I have learned much about anxiety this week. How it makes the entire body buzz with an itch that won’t be scratched. How pulsing panic sits me bolt-awake from the depth of refreshing sleep. How I can’t organize my thoughts or talk myself down from the war within me.
The vibration of my phone alerts me of words I thought I was ready to take in, but it turns out I wasn’t. Immediately I croak the words out, white-hot tears burning my cheeks, finger slicing the air as it jabs toward Heaven. “I know I said to lead me, but I don’t like this one bit. I’m angry, and I’m terrified. I don’t want what You are giving me to carry. But… I trust you. And I’ll listen… and I’ll follow… You just better pick up the pieces.”
And the next thought after my white-hot rage is the words of a familiar hymn, and I draw breath as deep as I can so my quavering voice can scratch out the words of the melody:
“When peace like a river attendeth my way, when sorrows like sea billows roll; whatever my lot thou hast taught me to say, it is well, it is well with my soul.”
Anxiety means something inside of me needs to be felt. It’s an SOS telling me that I have been avoiding important emotions that I have not fully faced yet. So I pause and make space for the actual feelings to seep in. When I allow myself to feel I recognize… I’m not anxious, I’m sad. I’m sad at the weight of this week; at all the broken and hurting pieces that have jumbled their way across these days socked in by the thundering gray skies.
So through my singing I let the tears fall, not as a sign of defeat, but as a release. I let the sadness wash over me, untangling itself from the frantic knot of panic. The gray skies outside haven’t cleared yet, and my situation has not magically changed. But the war inside my chest has begun to quiet down.
Surrender doesn’t mean I suddenly love the burdens I’ve been given to carry. It just means I’m choosing not to carry them alone. In admitting my grief, I find a strange kind of ground beneath my feet; a place where faith and real, messy human emotion can finally sit together in the quiet.
If you find yourself in the storm today, buzzing with an anxiety you can’t shake, try leaning into the quiet beneath the noise. Stop running from the itch. Name the real emotion waiting for you under the fear—whether it’s heartbreak, anger, or deep exhaustion. God isn’t intimidated by your white-hot rage or your quavering voice, and He certainly isn’t afraid of your sadness.
It’s okay if your voice shakes. It’s okay if you’re angry while you yield. He is faithful enough to hold the weight, gentle enough to pick up the pieces, and close enough to remind you that even here, in the middle of the ache, it is well.
The growing up of my youngest has hit me the hardest in some ways, as I know these are the “last lasts” we are experiencing together. The speed at which it happened has all but swept my feet out from under me. The boy that was at my side for 11 years has found sure footing as he ventures and explores for himself, and discovers there is a whole world in which he feels confident and excited for. My heart smiles to see him enjoying the days with so much maturity, feeling safe to wander farther and do more with his growing tribe.
In the ticking hours that I’m alone though, there is a subtle, yet deep ache as my days of motherhood fold up quiet. I laid in the swing today, drinking in the perfect temperature and watching the shadows dance with the sunlight. It occurred to me why I feel like I’m carrying grief in this season. It’s the lie of rejection whispering scorch-hot that because I am no longer needed in the same ways, I am no longer needed at all.
It tells me that as his world expands, my place in it shrinks into irrelevance. But as the wind stirred the trees above me, God gently reminded my heart of a deeper truth; transition is not rejection, and release is not loss.
For years my arms have been a safe harbor; the primary point of reference. But motherhood in this season isn’t about clinging tightly to keep them close; it’s about learning how to love them from a beautiful, prayerful distance.
The grief I feel isn’t a sign that I’ve failed or that I’m being left behind—it’s simply the sacred price of a love that did its job well. We pray for our children to be confident, faithful, and independent. When those prayers are answered, the quiet room left in their wake can feel heavy, but it is also holy ground.
As I learn to rest in this next chapter I know that God isn’t done writing the story of my growing littles, and He certainly isn’t done writing mine. The God who held me through sleepless toddler nights and busy childhood years is the same God who holds my quiet hours now.
When the silence feels too loud and the ache creeps in, I can bring those heavy feelings to the One who understands holy transitions. I can grieve the grace of the past without fearing the future. It is okay to weep for the little boys and girls who held my hand while simultaneously thanking God for the young adults stepping into the sun.
Have you found yourself on the surprisingly lonesome road of motherhood as your children run ahead to take flight? We can trust Him with the “last lasts.” Every finished chapter in motherhood opens the door for God to reveal something new in us. The hours may feel quieter, and the days may fold up soft, but a mother’s heart remains their home anchor—no matter how far their feet wander.
When my husband was on active duty in the Air Force he traveled often. Every time that he packed a suitcase I slipped a special treat inside along with a written card of my love. A piece of me to remind him what waited for him upon his return.
When he retired from the military, but still had to travel, I continued this tradition, but as the cadence of his trips grew closer together I sometimes found it difficult to come up with what to sneak into his bag. I also guilted myself about what kind of habits I was encouraging by keeping him constantly stocked on Twizzlers and Swedish Fish.
Looking through a hodgepodge of craft supplies one day, I came up with a new idea. I grabbed a big package of wooden sticks, the tongue depressor size, and a fine-tipped Sharpie. I wrote a sweet note on the stick and slipped it into his suitcase for him to find when the miles were between us. Every time he packed to leave I repeated this. Words that helped bridge the distance and time between us. Promises he could cling to.
Snacks disappear, cards get stashed away various places, but he started collecting those sticks one by one. The day I came across them I swallowed hard the thick lump that rose in my throat. My chest ached with a hollow pain as I stared at the very visual reminder of the number of times I had said goodbye just in the past 3 years.
In that moment, the tradition stopped feeling like something small and secret—and started feeling like evidence. Evidence of love that had to learn how to survive distance. Evidence of God meeting me in the in-between places, when my hands needed something to do and my heart didn’t know how to reconcile with my head.
I sat down with the sticks scattered on the bed and I began to read the notes again. Some were written with an easy smile, the kind that comes when you believe tomorrow will arrive on schedule. Some were braver than I felt. Some were shorter than I wanted them to be because my creativity struggled to come up with something new. But every single one carried the same message: you are not forgotten; you are loved; you are coming home.
And as I read, I realized something I hadn’t let myself notice. I had been building a bridge out of tiny, ordinary pieces—wood and ink and quiet prayers—because the enemy loves to tell you that distance is the end of a story. Distance is hardly the end. It is often the space where God grows the faith you can’t see yet.
The Bible says God is faithful. That faithfulness isn’t only for the mountain-top moments; it’s for the nights when you’re staring at a suitcase, wondering if the next goodbye will feel the same. It’s for the days when your hands are busy so your mind doesn’t run wild. It’s for the season when you can’t fix what you’re facing, but you can choose what you’ll cling to.
I thought about the promises hidden in those sticks. Not just promises from me to him—but the promises God had been putting in me.
So I prayed. Out loud at first, because sometimes my heart needs to hear itself surrender. “Lord,” I said, “You know every goodbye. You know how many times my throat has tightened and tears have pricked at my eyes. You know the way I’ve tried to measure love in small things because I’m afraid to measure it in time. Teach me how to trust You even when I’m counting.”
It didn’t feel like lightning or instant relief. It felt like God gently turning the lights on inside my chest.
As the days turn, the suitcase ritual has kept going, but my spirit has fought for change. I still slip sticks into pockets. I still tuck love into corners of his life. Only now, when I reach for a pen, I am not just trying to distract myself with sweetness. I am remembering that faith is a choice you make again and again—even when you’re tired.
The sticks have become more than reminders for him. They have become reminders for me. Reminders that love can be trained, like a muscle, through repetition. Reminders that grief doesn’t get removed by denial; it gets carried—one faithful moment at a time. Reminders that God is not late, even when our goodbyes feel long.
On the day I laid my eyes on that bundle of sticks and swallowed that thick lump in my throat, I also felt something else rise up underneath the ache.
Hope.
Not the kind that depends on the number of days left. The kind that depends on the One who holds the days. The kind of hope that says, This isn’t an ending. This is just distance writing its sad little sentences—while God writes something stronger beneath it.
Because whether we are separated by travels across the map or standing still in the same room, the truth has never moved— God is with us. He has been strengthening what I can’t explain. He is bridging what I can’t reach. He is turning ordinary routines into threads of grace.
Even now, when I see those wooden sticks—when I remember the weight of all those goodbyes—I don’t just feel sorrow.
I feel called.
Called to love faithfully. Called to trust steadily. Called to remember that every goodbye can become a prayer, and every prayer can become a promise we hand back to God—until home isn’t just a place we wait for. It’s a place we belong.
If you find yourself in the waiting for someone who says goodbye on purpose, don’t let the distance convince you that you’re forgotten. Let it drive you closer to the One who never leaves, the One whose love doesn’t run out when things get hard. Keep your heart soft. Keep your hands busy with what’s good. And when you don’t know what to pray, pray the simplest truth: “God, hold me in the in-between. Strengthen me for today. Teach me how to hope without losing myself.”
Because even when a person walks away, God remains. Even when goodbye keeps coming, God keeps holding the thread.
There is a friend who sticks closer than a brother. And then there is a friend who will drive 20 minutes at 10:00pm to press into your hand a jar with two potentially slightly smooshed fireflies that she probably caught while barefoot in the yard her pajamas, but she listened to you bare your soul that day, and she knew that’s all you needed to keep going right now— two, tiny, flickering lanterns to remind you that the dark doesn’t win. Not today.
They weren’t spectacular. They weren’t a grand, sweeping gesture that would make waves on social media. They were just two bugs in a repurposed canning jar, their rhythm a little frantic, casting a faint, irregular glow against the dashboard of her car.
But as she handed them over, her hair still tangled from the evening wind, it hit me: This is what real love looks like.
We live in a world that thrives on “let me know if you need anything” text messages—well-meaning, but safely tucked behind a screen. We have become experts at offering passive support. But a firefly friend? A firefly friend doesn’t wait for an invitation to the tragedy. They don’t need a clean house, a put-together version of you, or even a logical explanation for why your world is tilting on its axis.
They just show up. Even if it’s late. Even if they’re in their pajamas. Even if all they have to offer is a fragile, fleeting piece of light they chased down in the dark just for you.
When you bare your soul to someone, you hand them your vulnerability. It’s terrifying. You wonder if you’ve said too much, if you’ve become a burden, or if they’re secretly judging the mess. But the right people don’t look at your broken pieces and see a chore. They see an opportunity to hold the flashlight while you figure out how to put things back together.
Last night, those two slightly smooshed fireflies told me three things I desperately needed to hear:
1. “I listened.” My friend didn’t just hear my words; she felt the weight behind them.
2. “You are worth the effort.” Worth the drive, worth the mosquito bites, worth the interruption to her night, a night that if we are being honest, SHE should have been the one in bed early having gifts dropped by!
3. “You are not alone in the dark.”
If you are lucky enough to have a friend like this, pull them close. Thank them. Let them know that their messy, barefoot magic saved you. And if you’re sitting there wondering where your firefly friend is, maybe this is your invitation to be one. Look around your circle today. Who is sitting in the dark? Who just bared their soul?
You don’t need a grand plan, a perfect speech, or a pristine gift wrapped in a bow. Sometimes, all it takes is a willingness to run out into your own yard, catch whatever little bit of light you can find, and bring it straight to their door.
Because at the end of the day, we aren’t the source of the light anyway—we are just the ones called to carry it.
When God asks us to love our neighbors, He doesn’t ask for a flawless production. He asks for a willing heart. He takes our smallest, messy, “yard-caught” efforts and multiplies them by His grace.
So if you’ve been waiting until you have it all figured out, or until your offering feels “good enough,” take a deep breath and let that pressure go. Step out into the dark, trust the One who commands the stars, and go share the flicker you have. You might be surprised by just how brightly God can shine through the cracks of your ordinary, beautiful obedience.
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 pursue 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.
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.
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.
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.
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.
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.
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.
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.
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.
Choosing Hope 