Tag: Multiple System Atrophy

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Even Here

Hannah

I decided today was shower day. With a broken wrist and low energy, some days are arranged to be less involved than a whole shower, but today it was time for the real thing.

Sitting on my chair in the shower I made a mental note to myself, “figure out how to get pumps for my shampoo and conditioner bottles; it’s getting hard for my hands to squeeze anything out of them.” I didn’t realize I had bigger problems than that.

As I finished up washing and reached up to scrunch the water out of my hair with my good hand, my arm banged back down onto my lap. I tried twice more, but couldn’t lift my arm high enough to squeeze the water from my hair. I decided to just dry off and deal with it outside the shower. Then came the realization that neither could I reach for my towel to dry off. I sat in the shower, dripping wet, unable to do anything for myself, and something broke inside.

Fortunately my husband was close enough by to hear my raspy call for help, and he came to my aid. As he did for me what I had done for myself for at least the past 37 years, tears mixed with the shower water that dripped down my face. “It’s not fair,” I croaked.

The words felt both childish and truer than anything I’d said all week.

This wasn’t how it was supposed to be. I wasn’t supposed to need help with something as basic as drying off. I wasn’t supposed to be this tired, this fragile, this dependent. And maybe most of all, I wasn’t supposed to feel so small—so cracked open by something as simple as a shower.

But there in the tension between frustration and fatigue, my heart whispered what my mouth could not: “Even here, Lord?”

Even here, when my wrist is broken, my body is weak, and my heart is weary?

Even here, when I don’t recognize this version of myself?

Even here, when I feel like more of a burden than a blessing?

And somehow, though He didn’t speak aloud, I felt the answer settle in deeper than my bones: Yes. Even here.

Even here, He is present.

Even here, He is faithful.

Even here, He is not confused about my story.

It’s one thing to trust God when everything makes sense—when my strength is intact, when my routines are predictable, and my body does what I ask of it. It’s another thing entirely to trust Him when nothing is working and I’m wrapped in a towel I couldn’t even reach on my own. It is a hard-fought trust that doesn’t come naturally.

But I’m learning that this is a holy place too.

Not polished. Not powerful. Just painfully human—and held.

There is a strange kind of worship that happens when we let God meet us in our brokenness without pretending we’re fine. When we let the tears fall and still say, “I trust You anyway.” When we acknowledge the ache and still choose to believe He’s working all things for our good.

I don’t understand all He’s doing. I don’t love the limitations. But I know the One who has never wasted pain, never abandoned His people, and never made a mistake. And if He’s allowing this part of the story, then somehow—even this—is being woven into something eternal.

So today, in a soaked towel and salty tears, I’m offering Him what I have: my honesty, my surrender, my broken trust trying to be whole.

Because even here, He is worthy.

Even here, He is good.

And even here, I still believe He knows exactly what He’s doing.

grief

Bingo, Ice Cream, and the Bitter Gift of Missing Out

Hannah

For several weeks I have been looking forward to this past Sunday. It was a chance to not only go to church in the morning, but then in the evening it was our quarterly meeting plus Ice cream and bingo, and I was excited to see so many of my people. And then MSA.

It didn’t take long to recognize that I was going to have to choose wisely what to use my energy on that day. Pain has been searing out of control more often than not lately, and Sunday morning there was no reprieve. I decided I had a better chance of making it Sunday night if I stayed at home and watched the morning service online, which I did, and then rested throughout the day.

As afternoon faded into evening however, it became clear that my body was not going to tolerate a car ride or anything else. The plans I had so carefully paced myself for began to crumble before my eyes. And with that, came the sting of disappointment—sharp and real.

I wish I could say I shrugged it off with grace, that I whispered a quick prayer and moved on. But instead, I wrestled with it. I grieved the loss of what felt like a lifeline that day. I missed my people. I missed being in the room, surrounded by familiar laughter and shared stories and the simple joy of ice cream and bingo. I missed being seen.

That’s the thing about disappointment—it sneaks in and tries to convince you that you’re forgotten. That everyone else is moving on without you. That your suffering sets you apart in the worst way.

But here’s where faith steps in and steadies the soul.

God doesn’t minimize our losses, and He doesn’t rush us through our grief. He meets us right in the ache. As I sat alone in my living room that night, I remembered the One who never misses a moment. The One who knew I would be here, again. The One who catches every tear and counts every pain-ridden hour as precious.

Crushing disappointment doesn’t get the final word. Not when we serve a God who promises beauty for ashes and joy in the morning. Not when He reminds us that He is our portion, not a perfect evening, not our best-laid plans. Him.

So, I went to bed that night not having seen the people I love, not having laughed over silly bingo cards, not having been part of the fellowship I was so looking forward to. But I went to bed held. Known. Carried. And even in the disappointment, maybe especially there, I was not alone.

And that’s enough.

grief

Trusting God as the Table Changes

Hannah

Despite often not having much of an appetite, that has not slowed my consumption of Ben & Jerry’s ice cream, or homemade yogurt, or anything really that resembles the flavor of a pickle. Until today. It was a waffle. A delicious, crisped-to-perfection sourdough waffle with butter and syrup was the red flag that put a stop to eating as I knew it. Truthfully I had noticed over recent weeks that bites were getting caught in my chest and being stubborn to go down, but I had been dismissing it as too big of a bite, or not enough chewing. That was wishful thinking. After a brief check-in with my speech therapist, she confirmed that the dangers of eating by mouth now outweigh the benefit. Fortunately for me I have already had feeding tubes placed for a few years now as my inability to absorb nutrients became a bigger problem. 

So this isn’t entirely unfamiliar ground for me. Still, hearing those words—that food by mouth is no longer safe—hit me in a way I didn’t expect. It’s not just about waffles or yogurt or pickles. It’s about the little pleasures, the ordinary gifts I’ve often taken for granted. The lit candles at my dinner table. The joy of sitting down to eat with others, the taste of something warm and comforting, the way food brings people together. That chapter is closing, and I find myself grieving the loss of it.

But grief, for me, never has the final say.

As I sat with this news today, a quiet truth settled in my heart: I am not sustained by waffles. I am not even ultimately sustained by feeding tubes. My sustenance comes from the Bread of Life—Jesus Himself. He alone satisfies the deepest hunger of my soul. The world may see this as loss, but in Him, there is gain. Not in a shallow, “look on the bright side” kind of way, but in a rooted, unshakable truth that His grace is sufficient for me—even here.

Scripture tells us, “Though outwardly we are wasting away, yet inwardly we are being renewed day by day” (2 Corinthians 4:16). My body may be failing, piece by piece, but I am being upheld, day by day, by the One who does not grow weary. I have tasted and seen that the Lord is good—and that is a flavor I will never have to give up.

So while I may no longer get to enjoy the crispy edges of a sourdough waffle, I rest in the promise of a coming feast—one prepared for me by the King Himself, where no illness, no brokenness, and no feeding tubes will ever be needed again.

Until that day, I will keep showing up to the table of His grace. Because He still meets me there.

suffering

Today

Hannah

Head throbs,

Spasms pulse.

Nausea ebbs and flows in great waves,

Pain spins up to 8 and then ticks back down to 4.

My mind fights my body with its will to get up and participate, move, live.

The weight of fatigue grips my limbs like wet sand,

Every breath a labor, every step a gamble.

The world outside carries on, brightly unaware,

While I drift beneath its surface, unseen currents pulling.

Hope is not always loud.

Sometimes it whispers in the quiet:

a hand held,

a laugh shared,

the sun warming my windowpane.

There are days I curse this vessel,

days I retreat into silence and salt,

but also moments—sharp and golden—

where love slices through the fog.

I do not vanish all at once.

I am still here:

in the tremor of my voice,

in the stories I still tell,

in the soft rebellion of surviving today.

Memories

Where Memory and Mercy Meet

Hannah

Tonight, I was caught in the quiet pull of old photographs, each one a window to a world that felt softer, lighter. I lingered in the hush of memory—bare feet on sun-warmed pavement, sticky fingers clutching melting popsicles, laughter rising like fireflies into a dusk that never hurried. The days before my family knew the heavy grief of suffering through the progression of a fatal illness.

Grief has a way of sharpening our memories. It turns the past into a soft-lit place where pain had not yet knocked at the door. And tonight, I felt that ache—the ache of before.

But as I sat there, surrounded by memories frozen in time, the Lord gently reminded me: He was with us then, and He is with us now.

Hebrews 13:8 says, “Jesus Christ is the same yesterday and today and forever.” While everything around me has changed, He has not. The God who gave us the joy of long summer days and laughter echoing down the hallway is the same God holding us steady in the storm of uncertainty. He does not abandon us in our sorrow; He walks with us through it.

And so, while my heart longs for what once was, I’m learning to give thanks for the beauty that still is. Even in the midst of heartache, there are glimpses of grace—quiet moments of strength I know I didn’t conjure on my own. There’s peace that surpasses understanding, not because life is easy, but because Jesus is near.

These old pictures remind me not just of the sweetness of the past but also of God’s faithfulness throughout the years. I don’t know what tomorrow holds, but I know the One who holds tomorrow—and He is good.

So I’ll hold onto that. I’ll grieve, I’ll remember, and I’ll trust. Because our story isn’t just framed in photographs—it’s being written by a God who redeems, restores, and never lets go.

Mothers Day

This Mother’s Day

Hannah

I remember being in church the first Mother’s Day after burying my daughter and not being able to contain my sobs as the pastor shared a special tribute to mothers, and I didn’t feel like celebrating at all because I had stood at the edge of eternity and watched a piece of my motherhood be torn from my arms in an instant.

I remember the Mother’s Day after my first miscarriage and how I grieved over having been thrilled to add another arrow to our quiver, only to watch that dream bleed out through the cracks in my heart.

I remember the Mother’s Days during our seasons of infertility, and how I fought to not entertain bitterness toward the expecting mamas in my life because I was crippled by the thought of never being able to expand our family.

I remember the Mother’s Day following our season of foster care, and how I had seen our story being very different from the reality we were living.

I remember Mother’s Day as a child and how the only thing on my mind was the special craft I’d made for my mom, or the flowers I’d picked her, and how this day of celebration felt a whole lot less complicated and emotional back then.

This Mother’s Day I remember that there are those of you all around me that are living out various versions of broken stories that have wounded your dreams and experiences of motherhood, and I see you standing there. I see how this day of celebration comes with so many convoluted emotions; deep grief and heartfelt thankfulness and hopeful expectation. I know that some of you are holding your breath waiting to turn the calendar page to Monday, and that’s ok.

I know today may be especially hard, and I just want you to know that you’re not alone. I pray that God gives you comfort, peace, and strength as you carry both extravagant love and crushing sorrow in your heart. Your pain matters, and so does your story. Allow Him to use these painful and uncertain days to strengthen your trust in Him, to surrender your need for control, and to open your hands wide to the good-hard story that He is writing through you. I promise you it’s worth it.

faith

Even When it Hurts

Hannah

My tendency toward binge-blogging is apparent again. 🙃 There is just much on my mind I want to get out somewhere productive.

As I mentioned in an earlier post, Easter weekend marked a foundational shift in my soul. I wanted to feel sorry for myself. I wanted to mope in feeling unseen and misunderstood. Instead, what could have been a morose, lonely weekend bloomed into one of the most transformative times of self-reflection and sacred dialogue I’ve ever experienced.

I started to say that I took my hurts to God, but the truth is I chose to sit with them, feeling pity for myself, and my Heavenly Father reached out to me. And in the thick silence of that weekend, as I grieved over the story I couldn’t possibly have imagined for myself 20 years ago, I saw myself and my life journey with more clarity than ever.

The truths I realized that weekend are too revolutionary to keep to myself. I realize that the fact that it took me this long to see myself with this kind of God-gifted understanding surely means that there are others needing to hear these truths as well. So on the days that the weight of your hard story feels like it will crush you into oblivion, whisper these words to your beaten soul, scribble them in your journal, tuck them deep into the hollows of your heart, and remind yourself over and over again until you have the strength to believe it.

God chose to leave you in this broken world—to live, to love, to struggle—not as punishment, but with purpose. The hardship you face isn’t pointless; it’s the very tool he is using to shape something in you that comfort never could.

He is at work in your pain, not to crush you, but to change you—to rescue you from the parts of yourself that hold you back from life as he intended it. And because he loves you deeply, he is willing to let go of your temporary happiness if it means drawing you closer to lasting wholeness.

God is unwavering in this mission. He’s not distracted. He hasn’t forgotten you. He’s committed—to your transformation, to your redemption, and to your good, even when it hurts.

community

When the Doorbell Doesn’t Ring: The Quiet Abandon of Terminal Days

Hannah

When you’re first diagnosed with a terminal illness, there’s often a flood of support—texts, calls, check-ins, care packages. People cry with you. They tell you they’re here for anything. They swear they won’t disappear.

Time moves on. So do they. There are seasons to our lives, and some people who may have been able to be more present in the beginning do not have the time and flexibility in this next season they are in. Perhaps others who weren’t available initially are now able to be more present as they enter a slower season of life.

What no one tells you is that terminal illness is not a straight descent. It’s a long, unpredictable goodbye filled with plateaus and crashes, slight recoveries and devastating setbacks. It’s not dramatic enough to be a crisis every day, and not gentle enough to be forgotten. It exists in this in-between space that makes people uncomfortable—too serious to ignore, too exhausting to engage with endlessly.

And in that in-between, some people begin to vanish.

Some friends disappear because they don’t know what to say. Others because they think you’ve stabilized and assume you’re doing better. Some perhaps can’t add anything else to their plates. Life, after all, goes on for them: promotions, vacations, weddings, baby showers. They’re not bad people—they’re just busy, or scared, or shy, or not able to confront your pain when they have the luxury of avoidance.

You sit in your room watching the seasons change. Spring arrives with its blossoms and pollen, and you wonder why it feels so far away. Summer blazes through with parties and long days, and you’re still in bed, waiting for a reply. Autumn colors the trees as your medications increase. Winter comes, and it’s the coldest one yet—not because of the weather, but because no one showed up for the last holiday. Or your procedure. Or just to sit with you.

Illness is isolating. Terminal illness is devastatingly lonely.

There are moments when you ask yourself if you’ve done something wrong. Were you not a good enough friend? Did you ask for too much? But deep down, you know this isn’t about blame. It’s about the raw truth that few people are prepared to walk with you through a slow, uncertain ending. <== Read that sentence again.

Still, not everyone leaves. There are those rare few who show up without needing to be asked. They don’t bring solutions—they bring presence. They don’t always know what to say, but they sit beside you anyway. Sometimes they bring coffee. Sometimes they just bring quiet. And their presence, however brief, becomes a form of medicine.

If you’re in this season of illness and loneliness, know this: you are not invisible. Your pain is real. Your courage, even when it looks like just getting through another hour, matters. You deserve community, not because you are dying, but because you are still here to be a part of it.

To those watching from the sidelines—don’t disappear. Show up. Even imperfectly. Especially imperfectly. You don’t need the right words. You just need to be willing to stand beside someone in their most human, most difficult season.

Because in the end, what heals us most is not the cure, but the connection.

Uncategorized

The Letters

Hannah

I probably should have started with this before my last post, because I’ve gotten some concerned responses. I am still here for every single moment ordained for me!

That being said, God has also been working in my life to prepare me for my Heavenly home. If I could write a letter to each one of you I would. So many of you are my prayer warriors and faithfully encourage me through the highs and the lows of my story. Since I can’t reach out to each of you individually, I’m going to be using my blog to write some letters to my people, so that each person will have the chance to hear my heart, and easy access to it. So please don’t despair when you see me posting the things I’m carrying in my heart. Know they are meant to be treasured by you, where you can return to them again and again.