My 21-year-old daughter and I were chatting the other day and one of her questions caught me off guard.
She asked if I had decided on an age when her brother would move somewhere outside of our home.
At first, I wasn’t quite sure how to answer.
The truth is, I don’t have a specific age in mind. What I do know is that I’d like any future living arrangements to be established before he turns 30. He’s 23 now, and my reasoning has less to do with his age and more to do with mine. I want to be able to check on him regularly. I want to know the people caring for him. I want to advocate for him, troubleshoot problems, and make adjustments while I’m still here to do so.
Because if there’s one thing every parent caregiver eventually has to confront, it’s this:
We won’t be here forever.
It’s a thought I hate entertaining.
Like most parents of children with disabilities, my worry is two-fold.
On one hand, I don’t want him to leave the safety, familiarity, and unconditional love of home. No one knows him the way we do. No one understands the subtle cues, the routines, the preferences, the triggers, and the countless little things that make his world work.
On the other hand, I know I can’t be on call 24 hours a day forever.
At some point, every caregiver reaches a crossroads. We either make plans for the future, or the future makes them for us.
None of us want to think about aging, illness, burnout, or death. But avoiding those realities doesn’t make them any less real.
So we plan.
Not because we’re ready.
Not because we want to.
Because we have to.
And honestly? It sucks.
It feels unfair that after spending decades fighting for services, advocating for inclusion, navigating systems, and ensuring our children have every opportunity possible, we are also expected to solve the question that keeps us awake at night:
Who will care for them when we’re gone?
The answer isn’t simple.
In many parts of the country, the options for alternate living arrangements are limited at best. The kind of environments we envision for our loved ones—the ones where people are known, valued, respected, engaged, and loved—often require years of planning, coordination, and financial resources.
I have plans for Skyler’s future. Every day, I’m taking steps to help make those plans a reality. But building a sustainable future doesn’t happen overnight.
And even if every piece falls perfectly into place, the worry remains.
Will his future caregivers genuinely care about him, or will he simply become another shift on a schedule?
If he’s upset or struggling, will someone take the time to understand why? Will they pull out the guidebook we’ve created and read the letter of intent that explains who he is beyond his diagnosis?
Will they seek to understand his communication instead of assuming he has nothing to say?
Will they laugh with him, tease him, celebrate his victories, and recognize the incredible person he is?
Will they see him the way we do?
I know there is no replacement for a parent caregiver.
No training program, certification, or handbook can replicate decades of love, instinct, and lived experience.
But what frightens me is the growing shortage of people choosing caregiving as a profession. The work is demanding. The pay is often inadequate. The turnover is high. Yet these are the very people who will someday become the bridge between our children and the futures we’re trying so hard to build.
As caregivers, we spend years worrying about our children’s futures.
The irony is that much of that worry isn’t about where they’ll live or what services they’ll receive.
It’s about whether they’ll be loved.
Whether someone will take the time to know them.
Whether someone will see the humanity, humor, intelligence, personality, and potential that we’ve seen all along.
Those fears may never completely disappear.
But perhaps that’s because love never does either.
The worry exists because the love exists.
And while I don’t know exactly when Skyler’s next chapter will begin, I do know this: every decision I make today is rooted in creating a future where he can thrive long after I’m gone.
Not because I’m ready to let go.
But because loving him means preparing for the day when I no longer have a choice.
