What I wish I’d known.

There are things I could not have been told at the start of the hardest years of my family's life. Not because no one knew them. But because some truths can only be earned.

I know that now. But I wish someone had tried anyway.

So here is what I would say to the version of me who was just beginning to understand what we were walking into. And to anyone else who is standing where I once stood.

You will not be able to love your way out of this. You will try. It will not be enough. This is not your failure.

I tried for years to outwork what was happening in our home with more love, more presence, more research, more appointments, more advocacy, more of everything. Love matters more than I can say. But it is not a medical intervention. It is not a diagnosis. It is not a system that will respond to your devotion by finally doing right by your child. Give the love anyway. Just stop measuring your failure by whether it fixes things it was never designed to fix.

The system was not built for your child. Advocating inside it anyway is not compliance. It is strategy.

This one took me the longest to make peace with. Working within structures that were never designed to serve your family can feel like surrender. It is not. It is the decision to use every available tool to get your child what they need, while holding onto the knowledge that the system itself needs to change. You can do both. You have to do both.

You will lose people. Friends who don't know what to say will say nothing. Let them go gently.

Not everyone will be able to show up for what you are living through. Some people will disappear. Some will say the wrong thing so many times that you will stop calling. This is a grief that does not get much airtime, the quiet loss of relationships that could not hold the weight of your reality. Let them go. The people who can stay will find a way to stay.

You are allowed to fall apart and hold it together at the same time. Both things are true.

I spent years believing these were contradictions. That I had to choose between being someone who was coping and someone who was not. It turns out you can be both, sometimes in the same hour. Falling apart does not mean you are failing. Holding it together does not mean you are fine. You are a person carrying something enormous, doing the best you can. Both things are allowed to be true.

Ask for help before you need it. By the time you need it, you will be too exhausted to ask clearly.

This is the one I most wish I had understood earlier. Waiting until crisis to reach for support means reaching when you have the least capacity to receive it. Therapy, community, a trusted friend who knows the whole story. Build those before the hardest moments arrive. They will not prevent the hard moments. But they will change what you have access to when you are inside them.

Hope and grief can live in the same week. They are not contradictions.

A medication finally working. A new diagnosis arriving. A school finally hearing you. A friendship dissolving. My child laughing in the kitchen. My child in a hospital bed. I used to think I had to choose which feeling was the real one. It took me years to understand: they are all real. They sit next to each other. Sometimes they sit on top of each other. If you are holding more than one truth this week, you are not contradicting yourself. You are being honest.

You are not the only one. The silence around caregiver experience is part of the problem.

The isolation of caregiving is real, but it is not inevitable. It is, in large part, the result of how little we talk about what it actually costs. Every time someone breaks that silence, it makes it easier for the next person to do the same. You are not the only one who has stood in a hospital hallway trying to hold your face together. You are not the only one who has gone straight from a crisis to a conference call. You are not alone in this. And the more we say so out loud, the less alone any of us have to be.

Fighting for Their Lives publishes June 16. These are some of the threads I pull on in that book. If you want these essays in your inbox, subscribe below.

💚 Jenn