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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. 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 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! She is adorable! 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 she 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.
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. 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 favorite part of the Playhouse is the self esteem that the kids gain. 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. Many of the programs are facilitated and developed by therapists and educators. All of the skills are built in a way that they can be transferred into the classrooms.