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 incremental improvements.

Maybe this was part of the purpose...maybe this was my lesson to learn. I need to see broader, feel deeper, understand that when you feel adrift, someone needs to step in and remind you that you are not alone, that the breath that moves within your lungs has meaning. There are letters to be written, texts to be send...gentle reminders that we are not alone.

We need to remember that this is not the end...we are nowhere close to the end...this is only the beginning.


  1. You are not alone, there are many of us pulling for you and sending energy your way in support.


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