- My sister was born with a rare genetic condition.
- She’s nonverbal, has intellectual disabilities, and requires care around the clock.
- Spending time with her and my kids made me realize so much about our relationship.
Six years after my parents’ back-to-back deaths, I finally brought my husband and two children to my hometown to visit my sister. Born with a rare genetic syndrome, she is nonverbal, has intellectual disabilities, and requires around-the-clock care.
I never intended to stay away for so long. Sure, life got in the way: I became pregnant with my second child, and then the pandemic sidelined any travel for nearly two years, as I didn’t want to risk exposing my sister.
But the truth is that I kept putting it off, even after life returned to normal. I didn’t know how to go home to my only sibling.
I handled everything for my sister
My mom and dad weren’t perfect, but they loved each other madly and did everything possible to build a home filled with love and boundless acceptance for their kids. I can’t remember a day when they weren’t holding hands or sneaking in kisses, but the love also worked against them: after my father died, my mom’s cancer came back, and she joined him a year later. They simply could not live without each other.
With our parents gone, I diligently handled my sister’s expenses and the logistics of her care from my home two states away.
I checked in regularly with her aides, attended care team meetings, sent fruitcakes (her favorite) at the holidays and kiddie pools for the backyard each summer, and had boxes of sweets delivered from a local bakery. But, even as my oldest son started asking when we would see his only aunt, I worried that I wouldn’t be able to nurture a sense of love between her and my kids — so I kept stalling.
Her disabilities are visible
Because here’s the thing: while some disabilities aren’t as visible, my sister’s genetic differences are front and center. Born with Charge syndrome, she has the hallmark features of this rare diagnosis. Her pupils are oblong, her face asymmetrical, and her brows are heavy; her nose is flattened and crooked, her arms strikingly long, and her eye is almost gray due to retinal damage.
She has a slow, awkward gait and has literally never run. She combines grunts, a few ASL signs, and body language to communicate. Although she would never hurt anyone, she has occasional outbursts when upset, shouting and smacking her arms against her sides in frustration. My oldest son doesn’t remember being afraid of her as a preschooler, but it tormented my mother.
Without my parents to guide me, what if I wasn’t enough?
I planned a family trip to visit her
Finally, I decided to rip the Band-Aid off. By this point, I’d visited her once with my youngest child, who found his aunt’s sweet tooth hilarious and still marveled about the time she’d eaten four chocolate cookies. “You can’t do that!” he’d giggle, retelling the story months after our short trip to test the waters.
I made reservations for all four of us to fly to my hometown for a long weekend in the fall of 2024. We got an AirBnB in my childhood neighborhood, close enough to my old haunts to feel familiar. We dropped our bags, headed to her favorite drive-thru burger shop, and then went straight to her house.
I held my breath as we walked inside, but her face lit up immediately.
“Airplane,” she signed, smiling, just as she used to when I would visit during college. “Hug.”
I wrapped my arms around her and squeezed as the kids watched awkwardly. Within seconds, she pushed me away and began to laugh as she walked to my husband. It had been years by this point, yet somehow — despite her very limited vision in only one eye and the fact that she didn’t have her glasses on — she recognized him immediately. She was thrilled, giving little jumps into the air with a huge smile, and threw her arms around him.
And then she saw my oldest son. He was only 6 the last time he visited, yet somehow, she still knew his trademark curls.
“Baby,” she signed. I remembered the time she fed him a bottle when he was 6 months old, marveling at how intuitively she knew what to do.
She leaned close to him, now nearly as tall as she was. An inch from his face, she studied it all — his green eyes, braces, that long hair. He laughed nervously.
“I’m not sure what to do, Mom.”
“It’s OK,” I assured him. “Remember, she can barely see, so she needs to get close. But she remembers you, honey.”
Then they hugged, my sister’s peals of laughter filling the room. My 4-year-old, never one to sit out of the spotlight, began pulling her arm and demanding her attention. She looked down, giggled, and patted his head.
Kids don’t hold biases
My tears spilled over before I even felt them coming on, and I stepped away silently into the bathroom.
I’d been so scared the trip would be a bust that I’d return to find not only a broken relationship with my only sibling but with discomfort or even fear from my kids.
In that instant, I remembered that, unlike adults, children do not hold the same baggage or biases unless we pass them on. Their innate curiosity fuels a desire to understand what is new and familiar, not shun it. Of course, they knew instantly that my sister was unlike anyone they had ever encountered, but this presented an opening for something new. They wanted to learn more, spend time with her to understand that difference on a deeper level, and uncover their similarities in the process.
In my years away, I had forgotten these core truths. In my grief and isolation, I had forgotten that family bonds don’t have to be the ones we see on TV to be real, strong, and sustaining. And I’d forgotten how, despite extremely limited communication, my sister speaks volumes in her laughter, silly faces, and hugs.
When I look back on that first family trip home, we didn’t “do” much. We spent the weekend sharing her favorite foods, watching her beloved 1980s “Sesame Street” DVDs, snuggling, and sitting quietly. Before long, my oldest was engrossed by his iPad while my youngest raided his aunt’s room for toys and puzzles. It looked like nothing, but it was pure magic.
And my kids can’t wait to go back.
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