Gas? What Gas? The Daily Fear of Every Aging Parent of a Child with a Disability

 

What happens when turning 70 doesn't feel like reaching a milestone, but like running out of time?

Yesterday there was a gas leak at my daughter's program, on my 70th birthday. Construction had pierced a pipe, the shut-off valve was stuck open, and everyone had to evacuate immediately. My 41-year-old daughter was playing vegetable bingo—something she needed to complete because that's how her mind works. When staff tried to get her to leave, she resisted. She had to be physically carried out, traumatized and unaware of the danger she was in.

Later, I was able to help her understand that the people who evacuated her may have "saved her life," and she thanked them. But I lack faith that in a repeat evacuation, the same thing wouldn't happen. If there's ever a need to take cover, seek shelter, flee danger—this will be a challenge for whoever is supporting her.

This is my constant, daily worry crystallized into one terrifying afternoon.

I've been thinking about this conversation we need to have—those of us who are aging parents of children with disabilities. You know the one. The conversation about how every birthday feels different when your 41-year-old daughter still needs you to be her voice, her solace, and her greatest advocate—when she needs you 100%.

At 70, I should probably be thinking about hobbies or grabbing a bag and taking off on a month-long vacation. I watch my friends plan cruise itineraries and spontaneous weekend trips, complaining about having "too much time on their hands." They talk about finally being free to follow their own schedules, to sleep in, to say yes or no to social invitations based purely on their own desires. That freedom feels as foreign to me as flying to Mars. Instead, I wake up most mornings with the same thought that's been nagging at me for years: What happens to my 41-year-old daughter when I'm gone?

She loves American Girl dolls, anything Disney, and shopping trips that make her eyes sparkle with joy. She needs me to be her voice when the world doesn't understand her needs, her solace when things don't go as planned, and her greatest advocate when systems fail her. She needs me 100%. And at 70, that complete dependency feels both precious and terrifying.

This Isn't the Kind of Mortality Awareness They Study

You've probably read about how thinking about death can actually be good for you. Researchers have whole theories about "mortality salience"—how confronting our own mortality makes us more grateful, more focused on what matters, better at making healthy choices. Buddhist monks meditate on death daily and report feeling more alive because of it.

That sounds lovely, doesn't it? Philosophical. Enlightening.

But here's what those studies don't capture: the particular weight that sits on your chest when you're 70 and your 41-year-old child still needs you to advocate for them at every doctor's appointment, when they still can't navigate the world's bureaucracies alone, when they light up when you walk in the room like you're their whole universe.

This isn't abstract mortality awareness. This is lying awake at 3 AM doing math—how many years do I realistically have left? How long before I can't drive them to appointments? How many more times will I be able to fight for their services before I'm too old to be taken seriously?

The Math That Keeps Us Up at Night

When you're our age with a child who needs us, mortality isn't a meditation—it's a deadline. And unlike other deadlines, this one comes with devastating consequences for the person you love most if you don't get everything sorted in time.

I find myself thinking about death differently than my friends whose children are independent. They might contemplate their legacy, their unfulfilled dreams, their spiritual readiness. Me? I'm making lists. Who will remember that my daughter gets agitated in crowds? Who will notice if she's ill? Who will fight for her when the Medicaid changes take effect or Prop 19's tax reassessments make her no longer able to live in the house you've secured so they always have a place to live?

The cruel irony is that while other people's mortality awareness might help them live more presently, ours keeps us trapped in the future. Instead of savoring today's moments with our child, we're consumed with arranging tomorrow's safety net.

The Questions That Haunt Us

Maybe you recognize these thoughts. They visit me daily now:

Will the program I've chosen still be well-run in ten years? What if the good staff members leave? What if my daughter doesn't understand why I'm not coming to visit anymore? Have I set aside enough money or will it all be needed for my elder care? What if costs keep rising faster than the trust fund? Who will remember to celebrate her birthday the way she likes it—with Disney decorations and a new American Girl doll? Who will take her shopping and understand that she needs time to touch everything, to process each decision? Who will know that when she's upset, she needs her comfort items arranged just so?

And the big one, the one that makes me feel like I'm drowning: Am I the only person in the world who truly loves her unconditionally?

These aren't the kinds of mortality thoughts that lead to spiritual awakening. They're the thoughts that make you want to live forever, not because you fear death, but because someone needs you to.

When Love Makes Mortality Unbearable

At 70, I'm supposed to be making peace with my limitations. Instead, I'm raging against them. My hip hurts, half the time I can't remember what I just said, I get tired more easily—but my daughter still needs an advocate, a protector, someone who will never give up on her. Someone who understands that her love for Disney isn't childish—it's pure joy. Someone who knows that shopping isn't just an activity for her—it's exploration and decision-making practice wrapped in happiness.

There's a particular kind of grief in watching yourself age when someone depends on you completely. It's not just the normal sadness of time passing—it's the terror of becoming inadequate for the job you can never retire from.

Friends my age talk about "letting go," about trusting that they've done their job as parents. But how do you let go when your child will always be vulnerable? How do you trust a world that still sees disability as inconvenience?

What the Research Doesn't Understand

Those studies about beneficial mortality awareness assume you have some control over your legacy. You can write letters to grandchildren, donate to causes you believe in, make peace with relationships. Your death becomes about you—your readiness, your spiritual state, your closure.

But when you're a parent of a disabled child, your death isn't about you at all. It's about them. And no amount of planning feels like enough because you're not just arranging for their physical care—you're trying to ensure they'll still feel loved.

The research talks about how confronting mortality helps people focus on what really matters. Well, here's what really matters: making sure your child will be safe and cherished when you're not there to do it yourself. And there's no amount of meditation or philosophical acceptance that makes that feel manageable.

The Conversation We're Having Now

So here we are, those of us navigating these waters together. We're not looking for abstract wisdom about mortality—we're looking for practical strategies for an impossible situation.

Maybe it helps to know we're not alone in this particular form of anticipatory grief. Maybe it helps to name what we're going through: not depression, not anxiety exactly, but the rational response to loving someone who will always need protecting in a world that doesn't always protect the vulnerable.

Some days I try to channel my worry into action—updating legal documents, building relationships with care providers, strengthening advocacy networks. Those are good days, when the fear feels productive.

Other days, I try to force myself back into the present moment. To notice how my daughter's face lights up when she gets a new American Girl doll on her birthday or Christmas. To appreciate her excitement when we plan a Disney trip or even just a shopping expedition to Target. To appreciate that we're both here today, both healthy enough to enjoy each other's company. To remember that this love—complicated and exhausting as it is—has been the greatest privilege of my life.

What 70 Teaches Us

Turning 70 with a disabled child teaches you things other parents don't learn. It teaches you that love doesn't diminish with age—it intensifies. It teaches you that mortality isn't a philosophical concept—it's a logistical nightmare wrapped in heartbreak.

But it also teaches you something profound about what it means to be human. To love someone this fiercely, this protectively, this eternally—maybe that's its own form of spiritual practice. Maybe the meditation isn't on our own mortality, but on the fierce tenderness that makes us want to live forever for someone else's sake.

I don't have answers. I'm not sure anyone does for our particular situation. But I know this: we're doing something extraordinary in an impossible circumstance. We're aging with grace while carrying ungraceful fears. We're facing our mortality while fighting to transcend it.

And maybe that's enough for today. Maybe tomorrow we'll figure out a little bit more.

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If you're reading this and recognizing yourself, know that your worry comes from love, and your love matters more than you can possibly know. The best way to get through it is the keep walking and find support. https://www.php.com/support-groups/  Join us for the Parents of Adult Children with Developmental Disabilities the third Monday of every month. In the meantime visit https://www.personcenteredplans.org/caregivers to learn about steps you can take to explore options for planning.