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Speechless

Here is a graphic about my illness to give you an idea of the things it has, does, and will affect.

Inability to verbally communicate.

I have been a spectator to this with my friend who has ALS, and it is hard. Talk about a massive loss of control. Imagine the amount of having to slow down and let your actions speak louder than your words, or in this case instead of your words.

Over the past few months my voice has begun to weaken. At times it’s raspy, or sounds like I’m hoarse or getting sick. With this new development my speech therapist started the process for me to get an AAC device as an alternative means of communication. Control Bionics and my speech therapist have been wonderful to work with. They were very efficient at getting me set up with a device that will meet my current needs, as well as my needs as my condition continues to change.

At first, life with my AAC was about getting familiar with it and practicing navigating between the pages and words and phrases to best communicate. My device has sensors on the front that either detect my eye movements, or a slight muscle movement of my hand, and it selects the letters or phrases I want to say. It’s amazing we have this kind of technology, and I’m humbly grateful to be able to use it. I even had the opportunity to bank my own voice so that when it speaks for me you will still hear my voice. This part is expensive, but we are looking for solutions!

This past week my voice has taken a turn. One morning I woke up and barely had a voice at all. Some of it returned, but I now sound like a quiet, scratchy record with the occasional skip where nothing comes out at all. Truthfully it’s been a little unnerving seeing how fast I could be plunged into silence.

Hardly anyone can hear me anymore, and the effort and breath it takes to make my voice loud enough to project across a room is exhausting and frustrating. I wasn’t expecting this part to be so hard, but it’s hitting me right in a tender spot I didn’t know I had. I feel panicked to not be able to explain myself, threatened by the thought of not being able to call out and get my kids’ or caregivers’ attention. And if you see me singing along in church I’ve fooled you. I’m lip-syncing.

Another practice in total surrender; in cupping my hands around what’s left and holding out all I have to offer. A chance to do more listening than talking. Another practice in giving up what was and adjusting to what is, and believing that regardless of the journey or the outcome, I am held.

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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!

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!

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Not My Will

After 2+ weeks in the hospital, this past week was my week to get back on track. I caught up on late orders from my Etsy store, did as much housework as I could tolerate, and soaked up time with my people. Life started to almost feel like our normal again. Then Friday came in like a wrecking ball.

I found myself sitting alone in the emergency room with a serious complication of my feeding tube that would require a painful procedure. All went well and I was home and tucked in by bedtime with the assumption that I would wake with this small speed bump behind me. Then came Saturday.

Saturday we had lofty plans. With the temperatures trying to point to autumn, the kids had been bitten by the pumpkin patch bug, anxious to take our annual family trek out to select the perfect pumpkin and sip apple cider on hay bales. Then we had penciled in a night at the rodeo, having already laid out our flannels and boots in eager anticipation. That is until I woke up.

The pain from the day before was tolerable, but every time I tried to stand I broke out in a sweat, my body shaking as nauseating waves of weakness forced me back down. Trying to be optimistic we eventually cancelled the first activity with the thought that if I rested most of the day I would be refreshed enough to still clamor out as a family to the rodeo.

It was not to be. I continued to struggle through the day, and at one point voiced my frustration to a friend. She was quick to remind me of a truth that reigns thickly throughout my days. It’s not just me that lives not knowing what I’m going to be able to do tomorrow; none of us are guaranteed the tomorrows of our best-laid plans.

So how do we reconcile with that? The only answer is that each day has to be an opening of our hands, prying our fingers off of our own wants and desires, and instead asking, “Lord, how can I best give you glory and honor today? This can only be done by keeping our eyes and hearts on Him. We may see our days don’t look like we imagined, but the gift of that is the joy we find when we are in full surrender to God’s will for us.

My weekend didn’t include the pumpkin patch or the rodeo, or any of the house projects I wanted to work on. What it was laced with was grace for each moment— the ability to cozy up in a comfy chair and watch a movie at the drive-in with my people. The strength to show up to church to help serve and then soak in the worship and the message that clearly spoke to the things I’m walking through right now. The weekend allowed me the time and awareness to walk through some difficult circumstances and conversations with some of my littles. It didn’t look at all like I had planned it, but it looked like exactly where God wanted me to be, and I was there for it.

Surrendering our days takes intention, and sometimes it might feel like disappointment, but when the end result is us doing what God most wants us to do, it brings an immense amount of joy and satisfaction as He blesses our coming and our going for the ways it honors Him.

faith, Uncategorized

The Slow Fade

Moving methodically around each raised bed of my garden I parted prickly leaves to get the clearest view where any new produce was ready for harvest, or any weeds that had sprung up among my vegetable plants. I plucked thin blades of grass and clover-looking leaves attached to flexible stems that had popped up since the last rain. I counted the pumpkins that were forming and twisted a cucumber vine back around its trellis. I was snipping off young okras when I noticed the difference, and it was profound.

Standing tall right between the towering cornstalks and the fuzzy buds of okra there was a different plant. Its stems were a rhubarb red, and flat pointed leaves grew abundantly from matching branches. As I examined these plants I noticed the leaves were close, but shaped differently than the neighboring okra, neither did they have any evidence of bearing anything of edible value. That’s when it hit me. These were weeds! Standing just as tall as the okra plants, and almost in neat little rows, it was clear why I had thought these had come from the seeds that I planted. I had been deceived from the time of tiny seedlings to these now towering plants.

I grasped the thick woody stems and yanked, but no matter how hard I pulled, most of them would not budge. The ones that did come up had impressively massive roots.

With these crawling tentacles beneath the surface of the soil I had to worry about how entangled they might be with my healthy plants, and many of them I had to just hack off above the ground, knowing they would need to be watched closely for regrowth. I was frustrated with myself that I had not noticed them and put a stop to them when they were seedlings. That made me realize how much this is like us missing the mark of God’s design in our lives.

When the wrong things we choose to do are disguised as something good; healthy green leaves in straight lines, it’s easy to overlook them. They creep in, and unknowingly we water and fertilize them, allowing the roots to grow deep and take hold. By the time we recognize there is something that shouldn’t be there, it is already so tangled around the healthy roots that it is sucking the nutrition from the fruit that is growing, and there is often no way to remove it without casualties.

So how does one prevent this kind of sneaky invasion? We have to be attentive, distinguishing what does not belong in our lives and uprooting it before it takes hold. The best defenses we have are spending time regularly in God’s Word, and faithfully in prayer, as well as having friends we can trust to hold us accountable; then we will be so immersed in truth that anything not of Him will be easy to recognize.

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July Fourteenth

13 years ago we had to say goodbye to a piece of our heart and soul. Even though I had a peace about her returning to her Father’s arms, there was still a part of me that felt like she had been ripped from our arms. I wondered how we would ever be ok. How we would face each day with the crushing weight of having watched our youngest, beautiful daughter be laid deep in the ground.

Tracing back over the time that has passed since her death it is clear that even when I have lost myself in indescribable grief, I have always been held by the One I can never lose.

When I have thought I cannot go on He gives me incredibly meaningful reasons to keep showing up.

When I have thought the pain is too intense, He has given me important distractions to take my eyes off of my own pain.

This day will always hold some painful memories remembering the events of losing our girl, but it will also hold the hope of our reunion with her someday, and the remembrance of how God has carried us each and every step of the way.

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Broken by a Pillow

A few days ago I was attempting to change the sheets on my bed. My dear hubs likes to use these heavy weighted gel pillows to sleep on that feel best on his neck. He was helping me put the bed back together and I reached for one of his pillows on the floor to hand it to him. Grabbing it with both hands I yanked it up almost to waist height only to have the weight of it slip from my hands and plummet back to the floor. Again I reached for it, and again it slumped to the floor as it slid from my weak grasp. And then I lost my ever-loving mind. “This is ridiculous!” I shrieked, and before I could even think I burst into tears. I know his kind words were trying to console me, but I could not hear them over the shame and frustration and despair that rang through every cell in my body.

I made a beeline to retreat to the bathroom where I hid behind the closed door and let loose hot tears of anger and deep sadness. All I could think was, “They used to call me Mighty Mouse because I was the strongest in my fire department, and now I can’t even pick up a stupid pillow. This isn’t fair, God. This was not supposed to be my story. Why can’t I have my life back?”

Silence screamed back at me as I finished having my temper tantrum and blotted my swollen eyes. Then there was a quiet whisper to my soul, “There are countless others who have that story; yours is one that will show my glory even more so because of your weakness. Just trust me.”

Peace seeps in like the gentle rocking of a newborn to sleep. My Abba Father has got me. He knows the pain, He knows the frustration and disappointment, and He promises to make something beautiful of my broken pieces.

As I crawled into bed I did the only thing I know to do when given the choice to despair or choose hope; lift my hands and praise Him for the many gifts in my life. I list them off into the stillness of night, and like a mighty shield, that act of thanksgiving pushes back my shame, my frustration, and my despair, until all that’s left is a calm assurance that I am exactly where I am supposed to be.

In what ways are you feeling your shortcomings? Are you able to leave those at the feet of Jesus and trust that He’s got you? It’s not always easy, but it always comes with a huge helping of peace.

endurance

A Room Crowded With Sorrows

“Swish!” The sharp, boxy machine sucks in a gulp of air and sends it erupting into a strong stream of gurgling water bubbles before sending it whisking up the plasticky tubing and into my nostrils. Brief spikes of pain take turns blazing up each of my legs, the depth of them an ache that feels like my bones are shattering.

I roll to my other side and tuck the heating pad back around my hips and thighs, trying to find some relief, and the effort of moving sucks the air from my lungs and leaves me gasping for each next breath like I’ve just run a marathon. Irritated, I reach for the pressurized mask of my ventilator and slip it over my nose and mouth. The rhythmic breaths it provides offers relief.

Sometimes hope is difficult to find in the lonely hours around 3am. The silent dark seems just the right habitat for all the doubts and big questions to seep into my soul and look for places to take root. I cry out to a God who at that moment feels very far away. “Can’t we just skip to the good stuff talked about in Revelation 21? God living with us. Death no more. Pain, grief, and crying a thing of the past?”

As I’m lamenting over my pain and isolation and how tired I am from these pain-filled nights, my thoughts are suddenly turned to the many stories I’ve heard and read of saints before me who suffered immeasurable losses and bore unthinkable burdens and didn’t whine or complain, but counted it all joy. I picture all of the men and women who have chosen to remain in hostile places to share the good news of Jesus, and suddenly my own resilience seems very soft.

I cry out for a bigger capacity to suffer well, with only joy, to make me tough, yet keep me tender, and to loosen my grip on my meaningless earthly treasures. God is gracious in His gentleness with me. He doesn’t mind being with me in my weakness, and He has written a good story for my life that He will see to completion.

So tonight in the lonely stretches of battling big pain, He gathers me into His arms and carries me through a room crowded with sorrows so that I can take up this cross again and deny myself, following Him down a road I never would have chosen for myself, but that leads to fulfilling and eternal life.

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Providence

Providence. A young wife stripped of her physical capacity, struggling to do basic things for herself as life moments pass by, leaving her behind.

Providence. A child living his entire young life consumed with the fear his mom is going to be taken from him. Calling her from school 4-5 days a week to make sure she is ok.

Providence. Two young girls swirling and giggling as they try on their mama’s wedding dress while she watches on, swallowing hard as she wonders if she will get to see them married.

Providence. A young boy looked over as having less worth because he is different, broken. Trying to scream his presence and purpose and his charisma for life from a body that won’t let him speak, or stand, or dance.

Providence. A thin sheet of water turns to glass as the tires screech across it, slamming the car into a semi, snatching away the life of a roommate, known, cared for, and needed.

Providence is a word I’d heard but not understood very much about until a recent sermon I heard from my pastor. I learned that Providence means God is in complete control of all things; there is no chance or fate.

This week I have rolled the word over and over in my mind, trying out its relevance, wondering if I have the guts to cling hard to the truth my mind knows even when my heart feels shredded.

What I am learning to believe about providence is that it is responsible for making an important story out of the hard path I am called to walk. When I view life through this lens it lends the hope I need to keep clinging even in these darkest valleys, though not easily.

Providence and I have come head to head this week. I have challenged why God’s complete control feels so out of control at times. I have pondered why if he is able to do immeasurably more than we can ask or imagine… why don’t we always get the answers we long for? It seems that sometimes when pursuing God, he cannot be located. What then?

I discovered reading the story of Esther this week that even in such turmoil God’s name was never mentioned, yet His fingerprints were all over that story! I knew God was trying to help me better make sense of the process and better accept particularly the things that we do not prefer or do not understand taking place in our lives. These things, hard as they may be are all part of God’s plan to develop us and take us from where we are to where he wants us to be. We may not see him, but that doesn’t mean he is not behind the scenes arranging every detail for His purpose.

Even the excruciating details. Even the ones that bring you to your knees, and the ones you don’t know how you’ll ever recover from. Every single detail with His loving heart imploring me to never give up hope that the hard parts I walk through are the beginning of something important and even beautiful that he is orchestrating.

Here I am, arms wide open, bleeding heart held out to You. Trusting you will take and use it for Your Kingdom, because I know You never waste our pain, and Your plans are so much greater than my own.