- My sister was born with a rare genetic condition.
- She is non-verbal, has intellectual disabilities and requires round-the-clock care.
- Spending time with him and my children made me understand a lot about our relationship.
Six years later the double deaths of my parentsI finally brought my husband and two children to my hometown to visit my sister. Born with a rare genetic syndrome, she is non-verbal, intellectually disabled and requires round-the-clock care.
I never thought of staying away for so long. Of course, life got in the way: I did pregnant with my second childand then the pandemic sidelined any travel for nearly two years, as I didn’t want to risk exposing my sister.
But the truth is, I kept putting it off, even after life returned to normal. I didn’t know how to get home my only brother.
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 boundless love and acceptance for their children. I can’t remember a day when they didn’t hold hands or secretly kiss, but love worked against them: after my father died, my mother’s cancer returned and she joined him a year later. They simply could not live without each other.
With our parents gone, I earnestly met 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, delivered fruit cakes (her favorite) at vacations and backyard kiddie pools every summer, and had boxes of goodies delivered from a local bakery. But even as my oldest son began to ask when we would see his aunt alone, I worried that I wouldn’t be able to foster a sense of love between her and my children—so I kept stalling.
Her disabilities are obvious
Because here’s the thing: while some disabilities aren’t that obvious, my sister’s genetic differences are front and center. Born with Charge syndrome, she has the hallmarks of this rare diagnosis. Her pupils are elongated, her face asymmetrical and her eyebrows heavy; her nose is flattened and crooked, her arms extremely long, and her eye is almost gray due to retinal damage.
She has a slow, lumbering gait and has literally never run. She combines grunts, some ASL signs and body language to communicate. Although she would never hurt anyone, she has occasional outbursts when upset, screaming and flapping her arms at her sides in frustration. My oldest son doesn’t remember being afraid of her when he was in preschool, but it bothered my mom.
Without my parents to guide me, what if I wasn’t enough?
I planned a family trip to visit him
Finally, I decided to rip off the Band-Aid. By this point, I had visited once with my youngest child, who found his aunt’s sweets funny and still marveled at the time she ate four chocolate chip cookies. “You can’t do that!” he would laugh, retelling the story months after our short trip to test the waters.
I made reservations for the 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 off our bags, headed to her favorite burger joint, and then went straight to her house.
I held my breath as we walked in, but her face immediately lit up.
“Airplane,” she signed with a smile, just as she did when I visited during college. “Hug.”
I wrapped my arms around her and snuggled up as the kids looked on awkwardly. Within seconds, she pushed me away and started laughing as she walked over to my husband. It had been years at this point, but somehow—despite her very limited vision in only one eye and the fact that she had no glasses—she recognized him instantly. She was excited, jumping a little in the air with a big smile, and threw her arms around him.
And then she saw my oldest son. He was only 6 the last time she visited, but 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 he knew what to do.
She leaned against him, now almost as tall as she was. An inch from his face, she studied it all—his green eyes, the braces, the long hair. He laughed nervously.
“I’m not sure what to do, Mom.”
“Okay”, I assured him. “Remember, she can barely see, so she has to get close. But she remembers you, honey.”
Then they hugged, and my sister’s laughter filled the room. My 4-year-old, who never sits out of attention, started pulling her arm and demanding her attention. She looked down, laughed and patted his head.
Children do not hold prejudices
My tears flowed before I felt them coming and I quietly left for the bathroom.
I was so afraid that the trip would be a bust that I would return to find not only a broken relationship with my only sister, but embarrassment or even fear for my children.
In that moment, I was reminded that, unlike adults, children do not carry the same baggage or prejudices unless we pass them on. Their innate curiosity fuels a desire to understand what is new and familiar, not to avoid it. Of course, they knew right away that my sister was unlike anyone they had ever met, but this was an opening to something new. They wanted to learn more, spend time with him to understand that difference on a deeper level and discover their similarities in the process.
In my years away, I had forgotten these essential truths. In my grief and isolation, I had forgotten that family ties don’t have to be what we see on TV to be real, strong, and lasting. And I had forgotten how, despite extremely limited communication, my sister speaks volumes in her laughs, silly faces, and hugs.
When I look back on the first family trip home, we didn’t “do” much. We spent the weekend sharing her favorite foods, watching her beloved 1980’s “Sesame Street” DVDs, snuggling and sitting in silence. Before long, my oldest was engrossed in his iPad while my youngest raided my 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.
