure to ask our babies names. Little things I did not expect on top of the "big " issues at hand.
When the Doctor came in he was not what I imagined. Being an Associate Professor in Human Genetics dealing mainly in research and numbers I didn't expect him to be so personal, but he was. He was compassionate, he was well aware of our situation and he was so insightful about the future. He told us about what they are doing to try and figure out the hereditary basis for Neural Tube Defects, he told us they may not know it in our lifetime and that cases like ours are not the common. He spoke of one other family in Cincinnati who had come to them for help. We know this is not common, it was so nice to have an expert go over facts and figures that I have spent hours researching. He told us about many of the genes they have looked at as possibilities for causing NTDs. Even speaking of a certain gene mutation that I have already been tested for because I found that research as well. He gave us real numbers - for us. Our chances are 80% that we would have a healthy baby- which leaves 20% that we would not. He also told us that if we would have another baby with a Neural Tube defect they could do a study based solely on the 3 of us, TJ, the baby and I. That would give them insight into exactly what was changing between TJ and I being healthy adults and the baby having the defect. Things I would have never even known were possible! This would lead us to a lot of information for Anna and our nieces in the future. Because if our risk is 20% without knowing the reason behind our babies having a neural tube defect, it raises their risk to 20% as well. That doesn't seem horrible, but the normal chances are 1 in 1000. So compared to that it is pretty high. I hate to think that they would ever have to live through the heartache that we have.
So now where do we go from here. I don't know. We may never have an answer. But, at least at this point I know we have a wonderful team of doctors and researchers working to find one. And we have a little miracle sitting in her first grade desk right now that is proof that the 80% chance is a great one.
Friday, February 22, 2013
Wednesday, February 13, 2013
I have grown up so lucky. Not only have I grown up in a house filled with love for my sister and I, but in a house where my parents loved each other as well. These two have been through hell and back and have done it hand in hand. They are a big part of the reason I am married to the wonderful man I am today, because I was blessed to have such an incredible example. Even though I know my parents aren't your "average" married couple - together 40 years now, sometimes I see a glimpse of this love in a different way. My dad posts something simple on his Facebook page and it melts my heart - makes my day and gives me hope and faith in love all over again.
Friday, February 8, 2013
Sometimes I have to remind myself that he was not born to me. He is ours in every way. He has his daddy's sense of humor, his listening ears (or lack there of!) and the hop in his step. He has my mannerisms, he has my attitude and he has my love of Target. But most of all he has our hearts. He has also lived through things that i will never know. Things I never want to know. Sometimes I have to remind myself that even though he knows love now ...there is a time he may have not. Even after 3 years he feels better with a cup of juice in one hand and a sandwich in the other. He may not want them now, but he knows they are his. Little things like this that remind me that he has a history - 14 months that are mostly undocumented. Did he dress up for Halloween? Did he have his first birthday party? I will never know. The best I can do is make sure that every memory he makes from 3 years ago forward is one to make him feel safe, secure and happy. So I have to remind myself that sometimes when he does something to make his dad and I crazy he is a little boy - a crazy, happy, well adjusted little boy- who has been through hell and back before we found each other. We are so lucky to be a family and to share our lives. He has made Anna a wonderful sister and even more compassionate than she was before. He has changed everyone around him for the better. So those days when I scream his name as I find deodorant "painted" on the walls and apple juice covering my floors, I know that he knows no matter what -he is loved.