Every time I head into the hospital with her, no matter how minor the test or procedure, it is very difficult. Everything comes flooding back and the very *realness* of her condition is front and center. It is so hard to sit there and not just put on a brave face for her... but pretend that it is all fun and exciting... while I am literally pushing back tears. I know that our situation is not the worst case scenario. Hell, most of the time we don't have the sickest, most disabled, kid in the waiting room. I understand that in many, many, ways we are extremely lucky. Kid is alive and well. She is developmentally fine, and growing and learning as she should. She didn't suffer any damage from her seizures and seems to have no side effects from her medication. We are very blessed. And yet we have a sick kid (for lack of a better term). Something is wrong with her and we don't know why, or what really, or how to fix it. No one does. We just wait and hope, and wait and hope, and educate ourselves the best we can.
While her condition is (hopefully) being managed with her medication... the very medication itself is a twice daily reminder that something could go wrong. When you come home with your perfect little baby you cannot be prepared for a day when everything changes. It's outside of your comprehension. Until it does your child's health and progress can be quite greedily seen as your right, a result of your efforts. Then one day all of your assumptions vanish. The very ground you stand on falls away and you are left in someone else's spot trying to make sense of how you could have flip flopped so quickly from one side to the other. From the happy, proud, mother of an *advanced* child to that of a disabled one. To be transported, literally overnight, from someone who would have pitied (in the kindest way possible... of course) a mother in my circumstance, to one who is pitied.