The Tay Sachs conference was very different for me this year than last. Last year I cried all four days. Carmen was just 18 months old and everything was so new to us. I saw the older kids and thought, “No, no, this can’t happen to my child!” This year, everything seemed so normal. Seizures, suction machines, sleeping children. Nothing was scary, just the reality that we live with everyday.

The most emotional part of this conference was hearing the families’ stories. Such heartache. Many of the families lost children years and years ago. I often think that these few years of caring for Carmen will define us for the rest of our lives. Hopefully in a good way.

I also realized that these years with Carmen are flying by. Too soon Dave and I won’t be the parents caring for a child with Tay Sachs but the parents who lost a child to Tay Sachs. Not having Carmen at the conference this year was very strange, a sad foreshadowing of the future. This is a sobering reality that I hope reminds us to enjoy each day.

Dave’s parents and aunt attended the conference. Dave’s aunt sat in each meeting and translated for the families from Cuba and Guatemala. I bet she has never talked so much in her life! I was very, very happy to have Dave’s parents and aunt with us. Dave’s brother and his wife and son came to visit (they live near Boston). This was the first time I had met my new nephew and he is a cutie!

I attended the parents’ meetings while Dave’s parents attended the grandparents’ meetings. We all attended the medical research update meeting. The hope is that within four years, a gene therapy trial will start on Tay Sachs patients to hopefully stop and reverse the course of the disease. Four years!!!!!!!!!!! This therapy won’t be available in time for Carmen and the best candidates will be newly diagnosed. But, the thought of a cure is truly amazing.

Lauren had a BLAST. She enjoyed Kiddie Camp each day and brought home a bag full of decorated picture frames, bracelets, crowns, etc.! She loved playing with the other siblings, particularly Caroline who is the same age. I had to laugh as last year Lauren and Caroline both had long blond hair. This year they both have cute bobs! They share the very special bond of both having a sister with Tay Sachs. Here is a picture of Caroline and Lauren.

Lauren and I are home from NTSAD’s annual family conference. It was a whirl-wind weekend! Lauren had a blast. My calm, reserved child was bouncing off the walls! I think she talked to anyone who would listen! She especially enjoyed saying ‘hola’ to the families from Cuba and Guatemala.

I have a million and one things to do but will write more about our trip later.

Here is a picture of Lauren and me with Marlin and Mario. Marlin and Mario are a wonderful couple from Guatemala. We met them at last year’s conference. I was so excited they came this year too. Marlin and Mario lost both of their sons to Tay Sachs. When they met Carmen last year, Marlin cried.