Dear Henry

As I told you, Mom didn’t come to the Bat Mitzvah, so it was a huge relief when this woman walked up to me before services and introduced herself. It was Rachel Grossman, who aside from being the mom of Jacob and Talia, wife of Alan and resident of Chicago, has the distinction of having once had a conversation with you.  Jacob has FA and when he was diagnosed she got in touch with us through friends and family. I remember talking to her, and Mom visited with her on a trip to Chicago. But what really made me light up was when she reminded me that she and you had a nice talk with you on the phone about what to do to make transplant at University of Minnesota a better experience for Jacob. 

Your prescription: Magic Closet. 

I didn’t ask her if they actually implemented the whole “closet in Jacob’s transplant room filled with toys and other surprises that produce magic to heal pain and boredom” when needed thing. I hope so. Dr. Henry Strongin Goldberg knew what he was talking about. 

Rachel and I sat together and marveled at the beautiful ark. It was huge. I had never seen so many Sifrei Torah in a single ark before. I think there were at least 12 and they went all the way up to the ceiling. I had visions of rabbis suspended by wires –Mission Impossible style – flying up to grab the uppermost Torahs. We were looking for words to describe it and I think we settled appropriately on “awe inspiring.” 

But the old scrolls really couldn’t compete with Molly for our awe. There she was up on the bimah. As she and the Rabbi and Lisa all acknowledged, she shouldn’t have been there.  As we know all-to-well, Fanconi kills kids, but in Molly’s case, love, science, doctors and faith all came together to create a modern day miracle. People throw around the word miracle a lot. It describes everything from a fake mayonnaise to a World Series championship, but I am confident that everyone sitting in that synagogue was privileged to witness the real deal. 

Molly leading services, reciting her portion and delivering a D’var Torah was probably the most wondrous and wonderful thing that I will experience for a long, long time.  It was, as Mom knew it would be, probably one of the saddest things we could experience as well. It was as concrete a reminder of you dying, of us failing, as most anything could be. But as I explained, I like hitting my head on that wall. 

In her remarks, Molly talked about her portion and how it tied in to her remarkable life story. Her takeaway was the importance of humility. She said that it was incredibly humbling knowing what it took to get her to that moment. From her parents to her doctors to god, she fully understood how much work, sacrifice, innovation and love it took to bring her to the bimah.  In addition to humility, Molly showed great wisdom- wisdom well beyond a Bat Mitzvah but befitting someone who has traveled the difficult, almost impossible journey she has made in her short 14 years. 

I was humbled being there. I was honored to be there and that Molly and her parents thought to make us a part of the service.