Seeing my Angel from her sister’s perspective affects my view, too
Sibling relationships are complex, but especially so when Angelman is involved
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.
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.
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.
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