Today is a strange day. I find myself wondering what it must be like for a parent of a child with just one major disability. Not in a judgmental, try-a-day-in-my-shoes type of way. But I've recently reached out on the vast inter-web looking to connect with parents who might get the depth of each of the Carrot Top's issues. Some are extremely rare. As I have joined a secret support group for parents of kids with heart block, I've become hopeful and then a bit hopeless. These mom's are knee-deep in the struggle, don't get me wrong. But, I read a comment from a mom who's child was aware of their own symptoms and when to be concerned. I am just fascinated with this. The carrot top is 8.5 yrs old and is as unaware as one gets. We deal with SO much, there are days when I feel like i put in 8 hrs on phone with dr's, insurance, therapists, home health supply folks, etc only to have it start all over again the following day. I mean, on top of it all, I have to actually raise this child. He has learning issues, severe developmental delay, so many medical issues, sensory issues, social skills issues, yet, we still have to do homework, communicate with teachers, cafeteria managers, bath time, dinner time, snuggle time. I just wonder what it must be like to wake up as a parent of a child with A condition. to be able to be so in tune with that condition and specific ups and downs. To be able to explain all of that to your child and have them understand. Right now my days are filled with trying to grill the Carrot Top on his DANGER limitations. And trying to balance that with making sure those limited activities are replaced with something safe and purposeful and fun for him.

Today it dawned on me that sometimes, when I feel most alone, there has just got to be someone somewhere feeling alone for the same reasons. When I think of the next few months, I want to crawl so far deep down into the earth that the carrot top and I can wind up in another dimesion or something. Somewhere where we are on the other side of all of these surgeries, procedures, tests, schools, special ed, autism, decisions. And I have this gut feeling that as I type this there is someone who is feeling the exact same way.