It’s time for me to switch from Caringbridge. We’re no longer a family going through a “health journey” (their words, not mine), we’re a just a family going through our own journey. It may not look like yours, but it’s pretty darn great.

Day +2666 . . .

(that’s post transplant – stem cell transplant. Go back to http://www.caringbridge.org/visit/jacktorrey to start at Day -11)

We had a wonderful month on Block Island this summer. Block Island’s our place to reconnect with the Torrey family and recharge. It’s also a place were we’re all allowed to fall into Jack Speed – days without schedules and must dos. Days where we can simply enjoy what’s around us. And, better still, days filled with things that Jack can do with us, not leaving him behind as a witness. This year we return with our batteries charged, ready to face a new year AND we return with a new title for the book.

I started the book several years ago sharing our family’s journey as we battled ALD. I called the book “The Talking Dream”. The title was a direct reflection of where we were five years ago. We were doing well (better than most people assumed we’d be doing under our circumstances) and we were dreaming of words. We were desperate to hear Jack’s voice again.

Joan Didion once wrote, “We tell ourselves stories in order to live.” The story I was telling myself as I wrote that first version of the book was that one-day we would return to the family we were before Jack’s diagnosis. Our proof would be found in the form of Jack’s voice. Several years ago I couldn’t imagine a life where our family would settle for anything but the “Talking Dream” becoming a reality. I couldn’t have imagined that we COULD be happy without Jack’s words. I needed that story so that I could survive – I think we all did.

While I still have the “Talking Dream” and I still hold out hope that Jack will speak some day, as I sat down to rework the book I realized that our story has changed. Our story is no longer about achieving our dream, it’s a story about our family finding a way to establish and except a new reality. And, we’ve adapted and we’re thriving – even without words. This new book is about our family falling apart and finding a way to put ourselves back together.

The last seven years have been brutal but we’ve dug ourselves out of the trenches and found that life can be quite wonderful despite a pile of challenges. There’s so much that Jack can’t do, but he can still do a lot. We appreciate that Jack is lucky to have a wonderful “quality of life”. He is healthy (except for the brain damage, Addison’s disease and Epilepsy – it’s all relative in the ALD world) and he is happy – unbelievably happy (almost creepy). Without words, Jack has taught us a great deal. It took us a while but we’ve finally managed to adopt his outlook. We’ve accepted our circumstances, learned to appreciate our gifts, and do our darndest to enjoy our lives. THAT is our story.

As I reworked the book and firmed up the direction it was headed, I knew I needed to find another title. “The Talking Dream” no longer seemed relevant. One night I was sitting on the porch in Block Island with my mother-in-law and sister-in-law. We were drinking too much wine (or I was, I cannot speak for them) and catching up on the year’s activities. I shared that I was once again working on the book and needed to find a new title. We tried to come up with some alternative names. It was late and our heads were a little foggy thanks to the wine, but we started throwing out ideas. The one thing we agreed upon was that we needed the title to include the word “smiles”. Jack’s challenges/our new reality is tolerable because of his smiles.

I left the porch, loving my Torrey ladies, to return to the cottage (thank goodness for a good flashlight and comfortable/flat shoes). I knew we were heading in the right direction, but as I tried to fall asleep I was still obsessing. I thought about all the Caringbridge posts over the years that have stayed with me. I remembered one that I wrote as I was beginning to realize that we were going to survive. I described our family no longer being like a house of cards but sturdier. “It’s as if we’re held together with duct tape – not pretty, but strong.”

Smiles and Duct Tape – How our family glued itself back together.

Love, Jess