Some thoughts on my first National Tay Sachs and Allied Disease conference. There will be many posts to come as I process this past week but I wanted to get some of them out there quickly before it fades. -The first family I met had a 16 month old girl you looked just like Talia, down to the curls in her hair. What was the first thing we talked about? It wasn't feeding, or wheelchairs or the utter sadness of our common circumstances. It was how their hair gets so easily matted in the back of their head and how to best get rid of cradle cap. It was the most normal conversation in the midst of the most abnormal of times because our girls shared a disease, but they aren't the disease. They are girls with tangles in their hair-I felt Talia was fully understood and accepted in the space of the conference. People asked how old she was and then remarked "Look how great she's doing!" At first those comments made me scared. She's not great, I wanted to scream. She can barely interact, she's barely anything at all. By the end of the conference, after meeting more kids I understood that Talia is in fact able to tell me more than I gave her credit for. Able to express pleasure and displeasure, able to bring people joy- and that's not nothing. The joy and memories that Talia inspired in the bereaved parents was both heart warming and heart wrenching. These parents just wanted to hold Talia, feel her weight and remember the weight of their own children. The weight that still sits on their heart no matter how much time has passed. At this conference Talia gets to be the focus of attention, and I get to experience the pride of being Talia's mom. Parents return year after year because in that space they are known first and foremost as the mom of their lost baby. They return because in that room are people who have held and connected with their child. They return, as I will return someday, to reach out to the newly diagnosed and give them a way forward. I felt the love in the room, I felt the acceptance we all gave each other and I felt Talia's condition becoming normalized. She's unique, but not alone in this journey.I listened to raw stories of grief. Parents who had images of what the story of life would be and ending up in completely different genre.I was asked to recall a wonderful memory of Talia from before diagnosis. My mind stretched back. Was there ever really a time before diagnosis? Did I ever properly enjoy her or did I think, I'll pay attention to her when she's mobile, when she's able to give back and then that time never came.As I left the conference I felt that Talia was more alive in my mind than she has been at almost any point since her diagnosis. She is here, I need to accept the fact she may be here for a while yet to come. I have a renewed focus on the value of Talia's life. She is affecting those around her. She brought joy to the families at the conference, she has certainly brought wisdom to me, and she (through reading these stories) may have an impact on you too. I embrace this effect. It's what will remain when she is gone. The strength and wisdom she has shown me will be her living legacy, but at the moment, I need to get back to focusing on the reality, and not the legacy. The beautiful person in front of me, and not the painful future to come.