Parenting Perspectives: Williams syndrome a complicated blessingWednesday marks the first day of Williams Syndrome Awareness Month. While our walk on May 11 may be affected by the flood fight, our effort to create awareness in our community is not bogged down.
By: Kerri Kava, INFORUM
Wednesday marks the first day of Williams Syndrome Awareness month.
While our walk on May 11 may be affected by the flood fight, our effort to create awareness in our community is not bogged down.
As my friend and fellow WS mom, Natalie Mrotzek of Camarillo, Calif., says: “Williams syndrome is a complicated blessing. It’s a series of short straws followed by infinite extra-long ones. You get the joy of seeing the purity of love like never before displayed in a human being, and you get the realization that most of the world will never appreciate your child’s heart. It’s like that song that you can listen to again and again and never be tired of it, but when you stop and really listen to the words, you can’t help but cry.”
We live in a world with so much to see and very little time to be in awe of it all, yet our desires are in full strength. We want to be the best parents, the top employee, a great mentor, the always-there-for-you sister, and the I-can’t-wait-to-catch-up-with-you friend.
The world has handed our family some changes in the past couple of months – great new opportunities, but changes nonetheless.
These changes have given my son a priceless gift, one that renews his love and desire to be with people he loves more than average. He truly loves everyone. Well, maybe not phlebotomists, but in a life with Williams Syndrome, his heart only knows love.
He doesn’t understand hate or resentment, disgust or rudeness. Those feelings simply aren’t a part of his life. In fact, it’s something we soon face teaching him in effort to help him understand communication. This aspect is wretched, needing to teach a pure-hearted soul that we as people hate and resent.
It’s not that my child is perfect. Lord knows he can he can throw a hissy fit. But it’s always followed with tears. And each tear whispers, “I just don’t understand.”
And that’s where my son, and so often others with special needs, are unique. They are happy. They are excited. They are enthusiastic, agreeable, helpful and downright comical.
I remember when Carter asked my husband for a reindeer, to which Paul replied, “You want a reindeer, Carter? So you can clean up reindeer poop?”
With more enthusiasm and seriousness than one 5-year-old can muster, he said, “Daddy, want a reindeer and reindeer poop!”
You see, not once will we ever laugh at him, but oh my goodness, will we ever laugh with him! All children say funny things, and what a joy they are for that. However, a common misconception of individuals with special needs is that they aren’t capable of conversations or laughing or being happy – when in fact, they’re probably happier than we are.
So while these changes in our lives have brought some added hours away from being the very best mom, I love where we are and have found peace in knowing my son is utterly joyful in his new place.
I have also learned, because of my family, that I don’t have to be responsible for every bit of my son’s daily life. I can share that amazing job.
Kava is the mother of Carter, a 5-year-old living with Williams syndrome. Readers can reach her at firstname.lastname@example.org.