Sometimes CDKL5 just HITS me hard!!

So as I said in the last post we had a day full of appointments, which of course meant sitting in the waiting rooms, well waiting. We came out of one appointment and the very large waiting room was pretty much full, the only spot to sit and fit Jen's chair was by the chalkboard and the little table full of kids with a hospital volunteer coloring and chatting. I was sad anyway from the appointment we just finished. The volunteer seemed to recruit kids, inviting them to the table. Not a glance, not hello to Jen. So of course now I had something to do while we waited. There were other kids like Jen there, the waiting room is big and we were at a childrens hopsital. She didn't make any contact with them either. I know my daughter is different and yes very disabled. But i guess too scarey to say hello to, I didn't expect her to ask her to color, but acknowledgement, absolutely, it was like she made us invisible. Jen was sitting quietly with me, which is like I said before, very different, for years I sat in waiting rooms trying to quiet her, feed her, anything to quiet her as she has such a loud moaning voice. But this day, she was happy, smiling, quiet looking around. Again I don't know what she is aware of, I only hope she doesn't realize too that no one except for another parent with a boy in a wheelchair, spoke to her in that waiting room, not even the pediatric volunteer. So much has been taken away from Jen with CDKL5, but it is sad society still is so afraid of a person in a wheelchair, so sad.