Being here, in the same vacation spot we were last year when Rebecca fell ill, wasn’t as difficult as I thought it would be… until last Friday, August 15th, the first anniversary of her seizures and life flight to CHOP.
That night, the next day, and the days since were much more difficult for me, as we moved through the anniversaries of her first and second surgeries. Today is the anniversary of the third, when they implanted the drainage tube that probably kept her functional and complete until the last few days of her life.
These days have been so difficult because I’ve been experiencing what I’ve come to refer to as “divergence stress”. I feel as though last year’s August and this year’s are running in parallel, branching from this past Friday. I am here, sitting in our rental, looking at the beach and the ocean waves, and feel as though another of me is up in Philadelphia, gaunt and teary-eyed in a dim intensive care ward and hoping against hope that our daughter will survive, while I sit in sunshine and luxury, wondering why I am not with my little girl who so desperately needs me right now, who I so desperately want to hold and talk with again.
Or worse, that another me isn’t up in Philadelphia, but Rebecca still is, lying unconscious and alone in the intensive care unit. As though the loop has restarted, but I have stepped out of it, abandoning my baby to her cancer.
I know this isn’t the truth. She is not there. We are not there. We are here, now, and she is not.
But someone else, right now, as you read this, is there. Another family is assembling around a PICU bed, surrounding their child and hoping against hope and sick, choking fear that their beloved will survive. Maybe they will. Many do.
That family, and all the families still to come, need research to give their children a better chance to live. Many of them will need a place to stay while their child endures weeks or months of surgeries and treatments, just as we did.
To that end, our friends Nancy Massey and Kimberly Blessing have launched a fundraiser with two aims. The first is to support research into pediatric brain cancer. The second is to sponsor a room at the Philadelphia Ronald McDonald House for a year. The $10,000 fundraising goal will allow both. Going beyond that goal will make it possible to support even more research.
It’s not much to make sure those other families have a welcoming place to stay and a better chance at continued life than we did. If you can, please make a contribution.