Emerging From Under the Covers

Learning to Carry It Differently

For almost two weeks after I came home from Washington, DC, I shut out the world.

I wish I could tell you I came home energized and ready to build on everything we had accomplished.

I didn't.

I came home, crawled under the covers, and mostly stayed there.

I didn't want to talk to people. I didn't want to make plans. I didn't want to solve another problem or answer another question. I didn't even want to think very hard about what came next.

I needed quiet.

The strange thing is that the trip was wonderful.

Seventeen of us had gone to Washington to advocate around special education and deafblindness. We met with congressional staff. We talked about IDEA. We shared lived experience. We watched young adults advocate for themselves. We laughed—a lot. We squeezed into our big blue van and somehow got everyone where they needed to go. We opened doors I wasn't sure would open.

I came home incredibly proud.

And completely depleted.

Those two things can apparently exist at the same time.

People often tell me how strong I am. They tell me they don't know how I do everything I do. They see the meetings, the writing, the research, the advocacy, the speaking, the organizing.

I understand why.

I've gotten very good at making hard things look manageable.

What people don't usually see is what happens afterward.

They don't see me under the covers.

They don't see the times I stop answering texts because I simply don't have anything left.

They don't see how much energy it takes for me to hold other people's stories, navigate complicated systems, make sure everyone else is okay, and then somehow transition back into regular life.

And they certainly don't see all the ways my family has paid a price for my advocacy too.

That's difficult for me to write.

I've Been Writing About This for Years

This isn't actually a new realization.

I've been leaving myself breadcrumbs for a long time.

Years ago, I wrote about trying to find balance and learning to prioritize my children and myself. I wrote about how good I had become at making everything look easy while hiding how tired, scared, angry, and sad I sometimes was.

Later, I wrote about the complicated balance between caring for others and caring for myself. One of the hardest lessons of parenting children with disabilities was realizing that doing everything for them wasn't necessarily the same thing as helping them.

Sometimes love required me to step in.

Sometimes love required me to step back.

And then there is Cole's story, and Hunter's.

I've written openly about the reality that while I was consumed by diagnoses, appointments, services, and advocacy, one of my children was carrying things quietly.

I can't rewrite those years.

I can pay attention to what they are teaching me now.

Even a couple of years ago, after an Usher syndrome conference, I wrote about the emotional toll of showing up for a community I love. I reached a point when I simply couldn't do anymore. I went upstairs and curled into a fetal position on the bed.

Apparently my body has been trying to teach me this lesson for quite some time.

I just keep needing the refresher course.

If I Don't Do It, Who Will?

I know part of what drives me.

When something matters and I know I can help, my instinct is to help.

If I have knowledge that might make something better, I want to share it.

If someone needs support, I want to support them.

If a system isn't working, I want to fix it.

If someone isn't being heard, I want to make sure they are.

It sounds admirable when I write it that way.

And some of it is.

But there's another side.

Caring became responsibility.

Responsibility became urgency.

And somewhere along the way, urgency became:

If I can do something, shouldn't I?

And eventually:

If I don't do it, who will?

That is an exhausting way to live.

No one ever told me I had to carry all of this.

I decided that.

That's been a surprisingly emotional realization.

Because if I decided it, I can decide differently.

What DC Showed Me

Something was different about Washington this time.

I wasn't the only voice.

In fact, some of the most powerful voices weren't mine at all.

I watched young adults tell their own stories. I watched parents speak from experiences different from mine. I watched professionals bring expertise I don't have. I watched people listen to one another.

I watched people who had barely known one another before the trip become connected.

And afterward, I had a deeply vulnerable conversation with another parent who was struggling with many of the same things I was.

The exhaustion.

The loneliness.

The wondering whether any of it was enough.

The question of how to keep doing meaningful work without losing yourself and the people you love along the way.

I found myself telling them something I apparently needed to hear too:

Advocacy doesn't always have to be big.

Maybe it isn't always Capitol Hill.

Maybe it isn't a keynote or a national initiative or a research paper.

Maybe sometimes advocacy is telling your story.

Maybe it's talking to someone at a coffee shop who has never thought about disability the way you have.

Maybe it's making an introduction.

Maybe it's helping someone else find their voice.

Maybe it's sitting beside another human being who is struggling and saying:

I understand.

Maybe it's choosing yourself.

That counts too.

Beyond the Divide

As I've been sitting with all of this, I keep coming back to my own book, Beyond the Divide - The Stories that Bring us Together.

The irony isn't lost on me.

I spent an entire book writing about curiosity, stories, listening, lived experience, belonging, and the things that happen when we stop assuming we understand another person and become willing to really see them.

One of the ideas I return to throughout the book is that every person is carrying a story we cannot fully see.

I was thinking about other people when I wrote that.

I'm realizing I'm one of those people too.

The woman in the photographs from Washington is strong.

She is capable.

She is passionate.

She is proud of what that group accomplished.

That's all true.

But it isn't the whole story.

The whole story includes the woman who came home and shut out the world for two weeks.

Both are me.

And perhaps that's part of what Beyond the Divide has been trying to teach me all along.

Understanding another human being requires making room for complexity.

Maybe understanding myself does too.

I don't have to choose between being strong and being tired.

I don't have to choose between caring deeply and needing space.

I don't have to choose between advocacy and myself.

Carrying It Differently

For a long time, I thought balance meant taking care of myself enough that I could get back to taking care of everyone else.

Rest.

Recover.

Get strong again.

Go back in.

I'm not sure that's balance anymore.

Maybe balance means changing the way I do the work in the first place.

I've already learned some version of this lesson as a mother.

My children needed me to stop doing everything for them. They needed room to develop their own voices, make their own choices, stumble, grow, and become adults.

Stepping back wasn't abandoning them.

It was trusting them.

Maybe I need to trust other people with advocacy too.

I can open a door without walking through every door myself.

I can help create a table without needing to sit at the head of it.

I can tell my story without being responsible for what everyone does after hearing it.

I can connect people.

I can write.

I can listen.

I can sit with someone who needs to know they aren't alone.

I can choose the big thing occasionally without making everything a big thing.

And I can go home.

I can choose my family.

I can choose myself.

I am still learning this.

There is still a voice inside me that asks, But if you can help, shouldn't you?

Sometimes the answer will be yes.

But it doesn't always have to be.

No one told me I had to carry it all.

I decided that.

And I can decide differently.

I'm not giving up advocacy.

I'm trying to stop giving myself up to do it.

And strangely, that realization doesn't make me sad anymore.

It makes me curious.

What becomes possible when I stop measuring my commitment by how much I can carry?

What happens when there is more room for my family, my relationships, my writing, my creativity, my faith, my curiosity—and simply being present in my own life?

What might advocacy look like when it comes from a whole person instead of an exhausted one?

I don't know yet.

And maybe that's the point.

For much of my life, growth has meant doing more, learning more, helping more, becoming stronger, pushing a little farther.

I'm interested in a different kind of growth now.

The kind that comes from listening to myself as carefully as I've learned to listen to others.

The kind that allows me to be deeply committed without being consumed.

The kind that makes room for joy alongside purpose, rest alongside action, and my own life alongside the work I care about.

I don't think this next chapter is about becoming less of an advocate.

I think it's about becoming more whole.

There will still be moments when I step forward. There will still be things worth fighting for and doors worth opening. I hope I never stop caring deeply.

But there will also be moments when I step back and let someone else lead.

Moments when telling a story is enough.

Moments when sitting beside someone is enough.

Moments when choosing my family is enough.

Moments when choosing myself is enough.

And maybe you know this feeling too.

Maybe you're the one everyone calls strong.

Maybe you're the one people turn to because you'll know what to do.

Maybe you've become so accustomed to carrying the extra thing, solving the problem, caring for the person, fighting the battle, or holding everything together that you don't even remember deciding it was your responsibility.

Maybe no one asked you to carry all of it either.

One of the things I've learned through writing Beyond the Divide is how much can happen when we allow ourselves to truly see one another.

We rarely know everything another person is carrying.

But we can notice.

We can listen.

We can sit beside them.

We can remind them they aren't alone.

And perhaps instead of always helping one another become strong enough to carry more, we can help one another realize we don't have to.

So maybe these are the questions I want to carry into this next chapter:

What is actually mine to carry?

What can I share?

What can I put down?

Who can walk beside me?

And maybe most importantly:

What do I want to make room for?

I don't know all of the answers yet.

But for the first time in a long time, I'm excited to find out.

I'm not walking away.

I'm making room.

I'm learning to carry it differently.

And for anyone who has ever been the strong one and then found themselves under the covers, wondering how they were going to get out of bed and go at it again:

I see you.

You don't have to explain why you're tired.

You don't have to prove how much you care by how much you carry.

Maybe you don't have to get up and go at it again in quite the same way.

Maybe you can carry it differently too.

I'm sending you love.