I can't believe this is happening. Some days it just catches me, as if I'm learning the news for the first time. How can this be? How can my time with my baby be so limited? How am I going to lose her?
When I watch her sleep at night and these thoughts creep in, I always think of the first moments I held her, smelled her, looked into her big trusting eyes. I knew then that my time was limited and that I wanted to savor every moment. I knew that some day I would have to let her go, let her fall and make mistakes, let her learn on her own, let her fail. I knew that it would be hard for me to see my sweet baby venture out, experience disappointment, sadness, heartbreak. But I hoped that the bumps and bruises in her life would make her more determined, would give her confidence in her own choices, would help her find her path. And I hoped that I could be there for her and, perhaps, help her through some of it. I can't believe that I won't ever see that…that her path will never be. It stuns me.
Sadly, I know I am not alone. Every day a mother loses a child. Every day a family is turned upside down. Every day a future is cut short. Every day millions of children die — from Cancer, AIDS, accidents, abuse…from diseases, like SMA, that few have heard of and from causes, like hunger, that could easily be prevented. It is overwhelming. It paralyzes me and makes me hold on to that sweet tiny hand even harder…wishing it were different.