The Start Of A New Life

This started off rocky just trying to get by without Brad. I thought life was not get any worse, boy was I wrong. Before Brad died I had never heard of Ehlers-Danlos. After Brad's autopsy our doctor had told us the family should think about getting tested. That choice took me 2 years to make up my mind to do. I was so scared of the out come. I had seen what Ehlers-Danlos could do. I was just scared of knowing then I became scared of the not knowing. I had Emily and Chloe tested, it took 3 months to get the test results back. Our genetics doctor's office called it was Dr. Marvin Miller on the other end and and he told me he had good and bad news. Emily no and Chloe yes. In my heart I knew about Chloe, but a mother can hope. The news hit me like a ton of bricks. I can't put into words what that feeling was like. That started a mission to find anyone to save my daughter. My mission has not been easy not by a long shot. EDS (Ehlers-Danlos) is not well known about in the medical world. That was something I was soon going to find out! So I set out to find out the right info about what this was. Finding people with it or something on it, I had a life time of work ahead of me. On top of it all I had to teach it to myself and depend on other people with it at the time doctor's were no help. I have been at this for 5 years and still want to beat my head against the wall. Then trying to get doctor's to work with me grrrrrrrr. But along my way I have found a few doctors that I thank God for and I trust them with my baby girl. A lot of people have asked about Chloe when she was a baby, so tonight I will rack my brain trying to remember the baby years.