community

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

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.

family

Messy Grace

I learned an important lesson yesterday. Well, probably not just yesterday. I have a feeling I’ve been shown this before, it’s just that I need lots and lots of reminding.

My Little was really struggling. You know how someone steals one of your dollars and you decide to burn the other $99? Yeah. My little was having one of those days, and it wasn’t pretty. I had made several attempts to offer helpful input, which was just met with more frustration. And then I hit the parenting connection jackpot.

I was making dinner, and trying to do it in a hurry. Well actually, it was dinner time, but I was making breakfast because I failed to plan ahead. I had exhausted the week’s meal plan already and needed groceries and didn’t have time to thaw anything out, so breakfast for dinner was the last ditch attempt to act like I had it all together. Fortunately it is well received around here.

Within about 5 minutes I had efficiently gotten tortillas into the oven to warm, sausage rewarming in the skillet, diced potatoes in another skillet, had the cheese laid out, and all that was left was to wash and crack the eggs and get them into the third waiting skillet. I estimated I would have everything hot and put together within 15 minutes, perfect. Then my struggling Little walked through and the frustration and sadness was palpable, y’all.

One of my earlier suggestions had been to check out our emotion wheel and do the corresponding activity. I probably use this more than who I got it for, and I’ve found it helpful. The activity suggested was to hold ice cubes, which sounded intriguing to me, but was met with much resistance.

As I started counting out the eggs and grabbed a pump of soap to start washing them, an idea occurred to me. Washing the eggs would involve hands in cold water; maybe that would have the same helpful effect at derailing the struggle train. So I offered the task up, and it was accepted.

I could see that this activity had helped just a bit, so I started thinking of how I could keep us moving in this direction. I looked at the pile of eggs to be cracked, and my rational type A personality went to war with my empathetic emotional side. I could get the eggs cracked in less than 2 minutes with no bits of shell and no mess, keeping dinner on track with my projected time estimate. Or I could offer it up to my Little in hopes that it would help blow away the fog of frustration and sadness that was tinting the day. The type A in me sighed as I opened my hands to giving up control.

“Hey, would you please crack these eggs for me? It would be really helpful.”

I got a hint of an exasperated eye roll, but then sleeves were rolled up and small hands reached for the first egg, still glistening with the last coat of cold water. One by one the eggs connected with the counter, shells cracked, yolks plopped into the glass pitcher. 8 eggs, several shell splinters, and two hands covered in gummy slime later, there was a smile.

“Thanks for letting me do that, Mom. That was fun!” And then a few minutes later from the other room… “Mom, I just love you so much.”

I was still picking bits of shell out of the eggs and cleaning yolk off the side of the pitcher. And the faucet. And the sink. And the counter. My heart swelled and twisted at the same time as I realized that making him feel seen and needed and valuable was exactly what he needed, and my own need for control and perfection almost got in the way. I tucked these feelings in my heart, hoping to remember them for next time.

Friends, the messes are worth it. People are messy. My messiness may look different than yours, but we all have a deep need to be seen and valued beyond the messes that we make, and accepted anyway. It was a humbling lesson that I’m sure I will need reminding of again, so that’s why I’m sharing it. We all need the reminder sometimes that letting go of our own hangups may be just the thing needed to make the confidence of someone else soar.

PS~ add “crack some eggs” to the wheel under Anger —> Annoyed. 😉

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Mama Sandy and the DOAM

I met Sandy when we both signed up for the Women’s Bible Study at University Baptist Church. We ended up in the same small group that met to discuss what we had read and watched. Being an introvert, and still fairly new to UBC, I gave myself over to the very extroverted woman who had an answer for each of the questions, and I did a lot of “soaking in” during that time.

By September 14, 2022, Sandy and I somehow talked enough to become Facebook friends, and from there she discovered that I was collecting nail polish to paint nails for women experiencing homelessness in town.

Sandy wanted to help, and generously donated to my small little mission.

From there my busted up short term memory doesn’t quite fill in all the blanks correctly, but I do know that Sandy started showing up for me again and again. In ways others hadn’t, and in quantities others wouldn’t.

There was nothing that she would not do for me; sit and patiently teach me all of the wise bits about marriage she has learned over the years, vacuum and mop my floors, pray and read scripture over me from a hospital bed, let me vent about a horrible day that didn’t really stack up to her hard day. Remind me in kindness when I need to reframe my thinking, or go back and ask someone’s forgiveness, and hours and hours of holding my hand and praying over me.

Sandy disciples many different women, and I was always aware how much that filled her plate, but it took me awhile to realize what she was doing was disciplining me too. Guiding me in love. Teaching me in wisdom. Loving me with grace.

For years I have prayed for Godly women in my life who will mentor and guide me, and I think I had all but given up on that ever happening by the time I met Sandy. Yet she walked right in and took the job. None of my mess mattered to her. My life expectancy didn’t matter to her. She was simply there for as many days as God would allow us to have together.

We have gotten to serve together, laugh together, pray together, and have hours upon hours of conversations about every topic under the sun, including the hardest ones that no one much wants to talk about. I can only pray that I will have the opportunity to be someone’s “Mama Sandy” some day, because what she has given me has been something I’ve needed more than half my life, and came at the most impeccable of times. As I tell Sandy, “Our hearts have been friends for a very long time.”

And they will be, for a very long more. 💕

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Words with Weight

At the end of each year as I spend some time reflecting on the year before, inevitably a new word saturated in meaning is impressed upon my heart for the coming year. That word remains the theme of my photo album, and the compass to how I hope to lead my family to grow throughout the year.

This past year our word was Shalom. Many of you may already know that Shalom means peace. I was longing for peace at the beginning of this year, but it went even further to define our year as not just an absence of war, but an overall sense of fullness and completeness in mind, body, and estate. To make full restitution; RESTORE! This brought to mind one of my favorite verses, Joel 2:25. “I will repay you for the years the locusts have eaten.”

Every time I passed the 6 letters framed upon our front door I prayed for peace both within our home, and outside of its doors. I prayed that God’s peace would bring a sense of completeness to our home; to our relationships, our walks with God, and our friendships with others.

As 2024 drew to a close and I started seeking and praying for our word of this new year I began seeing it on repeat, the word chosen for this year. This year’s word is JOY. I anticipate we will be blessed with an abundance of joy, and we will also see it woven in and out of many of our daily experiences. Perhaps we will learn better how to give joy, and we will become accustomed to receiving joy even in circumstances we might not think to look!

As we wind down our time in Shalom, though still activity seeking where we can give and take peace, I excitedly welcome this 2025 season of all things Joy!

Christmas, Uncategorized

Enough

I hardly have any photos from Christmas this year. Christmas Eve I missed our candlelight service at church because I was too weak to sit up or stay awake.

Our candlelit tradition of “shepherds’ meal” on the night of Christmas Eve only kinda-sorta happened, because I wasn’t well enough to remember, or to get up and make different choices of soup and bread like I usually do. The night was rescued by a frozen tub of tomato soup found in the bottom of the freezer, and the calming glow of our advent candles. I lay in my hospital bed in the next room listening to the chatter, and chiming in silly questions like “what ever happened to the sheep after the shepherds left to see baby Jesus?”

Late on Christmas Eve I still hadn’t managed to wrap more than 4 gifts to tuck under the tree. Anyone who knows my personality knows that is the polar opposite of my checklists and neat packages tied with string weeks before December 25th. My husband and daughter came through by busting out all the wrapping (with the help of a healthy stack of gift bags) in the late hours as Christmas Eve melted into Christmas morning.

Christmas morning… well, really most of the whole day is a blur with more chunks missing than I’d like to admit.

What I /do/ know is all four of my babes were under one roof again.

My silly dream of a Hannah tree finally happened, in all her pink glittery glory.

Even through sickness and pain, the cozy warmth of a crackling fire still brought with it the memories of Christmases past, and the anticipation of more to come.

Zero kinds of Christmas cookies or fudge happened, but “Kitchen Trash” sure as heck still did.

I did not capture my traditional “photo every hour” series of Christmas Day, but I did manage to grab the still-frames of the most important moments of joy and togetherness.

And as the day wound down and the doubts crept in with the quiet, my wise sweet little sister typed out the balm that my soul so badly needed; I need to adjust my definition of the word tradition from “every,” and “have to,” to “some years,” and “like to.”

When I sifted through my unmet expectations I found that though I didn’t get the Christmas pickle unpacked this year, there was just as much joy and gratitude and wonder in the exchanging of the packages. And even though we weren’t able to visit the lights at the bell tower or drive the neighborhoods looking for the best displays, the twinkling in our own window was enough to cast that magical glow that makes you feel warm with anticipation.

This Christmas started out feeling like I dropped more balls than I caught, but as the day unfolded and the story of the Light coming into this dark world permeated each of our moments and traditions, all of it was suddenly more than enough. I was enough. Because He is more than enough.

family

Flying Away

I tried to make dinner special last night. I started the crockpot in the morning and had my sides ready to go when cooking was about to finish. I set the table and lit the candles as we do every dinner time. Then I went about getting the meat from the crockpot ready to serve and discovered it was still closer to alive than it was ready to be plated. I chided myself for a moment, and then looked around for how to pivot. Frozen chicken patties. Check. Buns. Check. I set about pulling a new meal together, while explaining my predicament to each child who wandered into the kitchen to investigate why their tummies were growling.

When we finally sat down to eat, I looked around the table at each of my four children. Behind them the wall boasted a gallery of frozen moments in time we had experienced as a family; living, loving, laughing. I looked around at their faces again and soaked in every detail, knowing after tonight things would never be the same.

One of my babies is leaving the nest. After nearly 20 years of seeing her every day, she is ready to set out on her own adventure; following the lines of her own story. She has eagerly been preparing for this for months. Choosing colors for her own grown-up bedding, stacking a growing pile of boxes aside in the garage, and unnecessarily reminding me each time exactly how many weeks I have left to braid her hair for her.

I don’t feel like I was adequately prepared for this stage in life. Or maybe it’s that it came so quickly I feel caught off guard. Despite the butting of heads and clashing of personalities, I have deeply cherished having all 4 of my little sweetlings under my roof for so long. They are my safety net to fall into on the hardest days, the ones I can count on to give me reasons to keep getting out of bed each day, and they are the comic relief to any and every awkward situation.

I may tear up at the thought of all 4 of them not being here first thing Christmas morning, and I may be swallowing a lump in my throat every time I see that empty chair at the table, but I also am so very proud of everything she has and is becoming. It brings me joy to see her chasing her dreams and making them reality. And I appreciate the opportunity to see her keep her own home and let her own tastes and ideas be set loose as she builds a nest of her own.

I am confident we have given her every truth, every warning, every bit of wisdom we could impart as she grew from doting child to confident woman. It’s her turn to fly, and even with the distance I’m still going to be cheering her on, celebrating her successes, and forever a soft landing place for her hurts.

There will be sleepovers both here and there, and doggy play dates, and meeting up for mother/daughter coffee dates. All of these things I will cherish in my heart just as much as the things I did when she was under my wing. Oh, and I fully expect to be getting at least 4 phone calls a day as the true reality of adulting sets in, and I’m totally here for it. Let’s bring this season on!

Christmas

There May Yet Be Hope

After a week of navigating multiple infections, side effects from the antibiotics to treat them, layers upon layers of pain, my wheelchair ramp in the van breaking again, as well as the van being in an accident and needing repair, single parenting through the highs and lows of two young adults, a high schooler, and a middle schooler, all while trying to give our children the comforting normalcy of a home ready to welcome Christmas, it is tempting to despair, or to long for a storyline different than this one.

But at the crest of a new week with new challenges, I look back and can see so clearly where a mighty and tender King saw me sitting in the dark on the floor of my locked bathroom, reached out for me, held me close, and gently walked me through each step, whispering words of hope and assurance and goodness to me. He has been with me through it all, and the whole week He has sung compassion over me.

Saturday he sang Lamentations 3:29 over me, reminding me that even when facedown in the dust, there is hope. My peace grew as He shone a light through my despair. Even though this illness will most likely end my time in this world, He gives me hope and joy and life, and not just me, but many others as well.

As my wingman had to fly out of state again, leaving me to carry the weight of the household while pushing through crushing pain, I found truths in the book of James that promise that my suffering will mold endurance, leaving me perfect and complete. Digging into the Gospels for my church class, I read about crowds of people entrenched in suffering who travelled long and far to receive His healing. Like me, they were desperate for wholeness and relief, and in His compassion He gave them healing. I am left wondering, is this the same Jesus who might choose not to heal my body on earth? Will he let my little loves continue to watch me waste away to nothing and then have to grow up without their mom? Will he let my husband of 23 years become a widow and a single parent?

Then I find that He never promised a life of comfort. He promised great struggle and suffering. And hard as that is to comprehend, I hold to His promise that His Kingdom will come through the mending of all that is broken, and that His power is made great in my weakness. He came here to suffer an agonizing death so that I can learn to suffer well in His footsteps; that even in my pain I can find peace and joy and purpose.

He is gentle with me when I struggle with my limitations and when I question the good in my story. He is also faithful to remind me that as I live out a story I never would have chosen for my family, and take up my cross again and again to follow Him, this is the road that leads to everlasting life.

family, Uncategorized

Grilled Cheese Moments

First off, I am not trying to humblebrag by sharing this post. I want to share this very slap-upside-the-face moment I had with you because my deepest hope is that someone else out there will be able to slow down and have a few of these moments also; before we all wake up one day and realize it’s too late.

Parenting teens is a whole thing. Like, a whole thing that kinda gets glossed over in the What to Expect When You’re Expecting books, and I for one am a little miffed at the whole, “they’ll become complete aliens from ages 12-25 and then the sweet kid you know starts to re-emerge,” because there is /so much/ more to it than that, and I want to be totally here for it. All the things.

They tell us we are in charge of raising these little humans and teaching them to survive and thrive as adults by the time they are ready to jump from the nest into this maddening mess of a world we find ourselves in. If your kid shows up to college and has no idea how to separate whites from colors or boil water for ramen or how to Amazon Prime new socks before they wear holey ones to their potential in-laws for the weekend then we’ve clearly been blowing it at teaching them to be well-adjusted, responsible adults, and they will forever bare the scars of how their own parents left them so ill-equipped for life. Or so the pressure can seem, right?

And so throughout the child-rearing years I have done my best to think ahead to how they are going to function when I’m not there to pack their lunch for them, remind them to take a coat, and ask them when the last time was that they scrubbed the inside of their toilet. Probably to a fault. Yep, I would definitely say I err on the side of expecting much from them in anticipation that they will be able to handle much when they finally take flight from the familiarity of home. This week I had a moment though. A moment that reminded me they don’t always have to be nearly grown-ups; sometimes they are still that sweet little kid just needing their mom.

As my teens are growing and becoming involved in all the things I find myself ever pressing in to find where I’m “needed,” and perhaps more often than I’d like finding that they are quite the independent little adults now! Isn’t this what we have been training for?

This week one of my girls arrived home from a marathon day of school and then practice for a huge singing event that’s coming up. As she plopped all of her belongings on the table and then came to investigate the options for food, her request was pretty simple: “can you make me a grilled cheese?”

The me that we all know would say, “you can make yourself a grilled cheese; everything you needa is in there.” For some reason this time I hesitated. Instead, “of course I will. Give me a few minutes.” And in that snippet of time that it took for me to grill up a warm, melty sandwich something washed over me. It was like a lightbulb popping into a brilliant glow that chased away some of the shadows of self-doubt in my parenting. I realized by saying yes to her this time it told her that she was important and I was willing to put her needs first.

I feel like this is a message all of our teens need to hear, on repeat. They are out there bravely forging their way in this cloudy and upside-down world, and I know that the negative messages coming at them are immense. As their parents we have the power to show them that even though we know they are capable of making their own sandwich, they matter enough to us that we will put our own stuff on hold for a few minutes to say, “hey, you are worth it, and I love you.”

Our children’s slice of time at home is so small in comparison to the rest of their lives, and I want to do better at giving them those snapshot memories to tuck away and remember on the days the world is loud and they cannot find their place. I want them to know that wherever their journeys take them they will always have a safe place of refuge where they can count on being served up a piping plate of unconditional love and acceptance.

This teen thing, we are kind of just figuring it out as we go along with loads of prayers and a few strong drinks along the way. What “aha moments” are you having as you raise up your young adults? I’d love to hear what you are learning as you walk out the important job of raising little humans.

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Slipping & Held

I wrote this post a few years back, but came across it in my drafts today…

Sometimes it gets easy to not really think about being sick. In the day to day my normal becomes so routine that it just feels like things have always been this way. Then there are days like yesterday that have an ice cold slap kind of way of reminding me the fragility of my every day.

In the cold drizzle of early morning Mark drove me to my neurologist’s office for my 3 month Botox appointment. My doctor is one of the kindest I’ve met. His gentle demeanor and tender concern have a way of making me feel seen, remembered, heard, and valued. We began the appointment as we always do, bringing him up to speed about any changes in my condition since my last visit. This is where I’m reminded that this disease presses on. We compare my movements and symptoms, and he questions me about my cognition and memory. I have to defer to Mark because, well, I can’t remember.

“How does she seem to be doing?”

Mark’s eyes dart to mine, and I sense a hesitation before he answers.

“She’s slipping since the last time we were here.”

I listened as my groom of 21 years explained how I repeat myself, asking the same questions and going through the same motions over and over without any clue that I’m doing it. My face flushed with embarrassment as I squealed, “Babe! You should tell me when I’m doing that!” And his reply highlights the kind of gentle and selfless loving he showers me with day in and day out. “Telling you would not change anything, it would just make you feel bad.” He went on to explain to my doctor how he and the kids patiently listen to me say and do things multiple times and they play along like it’s the first time so that I can feel more normal and less afraid. And that, my friends is the truest love, and I am the blessedest blessed for having a man who is so thoughtful with my heart as we wade through these sometimes intimidating waters.