Wrestling with getting paid for taking care of a tube

Some days I look at our life—six feeds a day, alarms set like clockwork, tubes and syringes and supplies always within reach—and I feel this heaviness settle in my bones, not quite defeat, not quite despair, but a deep, lingering exhaustion that lives somewhere between love and burden.

It has been hard, harder than I ever thought motherhood could be, but somehow God keeps pulling us through, steadying our steps in ways only He can. I know He has our backs through all of this, even when the days feel long and the nights feel even longer, even when I’m running on fumes and prayer, even when I’m leaning against the kitchen counter at 7 a.m. trying to convince myself I have the strength for one more feeding, one more pump session, one more round of holding everything together. Tomorrow we find out if I’ll actually be paid to take care of his tube—a process that started all the way back in July, and somehow now it’s November, months of paperwork and appointments and phone calls and waiting on people who don’t understand the urgency of a mother’s life.

It feels like the longest “hurry up and wait” season I’ve ever lived through. I keep thinking about how much time this has taken, how many hours of work I’ve lost because I needed to be here, hands-on, heart-on, caring for him the way only a mother can. And still, even with all of that, I feel this strange guilt creeping in when I imagine being paid.

I feel greedy, or unworthy somehow, like I’m being compensated for loving my own child. Because the truth is, I would do all of it for free. I have been doing all of it for free. I love him—deeply, fiercely, without question—and caring for him isn’t a job in my heart, it’s simply what mothers do when their babies need them. It’s instinct. It’s devotion. It’s the kind of love that gets you out of bed when your body is begging to lie down. But everyone keeps telling me that technically, legally, realistically, someone else could come in and do this for us. That he meets the qualifications because this level of care is beyond typical, beyond what is expected, beyond the simplicity of a bottle or a spoon or a nap.

That if I weren’t doing it, someone else—some professional, some stranger—would be paid to step into our home and tend to what I already do every day. And when I think about it like that, when I picture someone else in my place, holding his little face in their hands, checking his tube, programming the pump, keeping track of the timing, the flushes, the meds, all the things that have become second nature to me… I realize it isn’t greed. It isn’t selfishness. It’s simply acknowledging the truth: this is work. Work of the heart, yes, but still real, tangible work—demanding, constant, consuming. The kind of work that doesn’t give you weekends or lunch breaks or the luxury of stepping away. And on top of caring for him, there are still the other kids, still lunches and laundry and school drop-offs and sibling squabbles and tiny shoes that somehow always go missing.

There’s still the weight of growing another little life inside me, the fatigue, the aches, the stretching, the miracle and the strain of pregnancy layered onto everything else. It’s a full-time job stacked on top of a full-time job stacked on top of another full-time job. No wonder I’m tired. No wonder my spirit feels stretched thin. And yet, God keeps meeting me here. In the middle of the chaos, in the feeding schedules, in the appointments, in the paperwork, in the tears I pretend not to cry. He keeps whispering reminders that I’m not failing, that I’m not greedy, that He sees every unseen thing I do.

He reminds me that provision isn’t greed—it’s grace. That accepting help isn’t selfish—it’s stewardship. That He equips us not just spiritually but practically, financially, emotionally. That sometimes His blessings come disguised as things we’re almost too ashamed to accept. And maybe this is one of those times. Maybe this provision is His way of saying, You don’t have to carry all of this alone. Maybe He’s reminding me that motherhood was never meant to be endured by sheer willpower, that sacrifice doesn’t make me undeserving of support, that caring for a child with special needs is holy work—and holy work is still work.

I’m learning to release the guilt, to unclench my fists, to let provision be provision. Because the truth is, this could help. It could give our family space to breathe, to recover financially from the hours I’ve had to cut back, to step into a new season with a little less strain. And maybe it will all be worth it—the months of waiting, the hoops we’ve jumped through, the emotions I’ve had to untangle. Maybe tomorrow will bring a little relief.

Maybe it will remind me that God has been weaving something good behind the scenes all along. And even if the answer isn’t what I expect, even if we have to wait again, I know we’re still held. I know He hasn’t brought us this far to drop us now. I know that every feeding, every sacrifice, every overwhelming moment matters to Him. And I know that even in the hardest parts, even in the moments when I question myself, He is carrying us—me, my son, our whole wildly beautiful, exhausting family—one day, one feed, one breath at a time.