Tag: hope

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.

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.

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.

faith

Between Fear & Forever: A Mother’s Honest Wrestling

Hannah

This week I listened quietly as my youngest talked about how differently his life is going to look in the coming months as our family is growing and changing, and one of the things he included was the absence of me in his life. He quickly realized what he had just said to me and began backpedaling, trying to assure me that’s not what he meant, and that I was still included in his equation of the days in front of him. It was too late though; like toothpaste squeezed from the tube, the words couldn’t be stuffed back from existence.

My thoughts began racing. Fight or flight kicked in, and I definitely chose fight. Fight for more days, more time. Fight for presence at all the important life events he’s going to want me at. Fight to be here so he doesn’t have to imagine a life without me. And then… like a rush of calm water, a peace came over me and I heard, “this place is not your home. All of these things, these moments, are temporary at best.”

Heaven is my true home.

Then just as fast as the peace washed over me, a wave of fear knocked me from my feet. What if Heaven isn’t really real? What if we’ve made it all up to comfort ourselves, but this is all there is? Panic ensued again, but this time as I shared my thoughts with a trusted friend she spoke the truth to me so lovingly: “Don’t you listen to that. Those are lies from the devil himself.”

Her words settled over me like a warm blanket pulled up to my chin in the dark — not removing the night, but reminding me I am not alone in it. And slowly, breath by breath, the panic loosened its grip. Because fear may shout, but truth always speaks in a steadier voice.

I thought again of my son, of his unfiltered honesty, of the way children sometimes say the quiet parts out loud. And I realized it wasn’t cruelty — it was simply the collision of innocence and reality. He is trying to imagine a future that feels unimaginable. So am I.

But maybe this is where faith becomes more than a word we say in church or a verse embroidered on a pillow. Maybe faith is choosing, in the trembling middle of unanswered questions, to set my weight on the promises of God — not because I feel brave, but because He is faithful.

Heaven is real, not because I can prove it, but because the God who has carried me this far has never once let His character contradict His compassion. I see hints of forever in the kindness of friends, in the way grief and hope can coexist in the same breath, in the way my child still reaches for me even as he learns to release me.

I don’t know how many more ordinary mornings I’ll get to witness or how many milestones I’ll still be present for. But I do know this: love leaves a imprint that death cannot erase, and mercy writes a story that continues long after my final chapter on this side of eternity.

So I will keep fighting for the days I’m given, but I will also practice loosening my grip — trusting that the God who holds my future also holds my family, with a tenderness that outlasts time itself.

And when fear rises like a tide, I will remember:

this world is not my home,

but neither am I abandoned in it.

There is a Savior who meets me in the trembling,

steadies my steps,

and whispers the truer story —

one where love has the final word,

and where every goodbye is only temporary.

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!

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

Brave Was Never the Plan

Hannah

I had a new nurse come visit me last week. He was honest, kind, and thorough — asking all the usual questions about my medical history; the twists and turns that brought me here. I’ve learned to tell that story in pieces now, almost like reading from a well-worn script. When I finished, he sat back in his chair and said softly, “You’re really brave.”

He said it again before he left. And I smiled, but inside I felt a strange ache. Because I don’t feel brave. Not even close.

Most days, I feel like I’m just hanging on for dear life — doing the next thing because there is no other choice. Take the medication. Show up for the appointment. Face the pain. Rest. Repeat. There’s nothing glamorous about it, and most of the time, it doesn’t feel like courage; it feels like survival. The kind of survival where you’re digging in your fingernails, white-knuckling hope like your life depends on it, because it does.

But maybe, just maybe, God sees it differently.

I think about how often Scripture tells us, “Do not be afraid.” It’s not because life is easy or because fear never knocks at our door — it’s because God promises to be with us in it. Maybe bravery isn’t the absence of fear or the strength to charge forward. Maybe it’s the quiet trust to take one trembling step at a time, believing that God’s hand is steadying us, even when our own knees are shaking.

There are days when my prayers are nothing more than whispered sighs — “Lord, help me through this hour.” There are nights when I’m too weary to pray at all, and all I can do is rest in the truth that the Spirit intercedes for me when I have no words left. And maybe that’s what real courage looks like: surrendering the illusion of strength and leaning instead into the grace that holds me together.

I don’t feel brave, but I am learning that bravery doesn’t always feel like bravery. Sometimes it looks like showing up. Sometimes it looks like tears. Sometimes it looks like still believing that God is good, even when life doesn’t feel good.

If someone calls me brave, maybe what they really see is the reflection of God’s faithfulness — the way He sustains a soul that should have fallen apart by now. I’m learning to take that as a quiet reminder: this story isn’t about how strong I am, but about how faithful He is.

So no, I don’t feel brave. But I keep going. And by God’s grace, that’s enough.