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.
While we are all hoping and praying for Ellie, I know we are all hoping and praying for you and your family too. As a Mother of a special child and even though my son has a diagnoses and some questions are answered there is still that fear.
ReplyDeleteThank you for your kind words!
DeleteI agree with Deanna ... Even though our son has a diagnosis we still feel the same way you do.. there are still the same fears of social issues and peers everyday, and now with not only son #1 but now son #2 headed to the neurologist on Thursday my new normal is upset again with the thought of not 1 but 2 and the search for answers continues again.. the paperwork all over again.. It will never stop, but the strenght within yourself and you as a whole of a family carries you through. It must or surely we mothers of children with special needs would leave behind children that really need us to be their voices. Without us.. they have no voice and who greater to advocate for them, but us.
ReplyDeleteThank you for your post!
Delete"When will the anxiousness subside and when will the internal balance of focusing on the children equal the focusing on the child?" Your post really resonated with me. My son is 18 months now... things are always changing, new struggles emerge, new treatments needed, new doctors or continuous doctors appointments on the calendar... I ask myself that too... "when will the internal balance of focusing on the children equal the focusing on the child?" Hopefully one of these days, we'll both find that balance in our lives, with our beautiful miracles.
ReplyDeleteBeautifully said Alicia...I hope for that too :)
Delete