Expecting bad days is no way to live with Angelman syndrome

'Foreboding joy' gives a new meaning to good days with my Angel

Sabrina L. Johnson avatar

by Sabrina L. Johnson |

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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 in progress. My goal is to grow and be better despite living with my daughter’s Angelman syndrome (AS). It doesn’t matter if I take in self-help information via a book, a podcast, or even a documentary. I always look for a connection with Angelman syndrome to improve my quality of life. I stumbled upon Brown while looking for something uplifting to watch on Netflix.

The sky isn’t falling

Her Netflix special, “Brené Brown: The Call to Courage,” reminded me that I should relax more when things are going well. Life with AS is unpredictable, and running around like Chicken Little is a bad idea.

Juliana is quite healthy, despite many of the challenges that come with Angelman. Angels may face neurological issues like seizures, or gastrointestinal ones like constipation and reflux. But it’s the hyperactive or overemotional behavior that I find most challenging.

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Angels are known for their smiles and happy demeanor, but that isn’t always Juliana’s disposition. On a given morning, she could potentially start out happy, only to face a meltdown minutes later. On her last day of fifth grade, it was the opposite. She started out in a complete frenzy but recovered in time to make it to school. Last week at church, she nearly lost it climbing two steps to get to our seats.

After facing some challenges last Easter, I was a little nervous about what we would encounter this year. Fortunately, the transition to her seat was the only hiccup.

Managing behavior like this would be stressful for anyone. It’s a lot to consider, even on a good day. This is where foreboding joy enters. Once the crisis is over, I should move on. When things are going well, I shouldn’t fear the next meltdown or illness.

Bye-bye, Chicken Little

Now that I can name it, I’m working harder to push foreboding joy out of my mind. What helps? Taking small moments in my day to gratefully name what is going well. This mindfulness practice known as shoshin really works.

Affirming Juliana’s positive behavior helps, too. When we go places and she has a great experience, I’ll tell her how well she did and that I’m proud of her. It’s hard to focus on the potential doom when you’re looking at the good.

Sometimes, unfortunately, it can be easier to dwell on the negative, crazy behavior that exhausts me. Turning my mindset around and focusing on the positive attributes is real work. Spinning that negativity into positivity is a conscious and necessary choice. I write this column for parents like me, but writing helps me keep a glass-half-full perspective, too.

When you’re living with a rare disorder, I’m not sure that foreboding joy ever goes away completely. But I know that focusing on all the good we have and taking life one day at a time certainly helps.

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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