Tag: grief

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.

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!

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.

Infant loss, Uncategorized

Cradled By Heaven

Hannah

October is awareness month for several things, some I can relate to, and some that are not part of my story. Every year I ponder whether there is anything new to say as the calendar declares it is Pregnancy and Infant Loss Awareness Month, and as I’ve pondered that over this past week, it was impressed on me that there are scores of men and women walking afresh in the pain of this sorrow— mourning empty arms and vacant cradles and the fresh waves of pain that are going to come as we move into the season of celebrating family and togetherness. And that makes me want to share my story again and again, because each hurting heart needs to know their pain is seen, their empty space is held, and their future can contain lasting hope.

There are parts of my story I never imagined I’d be the one to write. I never thought I’d be the mother of children I couldn’t raise— that my arms would know both the fullness of love and the emptiness of loss so profoundly.

I’ve walked through the pain of losing two pregnancies, and I’ve held my precious daughter in my arms only to let her go before I was ready— just four and a half months after she was born.

There are no words for what it feels like to love that deeply and to lose that completely. Even now, years later, I can still feel her weight against my chest, and the flutter of my babies being woven together in my womb. But the pages of my story that I expected would be about them remain achingly blank. My heart still catches at that reality from time to time, like a bruise that never fully fades.

Grief changes everything. It changed how I see the world, how I talk to God, how I measure time—not by days and months, but by memories and milestones that never came. There were nights when I couldn’t pray, when I could only weep into my pillow and hope God heard the sound of it. And faithfully, He did.

He met me right there, not with explanations, but with His presence. I used to think faith meant feeling strong, but now I know it’s just trusting God enough to crumble in His hands. It’s believing He is still good when nothing feels good. It’s holding on to the promise that this life isn’t the end of the story.

I believe that my children are whole and alive in the arms of Jesus— and that one day, I’ll see them again. That hope doesn’t erase the ache, but it redeems it. It gives meaning to my tears and purpose to my pain.

I mother them differently now. In whispered prayers. In the way I try to love people more gently. In the way I cling to eternity a little tighter. Heaven holds what my arms cannot, but even here, in the space between what was and what will be, I still find traces of God’s goodness.

If you know this kind of loss too, I want you to hear this:

You are not alone.

Your story matters.

Your child’s life matters.

Even in this heartbreak, God is holding you and your little ones in the same hands. One day, every tear will be redeemed. Every broken hallelujah will turn into praise. And our arms—these aching, waiting arms—will finally be full again.

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.

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.