This photo breaks my heart and makes me smile at the same time. It stirs up emotion. This is my beautiful, guileless son, who has Williams Syndrome. He’s crying in the bathtub after I told him his behavior wasn’t up to par and he wouldn’t earn a trip to McDonalds unless he improved. His emotions are always so close to … Read More
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
My Interview With Zombiepalooza!
Hang out with the epic Zombiepalooza show! My portion starts an hour into the show, and runs for about 50 minutes. I really had a lot of fun. 🙂 You can watch the video here. Jackie and crew really work hard to put together something special. Thank you so much, you guys!
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
Following the Nerd
It’s true, I am a nerd, but today we’re talking about the Following the Nerd Podcast. My dear friend Jay Faulkner (who once wrote an introduction describing our bromance on my “Let It Fall” guest post on his blog for Rare Disease Day) interviewed me for his radio show in Ireland. It was so much fun! If you’d like to … Read More
Hello From the IMC Unit!
We’ve been hit by a plague that took us down one by one. I spent two days in bed, physically unable to get out. The kiddos dropped like flies. So did my husband. We were attacked by Pestilence Pony. Littlest is currently in the IMC unit at our hospital with pneumonia. They’re having difficulty stabilizing her oxygen levels and her … Read More
The Dragon Takes a Wife
The Vegas Valley Book Festival was fun! A lot of people came out. We represented the HWA, sold a few books, and I drank a LOT of Diet Pepsi. But my favorite part? Once upon a time, when Niko was a little boy, we were on the dialysis floor. He wasn’t having dialysis himself, but received a pamidronate treatment … 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