Author: Hannah

Uncategorized

Who Remains

Hannah

As my illness has not so quietly crept into new areas, the clear, trustworthiness of my world that was semi-predictable has faded as well. Despite what my energetic heart and mind have had planned, my body is simply not getting the message, often doing the opposite of what I’m asking it to. This was especially evident this past week.

Sunday I slept through most of the sermon and parts of worship. Again. It had been a tiring week—being in the middle of a 2 week stretch where my husband was traveling, but I honestly felt like I got a decent night’s sleep on Saturday. My fatigue continued though, and I found myself either missing things, or having to cancel plans because my body was determined to sleep more whether or not I was at an event or behind the wheel.

Tuesday a dear friend came over to visit. After just a few minutes chatting I dozed right off mid conversation . I jostled awake shortly, and profusely apologized for my rudeness. My friend was as gracious as could be. The next thing I knew I awoke a significant time later to my friend still sitting at my bedside. She had brought her Bible, and as she read she took notes that she compiled into a beautiful and encouraging 3 page letter that she gifted to me on her way out. I was sad and upset that I had missed out on visiting with her, but her words were a gift to my heart.

“Please don’t be embarrassed. It was an honor you let me in today and I enjoyed the time by your side even if it was a quieter visit. Love you!”

I had another friend visit recently with her kids in tow. The littles sat at the dining table and kept busy while their mama and I visited. I didn’t even realize I was sleepy until I startled awake to see her hustling her littles quietly out the front door.

That moment sat heavy with me long after the door shut. Not because she was unkind—she wasn’t. She was trying to be considerate. Trying not to embarrass me. Trying not to wake me. But what I woke with was the reality of it all. The quietness of it. The careful escape. The unspoken understanding that the visit had suddenly become awkward and there was no graceful way to recover it.

Illness has a way of turning normal interactions into strange little social negotiations nobody knows how to navigate. That may be one of the loneliest parts of this illness for me lately—not just the symptoms themselves, but the way they alter the atmosphere in a room. The way people start adjusting around me. Whispering around me. Watching me carefully. Exiting cautiously.

I know the people who love me are doing their best. I know they aren’t judging me cruelly. But it is still difficult to repeatedly become the unexpected thing everyone has to accommodate. I miss being easy to be around.

My friend who stayed while I slept gave me a gift I didn’t even know I needed; the gift of presence.

Not fixing.
Not rescuing.
Not trying to force the moment to be less uncomfortable than it was. Just staying.

There is something profoundly Christlike about that kind of love. The kind that does not flee weakness or rush past suffering, but settles beside it without demanding it hurry up and become easier.

I think so often I have imagined God’s love primarily through the lens of intervention—that if He loved me, surely He would fix this. Relieve this. Wake me up from this exhausting fog my body keeps pulling me into. But lately I am beginning to wonder if sometimes His love looks less like removal and more like companionship. A God who remains.

A God who is not embarrassed by my limitations. Not irritated by my weakness.
Not awkwardly slipping out the front door because He doesn’t know what to do with me.A God who stays at the bedside.

Maybe that is why the presence of faithful friends has ministered to me so deeply in this season. Because every quiet act of patience, every unhurried moment, every person willing to sit in the strangeness of this illness without recoiling from it—they are reflecting Him back to me in ways I desperately need.

Not every act of love looks dramatic.
Sometimes holiness looks like simply staying when it would be easier to leave.

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.

suffering

Life in the Margins

Hannah

Someone recently asked me what my favorite tangible thing is. It gave me pause, because I don’t think I’ve stopped to wonder over that question, but the answer was clear. My pink journaling Bible.

It’s hard to explain, but my pink art journaling Bible isn’t just a book to me—it’s the place where my life with God has actually taken shape in a visible, tangible way.

Every page holds more than printed words. It holds prayers I’ve prayed when I didn’t have the strength to say them out loud. It holds questions I’ve wrestled through, verses that steadied me, and moments where something finally “clicked” and I knew God was speaking to me personally. The notes, the colors, the artwork—they’re not decoration. They’re a record of relationship.

Over time, it’s become a kind of memorial. I can flip back and see where I was struggling, where I was growing, and how God met me in those exact places. It reminds me that He’s been faithful, not just in general, but to me—specifically, consistently, and patiently.

It’s also one of the few places where I’ve been completely honest. No performance, no editing—just me showing up as I am. That makes it deeply personal in a way that’s hard to replicate anywhere else.

So when I say it’s my favorite tangible object, it’s not about the Bible itself being pink or artistic—it’s because it carries the history of my walk with God. It’s worn in all the right ways. It’s lived in. And it reminds me who He is, and who I am in Him.

Multiple System Atrophy, Uncategorized

Losing Vision, Finding My Offering

Hannah

If you watched my video this week about getting new glasses, you undoubtedly noticed its lighthearted tone . I try to add an underscore of humor to all of my videos there, since the goal is education and awareness about MSA, not to garner pity or sad feelings from people. In reality, this latest change for me has been a little more heavy than humorous.

It started when I noticed my vision had pretty rapidly gotten very blurry. I wondered if it was a side effect of one of my medications, or if the slight glasses prescription I already have needed to be updated. When I went in for an eye exam, I learned it was neither. The reason for the profound vision loss I was experiencing was because my disease has weakened the muscles controlling my eyes so much that the blurriness I have been noticing is actually me seeing double.

The doctor that saw me that day was so compassionate and kind-hearted; I could tell he truly cared about my situation and wanted the best outcome possible for me. I sat staring through the giant robot-thingie while he dialed in lens after lens, trying to make it strong enough to correct my vision. It got better— the two birthday candles that started a few hand widths apart from each other moved in closer and closer, but even at top strength the candles never merged into one.

So I left the office with a new pair of thick bifocal glasses, feeling very much like the rug had been yanked out from under me by this new development that had not even been on my radar. And truth be told, even with my new specs there is a lot that has been lost as far as what I can see in detail, which in turn affects what I can do.

It was a disheartening blow at first, that left me wondering what I had to offer now. My Etsy business would be affected, my art, my writing… what was left for me to give to the people I love and care about?

For a little while, my mind went to the same place it always used to go when something was taken away from me: What am I still useful for?

Illness has a way of asking that question over and over again. Every new limitation feels like another subtraction sign—another thing crossed off the list of what you once could do.

And if I’m honest, I realized something in the middle of that discouragement: somewhere along the way, I had quietly started believing that my value to God and to other people was tied to my abilities. My productivity. My output. What I could make, build, write, organize, or contribute.

But that has never actually been the way God works.

God never needed my abilities.

He never needed my Etsy shop, or my artwork, or my words, or my capacity to juggle responsibilities and keep producing things that look impressive on the outside. None of those things were ever the offering He was asking for.

What He wanted was always much simpler—and much harder.

He wanted my heart.

When I started reading through Scripture again with this in mind, it was everywhere. Over and over, God makes it clear that He is not impressed with human strength or skill. In fact, He seems to go out of His way to work through weakness.

He chose shepherd boys, stutterers, widows with two coins, fishermen with no education, and people who openly admitted they were afraid and inadequate. Again and again, God reduced the resources so that no one could mistake where the power came from.

Which means my declining abilities are not a surprise to Him.

They don’t disqualify me.

If anything, they strip away the illusion that I ever had something impressive to bring to the table in the first place.

The truth is that my offering was never supposed to be what I could do.

My offering was always supposed to be me.

My trust.

My willingness.

My obedience in whatever small space I’m given today.

The older I get and the more this disease takes, the more God keeps narrowing things down to that single point: Will you still give me your heart when the things you used to rely on are gone?

And the surprising thing is that there is actually a lot of freedom in that question.

Because if God only wanted my abilities, I would eventually fail Him. Bodies break. Energy fades. Vision blurs. Talents come and go.

But if what He wants is my heart, that is something illness cannot take away.

Even on the days when my eyes won’t cooperate, when the candles refuse to merge into one clear image, when I can’t do half the things I used to do… I still have something to give.

I can still choose to trust Him.

I can still choose to love people well.

I can still offer the small, quiet faithfulness of a life surrendered.

And maybe that was the lesson hiding inside this unexpected trip to the eye doctor.

My vision may be fading in ways I never anticipated.

But in a strange way, the picture itself is becoming clearer.

God never needed my abilities.

He just wanted my heart.

Multiple System Atrophy

Losing Vision, Finding my Offering

Hannah

If you watched my video this week about getting new glasses, you probably noticed the lighthearted tone. I try to keep humor woven into my videos because the goal is education and awareness about Multiple System Atrophy (MSA)—not to make people feel sorry for me.

But the truth is, this latest change has felt a little heavier than humorous.

It started when I noticed my vision had gotten blurry very quickly. I wondered if it might be a side effect of one of my medications, or maybe my slight glasses prescription just needed updating. When I went in for an eye exam, I learned it was neither.

The reason for the vision problems was that my disease has weakened the muscles that control my eyes. The blurriness I was experiencing wasn’t actually blur at all—it was double vision.

The doctor who saw me that day was incredibly kind and compassionate. I could tell he genuinely cared about what I was facing and wanted the best outcome possible for me. I sat there staring into the giant robot-looking machine while he dialed lens after lens into place, trying to make the prescription strong enough to correct my sight.

It got better.

The two birthday candles that started several hand widths apart slowly moved closer and closer together.

But even at the strongest setting… they never merged into one.

I left the office with a pair of thick bifocal glasses and the unsettling feeling that the rug had just been pulled out from under me. This development hadn’t even been on my radar. And the truth is, even with the new glasses there is still a lot that has been lost in terms of what I can see clearly—and that affects what I can do.

At first it was a discouraging blow.

My Etsy business could be affected. My art might be harder. My writing could become more difficult. I found myself wondering a question that probably sits quietly in many of our hearts at one time or another:

What do I have to offer now?

When our abilities begin to shrink, it’s easy to feel like our usefulness is shrinking too. Our culture trains us to believe that our value lies in our productivity, our skills, our accomplishments, and the things we create.

But the longer I walk this road, the more I realize something important:

God has never asked me to offer Him my abilities. He has always asked for my heart.

In the Old Testament sacrificial system, people brought offerings to the altar—animals, grain, oil, wine. But even then, God repeatedly reminded His people that the physical offering wasn’t the thing He truly desired.

He wanted their hearts.

Scripture says that “a broken and contrite heart… you will not despise.” (Psalm 51:17)

In other words, the offering God values most is not what we produce, but who we surrender.

That realization has been quietly reshaping the way I think about loss.

If my art becomes harder… I can still love people.

If my business slows down… I can still encourage someone.

If my vision fades further… my heart can still belong completely to God.

None of those things require perfect eyesight, steady hands, or impressive talent.

They simply require willingness.

So maybe the question isn’t “What do I still have to offer?”

Maybe the real question is:

“Am I willing to place my heart on the altar?”

Because that offering never becomes obsolete.

It never weakens with disease.

It never diminishes with age or limitation.

And it is the one offering God has always wanted most.

So if your abilities feel smaller than they used to… if illness, loss, or circumstances have taken things from you that you once used to serve others or serve God… take heart.

Your most valuable offering has never been your strength.

It has always been you.

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.