How GiGi's Began
When my daughter GiGi was born, I thought my family’s life would change forever. About an hour after she was born, the doctors suspected she had Down syndrome. Panic was welling up inside me but I was afraid for anyone to see it. As soon as my husband and I made eye contact I said, “if anyone can handle this we can.” He agreed and said “Can you imagine what better kids Isabella and Franco are going to be because of her?” I knew we were going to get through this together. Don’t get me wrong – we were petrified! I can not even begin to tell you the total fear and devastation I felt. Everything they were telling us about Down syndrome was so negative! Suddenly no one had eye contact with me anymore, they kept the door to my room closed and they kept sending in the clergy! If this was happening to us already what was life going to be like for our kids? I was so afraid to bring her home and start this “new” life. I remember when people first came to visit. There were hugs of sympathy not congratulations. They would tip toe towards the bassinet and seemed afraid to look inside to see what she would look like. Then when they finally mustered up the courage to look they saw this beautiful little baby and they were shocked! They always exclaimed “Oh my gosh! She is adorable!” I really don’t know what they were expecting to see but finally people started to realize she was just a baby.
One night as I carried GiGi to bed, I could feel the weight of her low muscle tone. A weight you never knew existed due to her never ending smile and sheer determination. At that moment, I realized how strong she actually was. As I carried her up the stairs, I made a promise to her that I would change the way the world looked at a person with Down syndrome; that I would help people understand that her and all of her friends were so much more than a diagnosis. With the help of people like you and the Playhouses across the world, that promise is being kept – not just for GiGi but for all our children.
Life with GiGi
What a gift! Once we got settled and got back into a routine at home I realized that she was more like my other kids than she was different. Some things took her longer but she always got it and she never gave up. She inspired me everyday and I had to find a way to live up to my promise to her. I remember my first support group meeting – we were in the corner of a sterile room at the hospital. It was a great meeting but I just kept thinking, ‘why isn’t there a place for us’? That is what propelled me to create a place where families could come for resources and networking, where kids and adults with Down syndrome could be the leaders, where we could celebrate our diagnosis. With my husband by my side we went out to recruit board members and raise money. My son Franco, drew the GiGi’s Playhouse logo and in just 5 months we opened the doors to the first Down syndrome awareness center in the country!
My favorite part of the Playhouse is the self esteem that the kids gain. As one Board member states, “My son has gained so much self confidence from being at GiGi’s. At the Playhouse, he is the leader – the other kids follow him! He is beginning to transfer this new found self confidence to his class at school.” There are DOZENS of educational activities and programs designed specifically to work on important skills for each child. Many of the programs are facilitated and developed by therapists and educators. Thus the kids are strengthening their gross and fine motor skills, speech and language development, and social skills – and having so much fun they don’t even realize it! All of the skills are built in a way that they can be transferred into the classrooms. They learn how to socialize with peers, how to read and write, how to take turns and most of all they are gaining self esteem at the same time!
I have to say having GiGi was like a true love story. It started out with devastation and fear and ended with a love like I have never known. Without living it I would never have understood that. I am just glad that GiGi’s Playhouse has turned into a place where people can see the other side of Down syndrome. As for GiGi?? She is rockin’ that extra chromosome! She is an avid texter, hip hop dancer and over all rock star!! Her brother and sisters worship her! I only wish I would have known how amazing life with her was going to be!!
Nancy Gianni, Founder and Chief Belief Officer of GiGi’s Playhouse, Author of #GenerationG, and CNN Hero, with daughters GiGi and Bella Gianni, featured on the Today Show.