In the quiet hours...
When I finally get a few moments of silence, I feel an unsettling nervousness. If I am not at an appointment or on the phone with a physician, then I am wasting the all too precious time. I am in a constant state of movement pacing back and forth and reflecting on this life that is our new normal. The memory of the way we were drifts further into the dark abyss as time moves forward. When will the anxiousness subside and when will the internal balance of focusing on the children equal the focusing on the child?
It has always been easier to turn away from sadness when it wasn't my child. Now I see the pain that families go through in all directions. Their lives consist of abrupt endings or a child's struggle to fit in amongst peers. I pray that no child must tragically journey down the road of uncertainty. I didn't want to feel that engulfing sadness. It is so difficult to read about and be one of those families; those special families that share the eternal bond of kindred spirits. Committed to the support of each other and built on a foundation of love and hope.
When I finally get a few moments of silence, I feel an unsettling nervousness. If I am not at an appointment or on the phone with a physician, then I am wasting the all too precious time. I am in a constant state of movement pacing back and forth and reflecting on this life that is our new normal. The memory of the way we were drifts further into the dark abyss as time moves forward. When will the anxiousness subside and when will the internal balance of focusing on the children equal the focusing on the child?
It has always been easier to turn away from sadness when it wasn't my child. Now I see the pain that families go through in all directions. Their lives consist of abrupt endings or a child's struggle to fit in amongst peers. I pray that no child must tragically journey down the road of uncertainty. I didn't want to feel that engulfing sadness. It is so difficult to read about and be one of those families; those special families that share the eternal bond of kindred spirits. Committed to the support of each other and built on a foundation of love and hope.
I often hear this is the easy time and that when she is older will come a landslide of physical and social issues I have yet to see because she is still "so young." Is there really no other way? I am there watching the pain my daughter feels as we are seeking answers. I feel her every tear drop like needle a through my soul. I am there to hear every word that brings further disappointment. I am responsible for reciting to family and friends every bit of information received from every physician, therapist and parent I talk too. Maybe that's why I dread the question "so what seems to be going on with Ellie?" I always feel caught off guard with that question. How is it possible to rendered speechless when I have a novel of paperwork.
Even though there are days when I feel that the world is just overwhelmed with sadness, a sunny day appears and I walk this beautiful harbor and thank God for all the beauty that I am so privileged to see and I just wish.... that her stillness wouldn't alarm me, that her blank stares wouldn't worry me and that her future wouldn't scare me.
Even though there are days when I feel that the world is just overwhelmed with sadness, a sunny day appears and I walk this beautiful harbor and thank God for all the beauty that I am so privileged to see and I just wish.... that her stillness wouldn't alarm me, that her blank stares wouldn't worry me and that her future wouldn't scare me.
