This isn't a feel good post, nor is it happy or amusing. It may be TMI, but when I started this blog I decided I would write about what I was thinking or feeling. I wrote this last night, slept on it and read it again this morning. It pretty much sums up my week and my feelings about it, well at least as best I can write about my feelings, which in actuality is kind of hard to do.
This is my baby girl. Well, actually she's not a baby any more, at least not in years. If I asked you to guess her age I don't think anyone would say they thought she was 35, but she is, in years. This picture was taken at her 35th birthday party. She has the most beautiful smile and she is always, always happy. Sara had a brain hemorrhage at 5 days old. It was a devastating one. She had continuous seizures that lasted for 5 days. I hung over her isolette and willed her to live. She developed hydrocephalus and had a shunt put into her brain at 2 weeks. Because she was an infant the only pain med they could give her after surgery was tylenol and I watched my child shudder in pain each time someone moved her isolette or her body. It broke me. Sara also has cerebral palsy, a seizure disorder, and she is developmentally delayed. This happened to her because not one, not two, but three doctors didn't take the time to look up a drug that one of them prescribed for me during my pregnancy. If they had they would have known that the drug caused bleeding in the brains of newborns and extra Vitamin K should be given to any babies born to mothers who were taking this drug. Instead all three doctors told me there were no problems associated with the drug. .... there are no words for my rage.
Usually I can tuck my true feelings away and take what life has given Sara and us, but there is always something that brings those feelings back and I find myself again engulfed in an anger that has no source of comfort.
Sara lives in a local community residence with other adults who are mentally and physically challenged. About three weeks ago she had a fall in the hallway. When she was home for the weekend I noticed that she was favoring her right side. Sara feels pain but she cannot locate it for us. Her language skills are limited and she is unable to provide information. I took her to the doctor the next week and we have spent this past week having multiple MRI's and CT scans of Sara's whole body. I would say Sara has spent at least 6 hours on the table listening to the MRI machine thump away. SIX hours!! She doesn't understand why she's there. For a time there was a concern about her shunt, but that was resolved by the radiologist. Today (Friday) it was determined that Sara has a large tear in her right calf muscle and a small one in her left calf. Considering all of the other things it could have been this news was a relief. However it just kills me to know that she has been in pain for over two weeks and no one could help her....and I am once again overwhelmed by a horrible, unrelenting, consuming rage. I wish I could say that I forgive them, the irresponsible docs, but I don't, and I never will. Not one of them ever apologized to us. Yes, there was an out of court settlement, which was a pittance by today's standards, but money means nothing to me. It will not bring my daughter back and I will always grieve for the Sara that should have been. Please don't misunderstand me. Sara is much loved just the way she is. My anger is not for me, it's for her. She can't communicate her wants or needs, her pain. She will never go to college, get married, have babies of her own. Three well educated men did not follow medical protocol and my daughter pays the price. There is no way to make peace with that, and yet 35 years later, I am still trying.