Yesterday, I found myself asking God a question I’ve asked Him more times than I can count:
What is Your plan for me?
I don’t ask because I doubt that He has one. In fact, I believe with my whole heart that He does.
I just don’t always understand it.
Yesterday, Skyler fell at his adult day program and badly dislocated his left knee. I picked him up and drove straight to the ER. After several hours there, we left convinced that he has once again torn his patellar tendon. We see orthopedics on Monday, but if our suspicions are right, his near future will consist of surgery and six weeks in a cast.
The part that makes my heart hurt the most is that this is almost exactly one year after he did essentially the same thing to his other knee. But last time, we had just moved to CO, and he wasn’t yet involved in equine therapy or any activities or programs. Now, he will have to take a lengthy hiatus from all of those things that get him out of the house in a routine he’s grown to love while Josh and I also lose our only respite from caregiving.
I’m frustrated for many reasons – that I wasn’t there when he fell, that programs designed to serve adults like Skyler often don’t have the staffing to provide the one-on-one support he truly needs, and that I can’t be everywhere, every minute, protecting him from every potential danger.
But mostly, I’m exhausted.
Skyler hasn’t been sleeping well the last few weeks and was awake until 4:30 in the morning the night before his accident, so I’ve been trying to function on roughly two hours of sleep a night for quite some time. As I drove to pick him up, I started crying.
Partially because I was angry and sad this was happening to him again, but mostly, I cried because sometimes this life is just really, really hard.
And in these moments, I’m reminded that I will be a full-time caregiver for the rest of my life.
Not until Skyler graduated high school.
Not until he became an adult.
Not until he finds a job.
Not until he moves into his own apartment.
Until I die.
There is no finish line or empty nesting waiting for me in this journey. And that realization feels heavy.
I think sometimes we see the main goal of caregiving as working ourselves out of the job by teaching our children enough skills so someday they won’t need us anymore.
But what happens when that’s not your child’s story?
What if they always need someone to ensure they’re safe, fed, understood and advocated for?
When independence doesn’t mean living independently, but instead means creating the most meaningful, connected and dignified life possible within the abilities God gave them?
Perhaps my mission isn’t to work myself out of being Skyler’s caregiver. Instead, it’s learning to be his caregiver without losing myself in the process.
Because God has already shown me that His plans often don’t look like the plans I’ve made.
But maybe faith isn’t believing that God will make the hard parts disappear. It is believing that He will continue to meet us in them.
While I don’t know what the next twenty years of caregiving will look like, I do know that I will continue to make plans, prepare, advocate, worry and because I’m me, try to control every variable in Skyler’s life.
And still, there will always be things I cannot control.
So today, as I sit next to Skyler on the couch alternating icing and bracing his knee, I’m trying to embrace this moment of forced stillness to ask God for guidance and what He wants me to learn from this?
Maybe the answer will come swiftly and maybe it won’t. But until it does, I’ll keep showing up and planning for a future where he is safe and cared for, even when I’m no longer here to do it myself.
And I’ll keep reminding myself that being his forever caregiver doesn’t mean God has asked me to carry this life alone. He’s always walking alongside me.
I may not understand the plan.
But I trust the One who does.
