For Angelman awareness, I’m focusing on my Angel’s good days
When I look at the bright side, my daughter's life gives me reasons to cheer
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 affects about 1 of every 15,000 people.
This year, I’m shining the spotlight on my 12-year-old Angel, Juliana. Living with Angelman syndrome certainly comes with its challenges, but with a few tweaks here and there, our stage is set for pretty good days.
Like most families, there’s hardly a moment to spare when the day begins. Angels don’t always have a regular sleep pattern, but Juliana has had the same routine since she was a baby. Most days, she sleeps well and wakes up happy and ready to go.
Now that she’s in middle school, she can sleep later. I wake her early, however, to do her hair. My husband then takes over to fix her breakfast and get her dressed. Amid the morning prep, we take her to the bathroom to get her ready for interval trips to the toilet at school.
Although Juliana cries some mornings, she’s adjusting well to middle school. She’s new at the school, so the tears could come from separation anxiety. Her teacher assures us that Juliana is engaged and happy at school, adding that she may be crying to get a reaction out of us. I have to remember that Juliana is still a child who can be sneaky, manipulating our emotions to get her way.
Middle school is a huge adjustment for most 12-year-olds. My neurotypical daughter, Jessa, is also adjusting to middle school and can express her reactions to the changes around her. Juliana, however, is nonverbal and cannot communicate so clearly. Given the feedback from her teacher, we’ll start having her use her augmentative and alternative communication device to voice her emotions about school.
Ready to repeat
When Juliana gets home, she and her dad take a quick walk. This is good exercise for her, as well as a way to transition from school to home. Afterward, Juliana gets to enjoy time on her iPad, and on Tuesdays and Thursdays, we practice her skills with homework. More planned trips to the bathroom round out our evening. Juliana has been struggling with stairs for some time, so as I prepare dinner and lunches for the next day, we’re mindful of her transitions between the floors in our house.
As Juliana grows older, she’s becoming more independent. When she’s upstairs, she loves to hang out in her room with her music, toys, or iPad. If she’s downstairs, she’ll do the same, but she also stretches out in front of the patio window to soak up the sunlight. Besides her bedroom, it’s her favorite spot in the house.
Bedtime seems to creep up quickly, and there’s always a frenzy to get everything done for tomorrow. Juliana’s day is topped off with a bubble bath and quiet music to help her get to sleep. Unless she has a toileting emergency, it’s sweet dreams until the morning.
And like the average family, we get up and do our routine all over again.
For the most part, we have simple days. Sometimes, however, the day takes an unexpected turn when Juliana is sick or too grumpy to handle. Those are the parts of Angelman syndrome that change our lifestyle dramatically.
When people see my family, I know they see differences and challenges. Living with Angelman syndrome is different. There’s no doubt about it. For this International Angelman Day, however, I want people to grasp that my family is similar to theirs in many ways. The big difference is that Juliana faces developmental delays as well as health issues, and thus needs support to make her life better.
But at the heart of it, she’s an adorable middle schooler who just happens to have Angelman syndrome.
Note: Angelman Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Angelman Syndrome News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Angelman syndrome.