Sweet 16

Sixteen years ago, my husband Paul and I envisioned a new world of acceptance and opportunity when we welcomed into the family, our second daughter GiGi, born with Down syndrome. Frustrated by negative reactions from her medical team and discovering an alarming absence of every day, positive and practical resources for children and parents, I committed my life and unconditional love to giving GiGi, and other individuals with Down syndrome, the best life possible. In less than one year, along with a team of dedicated and stubborn volunteer angels, we opened the first GiGi’s Playhouse, and National Office in Hoffman Estates, Illinois, drawing 1,000 local families and guests!

Today, 37 locations throughout the US and Mexico are serving more than 100,000 individuals and families through FREE results-driven programs and positive support. I’m convinced that these kids are here for a purpose… to teach us to love and to make the world a better place. GiGi’s is a place for a child to learn to walk, learn to talk, learn to read… a place to show the world we are HERE and we are PROUD!!

As requests for more Playhouses pour in daily from places near and as far away as Africa and South America, it’s clear that this journey has turned into a call to action of epic proportions. Love, acceptance, and empowerment are truly changing the lives of so many people on this miraculous journey. We started this revolution called Generation G, and we are committed to seeing a world that embraces its pledge to Be Accepting, Be Generous, Be Kind.

All this because one little girl was born!! Looking back, I wish I wasn’t so afraid of the diagnosis when GiGi was born. I wish I didn’t feel the need to grieve the perfect life I was envisioning. I never did it outwardly. I couldn’t!  My kids and my family were taking my lead and they had a new beautiful baby sister that we needed to celebrate. But in the shower, in the car, in those moments when I had time to think about my life, our life, I was petrified. I knew she would make my life better, but I knew it was going to be hard.

Now 16 years later I cannot imagine my life any other way and I am full of gratitude. Gratitude for all my kids and gratitude to GiGi for constantly challenging me to be better! She challenges herself too! Just this weekend she took a bike ride down a road that had a 50 MPH speed limit! She was navigating that bike and facing her fears!  Seeing that confidence grow in her is the best birthday gift ever and I cannot wait to see what the future brings!
In this week of her 16th birthday, I am also reminded of how precious life is. Two families that I am working with lost their children with Down syndrome this week. One was an adult, Ryan and the other a beautiful baby, Holland, who never made it to take a breath in this world. Watching this new mom, who was so afraid when she heard about the diagnosis, wholeheartedly embrace this beautiful baby she named Holland, and a life of uncertainty, only to lose Holland was heartbreaking. (To read more about Baby Holland, please visit her tribute page here). I know it was the same for Ryans mom. 29 years ago she was afraid and not knowing how to live with Down syndrome, and now she is just as afraid as she is trying to figure out how to live WITHOUT Down syndrome in her life (there is a strange irony in that unsurmountable fear that turns into a fierce, overprotective love that brings joy and an unconditional love like you have never known).

In my book, I talk about when my first child, Franco, was born and how I was able to calm him with just the touch of my hand to his face. That power blew me away!  Who was I to have control of this tiny little life and what had I done to deserve it?  But, until that moment when I had calmed Franco with just a touch of my hand, I hadn’t realized that my responsibility was far greater than I’d ever imagined. I was a mother; I was responsible for raising my child to become who he was going to be. I was responsible for instilling in him confidence, generosity, grace, and independence. That was all up to me. I had never felt such responsibility before. I looked down at my son, now sleeping soundly in my arms, and I realized that by giving birth to this child, I was given a great power and a great responsibility. I was determined not to waste either one.

I am glad I had that moment with Franco and I haven’t wasted a minute since!  Everything that has happened in my life- each success, failure or diagnosis- brought me to where I am today and made me the mother of this beautiful 16-year-old girl, who thinks her birthday should be celebrated all year!