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At 11:12 a.m. on Christmas Eve last year, I sent a text. Our son, Jude, had just turned 1, and over the past four months we’d become increasingly worried that he wasn’t meeting his developmental milestones. He was a month away from being assessed for cerebral palsy (a common…

Nothing can prepare you for the beautiful and chaotic roller coaster of raising a child. For a brief moment, we felt as though the path we’d expected to follow went completely off course when we learned our one and only child would live a life of significant disadvantage. My name…

As the caregiver to my 14-year-old daughter, Juliana, I’ve learned a precious life lesson that helps me function better while living with Angelman syndrome. What’s the lesson? It’s that I can’t live my life like everyone else. Years ago, when I realized this, my world got simpler. This realization…

As Juliana, my 13-year-old daughter with Angelman syndrome, gets older, improving her skills stays at the forefront of our daily living. We work on toileting, tooth brushing, and stair climbing. Any task that practices her fine motor skills is also on the list. One of those…

For the last few months, an odd sound has been emerging from my daughter’s room. My 13-year-old Angel, Juliana, is stuck making an “ugh” sound. The sound is annoying, and it’s left me baffled about whether we’re facing regression or progression with her communication. It’s hard to tell which…

When you’re a caregiver to someone with Angelman syndrome, making time for yourself seems like an impossibility. However, I consider this necessity an important part of my caregiver responsibilities. After all, if I don’t look out for my own well-being, I’ll burn out. And that will make the job…

I used to think that my 13-year-old Angel, Juliana, screamed a lot because she lacked understanding. There might be some truth to that, but something else is at play. Many of her outbursts are good old-fashioned tantrums that she’s performing to get her way. But I’ve started…

“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…