The last few days have been particularly difficult as we say goodbye to precious Chloe Lee Jones. This precious little angel spent all of her days fighting to survive, her entire 3 1/2 months were spent in a hospital with her mommy and daddy by her side. I am having a difficult time trying to understand why her life and the lives of so many is one of intense suffering, it just does not seem right, it does not seem fair. Why on earth would a child be brought into this world with no hope?
For a living, I am first and foremost a mom, a mom who happens to take pictures. I capture all of the wiggles and giggles…the pure joy of what childhood is supposed to be. There is no greater joy for me than to see the innocence and the purity in their smiles. I truly love what I do and I love children.
Maybe that is why I am struggling so. Maybe this is why I am finding myself so angry.
I really wanted to post something sweet and special for Chloe, but the reality is I just really cannot find the words. What can I possibly say that will make this better? Nothing. A baby is gone and her mommy and daddy are left with only memories.
What I will say is this…it is not over…
I hope that we can all continue to fight and finally put an end to EB and to all of the pain and suffering that it brings. Please in honor of Chloe, all of the EB angels and those who still face this disorder every day, tell at least one person about EB, post something on your wall, do whatever it takes to spread awareness and be their voice. Do not give up, they need us to fight! We can be the change!