Columns

Time is something we don’t get back. However, I’m always looking for ideas to free up extra minutes in my day. As a caregiver to my 13-year-old Angel, Juliana, my goal is to offset those responsibilities by keeping other areas of my life simple. Surprisingly, something as odd as a…

Mayhem. It’s a word that sums up all the crazy that can occur, and it’s certainly a good way to describe my life as I raise my 13-year-old Angel, Juliana. But mayhem also reminds me of May, which is right around the corner. May is never very good to…

I am guilty of what professor and author Brené Brown calls “foreboding joy” — the feeling that something bad will take over the good that’s happening. Brown is known for her research on courage and bravery. Raising my 13-year-old Angel, Juliana, certainly requires both. My life is a work…

Self-care doesn’t always take priority when you’re parenting someone with a neurogenic disorder like Angelman syndrome. But I’m walking proof that it should be. As a caregiver to my 13-year-old daughter, Juliana, I’ve been writing about Angelman syndrome for over 10 years. My goal is to be intentional…

I’m facing a truth that I knew was coming: My 13-year-old Angel, Juliana, is bigger than me. Once hormones took over, the growth spurt wasn’t far behind. But when your child has a neurogenetic disorder like Angelman syndrome, which poses specific challenges, growth means more than a taller…

Anxiety is a normal characteristic of Angelman syndrome. Its triggers might include separation from a caregiver, noise, crowds, or a change in routine or environment. When things are going smoothly and my 13-year-old Angel, Juliana, is having good days, it’s easy to forget how easily these factors…

Organization has always come easy to me, and it plays a big part in improving my quality of life as a parent to a daughter with Angelman syndrome (AS). When the clocks sprang forward last weekend, it made me think about spring cleaning. I always do some things to…

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,…