Slow progress...

He moved his head...It was small but it was movement. Earlier today I thought I saw him move his hand, but shook it off thinking it was my imagination...Simon and David saw him move his foot. These are small baby small that some might not even see them, but I am acutely watching his every move.

Over the weekend I have experienced the gamut of feelings...I have felt the depth of despair, I have lost hope, I have felt anger, I have felt hope...I have cried and then gathered myself. It has been exhausting.

I can't remember a time when I have been so deeply exhausted. This is the kind of tired that is so deep that you ache all over. My legs hurt from the stress and anxiety and, frankly, no amount of anxiety medicine is controlling my inner turmoil. This path is foreign...I don't like it...but we're here and I am determined that we will get to the end of this path relatively unscathed.

There have been so many hospitalizations, so many times when I knew the ropes, navigating these waters as been both stressful and worrisome.  In the course of two weeks we have met all four of the neurologists, crossed one off the list. I have advocated for our boy told them that we intend to take him home. There is no book of instructions, no place to go for help. I have send out please for information, sought the help of other parents who have walked this path.

I know that this path we are on is a long where there will be deep valleys and high mountains. This curvy, twisty path will not be easy, but I do know one thing...he moved his head and that's all I need to know for today.


  1. So glad to see progress no matter how small it may seem to others. Please know that there are many of us pulling for you and your sweet boy.

  2. I am praying for you and your family and especially Javad. He is a special boy and we miss him here at Rock Creek.
    Carol York


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