Kevin is driving us home from St. Paul as I’m writing this. Grace next to me snug in her car seat. She has blue marker and glue all over her hair from our 8:30 am EEG. EEG’s are not very much fun – she hates the people touching her head, measuring, marking, gluing – and re-gluing. I hate to watch it – and you watch it up close – laying on her…. her arms tight to her body wrapped up in a sheet…..she looks at you and gives you this look – You! I can’t believe YOU are doing this to me? Please…. Help me! But you hold her and talk nonsense about how they are using blue magic marker this time rather than the orange one that they used last time. You tell her what steps come next…and you watch the tech helping you relax, because they know that you know exactly what’s going on and the crying and screaming- you aren’t holding it against them. Anyhow – Grace’s hair is blue from all the magic marker, and in the extremely colorful outfits we like to have her in today she looked a little punk rocker like. Dr. Doescher’s nurse said there’s a club – called Uptown -that Grace was dressed appropriately for today in her wild child way. I guess our visit today with Dr. Doescher that followed the comment was good. Painful – almost always. Affirming – almost always. And today a twist…. a direction to empower ourselves further – to go with our guts – notice that we have a little time – Grace is doing well – yes seizures are affecting her quality of life – but she is doing well. Our Uptown Girl – despite her appearance is holding her own. And now a few hours later and just a few moments ago – the song…… Had a bad day….. the song Kevin and I heard shortly after we heard Grace’s diagnosis in June 2006. It played on the radio. That song for me – is my call… my call to step to the plate…. to step to the plate mindful of sadness…. full of hope… relying on faith, love, family, and friends….with the knowledge that the little girl we’ve been given has been entrusted to us……. me and Kevin. We’ll continue to be mindful….continue to pay attention….and continue to stand in the box. All that to say our little Uptown Girl….she didn’t have a bad day 🙂
Joy