Hello Followers,
Well, I must admit that my last post was quite negative and for that I apologize. I can't even begin to tell you how much I have appreciated the great care that Gabby is getting while in this hospital. She is in one of the best hospitals in the world and I am so grateful. I will admit that my emotions do get the best of me at times when it comes to my daughter. I don't handle negativity too well and I sure don't handle people asking me how much I understand about my daugther's condition and her prognosis. I live everyday knowing quite well what my daughter's prognosis is. Everyday we live the reality that our daughter might not be here tomorrow and there is nothing worse then someone constantly putting in our face. We try our best to live day by day. I realize doctors have to distance themselves from patients and families, but I wish some would just have a little bit more empathy and compassion when talking about things.
I must admit that the Physcian I was quite upset with in my last post has done a complete 360. I don't know what caused the change, but he has been completely interested in learning about Gabby and her diagnosis. He is now educating his students about her condition and has even began researching info on his own. I feel as if I own him an apology in a way because he is unfamiliar with her diagnosis. Again, I just wish doctors can be more compassionate in the way they word things sometimes, and that is not directed towards medical professionals only, but to all society in general.
I have a new hope (hince the post title) that my daughter along with every other Hydran child will change the reality of this diagnosis. I hope that research will be done and there will be more education in regards to this condition. Hydranencephaly is not going away. More children are living longer with this condition and I will never quit advocating for the need of more education and research.
This post is dedicated to all those families who have a loved one with Hydranencephaly and to the wonderful staff at CCHMC, thank you for taking excellent care of my Gabby.
Beautiful and gracious post Jennifer. I really appreciated your comment that you live everyday knowing quite well what your daughter's prognosis is. I'm going to take that to heart. I feel the need to get defensive when the subject is brought up as though it might be a new thought for me that I might lose my son... but you've given me a new line to at least THINK to myself :) Bless you and sweet Gabby. She blesses me from far away.
ReplyDeletejarmerding,
ReplyDeleteThank you for the comment. You have every right to get defensive. I'm not going to lie when I say it doesn't upset me and tick me off, because it does. The reason it does, is because we do know the reality. No one knows the reality more than us parents because we do live it everyday and the thought NEVER leaves our mind. So the next time someone brings it up to you, all you need to say is " no one knows the reality more than us, we live it everyday". Love you, and bless you and your son.