Making the best of a change to our routine that’s much too big
Why a consistent schedule matters when living with Angelman syndrome
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.
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.
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.
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