Tag: MSA

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.

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, 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

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.

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.

faith, Uncategorized

Collecting Scars

Hannah

This week in my reel of photo memories this one popped up…

Immediately the words to Ellie Holcomb‘s song, “Just As Good” started echoing in my mind, where they lingered for the rest of the day. “Oh every ebeneezer points to where my help comes from.”

Who would have thought these painful slices would become my stones of remembrance?

The many scars my body carries tell a story of God’s divine assistance and mercy. Times when I have been wounded, but He has allowed healing. Some scars run deeper than others. Some are still in the process of healing, but all of them come with a story of challenge that was met with grace and healing.

At times I feel embarrassed by my wounds, but reality is that these and other marks paint a connect-the-dots picture of my hard-fought story—right on my own skin. They are reminders that I have lived a life not of safety, but of the opposite. I’ve pushed myself, and I’ve been pushed, sometimes too far, and I would not have it any other way.

When I see my scars, I remember the difficult challenges, and the opening of my hands to surrender to an attitude of trust. I see the reminders of accidents and falls where I couldn’t hold myself up, but I was still held. I see evidence of a plot line that included my defeat, but instead is a story of survival.

I am drawn to the lyrics of the song Scars by I Am They. “So I’m thankful for the scars ‘Cause without them I wouldn’t know Your heart, And I know they’ll always tell of who You are, so forever I am thankful for the scars.”

It takes some hard-fought determination to be able to see these red and white squiggles carved into my flesh as accomplishments, but that is what has gently happened as the number of my scars has ticked up with each passing year.

I can choose to let my scars only remind me of the pain, or I can let them remind me of the scarred hands that payed my ransom.

Tracing my finger over these raised little lines I’m struck by immense truths. A stunning canvas of struggle, embodied suspense. In every imperfection, strength that can be found; the echoes of hardship that shapes my heart and mind to know and trust a good Father who is writing a good story for me.

Please leave me a comment, it lets me know you’re listening!

daily graces

The Most Difficult Gift

Hannah

I love giving gifts, and I enjoy receiving them, yet I struggle to accept one of the greatest gifts offered to me; the gift of receiving. It is a humbling place to exist, needing others’ love and care, and I find it difficult at times. I have realized because of my love of giving that it takes far more grace to receive than it does to give.

After years of priding myself on my strength, being humble is difficult for me. It’s hard to ask for help. Do you find yourself agreeing with me? Yet we are all in need in one way or another; broken and struggling but putting on the best brave face we can muster just to prove we can go it alone.

In this long, loooooong season of needing to accept the help of others I find that the luster of having it all together is wearing thin. I see the depth of brokenness within me and around me, and I long to connect in my brokenness. I long to be known and to know the true hearts of others around me.

At my core I am a doer. A server, a giver, a wear-myself-down-to-nothing all in the name of love kind of girl. Accolades for me, right? What if I told you it’s just a ruse for my pride and need for control? Control that blares I’m not needy, I can do it myself, I don’t need anyone— unless someone needs /me/, and then I’m there.

I have spoken with enough people to know that I am not alone in this. Well, maybe I’m alone in admitting it, but I’m not alone in feeling it.

For 35 years I basked on the pedestal of being able-bodied, capable of doing anything that needed doing. I spent decades believing my purpose was to wear myself out pleasing those around me. I knew the truth, but it was easy to ignore when I had strength on my side.

Culture convinces us that our success is measured by our strength. It’s a bold-faced lie that what we are capable of is what we are loved for. This isn’t living in the truth of the gospel. Thankfully God is continually gracious to keep showing me the sin of my pride and need for control. He patiently loves me back to the foot of the cross and reminds me of my need to be needy and not just needed.

It took the stripping of my strength by this awful disease to expose this to me, and I still have to seek grace often because my heart’s bent is on proving myself instead of letting myself be loved in my neediness. Jesus is breaking me of my strength and showing me the grace to be found in embracing my weakness, and the joy that it gives others who want to help.

I hope that you can find this truth in your own life. Don’t settle for being loved for your abilities instead of being loved for your heart. Resist the temptation to keep yourself busy in order to feel accepted. Look for the ways to slow and find your significance in something more real. Then notice how you find peace and rest in giving others the gift of helping.

Uncategorized

Speechless

Hannah

Here is a graphic about my illness to give you an idea of the things it has, does, and will affect.

Inability to verbally communicate.

I have been a spectator to this with my friend who has ALS, and it is hard. Talk about a massive loss of control. Imagine the amount of having to slow down and let your actions speak louder than your words, or in this case instead of your words.

Over the past few months my voice has begun to weaken. At times it’s raspy, or sounds like I’m hoarse or getting sick. With this new development my speech therapist started the process for me to get an AAC device as an alternative means of communication. Control Bionics and my speech therapist have been wonderful to work with. They were very efficient at getting me set up with a device that will meet my current needs, as well as my needs as my condition continues to change.

At first, life with my AAC was about getting familiar with it and practicing navigating between the pages and words and phrases to best communicate. My device has sensors on the front that either detect my eye movements, or a slight muscle movement of my hand, and it selects the letters or phrases I want to say. It’s amazing we have this kind of technology, and I’m humbly grateful to be able to use it. I even had the opportunity to bank my own voice so that when it speaks for me you will still hear my voice. This part is expensive, but we are looking for solutions!

This past week my voice has taken a turn. One morning I woke up and barely had a voice at all. Some of it returned, but I now sound like a quiet, scratchy record with the occasional skip where nothing comes out at all. Truthfully it’s been a little unnerving seeing how fast I could be plunged into silence.

Hardly anyone can hear me anymore, and the effort and breath it takes to make my voice loud enough to project across a room is exhausting and frustrating. I wasn’t expecting this part to be so hard, but it’s hitting me right in a tender spot I didn’t know I had. I feel panicked to not be able to explain myself, threatened by the thought of not being able to call out and get my kids’ or caregivers’ attention. And if you see me singing along in church I’ve fooled you. I’m lip-syncing.

Another practice in total surrender; in cupping my hands around what’s left and holding out all I have to offer. A chance to do more listening than talking. Another practice in giving up what was and adjusting to what is, and believing that regardless of the journey or the outcome, I am held.