Category: Uncategorized

Uncategorized

Leading my Limits

Hannah

When I opened my arms wide to welcome in a community that would keep us afloat on the days we need it, and hold us up on the days we are too frail, I also opened my arms to a whole range of perspectives, experiences, and opinions. It stands to reason that with so many different brush strokes making up my tribe, there will sometimes be tension when considering my situation.

I am a terminally ill young(ish) mom, wife, medical professional, friend, and relative with an awful lot of people who care deeply about me and want the best for me. And each of those “best wishes” is shaped by that person’s own knowledge, fears, and life experiences. I’m genuinely grateful for that—it means no stone is left unturned, no possibility ignored, no concern left unspoken. That kind of care is a gift.

But if I’m honest, it can also be a lot to carry.

I have been offered the full spectrum of doctors’ names and specialties, an impressive number of healing stories shared from personal experience, and a wide array of remedies that are “sure to help”—from expensive teas and elaborate oils to unconventional rituals and everything in between. Each suggestion is given with love. I know that. I feel that.

And still… it can be overwhelming.

Because underneath all of it is an unspoken assumption: that I might not be doing enough, considering enough, or protecting myself well enough.

The truth is, I am living inside this body every single day. I am the one weighing the risks, measuring the energy costs, and deciding what is worth it and what is not. I am constantly calculating—what will give me more life, and what will simply take more from me.

I need the space to do that.

I need the freedom to say, “Thank you, but no,” without feeling like I am letting someone down or missing something critical. I need permission—not from others, but from myself—to trust my own judgment.

Because I am not passive in this. I am not unaware. I am not neglecting my care.

I am choosing, very intentionally, how I spend what I have.

Sometimes that will look like pursuing treatment. Sometimes it will look like resting. Sometimes it will look like saying yes to something that feels worth the risk, and other times it will look like protecting my peace at all costs.

All of those choices are valid.

So if you are someone who loves me—and I know you are—please hear this gently: your care means everything to me. Your suggestions come from a place of compassion, and I don’t take that lightly.

But the most supportive thing you can offer me is trust.

Trust that I am listening.

Trust that I am thinking.

Trust that I am choosing with both wisdom and intention.

And trust that I know, better than anyone else, what my body and my life require in this season.

Walk with me. Sit with me. Pray for me. Laugh with me.

But please, let me lead when it comes to my own limits.

Multiple System Atrophy, Uncategorized

Losing Vision, Finding My Offering

Hannah

If you watched my video this week about getting new glasses, you undoubtedly noticed its lighthearted tone . I try to add an underscore of humor to all of my videos there, since the goal is education and awareness about MSA, not to garner pity or sad feelings from people. In reality, this latest change for me has been a little more heavy than humorous.

It started when I noticed my vision had pretty rapidly gotten very blurry. I wondered if it was a side effect of one of my medications, or if the slight glasses prescription I already have needed to be updated. When I went in for an eye exam, I learned it was neither. The reason for the profound vision loss I was experiencing was because my disease has weakened the muscles controlling my eyes so much that the blurriness I have been noticing is actually me seeing double.

The doctor that saw me that day was so compassionate and kind-hearted; I could tell he truly cared about my situation and wanted the best outcome possible for me. I sat staring through the giant robot-thingie while he dialed in lens after lens, trying to make it strong enough to correct my vision. It got better— the two birthday candles that started a few hand widths apart from each other moved in closer and closer, but even at top strength the candles never merged into one.

So I left the office with a new pair of thick bifocal glasses, feeling very much like the rug had been yanked out from under me by this new development that had not even been on my radar. And truth be told, even with my new specs there is a lot that has been lost as far as what I can see in detail, which in turn affects what I can do.

It was a disheartening blow at first, that left me wondering what I had to offer now. My Etsy business would be affected, my art, my writing… what was left for me to give to the people I love and care about?

For a little while, my mind went to the same place it always used to go when something was taken away from me: What am I still useful for?

Illness has a way of asking that question over and over again. Every new limitation feels like another subtraction sign—another thing crossed off the list of what you once could do.

And if I’m honest, I realized something in the middle of that discouragement: somewhere along the way, I had quietly started believing that my value to God and to other people was tied to my abilities. My productivity. My output. What I could make, build, write, organize, or contribute.

But that has never actually been the way God works.

God never needed my abilities.

He never needed my Etsy shop, or my artwork, or my words, or my capacity to juggle responsibilities and keep producing things that look impressive on the outside. None of those things were ever the offering He was asking for.

What He wanted was always much simpler—and much harder.

He wanted my heart.

When I started reading through Scripture again with this in mind, it was everywhere. Over and over, God makes it clear that He is not impressed with human strength or skill. In fact, He seems to go out of His way to work through weakness.

He chose shepherd boys, stutterers, widows with two coins, fishermen with no education, and people who openly admitted they were afraid and inadequate. Again and again, God reduced the resources so that no one could mistake where the power came from.

Which means my declining abilities are not a surprise to Him.

They don’t disqualify me.

If anything, they strip away the illusion that I ever had something impressive to bring to the table in the first place.

The truth is that my offering was never supposed to be what I could do.

My offering was always supposed to be me.

My trust.

My willingness.

My obedience in whatever small space I’m given today.

The older I get and the more this disease takes, the more God keeps narrowing things down to that single point: Will you still give me your heart when the things you used to rely on are gone?

And the surprising thing is that there is actually a lot of freedom in that question.

Because if God only wanted my abilities, I would eventually fail Him. Bodies break. Energy fades. Vision blurs. Talents come and go.

But if what He wants is my heart, that is something illness cannot take away.

Even on the days when my eyes won’t cooperate, when the candles refuse to merge into one clear image, when I can’t do half the things I used to do… I still have something to give.

I can still choose to trust Him.

I can still choose to love people well.

I can still offer the small, quiet faithfulness of a life surrendered.

And maybe that was the lesson hiding inside this unexpected trip to the eye doctor.

My vision may be fading in ways I never anticipated.

But in a strange way, the picture itself is becoming clearer.

God never needed my abilities.

He just wanted my heart.

Uncategorized

15

Hannah

Today you would be fifteen.

Fifteen feels big. It feels loud and bright and full of opinions and music and friends and late nights in the kitchen. Fifteen feels like learning to drive soon. Like strong emotions and stronger convictions. Like figuring out who you are. And that precious part of mother/daughter relationships where you become friends who enjoy each other’s company.

And I don’t get to know who you would have been.

That’s the ache.

I don’t know if you would have loved sports or books. I don’t know if you would have been bold or quiet, stubborn or soft. I don’t know what your laugh would sound like as a teenager, or what kind of friends you would choose, or whether you would roll your eyes at me when I tried to hug you in front of them.

There is a particular grief in the unknown.

When you died at nearly 5 months old, I grieved the baby in my arms. But as the years pass, I grieve the girl you never got to become. The birthdays that don’t come with cakes. The school pictures that were never taken. The conversations we will never have on this side of heaven.

And yet — this is not a hopeless day.

Because while I don’t know who you would have been here, I know exactly where you are.

You are not frozen at four months old. You are not missing out. You are not wandering or waiting or wishing for what might have been.

You are fully alive in the presence of Jesus.

You are safe. Whole. Held.

There is a security in that. A steadying under the ache. My arms were only meant to hold you for a short time. His were always meant to hold you forever.

Sometimes people ask how I reconcile the grief with the faith. The truth is, I don’t reconcile it. I carry both. I carry the longing to see your face at fifteen, and I carry the unshakable hope that the first face you see every day is the face of our Lord.

Scripture tells us that to be absent from the body is to be present with Him. That promise has been an anchor for me. Not a cliché. Not a platitude. An anchor.

I still wonder about you. I still imagine you. I still feel that flicker of curiosity about the young woman you might have been.

But I don’t have to wonder about your eternity.

And that changes everything.

Today I will probably cry. I will probably smile at memories of your baby cheeks and the way your tiny hand wrapped around my finger. I will probably whisper “happy birthday” into the quiet.

Fifteen.

I love you just as fiercely as I did the day you were born. That love did not shrink with your lifespan. It has stretched across years and heaven itself.

One day, there will be no more wondering. No more imagining. No more “what if.”

Only reunion.

Until then, I trust the One who loves you even more than I do.

Happy birthday, my girl. You are deeply missed. And you are eternally secure.

Christmas, Uncategorized

Holy Ground at Bedtime

Hannah

Last night my son and I laid near the soft glow of the Christmas tree, and talked as we have many nights at bedtime. We talked about all the typical things; what the bullies said to him at school today, why of all the people in the world did God allow me to be sick, and will the doctors tell us ahead of time when I am about to lose my voice, or will it just disappear without warning. I walked him through the emotions he feels about each of these things, and then we moved on through our bedtime routines.

It was after he was quiet for the night that it hit me how abnormal our normal is. I thought about my friends around town also tucking their littles in for the night, but their bedside conversations being about things like vacation plans, what they want in their lunch tomorrow, or what park or fun store they should visit after school the next day.

The unfairness rose quickly—that our conversations are rarely frivolous, that heaviness so often sits between our words. But as I lingered in the comparison, gratitude surprised me. I am not who I once was, and I’m thankful for that. This life has trained my eyes to notice what is delicate and fleeting, like the fine frost etched along the glass. The former version of me, busy and strong, would have overlooked it all.

I lingered by the lights that night before bed. Soaking in their soft, twinkly glow. Inhaling the last whiffs of an evergreen candle burned earlier in the evening. And in that quiet, I realized that this is how God has been teaching me to live now—slowly, attentively, reverently. My life has been narrowed in many ways, but it has also been clarified. When your world gets smaller, the meaningful things grow louder. The sacred becomes harder to ignore.

I don’t wish this road on anyone, least of all my child. I would give anything to lighten what he has to carry, to let him worry about ball court drama instead of disease progression. And yet, I can see how tender his heart has become. How perceptive. How brave. He asks questions some adults avoid for decades. He feels deeply, and he is learning that feelings— even the heavy ones— are survivable when they are shared.

Our conversations may not be light, but they are honest. They are full of connection. They are full of presence. There is a strange gift in knowing that tonight matters. That this voice, this body, this moment is not guaranteed tomorrow. It presses love into sharper focus.

As I finally turned off the tree and made my way to bed, I carried both grief and gratitude with me. Grief for the ease we’ve lost. Gratitude for the depth we’ve gained. I don’t think one cancels out the other. I think they coexist, braided together, teaching me how to hold joy without naivety and sorrow without despair.

This is not the life I would have chosen. But it is the life I’ve been given. And within it—between bedtime prayers and flickering lights, between hard questions and small mercies—there is still so much beauty to behold.

Friendship, Uncategorized

Curiosity & Caring

Hannah

There’s a sacredness to suffering that not everyone understands.

When someone is walking through the deep waters—when every breath feels borrowed and every day is held together by grace—questions can become sharp without ever meaning to be. Have they given you a timeline? What treatments are they trying next? How bad has it gotten? Have they told you when they expect you to die?

Some of those seem atrocious, but they are questions we have actually answered had to field at one time or another. Sometimes these questions slip out clothed as concern, but they land like cold hands on tender skin.

Curiosity is not the same as caring. Curiosity wants information. Caring wants presence. Curiosity circles around pain to peer inside. Caring steps into the shadows and sits down beside you. Curiosity tries to relieve its own unease. Caring is willing to feel uncomfortable just so you don’t feel alone.

I’ve learned there is a holy difference.

I don’t mind sharing pieces of my journey—there is beauty, even here, and God’s fingerprints are everywhere. But when the conversation turns to timelines for my dying or details of treatments that stretch my limits just to endure… that crosses into a territory my soul guards carefully. It’s not because I’m ashamed or afraid. It’s because this is holy ground for me and my family. We are living it, breathing it, praying through it. I am learning to trust God in the dark, and trust is fragile when handled carelessly.

What I welcome—what I desperately treasure—are those who choose presence over answers.

The ones who say, “I’m here.”

The ones who quietly hold space when the tears come.

The ones who don’t need to know the forecast of my future to love me faithfully in my present. The ones who walk with us without needing to understand every detail of the valley. This is the love that looks like Christ.

He never demanded explanations from the suffering. He didn’t ask the bleeding woman for her medical history or the blind man for an exact timeline of his decline. He simply came close. He touched. He healed. He stayed.

He showed us that compassion doesn’t interrogate—it accompanies.

And so we lean into the nearness of God and into the arms of those who reflect Him, the ones who simply show up. The ones who see us instead of studying us. The ones who offer presence instead of probing questions.

If you want to walk beside me, you don’t need to understand every piece of what’s happening. You don’t need updates or timelines. You don’t need the painful details.

You just need a willing heart and a steady step.

Sit with me. Pray with me. Laugh with me. Hold hope with me when I’m tired. Remind me that God is still good, still here, still leading us home.

Curiosity might reach for facts, but caring reaches for hands.

And in this season, hands—and hearts—are what hold me up.

favorites, Uncategorized

Five (+1) Favorites

Hannah

As the gift-giving season kicks into high gear, I thought I’d share a few of my favorite things—who knows, you might find just the right surprise for someone you love.

Not to cheat on Ben & Jerry, but this flavor has really carved out a place in my heart, and my meal plan!

Don’t laugh. My family eats a LOT of pineapple. These days I’m all for things that make tasks easier and safer for my weakening arms and hands. This pineapple cutter skins and slices the whole fruit in just a couple of twists, and without all the sticky mess of trying to do it on your cutting board.

https://a.co/d/bpffqeZ

I’ve never been a fan of fake nails, but when I spotted Olive & June’s gorgeous colors—and a 50% off sale at Walgreens—I decided to give them a try. What I like most is that they offer short and extra-short lengths, which are perfect for me and still let you do all the everyday tasks that require actual fingertips!

I hate the feel of most compression socks that are made of nylon. I noticed these ones at Walmart were a thicker, softer, cotton feel, and tried them out. Glad I did, because now they’re in my weekly sock rotation and help a lot on days I have sore and achey legs and feet.

If you have kids, teens or tweens (or, ahem, a husband) these flip calendars by Brooke Romney are gold. She has them for kids and for teens- we are using the teen one with our kids ages 12-23 and it’s perfectly appropriate for all. Brooke takes common sense manners for all sorts of situations and writes them in a way that’s easy for the littles to make sense of, and are still excellent reminders for the adults in the room. We keep ours on the dinner table and read one each night; it’s been a fun way to connect and a good source of conversation around the table. They’re also on sale right now with code THANKS at checkout.

https://brookeromney.com/modern-manners/

Charlie Mackesy’s second book is equally wonderful to his first. Such a tender, thought-provoking, gentle, and life-giving story, for children and adults alike. And I could just soak in the sweet illustrations all day long!

Friendship, Uncategorized

The Seasons of Staying

Hannah

Being a friend of someone with terminal illness must be quite the roller coaster. I’ve had the privilege a few times, but never for so long a stretch of time as my illness has asked of my tribe. That in itself is a beautiful gift, but the cost of it is also not lost on me.

Being a friend of someone with terminal illness must be quite the roller coaster. I’ve had the privilege a few times, but never so long a stretch of time as my illness has asked of my tribe. That in itself is a beautiful gift, but the cost of it is also not lost on me.

There’s something both sacred and sorrowful about watching friendships move through the seasons when you are the one who is dying. In the beginning, the circle is wide — full of love and meals, visits and prayers, the kind of tender urgency that comes when people don’t yet know what to do but feel compelled to do something. It’s a holy flood of kindness, and it humbles you to your core.

But time, as it does, stretches. Months turn into years, and the edges of the circle shift. Some friends drift quietly into the background, not because they stopped caring, but because life resumes its relentless rhythm. Kids grow, careers change, and the crisis that once felt immediate now lives in the quieter corners of their awareness.

And honestly? I get it. I’ve been that friend before too — before this diagnosis rewrote my sense of time. I’ve meant to reach out and didn’t. I’ve avoided pain I didn’t know how to face. I’ve loved someone deeply and still failed to show up in the way I wish I had. So I hold that understanding now with open hands and no resentment, just a bittersweet ache that love sometimes outlasts proximity.

What’s left are the ones who stay through the long middle — not just the early crisis or the final goodbye, but the drawn-out, unpredictable middle where the reality of terminal illness stops being dramatic and just becomes life. They sit with me in the mundane. They ask the unglamorous questions. They know when to come close and when to give space. They’ve learned that faithfulness doesn’t always look like constant presence, but steady presence.

And then, there are those who come back — friends who circle in again after time away, sometimes awkwardly, often tenderly. Their return feels like mercy. It reminds me that love isn’t linear; it’s tidal. People ebb and flow in and out of each other’s lives, and that movement, too, can be grace.

I used to think loyalty meant never leaving. Now I think it means being willing to return.

So to my friends — those who have stayed, drifted, returned, or simply remembered me from afar — please know this: your love has carried me. Every text, every silence, every prayer whispered when you didn’t know what to say has mattered.

Illness has taught me that friendship isn’t measured in constant nearness but in the threads of care that remain, even when time and distance stretch them thin.

If I could sum it up, I’d say this: the seasons of friendship are not a sign of failure, but of humanity. And what a fragile, beautiful, sacred thing it is to be human together — even in the shadow of goodbye.

One of my all time favorite reads!

Uncategorized

The Dusty Stethescope

Hannah

Sleep evaded me again last night.

I reached for distraction—scrolling through ideas for Christmas gifts for my people. When I searched for something for my young STNA/up-and-coming physician, I stumbled upon a site selling the most beautiful stethoscopes I’d ever seen.

Colors like jewels.

Patterns like joy.

One in particular caught my eye—a swirl of pink animal print and sharp, gleaming purple— shining with all things girlish and lovely. And for a brief flicker, right before unconscious thought becomes awareness, I mused, “this is the one I’ll ask for next time.”

But then—

my heart caught up to my body.

And I remembered where I was sitting: in my hospital bed at home, a ventilator mask pressed against my face, small plastic cups of pills lined neatly beside me, guarding against the next wave of breathless panic.

In the thick, holy silence of 2 a.m., I swear I heard the sound of my own heart dropping back into the deep, heavy truth of reality.

I will not be needing a new stethoscope.

Not now, not ever.

No more pressing the cool bell to a grandmother’s arm, listening for the soft rhythm of life beneath her paper-thin skin.

No more playing peekaboo with wide-eyed children, pretending it’s a game while I listen carefully to the music of their lungs.

Those days—those glory days—hang preserved behind glass, my green stethoscope draped like a memory across the frame. The strength that once carried me into the chaos of sirens and smoke has long since ebbed away, leaving behind a body most people only know in its fragility, not its former fire.

Suffering has a way of testing what our hearts truly believe.

It presses heat against the places where we’ve built our sense of strength.

And when suffering comes for the strong, it is often met with anger—

not at the pain itself, but at the theft of power.

On my hardest days, I don’t find myself begging for suffering to stop.

I find myself begging for strength to return.

That’s the honest prayer.

Not fewer storms—just stronger arms to stand in them.

And yet, even that desire reveals how frail my own strength really is.

Paul puts it even more vividly;

“We always carry around in our body the death of Jesus, so that the life of Jesus may also be revealed in our body.” (2 Corinthians 4:10)

We love strength.

We polish it, parade it, protect it.

And when it’s gone, we question the goodness of God.

But I am learning—slowly, painfully—that the taking of strength is grace.

Grace that empties my hands of what I thought I needed,

so that I might cling more tightly to Jesus.

Now, as I face this new season of weakness,

with tiny bursts of ability to go and do,

I ask myself: how will I use this small strength?

I’ve been praying—for hunger on my well days.

For Scripture to taste sweeter.

For my heart to grow restless for the things of God.

For apathy to break, for grace to deepen.

And when suffering returns—as it will—

may my heart be ready to receive it.

To whisper, thank you, Jesus, for entrusting me with this new hard.

Help me be faithful in it.

Help me reflect your goodness in the ache.

Let me be a mirror of grace—

a witness to the beauty that lives

in the losing of strength,

and the finding of You.