I met a woman who travelled from Kentucky to Chicago just to hug some kids with CdLS ... her little CdLS angel is in heaven now, and you could literally watch healing take place in those hugs.
I met a photographer who gave up shooting supermodels in Milan and Paris to take pictures of kids with rare genetic disorders because he is passionate about redefining the word 'beautiful.'
I watched Charlie walk up to a new friend and say, "My sister has CdLS just like your brother, wanna build a sandcastle?" They didn't discuss CdLS at all after that. It was wonderful.
I attended a banquet with over 100 other families just like mine. At the dance after the banquet, I watched kids with CdLS and kids without CdLS dance the night away.
I held a baby with no hands. She was beautiful.
I heard a boy talk about how his experience with kids at school bullying his sister prompted him to write a book. Charlie heard that boy, too, and asked me why anyone would make fun of someone with CdLS.
I told my son about that one time at Target. He asked if I yelled, "Why are you making fun of my daughter?!" I told him that sometimes kindness and love are a better response. He agreed.
I saw a mom running panicked down the hallway because her son had pulled out his feeding tube. I had a syringe and helped her put it back in. It was my first time being the experienced one.
I sat crying with a group of women as we all took turns telling about "when we first found out."
I saw an older boy with CdLS play with Charlie in the hotel pool. At the end of the weekend, he saw Charlie in the hallway and came over to say goodbye. Charlie said, "I'll see you next year!" Charlie didn't think of him as his new friend with CdLS, he thought of him as a new friend.
I met a GI doctor who specializes in kiddos with CdLS. She told me I was doing it right.
I stayed up late with other parents like me, laughing until my side hurt about all the very silly mistakes we parents make when we are first learning how to tube-feed our children.
I realized how much I had missed out on before my world was rocked by the letters CdLS.