Discussing Williams Syndrome with Sarah Chorn

I introduced you to Sarah Chorn a while ago. She wrote a stunning review for Pretty Little Dead Girls that just touched my heart. But she’s done even more than that! Sarah interviewed me for her wonderful column Special Needs in Strange Worlds, which runs in the SF Signal Magazine. Sarah’s column helps raise awareness for not only diversity in … Read More

What This Abused Man And My Son Have In Common

There’s a video going around. I won’t post it, but you know the one. A couple of teens beat up a mentally disabled man in Newark, Delaware. They knock him to the ground. Hurt him badly. That man on the ground is Coran. He has Williams Syndrome, just like my son. Here is our story. Here’s more information on Williams. … Read More

Preparing Your Child with Special Needs for School

This is an old blog post and Niko is now in high school, but it’s still relevant. As school time rolls around, there are always things we can do to help the transitions become easier. Happy school year!  I can’t tell you the tears, both his and mine, that have ensued because of new schools. This is my darling Niko. … Read More

May is Williams Syndrome Awareness Month

Most of you are familiar with the fact that my 11 year old son has Williams Syndrome. It’s an exceptionally intricate genetic syndrome that affects so many things about him. His heart. His mental capabilities. He’s going to middle school next year and he doesn’t have the dexterity to manipulate a button. But he loves. Oh, how he loves! I … Read More

So I Ran Away.

A few days ago. It had been one of those days. Those weeks. Those months. And I snapped. I needed out. My husband came home from work and I was clawing at the door, saying I was sorry but I needed to step out for a few hours and I loved him and I’d back after the kids were in … Read More

The Girl With Hamburger Bun Eyes

My son is absolutely beautiful.  He just had a growth spurt.  He’s stringing more words together than ever.  He has Williams Syndrome.  He’s such a joy. The other day he was smiling and touching my eyes.  “Mommy’s eyes,” he said.  His face lit up as he thought about one of his favorite things.  “Hamburger buns.  Mommy’s hamburger bun eyes.” There … Read More

So The Police Show Up With My Eight-Year-Old Son…

Sounds like a bad joke, right?  Only it isn’t.  Through a series of miscommunications and things that would be heartbreakingly comic if I was watching it on TV, my son ended up freaking out on the school bus.  So much so that the school police were called.  My car had mysteriously died this morning, my baby hadn’t slept all day and … Read More

Guest Post: “Why I Hate The ‘R’ Word” by N. Paslay

Let me introduce you to my writer friend and fellow Williams Syndrome mother, N. Paslay. She wrote an essay that struck deep into my heart. I’m grateful that she allowed me permission to share her words here. I cringe whenever I hear this word, precisely for the reasons that she so eloquently states. Please, let’s realizes there are consequences to … Read More

Today’s Thoughts on Williams Syndrome

Small Son’s test results came back, and his calcium is elevated.  Once upon a time this happened to us, and he descended into kidney failure because of it.  We’re hoping it can be changed with diet instead of drugs, and I’m keeping a diary of everything that he puts into his mouth.  It isn’t much. Today he was supposed to … Read More

The Specialist

First off, I want to say thanks for all of your well wishes.  I really appreciate that.  I don’t think you can know how much it means.  🙂 So!  News!  I need to tell you that my son has out-of-this-world anxiety when it comes to anything medical.  He has been through more procedures than I can even knew existed, and … Read More