When Ethan was born, we did not know he was going to have Down syndrome. Everything I knew about Down syndrome was outdated and negative. I had never met anyone with Down syndrome. The little that I knew came from what I was taught in nursing school. I was taught about the medical conditions associated with Down syndrome. I was taught about the developmental delays.
My husband and I refused the prenatal testing. Our OB seemed surprised by that. We said, "we will take whatever God gives us", never thinking that we would have a baby with Down syndrome. We didn't know what He had in store for us. Ethan was born on December 18, 2013. He was the most beautiful baby I had ever seen. He looked like a little baby Bugga Bugga. And we immediately started calling him Buggy. The name stuck and everyone knew him as Buggy. The nurses started scrambling around and I knew something was "wrong." They took my baby to the NICU and a few minutes or hours later, (I honestly don't know how long I laid there alone, without my baby or husband) my husband returns with the NP and she tells me, "I'm sorry, but I think your baby has Down syndrome. I pray that I am wrong." And my world came crashing down. All of these thoughts went through my mind:
Would this baby walk? Would he talk? Would we love this baby like I loved my others? Would people judge us?
When Ethan was about 3 months old, one of my daughter's teachers gave me Maggie's phone number and Gigi's Playhouse opened in El Paso about a year after that. I would bring Ethan when I could. Ethan thrived...he learned to sit up straight, he learned to dance, he learned sign language, he learned to socialize and be even started verbalizing a little. He learned to walk.
On May 14, 2017, (Mother's Day), Ethan passed away. He was 3 and a half years old.
I am passionate about Down syndrome acceptance because Ethan taught me SO MUCH more than any textbook could teach me. More than any teacher could teach me. More than any health care professional could teach me.
I am FOREVER grateful for volunteers. Because of you, our babies, our kiddos, our people can thrive and we get to see how beautiful life truly is because of this. So thank you all for being here.