Well we have two and a half weeks until we go to Chicago to meet with Dr. Frim. I cannot seem to wrap my mind around what may be happening in two weeks. I can barely make sense of what happened last week. I find myself sitting at my computer night after night trying to make sense of something that may never “make sense”. I am here trying to find a way to “fix” something that cannot be fixed. I cannot make my mind stop. It keeps turning and spinning. I know I send my mind into fits sometimes but better to be fit than fried.

So here I sit. I feel that uneasy “calm before the storm” feeling that I know all too well. I have had more deja vu’s in the past two weeks than ever before in my life. That feeling of having been there before. I know that I was prepared for this journey long before I ever existed. Its wild to have those split seconds in your existence when you know and can remember that preparation.

I watch my daughter and I realize that what is about to happen may change our lives forever. As if the past two years haven’t been enough, we may be looking at something bigger than we could ever have imagined. I look at my princess and I think about how wrong it is that she is this tiny perfect soul trapped inside a body that is failing her. She is digressing by the day. She is no longer making attempts to walk. She stands on her tiptoes and falls over more than any child I have ever seen. Her poor head has seen more bruises in 16 short months than many of us have experienced in a lifetime. Her body has been wracked over and over again by surgeries and narcotics. I see her everyday and instead of seeing more life in her, more smiles, more happiness I see less. That is what kills me. That is what hurts me in ways that I cannot explain. I don’t know quite how to explain what this baby girl means means to me. Seeing her change, and not in a good way, rips my heart to pieces.

There are so many things that I am hoping to find in Chicago. So for tonight to quiet my soul I will share. If you are out there and praying for us here you go.
I hope that we will find answers to the questions that are haunting our minds.
I hope that those are answers are NOT we anticipate and fear.
I hope that we will find peace for our hearts to be able to handle those answers no matter what they may be.
I hope that we will find rest for our souls in knowing that we are doing all we can.
I hope that there is medical intervention that can change the outcome.
and more than anything else….
I hope that we will find someone who can help our daughter because we cannot.

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