Making the best of a change to our routine that’s much too big

Why a consistent schedule matters when living with Angelman syndrome

Sabrina L. Johnson avatar

by Sabrina L. Johnson |

Share this article:

Share article via email
banner image for

Anyone who knows me, or has read any of my columns, knows that I crave simplicity in my life. It’s one of the things that make it easier to manage the care of my 13-year-old, Juliana, who has Angelman syndrome. When my husband decided to take on a part-time coaching job at my other daughter Jessa’s school, a few kinks dented our routine. Still, I worked to make the best of the various changes.

Relying on a regular routine makes many activities better for us, whether it’s a back-to-school plan, a birthday celebration, or a holiday gathering. So when my husband became a coach this fall, I didn’t know how to make the change fit, but I was willing to try.

The other reason I felt the coaching was doable was because Juliana had a great start to her seventh grade year, and academically and health-wise, she’s doing well.

Before Juliana’s turn of temperament when school started, we had a rocky summer of crying and fussing due to hormones. But other than some regular checkups and medication updates, we haven’t faced any major medical crises. It seemed like a good time to try something different.

Recommended Reading
banner image for

How I respond to being overwhelmed in life with Angelman

At first, the change to our schedule was minimal and easy enough to manage. And then, the conflicts started to happen. Sports mean practice, and practice means competing events.

In addition to my husband coaching, Jessa cheers for her school. Suddenly, I felt pulled in too many directions as we worked to accommodate our new sports-centered life. For someone who is not a sports fan, it was hard to appreciate the commitment.

Much too busy

These past couple of weeks have been trying as our various schedules came to a head. I had planned a trip out of the country that conflicted with my husband’s competitions. Fortunately, friends stepped in to help with Juliana when my husband and I had to be away. After that, I thought we would be getting back to normal. But last weekend, a game change brought yet another schedule shift.

What I thought would be a normal Saturday turned into a very early drop-off for Jessa to cheer at a game. Last year, Juliana went to a football game at our school’s stadium and did quite well. But I really didn’t have the energy to orchestrate the extra work to keep her content while Jessa performed. Instead, she accompanied me to my classroom, which is also at Jessa’s school. I worked while she relaxed and watched her iPad.

A 13-year-old girl sits cross-legged on a carpet in her mom's classroom. There's a tall chair to her right, and what appears to be several tables to her left. She's wearing a long-sleeve pink shirt and white leggings with pink and purple hearts. A pink iPad rests on her lap, and there's a small box of Chick-fil-A chicken nuggets on a paper towel on the floor in front of her. She's happily eating one as her mom snaps a photo.

Juliana hangs out while her mom works. (Photo by Sabrina L. Johnson)

I’m in awe of the families that juggle multiple commitments and feel energized by the flurry of events as they transition to various activities. Most are not living with a rare neurogenetic disorder like Angelman syndrome, but I still don’t know how they do it.

Our little adventure has left me drained and ready for our old normal. I don’t think we’ll ever be one of those families that’s always moving and shaking. But I’m pleased that we had a little margin in our lives to try something new.

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.


Leave a comment

Fill in the required fields to post. Your email address will not be published.