As we slowly started telling people that our unborn son was going to have Down syndrome many had suggestions of other families we could connect with who had a child with Down syndrome. We were not close to anyone who was raising a child with Down syndrome, so it was helpful to be linked to families that were already on this journey. One couple that kept coming up as a “you must connect with” was Skip and Gayle Gianopulos. They not only had one child with Down syndrome, but they had TWO biological daughters with Down syndrome. Feeling very scared and overwhelmed about Cody’s diagnosis, I couldn’t even imagine what that was like!
Gayle is a fellow alum of Judson University and I had heard her name before, but I had never met her because we were not in school at the same time. What I did find about her was that she was “normal, cool and fun”. That sounds trivial that I cared about that, but I am embarrassed to say, that one of my concerns when I found out that Cody was going to have Down syndrome was that I would have to give up my life as I knew it. I thought he was going to ruin my life and I would have to change who I was and what I liked to do. From what I knew about Gayle, she was a happy, beautiful person inside and out, living life to the fullest. I wanted to know her secret on how she managed this kind of life while raising children with Down syndrome.
I reached out to Gayle and she immediately offered for her and Skip to meet with Chad and I. The pain and uneasiness still very fresh, we met Skip and Gayle for dinner just weeks after Cody’s diagnosis. They were so kind and friendly and very easy to connect with. There were no signs of a burdened life or unhappiness with having children with Down syndrome.
That night was just the first step of learning from other families about life with a child with Down syndrome, but as I think back to that dinner conversation there were some key things that Skip and Gayle shared with us that night.
They promised us that our Cody would change our world in beautiful ways.
They told us that once we grieved the loss of what we expected, we would open ourselves up to see the beauty in the gift of life that was given to us.
They said that managing four kids is the hardest part of their parenting, not having children with Down syndrome, and most of the time, those girls are their easiest kids!
They admitted that if God gave them the chance to take away their daughters’ Down syndrome they would not want to. It would take away what makes them who they are.
Skip and Gayle’s mentorship has been such a blessing and vital part of our journey. They are such caring and giving people and we are so grateful to know them. They did not take our fears away that night, but they calmed them, and as we have navigated through the first 23 months of Cody’s life it was slowly revealed that what they told us was very true.
Cody has changed our world in such beautiful ways and we love having him as our son. I look back to the moments we were so sad and scared and wish we would have known how great life was going to be with Cody. But we needed to grieve and process and once we had the chance to actually experience life with Cody we did realize the beauty of the life we had been given.
And I too wouldn’t want Cody’s Down syndrome taken away! I can’t believe I actually feel that way, I would never have thought I would. Sure, I sometimes wish things were not so hard for Cody, but I also cannot imagine him not having Down syndrome. He has a joy and an extra zeal for life that is so unique to Down syndrome and I would be sad for that to be taken away.
Skip and Gayle met with two very scared parents that first night and a few more meetings after that. They sifted through our panic and patiently answered our burning questions and concerns. They showed us such grace and concern but secretly they knew we were going to be ok. They knew the blessing that Cody was going to be before we did. They knew we would come around and realize the amazing gift that Cody is. And they were SO right.