Just recently the EB community lost two RDEB teenage souls and my heart broke. This is the same exact diagnose as my son’s, so when this happens I always wonder when will that happen for him. Tomorrow? Next year? 5? 10? The future is scary. It’s unthinkable. It’s something I cannot think about. The only thing I can do is hug him, kiss him, love him. To me, however, losing him, would be losing child #2. Child #2 that I would have to bury, and that’s probably why over the years I’ve become such a Mama Bear, someone who will fight tooth and nail over his care and over people who relentlessly judge me about every little tiny thing I do to care for him. Forgive me for wanting to delay burying my second son as long as humanly possible! If I am doing something in particular that perhaps otherRead More →