People start calling you inspiring.

And I know they mean it kindly. I do. When someone tells me they’re proud of me, or that watching me keep going gives them hope, that means something to me.

But sometimes?

I don’t want to be inspirational.

Sometimes I just want to b…

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I didn’t realize I was doing it.

I just kept telling myself the same story.

Maybe after my next infusion.

Maybe after this flare settles down.

Maybe after physical therapy.

Maybe after I finally feel like myself again.

I wasn’t just hoping to feel better.

I wa…

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Now it feels like preparing for a small expedition.

Before I even think about swimsuits or sunscreen, I’m counting medications. Making sure they’re packed where I can reach them. Thinking about what happens if I get too hot. Wondering where I’ll be able to sit down when my legs decide they’ve had enough.

People see the pictures.

They don’t see the planning.

They don’t see me checking the weather because heat affects my body differently now. They don’t see me wondering how much walking there will be, or quietly calculating how many “good hours” I might have before I need to rest.

Every vacation now comes with backup plans.

If I can’t make it through a whole day at the theme park, what’s our plan?

If I wake up exhausted, can we rearrange things?

If I need an hour in the hotel room while everyone else swims, will I feel guilty?

These aren’t questions I used to ask.

Now they’re part of every trip.

And then there are the kids.

I want them to remember the excitement of water slides, roller coasters, late-night ice cream, and laughing until they’re exhausted.

I don’t want them remembering that Mom had to sit down every twenty minutes.

So I become a planner.

I map out our days. I build in breaks. I look for shaded benches before I even know if I’ll need one. I pack snacks because low energy is easier to manage when nobody’s hungry. I bring more than we probably need because it’s easier than wishing I had packed one more thing.

Sometimes I wonder if anyone notices how much work goes into making things look effortless.

Maybe that’s motherhood.

Maybe that’s chronic illness.

Maybe it’s both.

The truth is, vacations aren’t easier because you have MS.

They’re harder.

They’re more tiring.

They require more thought.

Sometimes they require more courage.

Because there’s always a little voice asking, “What if your body doesn’t cooperate?”

But I’ve learned something over the past few years.

Waiting until my body is perfect means waiting forever.

So we go anyway.

I make the plans.

I pack the medications.

I bring the cooling towel.

I schedule rest when I can.

I let myself sit down without apologizing.

And I remind myself that my kids don’t need a perfect mom to make perfect memories.

They just need me.

Maybe this vacation won’t look like the vacations I took before MS.

Maybe I’ll need more breaks.

Maybe I’ll end every day exhausted.

Maybe I’ll wake up sore.

But if my kids come home talking about the Ferris wheel, the water slides, the roller coasters, and all the little moments we shared together, then I know I’ll remember something else.

I didn’t let MS decide whether we made memories.

It just changed how we made them.

And honestly?

That’s still a pretty beautiful vacation.

I think it’s what it teaches your brain to expect.

On Monday, a storm tore through our backyard.

A massive tree came down, missing our pool by what felt like inches. Our fence was destroyed. The trampoline didn’t survive. We lost power for days. Everything in our refrigerator and freezer had to be thrown away. We found ourselves charging our phones, iPads, and anything else with a battery from the Tesla because it was the only source of power we had.

On paper, those are just things.

But they weren’t just things to us.

The trampoline wasn’t just a trampoline. It was one of Livy’s biggest sources of regulation—a place where she could jump, reset, and find calm when the world felt overwhelming.

The fence wasn’t just a fence.

Liv elopes, so without it, she couldn’t safely play in the backyard. Charlie couldn’t run free chasing squirrels like he does every morning. Overnight, our backyard stopped feeling like the safe place it had always been.

Then, almost as if the week wasn’t heavy enough, my MS flared.

The trigeminal neuralgia came roaring back—that lightning-bolt kind of pain that can make talking, eating, brushing your teeth, or even feeling the breeze against your face unbearable.

By the time the power came back on, I realized something.

The hardest part wasn’t the storm.

It was how quickly my mind started looking for the next bad thing.

I don’t think that’s pessimism.

I think it’s survival.

People are incredibly resilient. We survive things we never imagined we’d survive. But what nobody talks about is what happens when life keeps piling things on before you’ve had a chance to set the last thing down.

You don’t just carry the events themselves.

You carry what they teach you.

After enough difficult seasons, your nervous system starts preparing for the next blow before it even comes.

Your phone rings, and your stomach drops.

Your doctor leaves a voicemail, and you immediately assume it’s bad news.

A weather alert pops up on your phone, and you wonder what else is about to happen.

When something finally goes right, instead of relaxing, you find yourself waiting for the catch.

You stop asking, What if everything works out?

You start asking, Okay… what’s next?

This week wasn’t heavy because of one storm.

It was heavy because it landed on top of everything else.

In 2024, a severe MS relapse changed my life. A fall left me with a broken hip, and in 2025 I spent months fighting to learn how to walk again.

Since then, there have been hospital stays, pneumonia, specialist appointments, unexpected findings like several small splenic artery aneurysms, more MS flares, and now trigeminal neuralgia.

The storm wasn’t the beginning.

It was simply one more thing to carry.

People tell me all the time, “You’re so strong.”

I know they mean it as a compliment.

But strength is a funny thing.

Most of us aren’t strong because we want to be.

We’re strong because life keeps handing us things we don’t get to refuse.

The truth is, I don’t always feel strong.

This week, I felt overwhelmed.

I felt exhausted.

I felt sad.

I disappeared from here because I didn’t have the words.

Depression has a way of doing that. It tells you to stay quiet. It tells you no one noticed you were gone. It tells you you’ll write again when you feel better.

But I’ve learned that waiting until everything is okay usually means waiting forever.

So here I am.

Writing anyway.

Maybe your hard season doesn’t look like mine.

Maybe yours is grief.

Maybe it’s caregiving.

Maybe it’s financial stress.

Maybe it’s anxiety.

Maybe it’s a child who needs more support than the world seems willing to give.

Or maybe you’re carrying something you’ve never even said out loud.

Whatever it is…

I hope you know you’re not weak because it feels heavy.

It’s heavy because it is heavy.

The mental weight of bad luck isn’t just the bad things that happen.

It’s the way they quietly teach you to brace for the next one.

I’m trying to unlearn that.

I’m trying to believe that not every phone call brings bad news.

Not every storm changes everything.

Not every quiet season means something terrible is coming.

Some days I believe that more than others.

Today, I believe it just enough to write again.

And for now, that’s enough.

It’s good to be back.

I tell you when I have an appointment.

I tell you when I get test results.

I post pictures of my Dunkin at sunrise, my garden, Charlie being ridiculous, and the little moments that remind me life is still beautiful.

I make jokes because, honestly, if I didn’t laugh, I’d probably cry.

All of …

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The birds were just starting to wake up, but the fireflies were still hanging on.

It felt like they were handing the morning over.

That tiny moment stayed with me.

Because for a long time, I haven’t really felt like me.

Chronic illness has a way of stealing pieces of your identity so slowly that you don’t notice they’re gone until one day you realize you don’t recognize yourself anymore.

You stop making plans because your body might cancel them.

You stop saying yes because you’re tired of disappointing people.

You stop creating because surviving takes every ounce of energy you have.

Before you know it, you’re not living.

You’re managing.

The last few months have been heavy.

There have been doctor’s appointments, scans, medications, uncertainty, fear, and the constant mental gymnastics of trying to figure out what symptom belongs to what diagnosis.

There have been days when simply taking a shower felt like an accomplishment.

Days when getting dressed deserved a trophy.

Days when I wondered if this was just who I was now.

But something has shifted.

It’s not dramatic.

I’m not suddenly “better.”

I still have MS.

I still get exhausted.

I still don’t know what every test result means or what tomorrow will look like.

But I’ve noticed little things.

I’ve been outside more.

I’ve been laughing more.

I’ve been thinking about writing again instead of feeling guilty that I wasn’t.

I’ve been planning projects.

Watering my garden.

Dreaming.

That might not sound like much.

To someone living with a chronic illness, it’s everything.

Healing isn’t always your MRI looking better.

Sometimes healing is wanting to make coffee before the sun comes up because you want to watch the day begin.

Sometimes healing is laughing at yourself after losing your phone while it’s in your hand.

Sometimes healing is opening your laptop because, for the first time in a while, the words are finally there.

I’ve spent so much time waiting to feel like the “old me.”

Maybe that’s the wrong goal.

Maybe there isn’t an old me to go back to.

Maybe there’s just this version.

The one who’s been through hell.

The one who’s learned compassion in waiting rooms.

The one who knows that getting out of bed can be an act of courage.

The one who laughs anyway.

The one who still finds beauty in fireflies.

Maybe she’s enough.

Actually…

I think she’s becoming someone I really like.

So if you’ve been feeling like you’ve disappeared inside your illness, your grief, your anxiety, your diagnosis, or just life itself…

I hope you know something.

You don’t have to become the person you were before.

You’re allowed to become someone new.

And maybe…

Just maybe…

They’re even stronger than the person you lost.

The fireflies were still dancing across the yard, even as the sky started to soften around the edges. The birds were beginning their morning chorus, but the night hadn’t completely let go yet. For a few quiet minutes, both existed at the same time.

I don’t know why that moment stuck with me, but maybe it’s because that’s exactly where I’ve been lately.

Not quite in the darkness.

Not quite back in the light.

The last few weeks have been filled with appointments, tests, waiting, and all the uncertainty that comes with living in a body that likes to surprise me. When you’re carrying that much, it’s amazing how quickly the things you love can fall silent.

For me, that was writing.

It wasn’t that I didn’t have anything to say. If anything, I had too much to say. I just didn’t have the energy to untangle it into words.

I missed this.

I missed sitting down with a cup of coffee and letting my thoughts wander onto the page. I missed the conversations that happen here, where I can be honest about the beautiful parts of life and the hard ones, sometimes in the very same paragraph.

This morning reminded me that healing isn’t always loud.

Sometimes healing looks like noticing the birds again.

Sometimes it looks like making plans instead of just getting through the day.

Sometimes it looks like opening a blank page and realizing you’re ready to write.

I’m not promising I’ll have everything figured out. Honestly, I don’t think that’s the point.

The point is that I’m here.

Coffee in hand.

Watching the fireflies disappear as the sun comes up.

Ready to begin again.

Not in the dramatic, movie kind of way. I have an incredible husband who’s truly my best friend. I have three amazing kids who keep my heart and my house full. Charlie follows me everywhere, and somehow we even ended up with a bearded dragon.

From the outside, it probably doesn’t look lonely at all.

But loneliness doesn’t always look like empty rooms or quiet nights. Sometimes it shows up in the smallest, most unexpected moments—like sitting in a hospital bed with pneumonia and realizing there isn’t really anyone to text.

You know that person you send a quick, “Well… this sucks,” message to? The friend who checks in without being asked? The one who just knows when something’s off?

I realized I didn’t have one.

And that realization didn’t come with anger or blame. It came with a quiet kind of sadness—the kind that settles in slowly and makes you pause.

I think motherhood quietly changed my friendships. It wasn’t sudden or dramatic. It was gradual. Schedules filled up. Priorities shifted. Conversations became shorter, less frequent. Then chronic illness changed things even more. My world got smaller. My energy became limited. Showing up became harder.

Life got busy. I got sick. People moved on.

No one did anything wrong—it just happened.

That’s the part that’s hardest to explain. There’s no clear moment where everything changed. No argument. No falling out. Just distance that grew over time until one day, you realize the connections you once relied on aren’t there in the same way anymore.

And yet, my life is still full. It’s full of love, laughter, chaos, and meaning. It’s full of people who matter deeply to me.

But there’s still this quiet space where friendship used to live.

I’m not writing this because I want anyone to feel sorry for me. I’m writing it because I have a feeling I’m not the only person who has looked around at a beautiful life and still wished they had one more friend to call.

I think a lot of us carry this kind of loneliness quietly. We assume everyone else has their people, their group chats, their go-to friends. We don’t talk about the in-between space—the place where life is good, but something still feels missing.

Maybe that’s why this place means so much to me.

Because sometimes, when I don’t have friends to text, I end up writing here instead. And in doing that, I’m reminded that connection doesn’t always look the way we expect it to.

Sometimes it looks like sharing a piece of your heart and hoping someone out there understands.

And maybe, just maybe, someone does.

The MRI.

The steroids.

The hospital stay.

The wheelchair.

Those things are real.

But they’re only part of the story.

No one tells you what happens after.

No one tells you that your children will see you at your weakest and wonder if Mom is ever coming home.

No one tells you that your spouse stops being “just” your spouse for a while and becomes your caregiver, your advocate, your chauffeur, your cheerleader, and the person trying to hold your family together while quietly carrying their own fear.

No one tells you that your house can suddenly feel like it wasn’t built for you anymore. A bathroom you’ve used every day becomes another obstacle. A flight of stairs becomes something you have to plan for.

No one tells you how much paperwork comes with being sick. Insurance. Disability. Medical bills. Phone calls. Forms. Waiting. Appealing. Waiting some more.

No one tells you how lonely recovery can feel.

People celebrate when you’re discharged from the hospital, but that’s often when the hardest work begins. Recovery isn’t a finish line. It’s waking up every day and trying again.

No one tells you that you’ll grieve the version of yourself who could do things without thinking. The woman who didn’t have to calculate every ounce of energy before saying yes to something.

No one tells you how much guilt you’ll carry.

Guilt that your spouse has to do more.

Guilt that your kids have to grow up a little faster.

Guilt that people you love worry about you.

And then, little by little, something changes.

One day you stand a little longer.

One day you laugh without thinking about your illness.

One day you realize you’ve done something that seemed impossible a few months ago.

Recovery isn’t one big moment.

It’s hundreds of tiny moments that slowly add up until one day you look back and realize you’ve traveled farther than you ever thought you would.

I still live with MS.

I still have hard days.

But if there’s one thing I wish every newly diagnosed person knew, it’s this:

No one can tell you exactly what your recovery will look like.

And that’s where hope lives.

Instead, it felt like the beginning of another mountain.

When I left rehab, I came home in a wheelchair.

Even getting into my house felt impossible.

There was a stoop to get in and then five steps up to the main level.

Five stairs.

Five stairs I had walked up and down thousands of times without ever giving…

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And before anyone panics because they’ve seen my pictures, let me be clear: I’m not missing my front teeth. I still smile in photos. Most people would never know there was a problem just by looking at me.

But behind that smile is a different story.

Over the years, I’ve lost several teeth in the back of my mouth. I’ve had fillings, repairs, and more dental work than I care to count. Teeth have cracked and broken when they shouldn’t have. Every time I go to the dentist, I find myself wondering what they’re going to tell me next.

The part that gets me is that I don’t know why.

I take care of myself.

I’ve lost weight. I eat pretty clean. I brush my teeth. I do all the things we’re told we’re supposed to do.

So when another tooth breaks, it’s hard not to ask what happened.

Was it MS?

Was it years of medications?

Was it steroids?

Dry mouth?

Inflammation?

Stress?

The infusions?

Some combination of all of the above?

I honestly don’t know.

Maybe I’ll never know.

What I do know is that before chronic illness became the center of my life, my teeth weren’t falling apart.

Chronic illness isn’t always dramatic.

Sometimes it isn’t wheelchairs, MRIs, hospital stays, or infusion centers.

Sometimes it’s a cracked tooth.

A crown.

Another filling.

Another bill.

Another thing that quietly changes while nobody else notices.

People see the smile.

They see the family pictures.

They see the cowboy boots and the nights out and the moments I share online.

What they don’t see are all the little ways chronic illness chips away at you over time.

Physically.

Emotionally.

Financially.

The costs just keep showing up in places you never expected.

Has anyone else experienced something they swear changed after a medication, infusion, surgery, illness, or diagnosis—even if you can’t prove it on paper?

Not necessarily something listed as a side effect. Just something where you look back and think, “That was the turning point.”

I’d love to hear your stories.

I went to a neurological rehabilitation hospital.

At the time, I should have felt relieved.

Instead, I was terrified.

Because going to rehab meant accepting something I wasn’t ready to admit.

I wasn’t bouncing back from this relapse.

Not yet.

I had survived the hospital.

Now I had to figure out how to live …

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Jason worked hard, and together we decided I would raise our kids. I was there for the school parties, the pickups, the sick days, the field trips, the chaos, the little moments. And honestly? I loved it.

But I used to hear it all the time:

“Must be nice.”

And the truth is… it was nice.

Not because I was lazy.

Not because I “didn’t work.”

But because we built a life where I could be present for my kids, and my husband supported that dream as much as I did.

What people don’t understand is that there’s a huge difference between:

“I stay home.”

And:

“I can’t work.”

Back then, if I wanted to go back to work someday, I could’ve.

That choice still existed.

Then I got sick.

Right around the time my kids were getting older.

Right around the time I probably would have started figuring out what was next for me.

And suddenly, the choice was gone.

Now it’s not:

“I don’t work.”

It’s:

How do you explain to people that some days you physically cannot get out of bed?

That lifting your arms over your head feels impossible?

That exhaustion isn’t “being tired” — it’s your body shutting down?

That your brain doesn’t always cooperate with your intentions?

Who hires someone whose body might betray them at any moment?

That grief is complicated because I already was home.

People assume nothing changed.

But everything changed.

There’s a loss that comes with realizing your future got smaller without your permission.

A mourning for the version of yourself that thought someday you’d return to the world in a different way.

And the hardest part?

I still want to contribute.

I still want purpose.

I still want to feel capable and independent and useful.

Chronic illness doesn’t just take your health sometimes.

It takes your options.

And that’s something people don’t talk about enough.

You lose a certain amount of independence.

You rely on strangers.

You trust doctors, nurses, and specialists to help guide you through something you don’t fully understand.

And when that trust is broken, the damage goes far beyond the physical illness.

By the time I had been in the hospital for a…

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Actually, I woke up on the correct side of the bed. The problem is that my nervous system apparently woke up on the wrong side.

You know those days where everything feels slightly off?

Not emergency-room off.

Not dramatic social media post off.

Just… off.

My legs feel heavier.

My brain feels slower.

The coffee is doing its best, but it’s fighting a losing battle.

Every sound is a little louder. Every task requires a committee meeting. My body has decided that existing is a group project, and unfortunately nobody showed up prepared.

This is what a flare day looks like for me.

No inspirational ending.

No miraculous productivity hack.

No lesson about pushing through.

Today is a “do what I can and leave the rest” kind of day.

So if you’re also reading this from the wrong side of the bed—whether it’s chronic illness, disability, burnout, grief, parenting, or just life—I see you.

We’ll try again tomorrow.

And if tomorrow isn’t better?

We’ll try again the day after that.

Right now I’m going to refill my iced coffee and lower my expectations accordingly.

You can love your child with every piece of your heart and still grieve.

Those two things can exist at the same time.

For years, I felt guilty admitting that.

I thought saying I grieved somehow meant I wasn’t grateful. That it meant I loved my daughter less. That it meant I wished she were different.

None of that is true.

I adore my daughter, Livvy.

She is funny, beautiful, stubborn, smart, and determined. She has taught me more about patience, acceptance, resilience, and unconditional love than anyone else ever could.

She is one of the greatest joys of my life.

And still, sometimes, I grieve.

Not because I want a different daughter.

Not because I would change who she is.

But because there is a version of motherhood I thought I would have, and sometimes I miss her.

I miss the conversations I imagined we’d have.

I miss hearing about her day after school.

I miss the endless questions, funny stories, and random chatter I thought would fill our kitchen table.

I miss the tea parties we never really had.

I miss doing little-girl hairstyles before school.

I miss the things I assumed would happen without ever realizing they weren’t guaranteed.

I grieve the birthday party invitations that never seem to come.

The friendships that aren’t always easy.

The moments when I watch other families doing things that once felt automatic and realize our path looks different.

And if I’m being completely honest, I grieve the future too.

Not because I don’t believe in Livvy.

Because I do.

It’s because I don’t know.

Will she go to prom?

Will she have a best friend she talks to every day?

Will she fall in love?

Will she get married?

Will she live independently?

Will she have a career she enjoys?

Will she ever be able to tell me all the thoughts she keeps inside that beautiful mind?

The truth is, nobody knows.

And sometimes the not knowing is the hardest part.

Parents naturally dream about their children’s futures.

We imagine graduations, first dates, weddings, careers, grandchildren, and all the milestones in between.

When you’re raising a child with significant disabilities, those dreams don’t disappear.

They just become wrapped in uncertainty.

Sometimes you find yourself grieving futures that may never happen while simultaneously hoping with everything in you that they will.

You end up holding hope in one hand and grief in the other.

I still dream for Livvy.

I still imagine wonderful things for her life.

I still hope she surprises every prediction anyone has ever made.

I still hope she experiences joy, friendship, love, purpose, and belonging.

But there are nights when the weight of the unknown settles heavily on my chest.

Nights when I wonder who will understand her the way I do.

Who will advocate for her when I’m no longer here.

Who will see all the incredible things that make her who she is.

Who will protect her heart.

Who will make sure she knows she is loved.

Those thoughts can bring me to tears.

Not because I lack hope.

Because I love her so much.

The grief isn’t about Livvy.

The grief is about expectations.

It’s about letting go of certainty.

It’s about realizing that the future may not look the way you imagined and learning to find beauty in a different story.

Livvy is not a tragedy.

She is not broken.

She is not a burden.

She is not someone who needs fixing.

She is exactly who she is supposed to be.

A little girl who experiences the world differently.

A little girl who has taught me that communication comes in many forms.

A little girl who has shown me that progress doesn’t always happen on society’s timeline.

A little girl who deserves to be celebrated exactly as she is.

Some days accepting all of this feels easy.

Some days it breaks my heart.

Most days it’s both.

If you’re a parent of a disabled child and you’ve ever felt this grief, I want you to know something.

You are not a bad parent.

You are not selfish.

You are not ungrateful.

You are human.

You can mourn what might have been while fiercely loving what is.

Those feelings are not opposites.

They can exist side by side.

In fact, I think they often do.

And if there’s one thing Livvy has taught me, it’s that love doesn’t require expectations.

Love simply asks us to show up.

So I will keep showing up.

I will celebrate every victory, no matter how small.

I will fight for inclusion, acceptance, accessibility, and understanding.

I will keep dreaming for her.

I will keep hoping for her.

And I will keep loving her exactly as she is.

Because while I sometimes grieve the life I thought we’d have, I am endlessly grateful for the life we do.

I wouldn’t change Livvy for the world.

But I’d change the world for her in a heartbeat.

Not all at once.

Not with some dramatic movie moment where alarms went off and everyone immediately knew something was wrong.

It happened the way so many MS relapses happen.

Quietly.

At first, I just felt off.

A little more tired than usual.

A little unsteady.

The kind of symptoms you try to explain away when you’ve been …

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We’re not really part of the wellness crowd.

But we’re not completely separate from it either.

The wellness world is full of green smoothies, morning routines, meditation apps, supplements, gratitude journals, mushroom coffee, and promises that if you just optimize yourself enough, you’ll feel amazing.

The chronic illness world knows that’s not always how life works.

Sometimes you can do everything “right” and still wake up sick.

Sometimes you can eat the perfect diet, take the supplements, go to therapy, meditate, drink the water, get the sleep, and still end up in a relapse.

I know because I’ve lived it.

I have MS.

No amount of meditation cured it.

No supplement cured it.

No diet cured it.

No mushroom coffee cured it.

But that doesn’t mean those things have no value.

That’s where I think many of us get stuck.

The wellness community sometimes treats illness like a personal failure.

The message becomes: if you’re still sick, you must not be trying hard enough.

The chronic illness community has seen enough of that messaging that we sometimes become suspicious of anything that sounds remotely “wellness.”

And honestly? I understand both sides.

I don’t want someone telling me I can positive-think my way out of brain lesions.

I also don’t want to pretend that things like movement, physical therapy, nutrition, meditation, stress reduction, community, or better sleep haven’t helped me.

They have.

Not because they cured me.

Because they supported me.

There is a difference.

My medications matter.

My doctors matter.

Science matters.

But so does taking care of the body and mind I still have.

So when I talk about meditation, or reducing sugar, or trying Everyday Dose, or spending time in my garden, I’m not saying, “This will fix you.”

I’m saying, “This helped me feel a little better.”

Maybe that’s what wellness should be.

Not the pursuit of perfection.

Not the promise of a cure.

Just small things that help us live a little better inside the lives we’ve been given.

I don’t sit comfortably in the wellness category.

I don’t completely fit anywhere else either.

Maybe a lot of us don’t.

Maybe we’re creating our own category.

One where science and hope can exist together.

One where medication and meditation can sit at the same table.

One where we’re allowed to be sick and still pursue wellness.

And maybe that’s enough.

What suicidal ideation really feels like, and why staying matters.

The truth about suicidal thoughts is that most of the time they aren’t really about wanting to die.

Most of the time they’re abou…

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