Routines, Not Recklessness, Improve Our Life With Angelman Syndrome

Last-minute plans can be stressful for parents of an Angel

Sabrina L. Johnson avatar

by Sabrina L. Johnson |

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I am a planner by nature. And in some small way, I envy people who are not. As we raise our 12-year-old Angel, Juliana, I have concluded that shooting from the hip and last-minute plans won’t be a part of our lives on a regular basis.

A lot of unexpected things happen when you are living with Angelman syndrome. Sometimes Juliana gets sick. Other times, she’s not really happy about doing things or going places. When the activity is necessary, we push past the behavior. If the event is not time-sensitive, we plan a way to make it up as a do-over.

And then there are moments when we don’t necessarily know what’s going on with her. So, given these issues and the other emotional situations that we face with Angelman syndrome, last-minute plans can add to our stress as parents of an Angel. Sometimes this isn’t easy for people to understand — even for friends who are close to us.

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As my husband and I get older, many of our friends are getting older, too. Their kids are growing up and becoming more independent. Juliana’s 11-year-old sister, Jessa, is reaching her stride as a preteen. Juliana is becoming more independent, too, but in a different way.

So last-minute golf outings, play dates, or even a quick lunch simply may not work for us. When I can, I do my best to accommodate some last-minute events. After all, not every part of life can be planned.

It took my husband some time to make this adjustment. When he wants to add something to our schedule, he says, “I know the answer is probably no, but …” I do my best to make it work, but in reality, every choice depends on what is already happening.

To make our life run semi-normally, I’m shifting daily life puzzle pieces to make them fit. One wrong piece and the puzzle doesn’t work. Years ago, when I learned to make peace with this type of planning, our lives began to feel more normal for us. But it can be difficult at the beginning of living with Angelman syndrome, when you feel like you’re missing out on something.

I let go of that guilt and remorse a long time ago. Instead, I know and appreciate that when our lives have more routine and flexibility for unexpected things, it makes for a smoother journey.

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.


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