“Are You a 21st Century Pioneer?” – Nancy Pioneer. Verb. A person who is among the first to develop or be the first to use or apply (a new method, […]
“CLOSED.” – Nancy “School closed,” says Sam for the 14th time today. I take a deep breath. If I don’t answer him, he’ll just keep going.
“Creating Capacity” – Janet When I was faced with the CTD diagnosis of my son, who is now 10, I felt a huge, monstrous, feeling of overwhelming and it never […]
“WE’RE IN THIS TOGETHER, Like It or Not” – Nancy I know I’m one of the lucky ones. We still have our son. There was a moment in time where […]
“Discussions from the Society for Inherited Metabolic Disorders (SIMD) Meeting” – Tony The Society for Inherited Metabolic Disorders (SIMD) holds a 3-day meeting every year to discuss and share ideas […]
“Making Friends” – Nancy When your child is different, there are a lot of worries. We worry about their health; their education; and their safety. But we also worry whether […]
“WHO’S GOING TO PROTECT HIM WHEN I’M GONE?” – Nancy Over-protective. Controlling. Helicopter Mom. Whatever you call it, that’s who I am. I’ve been this way since my first child […]
“Getting Better” – Amy Ben’s recent Creatine Transporter Deficiency (CTD) diagnosis has hit me hard emotionally, so I thought that an honest account of these emotions could be cathartic. I […]
“What About Me?” – Kelly I’ve made no secret that our family life is somewhat different from the norm. Our home life is different as we live with 2 of […]
“The More Things Change…” – Nathan Greetings friends! Well, it is that time again as I am once more honored to be a part of your daily intake of reading. […]