We are now almost 10 years into our journey with Angelman syndrome and I’m still smiling. Not a cheesy, pasted-on smile, but a smile that says things are tough sometimes but we are doing all right. Traveling through life with Angelman syndrome is not an easy path to manage. Each…
Although they present a happy demeanor, Angels can have bad days. Or bad weeks, which is what happens when my 11-year-old Angel, Juliana, is sick. Her sweet disposition is there somewhat, accompanied by a mean little minion that seems to be sitting on her shoulder urging her to dish out…
My 11-year-old Angel, Juliana, has a fixation. A fixation is an intense focus or obsession. Some parents may view this as a bad thing, but experts say otherwise, and I’ve found Juliana’s obsession to be one of the most positive influences in her life. Since she was about 1…
There’s a really significant Christmas bell rolling around my house these days. The bell used to be an ornament. Now it serves as a reminder for me to be flexible and understanding. Along with a sense of humor, these traits are good qualities to possess when raising a child…
Finding the right gift for an Angel can be tough. However, when I decided to let go of old expectations, I was able to craft the perfect Christmas list for my 11-year-old Angel, Juliana. When Juliana was younger, I was all over the place when choosing gifts for her.
The holiday season is here. For many people, there might be a mountain of little details to plan that perfect holiday. However, it’s simplicity that keeps me festive while managing my 11-year-old Angel’s unpredictable behavior. As the years roll by, I am learning valuable lessons as a caregiver. These…
Children with Angelman syndrome are known to have sleep issues, and I have heard and read trying tales about problems some families have encountered. But my 11-year-old Angel, Juliana, is a sleeper. We don’t hypnotize her or use anything special, and I wonder if her ever-improving…
Walking is something many of us take for granted. It seems so simple — you just put one foot in front of the other and go. But as the parent of a child with Angelman syndrome, it’s not always that easy. Our 11-year-old Angel, Juliana, has been walking for…
People used to ask me sometimes if my husband and I knew when we adopted our daughter, Juliana, that she had Angelman syndrome. My answer, of course, has always been no, but I never understood why that was relevant. Now that Juliana is 11, we are rarely…
It’s never too late for an Angel to find her voice. This past summer, Juliana, 11, finally got an iPad as her dedicated augmentative and alternative communication (AAC) device. Getting Juliana her own tablet for communicating has been on my list of things to do for…
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