A Chance to Get it Right

Ask any grandparent and they will tell you, there is no love like the love for a grandchild.  It’s true.  I love all three of my grandchildren with that indescribable grandparent love. But when a child is born with special needs, as Alden was born with Down syndrome, a grandparent’s concern and worries multiply, for both the grandchild and for the parents of that child. But, so does our appreciation. It multiplies and intensifies for all the gifts that a special child brings us. 

For me personally comes an additional dimension, the experience of having had a sister born with Down syndrome. Nancy (1968 – 2016) was born in a time, a place, and into a family with few resources and even less understanding and insight into the condition. There were so many misconceptions being touted as the truth, being touted as her future. Nancy’s 47 years on this planet were fraught with a long list of medical, cognitive and psychological conditions and a woefully inadequate list for competent medical care, housing, education, training and other related services. 

Years ago, before Alden was born, I was a volunteer at a fundraising event for Down syndrome, where I met the grandparents of a 4-year-old little girl with Down syndrome.  In talking to the grandfather of the little girl, I learned he had a remarkably similar story to my own, a brother born with Down syndrome who died at the age of 17 in a deplorable institutional setting. 

The grandfather told me when his granddaughter was born, he saw her as a gift from God, a gift that would give his family a chance to get it right, a chance to make his granddaughter’s life all it could possibly be, all it should be.  He would use his insight and experience to be a part of all that. I filed his poignant story and his words of wisdom somewhere in the back of my brain, having no idea at the time that I, too, was going to feel all those same things someday, feel that same opportunity to get it right. 

I’m new to GiGi’s Playhouse, but I’m learning about their mission, their vision. The importance of having a physical location to grow and develop more of what our Down syndrome community needs, the need for a strong lifetime commitment to families, from a prenatal diagnosis and/or birth of a child with Down syndrome to developing the skills needed to have a job. 

And so here’s to many things; to my sister, whose difficult life helped to pave the way for others; to the grandfather I encountered all those years ago; to beautiful and special 7–year–old Alden; to my daughter and son-in-law — Alden’s devoted parents, who are endlessly fierce advocates for him, who fight for all he deserves, who fight for all the resources available and for the resources not yet available, who fight for the future of all those yet to be born with Down syndrome, an even better world for them. Here’s to GiGi’s Playhouse.  Here’s to the chance to get it right.