“Does she understand?” a friend asked me as Juliana watched a show on her iPad. It’s not uncommon for people to ask me if Juliana, my 13-year-old daughter with Angelman syndrome, understands what’s going on around her. Comprehension is a tricky topic when you’re dealing with a neurogenic…
A houseguest once passed her finger along a shelf in my house and asked, “Don’t you dust?” I was slightly offended, but didn’t overreact. I just briefly explained that I was a little busy. There are a lot of activities in our house that must be completed to ensure the…
Self-care has been an important part of the quality of support I provide for my 13-year-old Angel, Juliana. As the years add up for each of us, however, the word has taken on a new meaning. Regretfully, I’ve let a few things slip with my health over…
Communication is one of the skills I am most grateful for when I think about how my 13-year-old Angel, Juliana, is growing and changing. The other day, I thought about how far she has come since she was first introduced to the iPad. Our device was gifted by…
I’m not shocked when my 13-year-old Angel, Juliana, masters a skill we’ve worked on for a while. That’s because I know she learns best through repetition. But a few weeks ago, Juliana started snapping her fingers out of the blue. Her snaps aren’t hard and polished, but there’s no…
Seeing my 13-year-old Angel, Juliana, play in the water is nothing new for our family. But seeing her drink water has our family in awe and me wondering how to keep this miraculous trend going. I know many moms ponder how to keep their children hydrated. And I am…
Anyone who knows me, or has read any of my columns, knows that I crave simplicity in my life. It’s one of the things that make it easier to manage the care of my 13-year-old, Juliana, who has Angelman syndrome. When my husband decided to take on…
I was disappointed to read the news recently about new data from a Phase 3 clinical trial of an investigational treatment for Angelman syndrome called OV101 (gaboxadol). Developed by Ovid Therapeutics, the experimental treatment did not appear to combat the complexities brought on by Angelman.
When you’re living with a neurogenetic disorder like Angelman syndrome, you quickly learn that flexibility and change are necessities. I’ve also learned that raising my 13-year-old Angel, Juliana, is a task that requires help and support from others. We lead a fairly simple and average life — or as…
What is it about being overwhelmed that can make you try to do even more? Is it the need to catch up or fix whatever is wrong? Whatever fuels this drive, I’m working to do less when I feel overwhelmed. Taking it easier is not what comes to mind when…
Get regular updates to your inbox.