Funniest thing. For the second night in a row, Captain Awesome and I were sitting on the floor splitting an appetizer and a beer from the hotel restaurant for dinner while Chloe valiantly tried to not go to sleep. As we picked at the food Jared says, “I can’t believe we are this lucky.” Side note: this sort of comment is why he is often refered to as Captain Awesome. Lucky. Lucky? Lucky that our daughter won the genetic lottery with a disorder that could take her life any night as she sleeps? I laughed as I thought about his statement.

But he was right. We are so lucky. Better yet, blessed.

Claire got something that could be diagnosed. There are trials for it because many amazing families have paved the way for us. It is a gift for Claire to get to participate in these trials, to be able to know she is doing something for herself and her peers living with Rett syndrome.

We’ve been able to have great jobs and family that help so that we can travel to this clinical trial. We are able to rent a car and take Chloe on outings and stay at a hotel that has a great restaurant.

As I sit here I struggle to believe that I am really getting to live this great adventure. It’s so much better than I could ever try to explain. While sometimes it is very scary out front, living on the edge I must admit that the view is spectacular and I am so grateful to take a moment and bask in it.