Seeing my Angel from her sister’s perspective affects my view, too

Sibling relationships are complex, but especially so when Angelman is involved

Sabrina L. Johnson avatar

by Sabrina L. Johnson |

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My 13-year-old Angel, Juliana, doesn’t really play with children or work to make friends. Although interactions with others are part of her Individualized Education Program goals, it’s her relationship with her younger sister, Jessa, that I want to ensure is thriving.

Sibling relationships can be hit or miss. I know some people who’d trade for another brother or sister if they could. When you add a rare disorder to the mix, the connection can become even more complicated.

When the Angelman Syndrome Foundation started its Friends With Wings group a few years ago, Jessa was front and center as a participant. The program, for siblings and friends of those with Angelman syndrome, lets children across the U.S. meet via Zoom to talk about their perspective on life with Angelman.

Sib groups, as they’re called, aren’t a new concept. But while most groups focus on teens, this group worked to capture younger audiences. I sat in on some sessions and felt relieved that Jessa was responding with her true feelings and not just what she felt was the right thing to say. Her honesty is therapeutic and helps me understand how I can help her feel seen, even as I’m often focused on caregiving.

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Enough for both of us

The support group hasn’t met in a while, but this week, when Jessa turned 12, I wanted to focus on her a bit more. That’s why I interviewed her during a “Hey, how’s it going?” chat. I told her I’d be writing a column about her bond with Juliana, then asked about her favorite activities to do with her sister, as well as those she found difficult. Her sweet responses are just what I’d hoped for.

I don’t ever need an excuse to check in with my daughter, but her last year as a tween seems like the perfect time to do it. I wanted her to know that I appreciate her and the amazing love and compassion she shows to her sister. Juliana made a horrible mess in her room the other day, for instance, yet before I could initiate a cleanup, Jessa had put the entire floor mat back in place.

She’s always doing little kindnesses like that. For all the times that Juliana lashes out or even grabs her when she’s angry, Jessa takes it all in stride.

Two girls sit atop a multicolored mat of squares featuring capital letters, lying atop a light tan carpet. A tan chest of drawers is in the rear. The girl at left holds a computer tablet and wears what looks like a tie-dye T-shirt; the other girl, in a pale green T-shirt, holds what appears to be one of the mat's squares, in brown.

Jessa, in the rear, holds part of the floor mat she put back together after Juliana had ripped it apart and scattered it around her room. (Photo by Sabrina L. Johnson)

Sometimes I do wish that my girls would have deeper sister moments. I’d like for them to skate together or sit around and giggle about things girls dish about. Then I remember my talk with Jessa and her saying, “I love playing on the floor with Juliana when she’s laughing.” In her world, that’s just as good as skating and giggling. And in my world, I’m seeing that it needs to be enough for me, too.

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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