Why GiGi’s? Erin and Elena

GiGi’s Playhouse is exactly what the Down syndrome community needs and what my daughter, Elena, our family, and our friends deserve. GiGi’s is a place to connect, feel supported, receive free educational and therapeutic services, and draw our community together. GiGi’s Playhouse Simi Valley will help us spread Down syndrome awareness and be a place where we can direct our local neighbors so they can stand with us and help change the way a person with Down syndrome is viewed. 

Hours after Elena was born, her pediatrician came into our hospital room to meet her and complete the newborn physical. As he was leaving, he told me he would run some blood test. I thought nothing of that, especially being a new mom. I consented thinking it was the normal stuff they do, and then he added he wanted to test her for Trisomy 21. I had no idea what that was and cluelessly said, “Ok, sure.” He proceeded to say it was for Down syndrome. I don’t think it registered with me exactly what that meant. I again just said, “Ok,” very confused, and he said he would let me know and see us for a follow up.  

I immediately went on my phone to Google Down syndrome. The outdated photos and information online were alarming. I didn’t understand why this was happening to us. From a young age, I had always dreamt of being a mom. It was the one thing I knew I wanted to be in life. I have always loved babies and kids. I loved babysitting my cousins and neighbors when I was old enough. The best opportunity was when I volunteered in high school to volunteer to help in the kindergarten class as one of my electives. Being a mom was my dream, and it was finally happening! My dream came true when Elena was born. But I was hit hard by the internet, reading through the different websites and seeing what they said her life would become. She was immediately limited by society from the day she was born. We left the hospital with no information on DS and no support for my questions.   

As I was getting ready to leave for her follow up, the pediatrician called to tell me her bloodwork came back positive for DS. That ride to the doctor’s was an emotional one. Once our appointment was over and some of my concerns were answered, I left still feeling like I was alone. Fast forward, Elena met lots of milestones on time or with little delay. She’s always been determined. We had no early intervention or therapy until I started connecting online to other support groups where so many talked about early intervention and therapies. I learned of the Regional Center and applied. By luck, through Facebook, I connected with two other local families who had a little one with DS. That was exactly what I needed. Meeting them and seeing their little ones, bonding, they helped educate me on services for Elena, and my support pieces started falling into place. That was my beginning of becoming the best advocate for Elena.  

Now imagine a new mom in those shoes with no help, no resources, and no one else who understood. What would life be for her, her child, or the family? What if they couldn’t reach out? How easy it is to fall through the cracks! How can we be the change and make sure that doesn’t happen? What if a Gigi’s brochure could be handed to that mom or family at the hospital or doctor’s office? That is our goal, to have a local Down syndrome achievement center where people, families and the community can step in, educate, help, and support our community. This is where Elena and her friends are growing up, and my dream is to have a community that is inclusive of her and all her abilities.  

Erin