Tag: family

suffering

Still Here, Already Erased

Hannah

There’s a particular kind of loneliness that comes when you realize people are already grieving you—even though you’re still here.

You can feel it in the way conversations change.

In the pauses that linger a little too long.

In the careful tones, the lowered expectations, the way plans quietly stop including you.

It’s as if, in their minds, you’ve already crossed a threshold that your body hasn’t yet stepped over.

People don’t always do this out of cruelty. Often it’s fear. Sometimes it’s love mixed with helplessness. Sometimes it’s their own attempt at self-protection—beginning the goodbye early so it won’t hurt as much later. But no matter the reason, the result can feel the same: you’re treated like a memory while you’re still breathing.

And that hurts in a way that’s hard to explain.

Because you are still here.

You still think, feel, hope, laugh, get irritated, change your mind.

You still want to be seen as a whole person—not a fragile symbol of loss.

When people grieve you too soon, it can feel like being erased in real time. Like parts of you are being gently set aside, boxed up, and labeled past tense. You notice fewer questions about your opinions. Fewer arguments. Fewer expectations. A subtle withdrawal, masked as kindness.

A dimming of the flames that used to be the most meaningful light to you.

There’s a quiet injustice in that.

Because anticipatory grief may prepare them, but it isolates you.

It can make you feel like you’re standing at your own funeral, listening from the back of the room, wondering when someone will turn around and realize you’re still part of the conversation.

What many people don’t understand is that being alive—even with a terminal diagnosis, even with uncertainty—still means living. It means wanting connection, normalcy, meaning, humor, and sometimes distraction. It means wanting to be included without an asterisk.

Not as “the brave one.”

Not as “the one we might lose.”

Just as you.

There is a deep ache in watching people move on emotionally while you are still doing the hard work of staying present. Of waking up each day and choosing to engage with the world, even as the world quietly practices letting go.

And yet—there’s also clarity that comes from this place.

You learn who can sit with you without rehearsing the ending.

Who can love you in the present tense.

Who understands that honoring your life doesn’t require stepping away from it early.

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.

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.

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.

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!