The Siblings of Angels Need Love, Too
Much of my time and effort as a parent is spent taking care of my 12-year-old Angel, Juliana. That’s the nature of being a special needs parent of a child with Angelman syndrome. But Juliana also has a 10-year-old sister, Jessa, and it’s quite a balancing act for me to manage both caregiving and looking out for my other child.
More hands and time would make things easier, but instead, I rely on intent and awareness.
Years ago, when I wrote an e-book titled “Forward: First Steps on the Path to a Special Needs Life,” a friend suggested that I write a follow-up specifically for siblings. She knew a family that was raising a child with special needs and said it bothered her tremendously that so much attention was spent on that child at the expense of the siblings.
It’s true that siblings in this situation don’t always receive the same attention as their special needs brothers and sisters. Caregivers have so many demands for their time. The issue is so prominent that in 2019, the Disorder: Rare Disease Film Festival featured several films focused on the siblings of children with rare diseases.
Show me that you love me
I would never purposely neglect either of my children. Providing daily caregiving for Juliana isn’t optional, and sometimes there is little room for anything else. Additionally, ongoing or pressing issues with Juliana can’t be ignored.
As a care provider who’s already carrying a full load, how can I make time for my other daughter? I can make time for her by ensuring that her well-being is just as important as any other intentions, goals, or responsibilities I have. Because I have a full plate, giving love, attention, and care to Jessa must be intentional.
A great example of being intentional is the dual role I get to have in Jessa’s life right now. This year, I’m not just her mom, I’m also her fifth-grade teacher. This might be a good or bad thing, depending on which day you ask her. But several years ago, when I shifted my career path, I wanted to have more time with both of my girls. I took a job at Jessa’s school so that I could be more plugged in with her. It was one of the best decisions I’ve ever made both for her and me.
Sabrina and her daughter Jessa, 10, wear matching shirts at their school’s 2019 fall festival. (Photo by Sabrina L. Johnson)
‘I’ll be there for you’
Some may think it odd to teach one’s own daughter, but I love it. I want Jessa to know I’m there for her, too. Because my daily schedule is identical to hers, it gives me time with her one-on-one when Juliana is at school. I love the times when Jessa and I get to bond through special activities, and those moments when we do absolutely nothing are sweet, too.
Sabrina and Jessa pick strawberries to celebrate the last day of school in 2021. (Photo by Sabrina L. Johnson)
At the heart of the matter, I don’t ever want Jessa to feel that she must take a back seat to my role as a caregiver to her sister. With intentional change, I’ve made it possible to show up in a unique way for Jessa. I hope she can see the love in my actions.
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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