Tag: grief

Terminal

Drifting

Hannah

There was a time when they were the new couple. The friendly girl, not afraid to take on a bleak prognosis, and her wingman, always at her side helping her along.

Then things started to change. The wingman was often tied up elsewhere, and eventually wasn’t available to purse the same life she did, so she continued showing up on her own, often with a kid or two in tow. And then that dwindled too, the kids stopped wanting to get up on Sunday mornings, pushing back against beliefs they once embraced.

The girl continued to push herself to be there, sometimes through difficult obstacles. A wheelchair ramp that often did not work. A car door that jammed half the time. But instead of resolution, she had to soldier on in the best way she could, piecing things together to work so she could still show up.

Being in that place made her come alive, surrounded by likeminded friends journeying together. Eventually though, even that got too hard in a body that was fighting against her in every way.

She hoped that the community she worked hard to build around her would continue to surround her in this new season and new capacity, but things grew quiet.

When she tried to use her gifts in the ways she still could, she was nothing more than an inconvenience. Where her phone used to light up if she left a vacancy in the front row, it now sat gray and silent, as if the empty space had simply backfilled in her absence.

The walls of her room that used to echo with presence and laughter now felt more like walls of a prison, as visits became fewer and further between. Still she clung to the hope that her heart and her home would be full as she journeyed toward Home. Then came the realization that this road was going to end just as lonely as it had begun.

But that wasn’t the whole truth—just the part she could see.

Because somewhere along the way, she had quietly started measuring love by footsteps and phone calls… by who showed up and who didn’t. And while those absences were real and painful, they were never the full accounting of her life.

What she couldn’t always feel—but had not lost—was presence.

Not the loud, bustling kind that fills a room on a Sunday morning. Not the kind that depends on functioning ramps or willing friends. But the steady, unrelenting presence of a God who does not require her to “get there” in order to be near.

In the stillness of that room, where the walls sometimes felt too close and the silence too loud, there was Another who had never once failed to enter in.

The One who saw every effort it took just to show up.The One who noticed when no one else did. The One who did not measure her faith by attendance, but by endurance.

And maybe—though it took time to admit—her life was not a story of abandonment, but of being held in ways she didn’t expect.

Because the truth is, community can falter. People can disappoint. Even the most well-meaning hearts can drift when life gets busy or uncomfortable or unfamiliar.

But God does not drift.

He sits beside hospital beds and wheelchairs.
He remains when invitations stop coming.
He speaks in quiet when the noise of life fades.

And He does not wait at the finish line—He walks every inch of the road. So while it may have looked like her story was ending the way it began, heaven would tell it differently. It would say she was never unseen.
Never unsupported. Never alone.

It would say that every hard step she took toward Him that felt unseen mattered more than a hundred easy ones taken in comfort.

And it would remind her—gently, faithfully—that “home” was never something she had to gather people to reach. It was always where He was. And He had been there all along.

Uncategorized

Leading my Limits

Hannah

When I opened my arms wide to welcome in a community that would keep us afloat on the days we need it, and hold us up on the days we are too frail, I also opened my arms to a whole range of perspectives, experiences, and opinions. It stands to reason that with so many different brush strokes making up my tribe, there will sometimes be tension when considering my situation.

I am a terminally ill young(ish) mom, wife, medical professional, friend, and relative with an awful lot of people who care deeply about me and want the best for me. And each of those “best wishes” is shaped by that person’s own knowledge, fears, and life experiences. I’m genuinely grateful for that—it means no stone is left unturned, no possibility ignored, no concern left unspoken. That kind of care is a gift.

But if I’m honest, it can also be a lot to carry.

I have been offered the full spectrum of doctors’ names and specialties, an impressive number of healing stories shared from personal experience, and a wide array of remedies that are “sure to help”—from expensive teas and elaborate oils to unconventional rituals and everything in between. Each suggestion is given with love. I know that. I feel that.

And still… it can be overwhelming.

Because underneath all of it is an unspoken assumption: that I might not be doing enough, considering enough, or protecting myself well enough.

The truth is, I am living inside this body every single day. I am the one weighing the risks, measuring the energy costs, and deciding what is worth it and what is not. I am constantly calculating—what will give me more life, and what will simply take more from me.

I need the space to do that.

I need the freedom to say, “Thank you, but no,” without feeling like I am letting someone down or missing something critical. I need permission—not from others, but from myself—to trust my own judgment.

Because I am not passive in this. I am not unaware. I am not neglecting my care.

I am choosing, very intentionally, how I spend what I have.

Sometimes that will look like pursuing treatment. Sometimes it will look like resting. Sometimes it will look like saying yes to something that feels worth the risk, and other times it will look like protecting my peace at all costs.

All of those choices are valid.

So if you are someone who loves me—and I know you are—please hear this gently: your care means everything to me. Your suggestions come from a place of compassion, and I don’t take that lightly.

But the most supportive thing you can offer me is trust.

Trust that I am listening.

Trust that I am thinking.

Trust that I am choosing with both wisdom and intention.

And trust that I know, better than anyone else, what my body and my life require in this season.

Walk with me. Sit with me. Pray for me. Laugh with me.

But please, let me lead when it comes to my own limits.

Uncategorized

15

Hannah

Today you would be fifteen.

Fifteen feels big. It feels loud and bright and full of opinions and music and friends and late nights in the kitchen. Fifteen feels like learning to drive soon. Like strong emotions and stronger convictions. Like figuring out who you are. And that precious part of mother/daughter relationships where you become friends who enjoy each other’s company.

And I don’t get to know who you would have been.

That’s the ache.

I don’t know if you would have loved sports or books. I don’t know if you would have been bold or quiet, stubborn or soft. I don’t know what your laugh would sound like as a teenager, or what kind of friends you would choose, or whether you would roll your eyes at me when I tried to hug you in front of them.

There is a particular grief in the unknown.

When you died at nearly 5 months old, I grieved the baby in my arms. But as the years pass, I grieve the girl you never got to become. The birthdays that don’t come with cakes. The school pictures that were never taken. The conversations we will never have on this side of heaven.

And yet — this is not a hopeless day.

Because while I don’t know who you would have been here, I know exactly where you are.

You are not frozen at four months old. You are not missing out. You are not wandering or waiting or wishing for what might have been.

You are fully alive in the presence of Jesus.

You are safe. Whole. Held.

There is a security in that. A steadying under the ache. My arms were only meant to hold you for a short time. His were always meant to hold you forever.

Sometimes people ask how I reconcile the grief with the faith. The truth is, I don’t reconcile it. I carry both. I carry the longing to see your face at fifteen, and I carry the unshakable hope that the first face you see every day is the face of our Lord.

Scripture tells us that to be absent from the body is to be present with Him. That promise has been an anchor for me. Not a cliché. Not a platitude. An anchor.

I still wonder about you. I still imagine you. I still feel that flicker of curiosity about the young woman you might have been.

But I don’t have to wonder about your eternity.

And that changes everything.

Today I will probably cry. I will probably smile at memories of your baby cheeks and the way your tiny hand wrapped around my finger. I will probably whisper “happy birthday” into the quiet.

Fifteen.

I love you just as fiercely as I did the day you were born. That love did not shrink with your lifespan. It has stretched across years and heaven itself.

One day, there will be no more wondering. No more imagining. No more “what if.”

Only reunion.

Until then, I trust the One who loves you even more than I do.

Happy birthday, my girl. You are deeply missed. And you are eternally secure.

Multiple System Atrophy

I wish I could pick

Hannah

This morning I sat perched in my bathroom and let out a raspy wail. “Ugh, I just wish I could plan a fun and special thing and not have this disease wreck the day and ruin it for me!” My “woe is me” meter was on full tilt as I lamented the evening I had conjured up in my head, even though I still had a solid eight hours until go time.

That’s right where the enemy would have us be, isn’t it? Catastrophizing every ordinary miracle today has to offer because we haven’t taken a moment to stop, give thanks, pray for mercy, and trust that our good Father wants us to experience the good parts just as much as we want them ourselves.

I realized, as I sat there staring at my own tired reflection, that I had already decided how the day would end before it had even begun. I had written a story of disappointment, frustration, and limitation — and then handed it the microphone before God even had a chance to speak into it.

How often do we do that?

We trade possibility for prediction.

We surrender joy to fear.

We allow what might happen to rob us of what is happening.

Illness has a way of shrinking the horizon. It teaches you to measure life in energy units, in symptom flares, in “maybe” and “we’ll see.” But what it doesn’t get to do is dictate where hope lives. That part still belongs to God. And, if I’m honest, sometimes it belongs to my willingness to loosen my grip on expectations.

The truth is, special moments have rarely unfolded the way I imagined them even before sickness entered the room. The most meaningful memories in my life were almost always disguised as interruptions, detours, or completely rewritten plans. Somehow, God has always had a way of sneaking beauty into spaces I was convinced were ruined.

So I sat there and did the only thing I knew to do. I prayed a very unpolished, very honest prayer.

“Lord, I’m scared this day will fall apart. I’m frustrated that my body feels like it has veto power over things my heart longs for. But I trust You more than I trust my fears. Help me to receive whatever today holds — the joy, the disappointment, the laughter, the fatigue — as something You can still use for good.”

Peace didn’t rush in like a tidal wave. It rarely does. Instead, it trickled in like a slow drip from a faucet that someone finally remembered to turn off. My shoulders softened. My breathing steadied. The day didn’t suddenly become guaranteed or predictable, but it became held. And that is often better.

Maybe the miracle isn’t that our plans go perfectly.

Maybe the miracle is that joy can still show up in imperfect circumstances.

Maybe the miracle is that God wastes nothing — not the setbacks, not the symptoms, not even the bathroom floor meltdowns before noon.

I don’t know how tonight will unfold. If I’m honest, part of me still wants to script it, control it, and protect it from disappointment. But I’m learning that tightly gripping expectations often squeezes the life out of the very moments I’m trying to preserve.

So today, I’m practicing open hands.

Open hands to receive whatever strength God gives.

Open hands to release whatever I cannot control.

Open hands to hold joy gently, without demanding it perform perfectly.

If you’re living in a body, a season, or a circumstance that feels unpredictable, maybe this is your reminder too: you are allowed to hope without guarantees. You are allowed to celebrate even when outcomes feel uncertain. You are allowed to believe that goodness can coexist with limitation.

Our Father is not waiting at the finish line of a perfect day to meet us there. He is walking beside us through the messy, rewritten, grace-filled middle of it all.

And sometimes, that is where the best parts are hiding.

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.

Friendship, Uncategorized

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.