Feisty Pants was eaten by dinosaur this weekend. And I wouldn't have it any other way. Allow me to explain. She has an amazing nurse who goes to school with her. Now, due to unexpected luck (and a LOT of paperwork on the nurse's and FP's social worker's part), her insurance pays for some after school nursing too. Her nurse and I talked and decided to have her occasionally take her out (you know, as if Feisty Pants were a real live girl or something). This is a really big deal in a severely disabled kid's life.
In some ways, FP has seen so much other kids never get to see. The inside of a medical helicopter. Window washers on the outside of a hospital playing peek a boo with little kids inside. Sixty-five thousand bikers hauling teddy bears and barbies for the world's largest toy run right up to the Children's Hospital doors. But also nights of 45 needle sticks, dozens of hospital stays, scary faceless masked monsters who don't understand her garbled speech and do painful medical procedures, adults and kids who get scared by her disability and shy away. Scary moments when she cannot breathe that terrify both her and me. But also traveling troubadours who go from hospital room to hospital room singing to anyone who lets them. Strange dogs with almost miraculous empathy who lie next to kids and let them forget their illness for a little bit. Complete strangers whose compassion for others make them seem almost like family. Her life has been nothing if not interesting in weird and wonderful ways.
However, this was not the journey I would have chosen for her. I wanted to bless my daughter with a boring, humdrum life of friends and toys and boys and barbecues and birthday parties. Feisty Pants has those but in sometimes limited ways that make me long for her independence and autonomy. I want her to slam doors and make messes and initiate movement and rebellion and harmony all on her own. Instead, she has a life of therapy sessions and doctor visits and year round schools. I don't think she cares. She's never known differently. She is an inherently happy kid.
But this weekend, she went to a dinosaur exhibit. Without boring old me. And the baby t-rex tried to "bite " her. She was thrilled. Just like any science nerd would be. She even got the oh so important t-shirt. This weekend Feisty Pants was eaten by a dinosaur, and I wouldn't have it any other way.