I Bought a Domain Name Because I Couldn’t Sleep

I couldn’t sleep.

Not because I wasn’t exhausted. I was.

I had spent nearly two years living on high alert, always waiting for the next phone call, the next crisis, the next emergency room, the next treatment meeting, the next impossible decision. Every day felt like an argument for Jack’s life. I was constantly making the case that he was worthy of care, worthy of treatment, worthy of one more chance. Worthy of being seen as a child instead of a diagnosis, a liability, or a lost cause.

I don’t think I realized how much adrenaline had been carrying me until it suddenly had nowhere left to go.

When Jack died, the fight disappeared. Not because I stopped believing he deserved to live, but because there was no longer anyone to fight for. Or at least, that’s how it felt.

For months afterward, I barely remember what I actually did. Grief has a way of dissolving time. I remember sleeping on the couch because climbing the stairs to bed felt like more effort than I could summon. I remember the indentation my body left in the cushions. Day after day, week after week, I occupied the same small hollow until it seemed as though the couch had molded itself around my grief.

Looking back, I realize I wasn’t simply mourning. I was collapsing after two years of standing watch.

The casseroles had stopped coming. The phone had grown quiet. Everyone assumes there comes a point when life begins again, but that’s not how it felt. I felt fury and failure, and rage at the fact of helplessness itself. I replayed every decision, every treatment plan, every denial, every moment I wondered whether I should have pushed harder or chosen differently. My body was still braced for a battle that had already ended.

And underneath all of it was a terrifying thought: the future felt too long to survive.

What makes grief so bewildering is that it doesn’t make room by taking love away. It asks your heart to hold even more. While I was drowning in the loss of Jack and, only months later, Marleigh, I also felt swollen with love for Virginia Grace. She was still here. She still needed me. The part of me that had spent years protecting one child couldn’t simply disappear because I had lost another.

One night, lying awake in the dark, my mind began racing with the kind of electricity that makes sleep impossible. It felt as though I could have run a marathon on cortisol alone. And then, beneath the exhaustion, beneath the grief, beneath the helplessness, I recognized something I hadn’t felt in months.

It wasn’t hope. It was defiance.

The fight hadn’t died with Jack. It had simply been waiting for somewhere else to go.

For months, I had been looking for somewhere to put all of that energy. I thought I was looking for a support group. What I eventually realized was that I wasn’t looking for comfort. I was looking for somewhere to put my questions and, perhaps, one thing I could still do.

So I opened my laptop.

Almost as a joke, I typed fiercemamas.org.

It was available.

Looking back, people sometimes assume that buying the domain name was the beginning of a plan. It wasn’t. It was simply the smallest action I could find.

I couldn’t bring Jack back. I couldn’t save Marleigh. I couldn’t rebuild the treatment system before morning. But I could buy a domain name, so I did. I clung to it because it was action.

The truth is, I didn’t choose the name. I stumbled into it, and then I realized it had been waiting for me all along.

Someone once told me I wasn’t really Jack’s mama.

I understood what they meant. They meant biology.

But over the years, I’ve realized we were speaking different languages. Mother is a biological relationship. Mama is a practice.

Mama is the doing.

Mama is the sleepless nights. Mama is learning medication schedules by heart. Mama is sitting through another IEP meeting. Mama is arguing with the insurance company one more time. Mama is waiting in emergency rooms. Mama is showing up in court. Mama is making impossible decisions with incomplete information. Mama is burying a child. Mama is surviving long enough to tell the truth about it.

I was never trying to claim a biology that wasn’t mine. I was claiming the work.

The other half of the name came from that night, from realizing that love sometimes reaches a point where kindness alone is no longer enough.

Fierce is helplessness turned into action.

Not vengeance. Not cruelty. Not the satisfaction of being right. It is protection, attention, and the refusal to abandon.

I’ve thought about Steel Magnolias more than once this year. There’s that unforgettable scene at Shelby’s graveside when M’Lynn finally breaks open. She screams the question every grieving parent eventually asks: “Why?”

The women around her don’t try to calm her down. They don’t rush to explain. They don’t offer platitudes. They make room, because they know that if she doesn’t get to rage, she’ll shatter.

I’ve come to think that’s one of the holiest things people can do for one another: witness the unbearable without trying to make it more comfortable. Stay.

Over the past year, I’ve realized something else. Fierce is only half the story. The organization may have been born from productive rage, but it can’t survive on rage alone.

Rage can expose injustice. It can refuse silence. It can point us toward the places where systems have failed. But it cannot, by itself, sustain a life. That requires something else: wonder, beauty, laughter around a table, the quiet miracle of someone saying, “Me too,” and the wonderful absurdity of making art from denial letters.

Come make something so unexpectedly beautiful that, for a few hours, the paperwork loses its authority over you.

I’ve learned that the opposite of despair isn’t optimism. It’s creation. It’s paying attention. It’s refusing to let bureaucracy have the final aesthetic word.

People sometimes tell me they don’t know how I’ve lived the parenting life I’ve lived. I always tell them the same thing: I just try to do the next right thing.

Buying that domain name was one of those next right things.

I had no strategic plan. No organizational chart. No idea that Jack’s Last Mile would eventually lead to Gather, or that questions about navigating care would evolve into conversations about provider transparency, implementation science, judicial elections, or mayoral policy. I couldn’t have imagined that art, research, advocacy, and storytelling would all turn out to be different dialects of the same language.

I wasn’t building programs. I was following questions. The questions changed, the people changed them, and in the process, the work changed me.

I closed my laptop sometime before dawn.

Outside, nothing had changed. Jack was still gone. Marleigh was still gone. The systems that had failed our family were still exactly as I had left them a few hours earlier.

But something inside me had shifted.

I wasn’t wandering anymore.

I had a direction.

Looking back, I don’t think Fierce Mamas began because I had an idea. It began because I needed somewhere for my love to go.

I just didn’t know yet how many people had been carrying that same unbearable love all along.