Moments to treasure

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It was a plane ride back from a family trip to the southwest. My parents and I had been to Las Vegas to see some family members on my dad’s side, turning it into a much larger trip beyond that. I was seated between my mom and dad, my mom at the window, and my dad at the aisle. I’d finished the in-flight cross-stitch project I’d brought along, so I was just listening to a book now. It was late, and I was tired. We were all tired. We hadn’t talked much on the flight; instead, we were content to find our own entertainment.

As we approached Philadelphia, our final destination before home, my mom slid up the window cover to watch our descent. I looked over at the view, and at her.

In that moment, looking at my mom, I was suddenly struck by the reminder that my moments with her were finite.

All our moments with everyone are finite, but with our parents we know for sure that (barring our own tragedies) they will leave this world before us. It’s a hard pill to swallow.

With this thought, I turned to look at my dad too. I often worry about him. He’s got plenty of health issues. I sometimes have that sharp fear in my chest that he’s about to be taken, without warning. It’s a fear that hasn’t born fruit yet, and maybe it never will. Not in that exact shape. But he’s going to be taken away from me one day. They both are.

Facing the inevitable death of a parent is not a struggle unique to me, but it’s a hard one to carry. Not just because of how fiercely I love my parents, but also because of how much my life is still deeply intertwined with theirs. They’re my strongest support system, and the gap that would be left by their loss feels unfathomably huge.

It’s common for disabled adults to live with their parents. Sometimes by choice, sometimes by necessity, and sadly sometimes despite their own wishes. It’s not just disabled adults, many adults these days live with their parents for financial reasons, but I’d wager we take up a good lion’s share of that category.

I’ve lived on my own before, though always as a temporary thing. It’s not that I think independent living would be impossible, or that it scares me. But even when I’ve been apart from my parents, I still know they’re there for me. Even countries apart, I still know I can turn to them in an emergency, and they’d drop everything to help. That’s a sense of safety I fear living without.

I don’t just have my parents. I’m lucky enough to also have very close relationships with both my aunts on my mom’s side. I’ll have to face losing them as well someday. I feel that same kind of predicted grief when I think about it.

The importance of having family there to be a support network can’t be understated. I know that’s why my dad has been trying to help me bond with those on his side of the family.

Especially one of my cousins, who has kids of his own. It’s hard though. Unlike my aunts, I haven’t known them all my life. That side of the family has been much more distant until recently. We just don’t have that same closeness, and that’s not something you can force. I’m not sure how to bridge that gap. Yet I know they’re the family I’m going to have around the longest. This is a scary thought to me in its own way. A lonely one too.

I’ve been spoiled, I know. Living as an only child, the focus of several people’s unconditional love. Having those people nearby most of my life. Many don’t get to have that.

I have friends too, but I would never ask or expect them to support me in the ways my parents have. My parents have financially supported me and kept a roof over my head with very little asked in return, for far longer than society at large declares them obligated to. They have never made me feel like a burden, which is something I will always be grateful to them for. They have emotionally supported me as well, being my rock as I’ve weathered many storms. I have never truly had to face a single dark day alone.

Please don’t think my fear of the inevitable death of my parents is purely in terms of the things they do for me. Of course I love them back just as unconditionally.

But as a disabled adult, I do find myself still more dependent on them than many of my peers are. And so, their loss terrifies me. That the stability, comfort, and safety of them will inevitably be ripped out from under me is a kind of existential horror.

And yet I must face the reality of that. I must eventually face the day they will be gone.

During that trip to the southwest, we stayed at the Grand Canyon. One night, at my suggestion, we all went out stargazing. The Grand Canyon is a dark sky park, and the chances to see a proper starry sky are becoming vanishingly rare.

To go stargazing, even in a place designed to minimize light pollution, you have to find a dark place to sit and then wait for at least half an hour. Letting your eyes adjust to the dark. We’re exposed to too much bright light at all hours of the day now. Makes it harder to see the stars for what they are.

My dad found us a bench to sit on. I think he was quite proud of himself. My mom was surprised he’d ventured out as far as he did from our lodge to find the right spot.

It was a bit terrifying to navigate the canyon rim in the dark, even when we had our headlamps on. It was a cold night too. My mom and I had to go back to retrieve another layer of coats, which is why my dad had gone on ahead.

The canyon visible beyond the rim looked like an inky black void, even darker than the sky. Like the world just ended beyond that point.

All three of us were pressed together on the bench. Sharing body heat as we watched the sky and waited. I was sat between them, just like I would be on that plane ride only a few days later.

We talked about what we’d enjoyed most on the trip, now almost at the end of it. In the dark, we couldn’t even see each other’s faces.

At the end of it all, we were just glad we got to have this time together.

I remember what struck me about the stars, once I could see them properly, was seeing them twinkle. I don’t think I’ve ever actually seen stars twinkle, blinking in and out as though sending some coded message. When we eventually headed back to the lodge, I took an extra-long moment to take in the shimmering black sea in the sky. I looked at it for as long as I could, until my mom called for me to follow them inside.

I can’t hold any moment forever, as much as I try. But I can still treasure it.

Rachel

Rachel is a Jewish bisexual autistic woman (she/her) with ADHD in her twenties. She loves writing and can always be found with her nose in a book! Her plan for the future is to earn her Psy. D. in clinical psychology. This interested in psychology started as a way to help her understand people better and to figure out what it was about others I kept not getting. It is also something deeply linked with her self-advocacy. There is a gap in communication between the autistic community and providers, and she want to help bridge it and challenge others to see things from different perspectives.

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