Having a pet in your family is a big responsibility. That’s why I delayed getting one until my daughters were older. Having a daughter with Angelman syndrome means that issues like sleep, acid reflux, and even ataxia consistently require my attention. It took time for me to…
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Since my 13-year-old Angel, Juliana, was little, I’ve been hearing the word “guardianship” repeatedly. I recently got an official welcome to that legal process during Juliana’s final meeting of the year for her individualized education program (IEP). Guardianship is necessary for those with Angelman syndrome because Angels require…
I wasn’t surprised or outraged when I read the news article “‘They matter too’ Las Vegas mom upset over special needs son’s exclusion in yearbook,” by Joshua Peguero. Instead, I felt fueled and encouraged. It was a wake-up call to continue writing about Angelman syndrome (AS) and advocating…
Sixth grade is just about over for my 13-year-old Angel, Juliana. The year has gone well despite the tough decision we faced with school choice. When you’re transitioning to middle school in special education, your home school and your student’s abilities all come into play. I didn’t know what the…
As a mother to my 13-year-old Angel, Juliana, I found myself in uncharted territory last Sunday. For the first time in a long while, I didn’t feel too exhausted to celebrate Mother’s Day. Breakthrough is not the word that comes to mind. Perhaps I turned a corner? I’m not sure…
Routines aren’t just for babies and toddlers. They also create consistency that my 13-year-old Angel, Juliana, relies on. This is not surprising given the fact that changes in a routine or surroundings can trigger hyperactivity in those with Angelman syndrome. When I’m tempted to meddle with consistency,…
Brushing my 13-year-old Angel’s teeth is a chore that’s still a work in progress. The other morning when I took on the task, I gave myself a timeout. Strum, strum, strum. I rapidly tapped my fingers on the bathroom chair while waiting for Juliana to stop being distracted. And squirming.
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…
Recent Posts
- Angelman syndrome has shaped how we celebrate our son’s birthday
- MVX-220 Angelman gene therapy trial enters first human testing
- Recognizing the importance of exercise for Angelman caregivers
- When the world forgets our children
- Dosing begins in broader trial of Angelman syndrome therapy
- The guessing game involved in caring for a nonverbal child
- MVX-220 for Angelman syndrome earns FDA fast track status
- Starting seizure medicine has us grappling with anxiety and doubt
- Genetic medicine could target Angelman’s root cause
- ‘Urgent need’ for treatment drives GTX-102 study enrollment