Why GiGi’s? Amado and Andrea

Our youngest son, Amado, was diagnosed with Down syndrome around my 19th week of pregnancy. He had already received a prenatal diagnosis of a heart defect, and we were prepared with lots of information regarding surgery to repair it when he turned 18 months. We were completely surprised by the Down syndrome diagnosis. The genetic counselor who delivered the news seemed incredibly sad and serious. It seemed like I was supposed to follow her lead and be sad – except I wasn’t. I felt alone, and in disbelief, but sad? No. I just said, “Okay. It will be okay.” I wasn’t sure if I was comforting the genetic counselor or myself.

While I remained optimistic about Amado’s arrival, my worry grew for the remainder of the pregnancy. What would his education look like? Would he be able to play baseball? Can people with Down Syndrome go to college? Are there opportunities for people with Down Syndrome to have real, meaningful careers? I reached out to the one DS organization that my OB had a pamphlet for and received a friendly email response but no real opportunities for connection for new parents or newborns. I was longing for in-person connection during my pregnancy. Amado’s birth was normal. And his newborn months were just like our older daughters’ newborn months.

At 2 months old, Amado was assigned to a physical therapist that I can only describe as an ANGEL! She taught us so much about low muscle tone, and what we could do to support Amado’s development. When I shared that I wanted to meet other families with children with DS, she said, “I can name about 8 that live in your area!” I was blown away that the very connection I wanted so badly was so close, and I had no idea. Through these families, we have learned so much about how to best support Amado, who is now 2 years old. We laugh, share our joys, and cheer each other on.

Our family wants a GiGi’s Playhouse in our community because we want Amado and people with DS to be visible in our community. We want to say “Congratulations!” to expectant parents that receive a prenatal diagnosis of Ds. We want to support children with DS who also have heart issues (something that we learned affects 50% of children with DS). We want to hear from people in the Ds community who play baseball, attend college, and have careers they enjoy!