Not the end...only the beginning

Last night I dipped in the pity pool...felt sorry for myself, felt that we might be forgotten. This morning I had an epiphany...I know others who feel this way. In the MTM-CNM community, the group of families who have children who share the rare genetic disease Javad has, many have lost their children. These families have been thrown adrift by the loss of their child. They have felt what it is like to watch others continue with their lives, while their own life has altered so dramatically that they may not be able to see above their own sorrow. I can't even begin to understand how they feel, these families, my friends, who watched their sweet baby move to the playground in heaven. Each breath they take a stark reminder that the earth does not feel quite the same. Each beat of their heart a reminder that their precious angel's heart beats no more. Our family experienced something life altering, spirit altering in March and yet, our boy is still here, every day making small