I've sat in dozens of doctor's offices over the last 7 years. Waited for countless hours on them. Listened to their advice, followed their treatment plans, and done all that they were asking of me. I can navigate my way around a hospital. I can live the life for extended periods of time. I've learned who I need to get to know better than others and who has the power in difficult situations to make our life with Ashley a little easier or make it the most difficult. Its a skill I've gained over the last several years and one that if anyone had asked I would have gladly passed on needing to have.
I say all of that to also say that never, for one moment, in any way, shape, or form has it been easy. Parenting Ashley Kate and having the "buck stop" with me and my decisions for her health care has been and continues to be the hardest thing I've ever done.
As I stood in his office this morning crying my eyes out right in front of him, the one thought that continued to come to mind was this, "He has NO IDEA". None of them do. I left his office crying, drove home crying, and sit here now crying. He, along with his colleagues, will go home to his healthy children tonight. He, nor will they, ever know or ever have any idea what it feels like to be us. We are stuck in the middle of a nightmare that we will never wake from.
I've said it before and its true once again, there are no easy decisions left to make. Each and every decision weighs heavy with serious consequences. I simply don't know what to do anymore.
I wish for one moment they could feel the weight that we feel. I wish for one moment they could imagine being on our end and know how desperately we need for them to be supportive. Its hard enough not knowing if we are making the right decisions without feeling abandoned by those whom you placed trust. When you add that into the mix all I can do is sit here and cry as I try and figure out what comes next.
If I could heal her and make her whole I would do so...in an instant...in a heartbeat. I would have never chosen this path for her. Never.
I'm struggling today. Waiting for a phone call that will decide where we are headed and what lies in store. I used to say that I would never want for anyone else to go through what we do each day, but I think I've changed my mind. I wish ALL her teams of doctors could experience it for at least one day. I think then their level of compassion and care might increase just a little. At least I hope that it would.
My heart is sad. Very, very sad because of what I know lies ahead of us. How I hope to have kind, loving, compassionate, and understanding people in our path. I think I'm too tired to be who I still need to be if they are not. I'm so very tired.