By Rikki Morris, Guest Blogger and Parent.
Our story is about moments in time, and the significance of each one.
Although many people have said it before, having a child with Williams syndrome teaches you more about moments than you ever knew before.
When I found out I was pregnant with my second baby, I began planning our future, like every mother does. I imagined what she might be like and the things she might accomplish in life. My expectations were like imaginary bricks that I used to carefully lay out a road that would take us easily to that fictional land of perfection. Every parent learns slowly, over time, that this place doesn’t actually exist. But with a diagnosis of a genetic syndrome, that reality is shelled out in a single overwhelming moment. For most parents, the moment of diagnosis feels like a devastating blow, destroying everything we thought we knew about our child and our futures. But once we choose to accept the diagnosis and fully embrace it, we start to see all the wonderful things that Williams syndrome brings to our lives. In time we come to realize that we would never trade our perfectly amazing child for the “perfectly normal” child we once imagined.
For us the moment of diagnosis came on December 30, 2014 after many months of searching for answers to Coralie’s slow growth, severe colic, and gastrointestinal (GI) difficulties. I held the phone to my ear with my breath caught in my throat and listened as the genetic counselor cautiously dropped the bombshell… “I have the results of Coralie’s microarray analysis, and… as you expected… she does have Williams syndrome.”
Boom. Just like that my pefect little road was blasted apart and beyond it through the rubble I could see only the obstacles that loomed ahead with such overwhelming magnitude that it was hard to breathe. On the road ahead I could see a chain of mountains 10,000 feet high, dark caves, steep valleys, and bodies of water with no bridges in sight. I didn’t sign up for this journey, and I didn’t feel ready.
The next day was New Year’s Eve, the celebration of new beginnings. But my husband and I felt we had nothing to celebrate about this new beginning. As the rest of the world raised their glasses to welcome 2015, my husband and I felt we were being unwillingly thrust into this New Year without any choice. As the rest of the world celebrated, we went to bed early and curled up with our grief, wishing we could hold onto our illusory “normal” daughter that we knew would be gone forever with the stroke of midnight, left behind and buried in the year 2014. I desperately wished I could somehow find her missing genes and put them back where they’re supposed to be. If only I could go back in time to the exact moment where those genes disappeared into oblivion and somehow hang onto them for dear life.
Through those moments of panic and desperation I couldn’t yet see the layers of depth and meaning that had been added to our lives and our family on that day. I couldn’t see how amazingly beautiful the world of Williams syndrome often is. I didn’t yet know the feelings of ecstasy that would fill me each time we reach a milestone and are finally able to view what lies beyond whatever particular mountain we’ve been climbing. I couldn’t yet see the friends that I would meet on this journey who would truly enrich my life, and how we would form bonds that no typical parent could ever understand. How they would be my fellow mountaineers, sharing tips and climbing gear. How we would admire the scenery together, take turns carrying each other over the rough patches, and love each other’s children like they were our own. How their companionship would be the strength I draw from when I need it most, the laughter I need on a bad day and simply the hands to hold when none of us know what to do but forge on.
I didn’t see then that Williams syndrome isn’t about what’s missing, it’s about the rare gifts that inexplicably fill in the gaps of those missing pieces. Coralie’s first words weren’t “mama” and “dada”. They were “hi” and “I love you”. That is the most perfect description of Williams syndrome I could offer. These words weren’t reserved only for family members, they were and are shared with everyone within a mile radius, along with the happiest brightest smile you’ll ever see. In a world where people walk around inside their own private bubbles, absorbed in their own worries and obligations, Coralie has a special magnetism that draws people out and forces them to share a moment of joy with her. She affects people in a way I’ve never seen before.
Another mother recently made the comment that kids with Williams syndrome “light up the world”. I believe that. I believe that kindness and joy are contagious, and kids with Williams syndrome start small fires of it wherever they go. Coralie makes people smile, she puts them in a good mood, and she makes their day a little brighter. She leaves little flames behind wherever she goes. Small moments, seemingly insignificant moments, that slowly and quietly make a difference in the world. What lies ahead on the rest of our journey, I could only guess. I know there are many more obstacles ahead and I know there are many different kinds of moments to come— Some that are very tough, some that are lighthearted, some that are scary, some that are full of joy, some that leave us feeling disabled, and many that make us proud. But one thing I know is that all people with Williams syndrome have the potential for great things in life. No matter what their individual abilities, personality, or functioning level, they will go forth into life with their infectious smiles and enormous hearts and they will set the world ablaze. They will teach you things about life you thought you already knew: That each and every moment is a gift, even the difficult ones; that nothing should ever be taken for granted because nothing is guaranteed to anyone, and most importantly, that having a child with Williams syndrome isn’t the end of the world, it’s the beginning.