Saturday, September 10, 2011


Today I entered an essay contest about my journey towards understanding williams syndrome.  My cousin, a writer, encouraged me to share my story and I'm glad she did.  It helped me reflect on my journey, so far, and it has made me feel so much gratitude towards a group of women who have helped me along the way.  This blog post, modified from my essay, is dedicated to them...

Every parent has dreams that their child will have a lucrative future- one with a successful career, families of little grandchildren at play, that they will always be healthy, happy and well adjusted. Then reality hits you. It hits you hard. You get a diagnosis that your child may never have those things. That they will most likely never drive, never marry, never have a career, never move out of your house, never have children, never be completely healthy and worry free. Let me tell you, that’s hard to hear.

Upon the diagnosis, I spent a lot of time contemplating this new reality and trying to make sense of it all. When Katie was first born, my mind was clouded with confusion, denial and anger. I saw a child hooked to machines, who didn’t smile, who wouldn’t nurse, who cried most of the time. I saw a broken child.

I soon sought after help and found myself in a support group on Facebook where I met other mothers who were in my shoes. They taught me that this new world is one of unparalleled beauty. They taught me to see the joy of having a child with special needs. They walked me through my lows and celebrated my daughter’s achievements with me. These women have taught me that all those dark, early emotions were only natural ways of handling the shock.

It took a group of strangers to show me that my daughter is all I had wished for and more. Today I know that my “broken” child is perfection. She may need a little help, such as glasses to see and braces on her feet so she can walk, but despite all of those obstacles, she takes life’s challenges in stride and with an eager zeal to succeed. Katie didn’t smile until six months old, but since the first grin, you can’t wipe one off her face. Her smile is the most infectious, mood lifting thing you’ll ever see. She is the sweetest little person in the world. If I come home unhappy and stressed, her giggle and a hug is all I need to feel whole again. She has taught me all about blessings and finding the beauty of love in unexpected places.

Without that community of women, I’m not sure I would have found the balance that I have today. Sharing my life with them has taught me about the value of a community. As I matured in thought, I was inspired to marry my “typical” life as an anatomy teacher and my “special” life as a mother by writing a blog named “Understanding Williams Syndrome”. I share the medical knowledge I have about Williams Syndrome with others so mothers, like me, can advocate for their children and understand what happens in their bodies. This latest project has helped me learn more about paying it forward. I now repay those women who have shared a powerful lesson of love with a powerful lesson of knowledge. My hope is that together we can make our family’s lives rich and fulfilling.

Through this journey, I have learned that life takes turns that you don’t anticipate but by putting trust in others, sometimes even complete strangers, and making the best out of your situation, you find yourself in a very powerful and unexpected place full of love. As an exhausted mother of a child with special needs, I still wish my daughter didn’t have these unique challenges. I still carry a little heartache over this reality. I still wish she didn’t have a more difficult life than most but, I wouldn’t exchange this reality for anything. I have learned that by understanding williams syndrome and sharing my experiences with others like me, life can be more rich and beautiful than ever before.

I'm not sure I'll even come in higher than last place on the essay contest, but I am sure that I have been blessed- with a beautiful daughter and remarkable support.  Although I haven't met these women face to face, I know that they care for me and my family and that I can rely on them for help.  That is just another one of the surprising blessings I have encountered on this journey through Williams Syndrome.