Since Tomas’ diagnosis I do not live in this world. I spend my wake hours in a completely different universe. My reality is full of schedules, medications, research papers, advocacy meetings, therapy sessions and obituaries of children.
My universe does not contain rose colored glasses. There is only 20/20 clarity vision that is reserved for parents of children who frequent the brink of death.
This clarity is liberating, it divides your confusing world into very black and white parts. It’s either good or bad, it either helps or hurts. Everything can be reduced into the primary qualifiers, simplicity that cats out the pointless BS designed to benefit someone or something.
I still slip into thinking that this object or this event would make me happy, but happiness is something else. I have never felt this deep, unconditional love full of fear, pity, anger, and sorrow wrapped into this immense blissful feeling that all is right with the world. Death of my firstborn and severe disability of my second born had turned the impatient, judgmental, and perfectionist me into a zen master. I do not look into the past, it is too painful. I do not look into the future because it is terrifying. All I have left is this moment and the conscious choice to add one more positive through or action into this world.
Today the immense black hole of grief for ones child opened again. It opened for a friend with whom I share very unique and special bond. My heart hurts just like it did after I called my mother that our daughter died. The one sentence containing all of totality, all memories and the future that will never be.
Our black holes are so same and so different. Death can be uninvited intruder or a welcomed savior. It is always raw and surreal. It is always most cruel to the ones left behind.
As my community will mourn yet another child I know this painful reminder of our children’s very fragile life will only add one more hug, one more minute of therapy, just one more step when we were ready to give up. The grief will yet again fuel the fire in us to give our children better future, even if the future can abruptly vanish tomorrow.
ktojoy 