Tag: faith

Multiple System Atrophy

The Sound of Survival

Hannah

As my muscles weaken and I spend more time on my ventilator, my voice is fading as well. After much frustration trying to gather enough breath to make myself heard, especially from another room, we came up with a new solution.

I was delighted that with my new amplifier I can easily be heard, even in my softest voice. It saves me a lot of breath, and makes it easier for the people around to understand me.

However, this didn’t necessarily go over well with everyone. When my young son saw the demonstration of my new device his eyes widened. “Please do not EVER use that in front of any of my friends.” Ahh, I’ve seen this hard embarrassment before. It happened when I initially needed a machine to support my breathing, and it happened when I first started using a wheelchair. Whenever we were headed somewhere, he would ask, “are you bringing your vent? Are you bringing your chair?” Earlier on I was able to provide some balance- leaving these behind to make it through short events with him so that he had one less thing to worry over. As my condition has progressed however, these helps are a more constant companion. But here we are with a new player on the scene, and my heart breaks for my boy who just longs for some normalcy.

And so I find myself holding two truths at once. I am deeply grateful for tools that allow me to remain present, to speak, to be heard, to stay connected to the people I love. And I am also grieving alongside my son, who did not ask for a mother whose body requires so much explaining.

His embarrassment is not cruelty. It is not rejection. It is the ache of a child who wants to blend in, who wants his world to look like everyone else’s, who is already carrying more than his fair share of difference. I recognize that look in his eyes—the same one I’ve seen when strangers stare too long, when friends ask questions he doesn’t know how to answer, when he realizes yet again that our family does not move through the world unnoticed.

So I try to meet him with gentleness. I remind him that it’s okay to feel this way. That loving me doesn’t mean loving every machine that keeps me going. That embarrassment and compassion can exist in the same heart. I tell him that these devices are not symbols of failure, but of persistence—that they are the reason I can cheer for him, listen to his stories, and whisper “I love you” at the end of the day.

And I also do the harder work of letting go of the bargain I once tried to make—of believing I could soften this for him by minimizing myself. I am learning that my job is not to disappear to make life easier for those I love, but to model what it looks like to live honestly within limitation, without shame.

One day, I hope he will remember not the sound of the amplifier or the sight of the tubes, but the way we kept showing up for each other anyway. I hope he will know that his mother did not give up her voice—even when it came out differently than before.

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.

family

Letting Go, One Christmas at a Time

Hannah

My youngest turned 13 earlier this week. Somehow I managed to get through that day and several more before it really hit me. My youngest baby is a teenager! The exact time this news caught up with my heart and my tears was the night before Christmas as I finished up my gift wrapping.

I picked a book from my stack of gifts and slid the scissors along the wrapping paper to measure just the right size piece. I had been excited to come across a newly released book in the series my boy enjoyed. But as I creased the paper around the edges of the book I suddenly stopped. Why on earth am I gifting him this? Not only does he not enjoy reading, he hasn’t been into this book series for THREE YEARS!

Suddenly a flood of tears coursed uninhibited down my cheeks, as I realized this purchase had simply been a misguided attempt to ignore the fact that time was stealing away the years, and grasping at anything to freeze the moments in time.

I stood there for a long moment, hands resting on the paper, staring at a version of my son that no longer exists. The boy who once devoured those stories on the couch, legs tangled in blankets, asking me just one more chapter, please. That boy has been quietly, faithfully growing up while I wasn’t looking.

I finished wrapping the gift anyway, tears dropping onto the tape and ribbon, because motherhood doesn’t stop when our hearts ache. But something shifted in me. I wasn’t just mourning a book choice—I was grieving a season. The small hands. The loud laughter over silly plots. The years when his world was simple and I was still his safe place for everything.

Thirteen feels like a threshold. Not a door slammed shut, but one gently closing behind us while another creaks open ahead. He is becoming someone new—someone with opinions, independence, and a future that will carry him farther from my daily reach. And I’m proud of him. Deeply. Fiercely. But pride doesn’t cancel grief. They coexist, tangled together in the quiet moments, like Christmas Eve tears over wrapping paper.

I know this won’t be the last time I grieve the passing of who my children once were. Motherhood is a series of goodbyes disguised as growth. We celebrate the milestones, take the pictures, bake the cakes—while our hearts lag just a step behind, trying to catch up.

So this Christmas, I’m letting myself feel it. I’m releasing the little boy I tried to buy back with a book, and asking for grace to love the teenager standing in front of me now. To learn him again. To meet him where he is, not where I wish time had paused.

And maybe that’s the real gift of this season—not holding tighter to what was, but opening our hands to what is becoming.

Uncategorized, Friendship

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.

Thanksgiving

Thanksgiving Update

Hannah

I knew this Thanksgiving wouldn’t look quite like the ones we’ve tucked into memory. The calendar had to shift to fit kids’ work schedules and scattered availability. I had to recruit a backup cook because my strength simply couldn’t stretch far enough to carry a full Thanksgiving meal this year. And my husband had to bow out entirely when he scheduled a double knee replacement just days before the holiday.

Yet somehow, none of that made the week dull. I still managed to lock the keys in the car, faint while helping my husband and earn myself an ambulance ride—and a fresh set of stitches. And in true last-minute fashion, I found myself stepping in for friends and running the 8:30 a.m. Turkey Trot in thirty degree weather on Thanksgiving morning.

But today has been its own kind of glory—bundled in the cold, then thawing out in a warm, cozy house filled with the people I love. MarioKart championships, board games scattered across the table, quiet naps under soft blankets. It has been simple, chaotic, and beautiful.

I have more to be thankful for than words can hold. And as I count the blessings I can see—and the many I can’t—I’m lifting my gratitude upward. I pray you’re doing the same today, giving thanks to the One who fills our lives with mercies new every morning and goodness we could never deserve.

Happy Thanksgiving, friends. May your hearts be full and your eyes open to every grace He has poured out.

Uncategorized, Friendship

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.

faith

When a Voice Falls Silent: A Call to Courage

Hannah

There are a lot of voices right now. A deafening amount of opinions and points of view. Sometimes it’s difficult to know whether speaking is warranted, or if it will just add to the noise. One thing I know though, is that in the face of devastation, hope is a needed voice to hear.

What happens when a prominent voice for truth is suddenly silenced? When someone who stood boldly, unashamed of the gospel, and unwilling to compromise, is snatched away from us? The temptation is fear. Fear that if they can be taken down, then what about us? Fear that darkness is stronger than light. Fear that speaking up will cost too much.

The missionary Paul reminds us otherwise:

“…I will not be put to shame in anything, but that with all boldness, Christ will even now, as always, be exalted in my body, whether by life or by death. For to me, to live is Christ, and to die is gain.”
‭‭Philippians‬ ‭1‬:‭20-21

This is not the end. Death does not have the final word. Every voice that is silenced here will one day be awakened at the sound of His voice. Every injustice will be answered. Every act of courage will be remembered before the throne of God.

So what do we do if a voice for truth falls silent?

We do not shrink back. We do not hide in fear. We step forward. We take up the torch that has been handed to us. We keep talking, keep living, keep shining. Because the mission was never about one person’s voice alone — it is about God’s truth resounding through His people. (John 5:28-29)

The darker the world gets, the more every flicker of light matters. The more every word of courage echoes. The more every act of faith shines.

Let us not be silent. Let us not cower. Let us not let darkness have the last word. Instead, let us outshine it. Because one day, the tombs will open, the righteous will rise, and the Judge of all the earth will make everything right.

Until then, we keep speaking. We keep living with courage. We keep letting the light shine.

child loss

The Scar That Stays

Hannah

Today is a scar.

No matter how many years stretch between then and now, July 14th will never pass unnoticed. It pulses quietly beneath the surface all year long, and when it comes, it breaks open again—not as a wound, but as a scar that still aches.

The day my daughter died marked my life in a way that changed everything. There was a before, and there is an after. And though time has moved forward, this day remains. It always will.

Scars are proof of both injury and healing. They say, “Something happened here. Something was torn open, but it didn’t destroy you.” That’s what this day feels like—evidence that something was lost that mattered so deeply, it will never be forgotten. This scar tells a story of love, of longing, of holding on and letting go. It reminds me that grief isn’t a lack of faith—it’s an expression of it. I grieve because I loved, and I still do.

There is comfort in knowing that even Jesus kept His scars. He could have been raised from the dead in flawless perfection, unmarred by crucifixion. But the Father chose to leave the marks. The holes in His hands and side weren’t oversights. They were signs—of suffering, yes, but also of victory. They tell the story of a love so vast it entered into death to bring us life.

Those scars helped Thomas believe. They helped the disciples recognize Him. And they help me, too.

Because if Jesus can carry His scars into glory, so can I.

So can this day.

The pain of this anniversary is real. It isn’t erased by time, or even by the hope I have in Christ. But it is held. Redeemed. It has a place in the larger story God is telling—one in which death is not the end, and scars can become signs of resurrection.

So today, I sit with the ache. I trace the edges of the memory. I let the tears come, because they matter. But I do not grieve as one without hope. I know the One who holds my daughter now. I know He is good. And I know that one day, every tear will be wiped away.

Until then, I carry this scar—not as a symbol of defeat, but as a quiet testimony:

Love lived here.

Hope lives still.

Uncategorized

Even Here

Hannah

I decided today was shower day. With a broken wrist and low energy, some days are arranged to be less involved than a whole shower, but today it was time for the real thing.

Sitting on my chair in the shower I made a mental note to myself, “figure out how to get pumps for my shampoo and conditioner bottles; it’s getting hard for my hands to squeeze anything out of them.” I didn’t realize I had bigger problems than that.

As I finished up washing and reached up to scrunch the water out of my hair with my good hand, my arm banged back down onto my lap. I tried twice more, but couldn’t lift my arm high enough to squeeze the water from my hair. I decided to just dry off and deal with it outside the shower. Then came the realization that neither could I reach for my towel to dry off. I sat in the shower, dripping wet, unable to do anything for myself, and something broke inside.

Fortunately my husband was close enough by to hear my raspy call for help, and he came to my aid. As he did for me what I had done for myself for at least the past 37 years, tears mixed with the shower water that dripped down my face. “It’s not fair,” I croaked.

The words felt both childish and truer than anything I’d said all week.

This wasn’t how it was supposed to be. I wasn’t supposed to need help with something as basic as drying off. I wasn’t supposed to be this tired, this fragile, this dependent. And maybe most of all, I wasn’t supposed to feel so small—so cracked open by something as simple as a shower.

But there in the tension between frustration and fatigue, my heart whispered what my mouth could not: “Even here, Lord?”

Even here, when my wrist is broken, my body is weak, and my heart is weary?

Even here, when I don’t recognize this version of myself?

Even here, when I feel like more of a burden than a blessing?

And somehow, though He didn’t speak aloud, I felt the answer settle in deeper than my bones: Yes. Even here.

Even here, He is present.

Even here, He is faithful.

Even here, He is not confused about my story.

It’s one thing to trust God when everything makes sense—when my strength is intact, when my routines are predictable, and my body does what I ask of it. It’s another thing entirely to trust Him when nothing is working and I’m wrapped in a towel I couldn’t even reach on my own. It is a hard-fought trust that doesn’t come naturally.

But I’m learning that this is a holy place too.

Not polished. Not powerful. Just painfully human—and held.

There is a strange kind of worship that happens when we let God meet us in our brokenness without pretending we’re fine. When we let the tears fall and still say, “I trust You anyway.” When we acknowledge the ache and still choose to believe He’s working all things for our good.

I don’t understand all He’s doing. I don’t love the limitations. But I know the One who has never wasted pain, never abandoned His people, and never made a mistake. And if He’s allowing this part of the story, then somehow—even this—is being woven into something eternal.

So today, in a soaked towel and salty tears, I’m offering Him what I have: my honesty, my surrender, my broken trust trying to be whole.

Because even here, He is worthy.

Even here, He is good.

And even here, I still believe He knows exactly what He’s doing.