What happens when you are carrying today’s responsibility and tomorrow’s fear at the same time?

There is a moment in Disney’s Finding Nemo that has stayed with me since the first time I saw it.

Marlin tells Dory, “I promised him I’d never let anything happen to him.”

And Dory answers, “Huh. That’s a funny thing to promise.”

It’s a simple exchange in a children’s movie, but it’s not a simple promise. Marlin isn’t afraid because he’s imagined everything that could possibly go wrong. He’s afraid because something already has. He knows what it feels like to lose almost everything he loves. So when he promises Nemo, “I will never let anything happen to you,” it doesn’t sound unreasonable to him. It sounds like love.

I understand that kind of promise.

I am Ry’s mom. Ry is my adult son. He is severely autistic and non-verbal, and caring for him has taught me a great deal about the difference between ordinary worry and the kind of vigilance that develops because experience has taught you that details really do matter.

There are things about Ry I know almost without thinking. I know his rhythms. I know his behaviors. I know what certain sounds mean. I know when something is probably fine and when something feels just a little too different. I know what frustrates him, what calms him, what he tolerates, what he doesn’t, and how much patience something may require. 

Sometimes life with him is funny. Sometimes it’s exhausting. Sometimes the unexpected is merely inconvenient. Sometimes it can become frightening very quickly. And because Ry can’t simply explain to me what happened, what hurts, why he is upset, or what another person did when I wasn’t there, noticing matters.

That’s part of caring for him. It’s also part of what scares me most about the future.

Who will notice?

One of the thoughts that special-needs parents do not always say out loud is: What happens to my child when I am gone? Not when I’m tired. Not when I need an afternoon off. Not when someone else takes over for a few hours.

Gone.

There will come a time when I’ll no longer be the person standing beside Ry, and I can’t think my way around that truth. I’ve heard stories about group homes and other care settings that are terrifying to me as the mother of a vulnerable, non-verbal adult. That doesn’t mean I believe everyone who works in those places is uncaring. Many people care very much. But caring about someone and loving them as their mother does aren’t necessarily the same thing.

Even Ry’s siblings, who love him, don’t care for him exactly the way I do. They don’t have my patience with him. They don’t know him in precisely the same way. That is not an accusation against them. It’s simply true.

I have spent decades learning this particular human being. A stranger entering his life someday can’t begin with decades of knowledge. And somewhere underneath all of the planning questions is a much more frightening one: Will someone notice what I would have noticed?

Will they know that this behavior means something is wrong? Will they be patient when he’s difficult? Will they understand when he can’t explain himself? Will they recognize the difference between stubbornness, fear, discomfort, illness, overstimulation, and whatever else he may be trying to communicate without words? Will somebody advocate for him when doing so is inconvenient? Will somebody look closely enough? Will somebody care enough to keep looking?

Those questions don’t disappear simply because I know I can’t control the future. If anything, knowing I can’t control it makes me want to prepare for it more.

When love becomes a planning department

So I think about what needs to be done.
Financial planning.
Future care.
Benefits.
Housing.
Medical information.
Paperwork.
Guardianship questions.
Emergency information.
Routines.
Documentation.

The things someone else would need to know about Ry. The things I can teach him now. The things I may need to teach other people. The things I should research. The things I should save for. The things I should arrange. The things I should have already done. 

That last category is where love can quietly turn into guilt. Because once I know something could make Ry’s future safer, another thought is never far behind: 

If something could make the future safer, and I haven’t managed to do it yet, am I failing him?

That one hits me – a lot harder than I’d like to admit sometimes. Because there are things I genuinely should do. This isn’t imaginary responsibility. Ry’s future deserves planning. He deserves protection. He deserves people around him who understand as much about him as possible. 

But knowing that doesn’t magically create more hours in a day. It doesn’t create money that isn’t there. It doesn’t create energy when I’ve run out of it. It doesn’t eliminate today’s responsibilities while I prepare for tomorrow’s.

Ry still needs care now. The house still needs attention. Food still needs to appear. Appointments still need to be made. Problems still arrive. The rest of the family still exists.

I still exist.

And somehow the future keeps standing there with a clipboard asking whether I’ve completed everything yet.

I haven’t.

I probably never will. Because there will always be one more precaution. One more document. One more appointment. One more conversation. One more possibility I didn’t anticipate. One more thing that, theoretically, might make something a little safer someday.

That’s an impossible standard for love.

The house of tomorrow

Years ago, long before Ry was born, Kahlil Gibran’s The Prophet became an important book in my own spiritual journey. There’s a line in his reflection “On Children” that has followed me differently as I have gotten older:

“For their souls dwell in the house of tomorrow, which you cannot visit, not even in your dreams.”

I first encountered those words as a young woman. They mean something very different to me now that I’m actually a mother. Because I am trying to prepare a house I cannot visit. That may be one of the strangest parts of caregiving. You can build toward the future. You can leave instructions. You can save. You can teach. You can advocate. You can research. You can put structures in place. You can tell people what matters. You can try to make the path safer. But eventually the person you love has to enter a tomorrow where you cannot follow.

For many parents, that truth is connected to letting an adult child build an independent life. For some caregivers, it looks very different. Ry will always need substantial support. The fact that he’s an adult doesn’t remove that need. So “letting go” isn’t really the right language for me. I’m not preparing him to stop needing care. 

I’m trying to help create a future in which care will still exist when mine does not.

That’s a different kind of letting go. And I don’t know that I will ever become comfortable with it.

Preparation is love. Control is something else.

Maybe this is where Marlin’s impossible promise matters. I will never let anything happen to you. What parent hasn’t felt some version of that? What caregiver hasn’t wanted to make it true?

If I plan enough, maybe I can prevent it. If I stay alert enough, maybe I can catch it. If I know enough, save enough, document enough, prepare enough, teach enough, maybe I can build such a strong wall around the future that nothing terrible can get through.

Except love doesn’t give us that power.

Preparation matters. Advocacy matters. Planning matters. Showing up matters. Knowing someone well matters. None of that is meaningless simply because it can’t guarantee an outcome.

But there is a difference between preparing for the future and trying to carry the entire future in advance.

I’m still learning that difference. Some days better than others. There are things I need to do for Ry’s future. There are things I want to do. There are things I can’t afford to do yet. There are things I don’t have the energy to tackle today. There are things I’m still trying to understand. There are things that will have to wait. And waiting does not automatically mean I love him less.

Not yet is not the same thing as “I don’t care.”

That may be one of the hardest truths for a caregiver to accept. Because when the stakes are someone you love, unfinished tasks can feel like moral failures. They aren’t always.

Sometimes they’re simply unfinished tasks.

This is bigger than special-needs parenting

My version of this fear has Ry’s face. Someone else’s may have the face of a parent with dementia. A spouse with Alzheimer’s. A medically fragile child. A sibling with disabilities. A partner whose health has changed. A family member whose needs have gradually turned someone else into the keeper of the details.

Caregiving situations are different, but I suspect many caregivers recognize the question:
If I am no longer the person watching, who will notice?

Who will remember? Who will understand? Who will advocate? Who will have the patience? Who will recognize the tiny thing that means something bigger? Who will care enough to keep paying attention? 

There is no answer I can give that makes those questions disappear. I wouldn’t insult another caregiver by pretending there is. Sometimes fear isn’t waiting for a better perspective to make it vanish. Sometimes fear is responding to something genuinely uncertain.

But perspective can still change what we ask ourselves to do with that fear.

Look Again

Maybe the goal isn’t to stop caring about tomorrow. Maybe it isn’t to stop preparing. Maybe it isn’t even to stop worrying completely. Maybe the question is: What belongs to today? What can I actually do now? What needs my attention? What can wait without becoming neglect? What can someone else help carry? What am I preparing for responsibly? And what am I trying to guarantee because the alternative scares me too much to accept?

There are futures we can influence. There are futures we can prepare for. There are futures we can make safer. But there is no future we can completely secure.

I wish there were.

Especially for Ry.

I would build it for him with my bare hands. But I can’t live his entire tomorrow today. I can love him today. I can care for him today. I can prepare what I reasonably can. I can keep building the landing place. And when fear tells me that anything less than guaranteeing his future means I have failed him, I can try to remember:

Planning for someone’s future can be an act of love. Trying to carry their entire future today is impossible.

Maybe Marlin’s promise was funny because it was impossible. But I understand why he made it.

I think a lot of us do.