Tag: Multiple System Atrophy

faith

Between Fear & Forever: A Mother’s Honest Wrestling

Hannah

This week I listened quietly as my youngest talked about how differently his life is going to look in the coming months as our family is growing and changing, and one of the things he included was the absence of me in his life. He quickly realized what he had just said to me and began backpedaling, trying to assure me that’s not what he meant, and that I was still included in his equation of the days in front of him. It was too late though; like toothpaste squeezed from the tube, the words couldn’t be stuffed back from existence.

My thoughts began racing. Fight or flight kicked in, and I definitely chose fight. Fight for more days, more time. Fight for presence at all the important life events he’s going to want me at. Fight to be here so he doesn’t have to imagine a life without me. And then… like a rush of calm water, a peace came over me and I heard, “this place is not your home. All of these things, these moments, are temporary at best.”

Heaven is my true home.

Then just as fast as the peace washed over me, a wave of fear knocked me from my feet. What if Heaven isn’t really real? What if we’ve made it all up to comfort ourselves, but this is all there is? Panic ensued again, but this time as I shared my thoughts with a trusted friend she spoke the truth to me so lovingly: “Don’t you listen to that. Those are lies from the devil himself.”

Her words settled over me like a warm blanket pulled up to my chin in the dark — not removing the night, but reminding me I am not alone in it. And slowly, breath by breath, the panic loosened its grip. Because fear may shout, but truth always speaks in a steadier voice.

I thought again of my son, of his unfiltered honesty, of the way children sometimes say the quiet parts out loud. And I realized it wasn’t cruelty — it was simply the collision of innocence and reality. He is trying to imagine a future that feels unimaginable. So am I.

But maybe this is where faith becomes more than a word we say in church or a verse embroidered on a pillow. Maybe faith is choosing, in the trembling middle of unanswered questions, to set my weight on the promises of God — not because I feel brave, but because He is faithful.

Heaven is real, not because I can prove it, but because the God who has carried me this far has never once let His character contradict His compassion. I see hints of forever in the kindness of friends, in the way grief and hope can coexist in the same breath, in the way my child still reaches for me even as he learns to release me.

I don’t know how many more ordinary mornings I’ll get to witness or how many milestones I’ll still be present for. But I do know this: love leaves a imprint that death cannot erase, and mercy writes a story that continues long after my final chapter on this side of eternity.

So I will keep fighting for the days I’m given, but I will also practice loosening my grip — trusting that the God who holds my future also holds my family, with a tenderness that outlasts time itself.

And when fear rises like a tide, I will remember:

this world is not my home,

but neither am I abandoned in it.

There is a Savior who meets me in the trembling,

steadies my steps,

and whispers the truer story —

one where love has the final word,

and where every goodbye is only temporary.

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.

suffering

Standing, when everything shakes

Hannah

🎶 “Standing on the promises of Christ my King, through eternal ages let his praises ring; glory in the highest I will shout and sing, standing on the promises of God!”🎶

Affliction has a way of changing the way we sing. Once, I sang this hymn standing tall, lungs full, voice rising like a joyful Baptist at a Saturday night revival—sure, strong, unquestioning. Now, I sing it slower from the quiet of my hospital bed, tasting each word, weighing every promise against the heaviness pressing on my chest. The melody hasn’t changed, but I have.

18 days. Eighteen days of one hard thing after another maddeningly marching through the doors of my life—uninvited, unrelenting. Health unraveling into painful new territories, relationships trembling under pressure that threatens what once seemed unshakeable, the future scattering into pieces I can no longer hold together. It feels like too much.

In a weary whisper only God could hear, I said, You are asking too much of me. This feels impossible. I don’t think I can do this. And yet—You must think I can.

So where, Lord, is the help You promised?

Promise. That word flickered through my tired mind and opened a remembered door: “This is my comfort in my affliction, that Your promise gives me life” (Psalm 119:50). There it was—quiet as a breath, clear as a bell: Hannah, this is your help. My promises. Stand on them.

So the words came tumbling—like a river breaking through a dam—every scripture, every promise I could catch hold of, spoken aloud over the noise of despair crowding my soul:

If I stand firm to the end, You will save me. You give strength to the weary. I will see the goodness of the Lord in the land of the living. Your name is a strong tower—I run to You. With Your grace, all things are possible. So help me do what feels impossible. Help me make it through this.

And this morning, something was different. The circumstances hadn’t shifted—the questions still hovered—but my heart? It stood. Courage where fear had sat. Steadiness where trembling had lived. God had kept His word. He renewed me. He breathed life where hope was thinning. His promises held me upright, where I thought I would fall.

My family woke to the sound of me—quiet, raspy voice —singing again like that happy Baptist at a Saturday night revival: Standing on the promises of God.

And this time, I am not just singing it. I am living it.

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.

grief

Midnight Tears

Hannah

In the ink-black hush of night, I lie awake, my body heavy with fatigue and pain, my heart a storm of grief and longing. Tears fall in quiet rivers, tracing the contours of sorrow I cannot name. I weep for my husband, for the weight this life presses upon him. I weep for my adult children, for the precious hours I wish I could stretch into eternity, to know them more fully, love them more completely. And I weep for my twelve-year-old boy—for the tender, unspoken ache of a mother who knows she cannot protect him from everything, and who feels the relentless pull of her own mortality. There are no words to capture this deep, trembling sorrow.

Yet even in this darkness, there is something sacred. Pain and wonder sit side by side in the same trembling heart. In these midnight moments, when the world is hushed and the stars are silent witnesses, I feel the faint brush of God’s own breath upon me.

As the dark gives way to morning’s first light I walk with my boy through grief toward hope, whispering truths we both need to hear: that this life is but a blink, fleeting, whether our days end at thirty or a hundred and five. None of us are promised tomorrow. Today is the gift—and even suffering, piercing and raw, is not wasted. It is the means by which God presses treasure into our hearts, treasure that lasts beyond the fleeting pulse of this world.

So I hold my boy’s hand and I murmur lessons meant for both of us. That Jesus is enough. That our story does not end in a hospital room or a grave. That heaven is not an escape, but a home we were made for, and sorrow is merely the shadow that makes its light possible.

faith

Brave Was Never the Plan

Hannah

I had a new nurse come visit me last week. He was honest, kind, and thorough — asking all the usual questions about my medical history; the twists and turns that brought me here. I’ve learned to tell that story in pieces now, almost like reading from a well-worn script. When I finished, he sat back in his chair and said softly, “You’re really brave.”

He said it again before he left. And I smiled, but inside I felt a strange ache. Because I don’t feel brave. Not even close.

Most days, I feel like I’m just hanging on for dear life — doing the next thing because there is no other choice. Take the medication. Show up for the appointment. Face the pain. Rest. Repeat. There’s nothing glamorous about it, and most of the time, it doesn’t feel like courage; it feels like survival. The kind of survival where you’re digging in your fingernails, white-knuckling hope like your life depends on it, because it does.

But maybe, just maybe, God sees it differently.

I think about how often Scripture tells us, “Do not be afraid.” It’s not because life is easy or because fear never knocks at our door — it’s because God promises to be with us in it. Maybe bravery isn’t the absence of fear or the strength to charge forward. Maybe it’s the quiet trust to take one trembling step at a time, believing that God’s hand is steadying us, even when our own knees are shaking.

There are days when my prayers are nothing more than whispered sighs — “Lord, help me through this hour.” There are nights when I’m too weary to pray at all, and all I can do is rest in the truth that the Spirit intercedes for me when I have no words left. And maybe that’s what real courage looks like: surrendering the illusion of strength and leaning instead into the grace that holds me together.

I don’t feel brave, but I am learning that bravery doesn’t always feel like bravery. Sometimes it looks like showing up. Sometimes it looks like tears. Sometimes it looks like still believing that God is good, even when life doesn’t feel good.

If someone calls me brave, maybe what they really see is the reflection of God’s faithfulness — the way He sustains a soul that should have fallen apart by now. I’m learning to take that as a quiet reminder: this story isn’t about how strong I am, but about how faithful He is.

So no, I don’t feel brave. But I keep going. And by God’s grace, that’s enough.

Gratitude

The Gift of Time

Hannah

About a week ago I discovered my first real, here-to-stay gray hair. At about an inch and a half long, the silvery strand sparkled in the light, and I squeaked with delight. I have been waiting for this day!

It felt almost holy, that moment of noticing what the world often calls a flaw but what Scripture calls a crown. The Bible says, “Gray hair is a crown of glory; it is gained in a righteous life” (Proverbs 16:31). A strand of silver is not something to pluck away or hide in embarrassment—it’s a shimmer of honor, the whisper of years lived and stories carried, a reminder that time is a gift.

The world tells us that beauty belongs to the young, but God tells us that beauty deepens with age. Every laugh line is a history of joy. Every crease carries the memory of burdens borne and released. Every gray hair gleams with testimony: of lessons learned, of prayers prayed, of nights endured and mornings met with new mercies.

Aging is not the dimming of the light, but the soft glow of it spreading, warming, illuminating. It is not a loss—it is a gathering. We gather wisdom, we gather perspective, we gather gratitude for the fleetingness of days and the eternity that awaits beyond them.

To age is to live long enough to love more deeply, to forgive more freely, to see life with eyes unclouded by the urgency of youth. It is to carry within us the sacredness of experience, the sweetness of perspective, and the quiet strength of having endured.

So when I see that little silver thread sparkle in the mirror, I do not feel embarrassed. I feel crowned. Crowned with grace, crowned with wisdom, crowned with the reminder that my days are in His hands and that every year is a jewel added to the story He is writing through my life.

Fun with gray

Aging is not something to hide. It is something to honor. Something to embrace. Something to rejoice in.

Because every gray hair is not just a strand—it is a song of God’s faithfulness woven into us, shimmering with glory.

faith, Fatal Illness, grief, hope

Already Gone, Still Here

Hannah

In the lonely slowness of the in-between, I have discovered something deeply human. A kind of fierce clarity about what matters. An urgent desire to stop faking things just so others won’t be uncomfortable. A pressing yearning to stop wasting words. I can already see who stays. And who doesn’t. Why then do I go to such lengths to create a mirage of okayness so that other people don’t have to reckon with my pain? Why do I smooth over the truth, soften the edges, laugh at the wrong moments—just to make grief more palatable for them?

I think it’s because pretending is the currency of the healthy world. We’re taught to keep things light, manageable, convenient. And when you live in the long shadow of a fatal illness, your reality becomes deeply inconvenient. It disrupts dinner parties. It silences group texts. It taints the joyful camaraderie of a birthday party and unsettles the rhythm of everyone else’s forward motion.

So I contort myself. I wrap my fear in polite phrases. I pad my sorrow with jokes. I give updates that are vague but upbeat. I try not to be too much.

But the cost of that mirage is high. It leaves me lonelier than the illness ever could.

Because here in this slow unraveling, there’s a strange and sacred gift: honesty. The kind that doesn’t flinch. The kind that strips everything down to what’s real and raw and enduring. The kind that doesn’t need to be tied up in a bow.

I’m learning—painfully, awkwardly—that the people who can sit with the truth, even when it’s heavy, are the ones who deserve a front-row seat to what’s left of my life. The rest, kindly, can drift.

This in-between space? It’s not just waiting to die. It’s where I’m learning how to live.

And it’s beautiful and sacred and so much richer than the plot points I would have imagined for my life, and if I am worthy enough to be used for His glory in this way, then I dare not try to contort the storyline that I was written into- one that is not defeat, but is my final triumph.

This is my sacred stage to shine for Jesus- to show a watching world that He is true and every word He spoke is sure. So I will be clinging to His promises like breath itself until my breath is nothing more than the stringy shadow of a vapor hanging suspended in nothingness. If I do that alone then I know it was done with the most honest of intentions, not for the sake of trying to fit into one of the many molds this world would have me choose.

To those of you who were courageous enough to sit near and take fire based on your proximity, I thank you, and I commend you. Know that you did something holy. You didn’t fix it. You didn’t have to. You just stayed—when leaving would have been easier, cleaner, safer. You let the silence speak. You let the pain breathe. You let me be more than just my label.

Know that your presence has been a lifeline. A quiet rebellion against the cultural pull to look away, move on, keep scrolling. You bore witness when I felt invisible. You carried pieces of my grief in your own hands, and somehow, that made it more bearable.

You may not realize the impact you’ve had, but I do. And I will carry the weight of your kindness with me for as long as I have breath.

This long goodbye is not just mine to live—it’s ours to hold. And I am so deeply grateful for those of you who chose to hold it with me.

faith, Uncategorized

Even now

Hannah

How will we make it through this? The valleys we walk may bear different names, but at the beginning of the trailhead we all have a choice to make.

I once chose with clenched fists, fueled by grief, driven by fear… maybe you have been there too. But hear me now, not from the mountaintop, but from the shadowed lowlands, where echoes of pain still linger—choose the better way.

To those who call Jesus Lord: we proclaim a Kingdom not built by hands, not tied to decades past or decades to come. No power of earth can shake what is secure in Him. This is not a call to passivity— but perhaps an invitation: learn the stillness of the soul.

Not silence for silence’s sake, but a reorienting, a returning to the Way that is higher, slower, deeper. God has been faithful—not because all is mended, not because we have been spared, but because He never left.

Each day aches like fire, and still, Jesus is good.

Each prayer rises desperate, and still, Jesus is near.

His nearness is not held hostage to the outcomes I crave. Call me foolish, if you must. I am learning to care less for opinions, and more for people, because Jesus is shaping my heart for a Kingdom not made of noise.

God’s goodness is not measured by the speed of escape from sorrow. Whether I have months or years this I know:

Jesus is here. He is good. And gently He whispers: “Be still, and know that I am God.

So in your valley will you stop, just for a moment? Turn from the scroll, the post, the panic, and let your soul lean toward Him. Even here, where fear stirs, where anger brews, there is joy. Because love remains, and He is near.

Even now, I can say with trembling lips: It is well with my soul. He is God. And He is good.