My 13-year-old can do squats! Big deal, some may think — especially those who don’t know much about the constraints of a rare disease. An exercise that requires bending and balance is easy for the average kiddo. But for my daughter Juliana, who has Angelman syndrome, stooping without…
Working to keep your Angel out of apps on their iPad is an excellent problem to have. I love that my 13-year-old Angel, Juliana, knows her way around her device. But her exploration is becoming troublesome. As Juliana becomes proficient with her screen, I’m working overtime to keep her out…
My 13-year-old daughter, Juliana, has a rare, neurogenetic disease. That is a loaded statement, because most people don’t know what it means. I can’t blame them, of course, but that doesn’t mean I have to like it. It can be frustrating to describe Angelman syndrome (AS) to strangers,…
It’s official. I am the mom of a teenager. Parenting a teen is one thing, but navigating life with a teenage Angel will involve next-level motherhood. We celebrated my daughter Juliana’s 13th birthday this past weekend. Given all the good we’ve experienced in recent months, I’m cautiously optimistic that we…
When I mention that my daughter has Angelman syndrome, my next words explain what it is. At some point, I’m hoping that will change with observations like International Angelman Day, every year on Feb. 15. The day’s goal is to raise awareness about this rare neurogenetic disease, which…
When you are raising a child with Angelman syndrome, stress becomes a natural part of life. As a caregiver, I keep an open mind and remember that stress relief may come from unexpected sources. I recently began to notice that music has proven to be a constant consolation…
At some point in life, tragedy or death strikes. Sometimes, they show up as partners. That was the case this past week, as my family grieved the sudden loss of my 23-year-old niece from a car accident. Wouldn’t it be great if Angelman syndrome took a back seat while…
While many people are already starting to abandon their New Year’s resolutions, I’m just beginning to focus on my intentions for 2023. I gave up resolutions long ago. But each year, I focus on one or two loose plans that I work toward as time allows. This year, I’m…
As the parent of an Angel, change is often necessary. Recently, I decided to change the software on our 12-year-old Angel’s augmentative and alternative communication (AAC) device. The update is fresher than a new coat of paint, but I’ve already noticed the benefits. Juliana is considered nonverbal, so we…
Donations can be a huge help to families. And did you know that you can donate used medical equipment? Right before the new year, my box fills up with emails from organizations doing their final pitch for last-minute donations. Most ask for money, but donations come in all forms. Before…
Get regular updates to your inbox.