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But in this lifetime, my purpose is my son. My purpose is to raise awareness for this awful thing we live with every day.
“How are you still smiling?” he asked me. I admit I didn’t know how to answer. “Because I don’t want to cry” is what I told him.
I don’t know a single EB mom who wouldn’t sell her soul to take their child’s pain away and would surely give up any strength, wisdom and courage gained through their journey to see that happen.
Having a child with EB means having a house full of mass quantities of bandages and creams, all of which will only last a month.
“Hang in there, things will get better”. When I hear that somewhat canned statement, while on one hand I appreciate the kind thought, on the other hand it reminds me of the undeniable truth. Nicky will never get better.
We focus on the present. One day at a time, many days one moment at a time. This is all I can do.
Love & Light,
