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.
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