When Grief Doesn’t Set Aside the Symptoms of Angelman Syndrome
Living with a condition that affects daily life, even during a family crisis
At some point in life, tragedy or death strikes. Sometimes, they show up as partners. That was the case this past week, as my family grieved the sudden loss of my 23-year-old niece from a car accident. Wouldn’t it be great if Angelman syndrome took a back seat while I grieve?
I’ve written about living with Angelman syndrome and the facets of my life that it affects each day. How I work, live, and play are all centered around Angelman. At times, the angst we face stems from a sudden illness or emergency with our 12-year-old Angel, Juliana. But this week, our grief was from a loss of life.
My husband and I had been doing our divide-and-conquer routine with our daughter as we toggled visits to the intensive care unit. Grief is tough, but Angelman doesn’t say, “Oh, I see you’ve got a crisis, so I’ll come back later.” When we got the news of my niece’s passing, and after my initial shock, my mind immediately went to Juliana. Questions began swirling regarding bathroom trips, behavior, and her ability to sit through a service.
When Juliana’s mood allows, we attend functions as a family. And if the event falls at a time that’s not good for her, one of us stays home with her and the other goes to the event. After my head spiraled for a bit, I knew I’d need to make a plan, as I always do. Friends stepped up to offer help we might need, and that was a beautiful bonus amid all the processing.
Saying no to surprises
Eventually, we felt that having Juliana stay home was the best option. As it turns out, the service was planned during a time when she was at school. On the other days, we visited with our family during her school hours. When it was time for her to get out of school, that was our cue to head home. For visits outside of school hours, we divided and conquered again.
Had Juliana not been at school, we were planning to get one of her babysitters for the day of the memorial service. Funerals involve stress and sadness, and they’re not the best place to manage a meltdown.
I always have regrets when I feel I haven’t managed Juliana’s behavior well. Once, for example, I forgot her augmentative and alternative communication device during a holiday visit with our extended family. With limited options for communicating, she was superfussy, and I was superstressed by her actions.
But this week, there were no regrets about mishandled meltdowns. Reworking our schedules and plans to avoid the unpredictable stressors from Angelman was a wise choice. I can’t ever put the condition on hold, but eliminating the elements of surprise works well enough.
An angel in her own right, this column is dedicated to my beloved niece Kaitlyn Mazie Johnson.
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