How to Admit You’re Not Okay (And Other Lessons from Disability Parenting)

I always wanted to be a mother, like since 2nd grade.

But I was told my whole life I wouldn’t be able to have a baby due to my Type One Diabetes.

And so when I got pregnant, I felt like finally……this was going to be my redemption story.

After years of turmoil managing a chronic disease.

After years of hospital stays and doctors appointments.

Millions of shots and blood glucose checks.

Years of being told a baby wasn’t in the cards for me and going full term would be near impossible.

I did it.

And then suddenly “What happens if I can’t have a baby?” turned into “Oh my god, our baby has a disability.”

“What happens if I can’t have a baby?” turned into “Oh my god, our baby has a disability.”

I felt cheated. I felt like I’d had my hopes, dreams, and years of silent prayers ripped out from under me. As I sat in the NICU for 10 weeks, watching other families leaving with their now healthy babies, I felt like God was handing out MY dreams to other people. Why did they get to go have the fairy tale? Why did they get the healthy baby? Why did we have to suffer with uncertainty, fear, anger, disability, chronic conditions, and grief? How come their baby would be able to walk and ours wouldn’t?

For the longest time, I held the hurt close to my chest, only sharing with James and a few friends. But even then, I remained guarded, limiting how much I shared and how frequently. When your life becomes consumed by grief, you fear your darkness will somehow overtake the otherwise joyful lives of others.

Mostly though, I didn’t know how to talk about the pain because I didn’t know how to process it alone. I learned how to trick myself into hope, to force optimism as a facade. This often looked like channeling despair into anger against the medical system and resolving that I would somehow on my own figure out a way for Callie to walk. I buried myself in books and journal studies, spent hours reading others’ stories on Reddit threads. A disability diagnosis just didn’t mean she wouldn’t be able to walk—we also weren’t prepared for the the emotional toll it took on our family. The grief, sadness, rage, and despair was at times just as grueling as the physical pain of tests, procedures, and navigating a world not built for people like Callie. The grief consumed body, mind, and soul.

So I started writing about it. And going to therapy. There is something about walking through grief in such a public way. It feels both liberating and terrifying. There is no turning back once you name your experiences, once you acknowledge your pain and the existence of grief. Being honest with the world means confronting the truth head on for yourself, which, once out in the open, becomes undeniable. There’s no take backsies. The hurt now lives outside your body, it becomes it’s own entity. The narrative you so desperately wished to ignore slips through your fingers and becomes its own kind of beast. The pain just is. This is where you’re at. This is it.

After years of being a parent to a disabled child, I have learned a few things: First, you are never okay, even if you trick yourself into thinking otherwise. You can be strong while simultaneously struggling. Two things can be true at the same time. To struggle is to survive, and at times, that required every ounce of strength I had.

You can be strong while simultaneously struggling.

I’ve also learned that asking for help feels hard because it is hard. Modern societies have long encouraged us to figure things out for ourselves—I can’t tell you how many times I heard the expression “guess you better figure it out” as a child. We have veered away from a “village” raising a child to raising your child in a silo. There is a connotation of being weak if you ask for help.

Asking for help though has saved me so many times in the past few years. I’ve had to teach myself how to pick up the phone and call a friend despite the internal narratives telling me they will think I’m a burden. Help has also looked like finding safe spaces and people to process the pain—therapists, friends, strangers on the internet who understand and are farther along the path than I am. At some point, in the darkest period, I asked for a prescription to manage the anxiety. I’ll never forget that afternoon, sitting on the side of our bed, the little white pill in my palm. I was crying, my husband lost because he couldn’t help me. I so badly wanted to feel better but despised myself for not being strong enough to pull through alone.

In some ways, when I can step back and see the bigger picture, which I’ll admit took me some time, I recognize how beautiful, complex, and unique this all is. Each of us has our struggles, valleys through which we must walk, some of us just have to walk for many miles. But it’s when we are able to admit the truth—that we are not okay—that we learn how to keep living amidst the pain. This has been the hardest lesson for me: waking every morning along side my grief and still getting out of bed. Disability isn’t a season of my life but a daily companion. I have had to learn to live alongside it, just like I have had to learn how to rely on my community and loved ones to carry me when I can’t carry myself.

I don’t know how our story will end. There are beautiful, amazing, wonderful days. Full of magic and laughter. Where it feels like the Universe has our backs. And there are also days where everything feels raw and unstable and entirely outside of my control. What I do know is that learning to admit I’m not okay has helped. It doesn’t take away the grief, but it allows me to breathe a bit easier.

When we put our authentic truth out into the universe, we lighten our loads, even if only by a little. Our shoulders can relax, our jaw can unclench, and the tears that have needed to fall finally do. We are honest (maybe for the very first time in a while). Maybe it doesn’t change our circumstances. Maybe it does. Maybe it doesn’t feel like it’s helpful. Maybe it’s super helpful.

But the truth is out. That has to count for something, I hope.