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Incurable Hope

It has been a long six years trying to find a diagnosis. Based on my symptoms and the way they have progressively worsened, we’ve known it was some kind of degenerative neuromuscular disease, but we haven’t quite known the prognosis. Early on it was thought to be MS, and I was able to work through it, making some modifications to how I did things, but vastly able to continue life as normal. Things continued to decline though, and I found myself losing the strength and endurance I needed to continue working as a paramedic. This is when I cut back to part time paramedic, and also took an office job in organ donation. As fulfilling as that was, I eventually found myself no longer to make the drive, or even remain upright for the hours that it required. Eventually I had to face that I could no longer safely work in any job, and I needed to save what little energy I had for my family and friends.

It’s been a frightening journey at times, especially with the unknowns, but we are beginning to have some clarity. A recent brain MRI showed significant damage to my brain stem, which is responsible for many of the automatic functions of the body. This information shed light on why I was having symptoms related to that area of the brain, like trouble regulating my breathing. All of these pieces started to fit together and pointed to Multiple System Atrophy. In some ways this was a relief, as the contenders like ALS have a very short length of survivability. MSA comes with its own fatal prognosis though, typically within 5-15 years. Being at year six, I already feel blessed for the time I’ve had and continue to enjoy. I’ve tried to stay in the moment and be continually grateful, although I’ll admit that sometimes my attitude stinks and I fall into a grumpy state of forgetting the gifts I’ve been given.

I know that God knows my heart and hears my prayers, and those of so many who love me. I know that He can take this from me if He chooses to. But even if He doesn’t, I will still choose hope and thank Him for every moment He allows me to have here.

I hope you’ll help me, dear readers, to continue to find Hope and Grace in the day to day. I know that it’s there, and sometimes I just need help to lift my eyes up for it. Please don’t treat me differently; let’s laugh and dance and do big and small things without fear of the future. I’m ready for today, how about you?

Please leave me a comment, it lets me know you’re listening!

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These Boots

Today I lost another Paramedic friend to suicide. I say another because it’s not the first time. I fear it will not be the last. I do not really know what to say about it, so these are the words that came to mind.

These boots are the ones that were picked out so new and shiny and untouched.

These boots are the ones that were nervously shined for the first day on the job.

These boots are the ones that got drowned in soap bubbles washing the trucks as a probie.

These boots are the ones that held nervous feet running their first call.

These boots are the ones that climbed endless stairs to bring your loved ones down to be cared for.

These boots are the ones that got cuts and scuffs from asphalt and rocks and ice and twisted metal, and those darn stretcher wheels.

These boots are the ones that trudged through dry fields for hours, looking for a woman who was lost.

These boots are the ones that rested on the dash in hopes of a few minutes break on a busy shift.

These boots are the ones that were the first thing many patients looked up and saw.

These boots are the ones that crunched through broken glass to get your loved one out of the car.

These boots are the ones that stood in a homeless man’s urine as he was tenderly helped to his feet.

These boots are the ones that were polished again and again in attempt to cover the scars and scrapes.

These boots are the ones that ran an achey elbow call right after performing CPR on a baby that wasn’t coming back.

These boots are the ones that were splattered in blood as every effort was made to make it stop.

These boots are the ones that stood there while you were told we had done everything we could do.

These boots are the ones that saw far more pain and heartache and destruction in a day than most people see in their lifetime.

These boots are the ones that sit empty, still bearing the scars and scrapes that never could be erased from your heart.

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The Little Garden That Could

Remember several months back when my garden got trampled and I was certain that I would not see anything grow from it this year? Every few days another arm load of veggies is ripening to perfection, and while I may not have any strawberries or cucumbers this year, just the victory of getting to make okra pickles with my little man is more than enough to call this little garden a success this year. I am blessed beyond measure.

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Above the Belt

I seem to frequently get told that I’m strong or brave or amazing, or any one of those pat-you-on-the-back kind of words. As flattering as that is, let me change your camera angle for a moment and show you what’s really going down. Behind, beside, blazing ahead of, or basically whatever direction I need to find him in is the most wonderful man that I get to call mine and do life with every single day.

It is true, I do a lot of fighting against my waves in life, but if you look a little closer you’ll see my Mark doing whatever legwork is necessary to keep us right-side-up. He is one of the most giving guys out there, frequently overlooking his own needs or wants in order to keep me comfortable and moving forward.

I can see it in my head; a boxing match. There is arm waving and whistle blowing and the boxer wearily plops themselves down in the chair in the corner, and that’s where you see him. He flies in fast as an eagle, but stealthy as a shadow and he surveys the damage and starts making it better before the rest of us have really even taken it all in. He’s icing swollen eyes, dabbing up bleeding lips, and all together just letting the sweat and the blood and the brutal grossness of it all drip all over him without a second thought because he is so focused on the goal of getting his fighter back out there to take in all the glory. Yep, that’s who my man is. Every single day.

He doesn’t complain. He doesn’t ask to share the winning Golden belt, he simply does whatever he can to make the circumstances better so his fighter can get back to doing what she loves, and be good at doing it. I’m not sure the official name that person is called, but for me, I call him Buddy. Whenever he hears me call that name he comes rushing to my side to help me battle through whatever next fight needs to be fought. He likes to stay in the shadows, and insists that anyone would do what he does, but I know better, I have the best of the best.

Will you say a prayer for Mark today please? He is such a hard worker. He gets up as daylight is about to begin cracking the sky. He gets ready to start his work day, but never before first checking on me; helping me get my morning medicine, and showering me with kisses. He always makes sure I am cared for and comfortable before he starts his own work. He puts in a solid day of work, but it is not just that. He is working through his doctorate, and he’s making himself available for all the 10 gazillion times myself or one of the kids will come knocking on his door to ask for his help that day.

He does work-work all day long, but he often splits into the time of his day to take me or one of the kids to appointments. He makes sure the little ones get lunch, and feeds all of us again at the supper hour. He helps with homework, does housework, and whatever else needs to be done, like picking up groceries, or taking our pets to the vet. He does it ALL, and he still meets each one of us with love and grace. And usually a silly dance; lets not kid ourselves.

My husband needs more strength right now more than ever before. He needs strength to keep up with work and school, and all the other things that still need to happen around our home because I am laid up in bed. I’m so thankful he has scuba diving as a hobby, because it allows him to find peace, refreshment. (and quiet) to keep fueling himself for keeping our family running. Please help me support and love on him right now as he carries such tremendous weight on his shoulders.

Thank you for listening to my heart!

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Being Here

Hello my faithful friends and loving strangers. Since wrapping up my blog, I have been receiving numerous requests for me to keep sharing my writing. I heard stories of how it has changed people who I didn’t even know were reading it, and how it has encouraged people who have needed that, and brought hope to others who have been feeling alone and hopeless. I felt God urging to me to continue sharing my story; so that many will know His grace and His hope. If God is willing to use someone like me to point others to Him, then here I am, committed to showing others the grace and hope I’ve found along some hard, long battles.

I was admitted to home hospice a couple weeks ago. They have treated me with such loving care, but it has also been a hard pill to swallow. I don’t like the thought of having a number on the expectation of my days. I know though, that every single one of my days is already planned, and nothing can change that. God knows.

Please try to ignore any spelling errors or mistakes you find in my writing. My disease has progressed to give me severe double vision. I have to close one eye to be able to see things like words very clearly. It must look comical to people seeing me typing (and a lot of backspacing) with one eye closed or covered. Otherwise I use voice-to-text, and I think we all know how that can turn out. So please be patient with me, try to get a giggle out of imagining how I am writing this, and try to pull out the meaning of what I’m really trying to say.

Despite Covid, we have managed to squeeze in some really fun things as a family. We drove to a nearby beach and had a wonderful time just playing in the ocean and sand, and since our room was right next to the beach, it was easy for me to take a break and just go up to the room and lie down. I could open the door to the deck and hear the constant soothing sound of the ocean. Mark is working on his doctorate, so that was pretty much the most relaxing way to do it. We were quite content just eating at home and staying in the pool and at the beach. It was just what all of us needed.

Shortly after we got back, my home hospice nurse came out for a visit, and she needed to send me to inpatient hospice because she was not able to get my pain under control. I have been there ever since, and while they’ve been a great help with some things, there is decline in others. It’s been a scary and hopeful experience, and I’m greatly ready to be at home in my own bed with my own loves snuggling me close.

We have been SO loved on. Our people from our small group have stepped in and cooked for us and cleaned for us, and visited me for hours of talks and laughs and all the most perfect treats they know that I love. My little sister even drove out from Kansas to pick up my kids and take them to her house for a week. While she already had 7 others. Who does that!!!We are so grateful to have people like all of these, loving us big. God is so kind to me.

Thank you for your thoughts and your prayers as we shift to this new season. We need your prayers and your visits and your reminders that God is faithful and good to us, and is holding us strong through each moment.

Thank you for listening. It brings strength to my soul.

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The End

All things must come to an end. Except suffering maybe. The verdict is still out on that one. I do not know anymore why I am so candidly sharing my heart-thoughts with a world unknown to me. When I first starting blogging, when our daughter died, I found it therapeutic. Getting my thoughts out and also believing they might help someone else who was going through trials somehow eased a bit of my grief. Then my life carried on and this horrible disease struck, and I kept putting it all out there. The good, the bad, and a lot of the ugly. What I’ve come to realize is I don’t know what the purpose for that is anymore. I am blaring my deep hurts, vicious disappointments, and strongest hopes to an audience who can neither see nor hear me, and the void of comforting souls doing life beside me remains vacant.

Perhaps one day my children will read my words and gain an understanding of the storyline that played in my head, hidden beneath the brave face I tried to put on for them, and they will learn the truth-depth that is woven in the coming and going of our every day.

Thank you each for being here to follow along and cheer me forward. For now it is time for me to step away, to let my silence be the echo of the words I have clung to for so long; Choose Hope.

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Just Keep Being

I was scrolling through my photos and feeling pretty grateful. It was a day of strength. A shunt adjustment this week seems to have given me some reprieve.

I got to witness the joy of my little guy filling up a backyard pool.

I got to melt into a puddle of all the warm amazing feelings watching my boys head off together with their fishing poles.

I was able to stand long enough to make trendy sweet coffee drinks with my girl.

It has been good. /Good/

But then I swiped to the next picture and it hit me like an unsuspecting slap that stung like fire.

It was there because I had been going through some old photos a few days ago and I’d saved it to send to a friend. I had been building this incredible list of small mountains I’d climbed, and reveling in the joy and fulfillment I felt, and this memory of my past swiped my feet out from under me and sent me crashing through a wall of heartache that I was not ready for.

So much emotion tied up in that one simple picture. The immense joy that being on the fire department filled my soul with. The overlooked gift of being hold a brush to paint my nails. The ability to use my thumbs for a thumbs up. In a splinter’s worth of time, I went from great heights to a mind crushing low. I felt sad to have ruined my gratefulness, but as I talked myself through it, I came to realize that it was absolutely ok to feel what I was feeling. A hard memory doesn’t take away the joy of important moments with my people. Those two emotions can live together. I was reminded of a card I read this week…

“You can be angry and at peace. Curse God and whisper His name for help. You can be shaking and sobbing and strong. You can be grieving and grateful. Jagged and graceful. You can paint your nails and curl your hair. You can also not give a crap about any of that right now. You can hide quietly in your closet crying and dance to loud music in the kitchen while squealing in laughter. It can all hurt even when it feels good. You can feel so darn lonely in your head, and you can feel the vibration of the world holding you up in love and prayer. There is no book for dummies on this awful thing. I imagine your feelings change daily, sometimes by the minute. There is no wrong or right way to be. Just keep being.” -author unknown.

I cannot think of a more perfect way to say it. Just keep being.

Please leave me a comment, it lets me know you’re listening!

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Cracks

I have been bedridden since February. Not exactly how I hoped this year would start. I feel like I miss so much when I’m tucked away in the corner of my bedroom. Weeks tick by and I keep hoping to put the worst of this year behind me.

Enter Covid-19. Suddenly my babies are home all day every day, and I’m a first grade teacher lying flat on my back in bed. He hasn’t complained; each day he climbs up onto the bed next to me and we do math, reading, writing, science… nestled among the pillows. But my heart is sad, disappointed. I’ve been given this incredible opportunity to have my littlest boy by my side for weeks on end, and the reel of my mind spins fast thinking of all the creative and memorable things I could be doing with him during this most intimate season of learning. Instead I feel trapped; bound to the square corners of my king-sized bed and quickly losing my son’s interest in the monotony of the same assignments day after day.

My husband works overtime; committed to his full-time job while also managing all of the meals, the laundry, the errands, the breaking up of fights as the tension of this season wears on everyone. I see the overwhelm and worry in the lines of his face and in the soft hunch of his shoulders. He’s married 18 years, but acting the role of single parent to the children and caregiver to his young wife. It silently breaks me.

Like most people during these unprecedented times, I am grieving many losses. Cancelled trips, time spent with friends and family, going to my little’s viola concert, attending my firstborn’s high school graduation. All of the little daily comings and goings that make life seem “normal.” Add to that my inability to be up and around occupying myself, and my heart has felt heavy and anxious. I have intensely missed gardening. For years as the winter months dissolve I have started seeds in my windows that have grown to beautiful plants cradled in the warm earth and bearing armloads of delicious produce and extraordinary joy. During these months that I have spent studying the ceiling from my place in bed I have grown more and more sad that the therapeutic tending of a small vegetable garden won’t be happening for me this year.

Wood. Saws. Screws. Measuring and cutting and pounding and smoothing, and a triumphant grin from my big-hearted husband as he shows me the hearty garden bed he has built to coax me out into the sunshine. Since I hadn’t been able to start seeds this year, he brought home small potted stalks of green life, ready to place in the fertile plot of sunshine. Oh how my soul sang as I gave thanks for the opportunity to tend something so special to me.

It took days of reaching for strength, of practicing standing without being overcome by the pain and vomiting that has plagued my body, but one cool gray day it happened. I was gifted with a period of strength and calm in my body, and along with a first grader who was growing wiggly with math and phonics in my big bed, I grabbed my garden gloves and we made a dash for the large box of deep earth. Together with chilled fingers and dusty knees, my little and I carefully tucked the robust plants and some dry seeds into the well-worked soil. It took all of my portion of strength for the day, but when we finished I had such peace and an exuberant sense of anticipation to watch my garden grow. It was such a gift.

I love his face SO much!

But, 2020.

As I was closing the shades of my bedroom window that overlooks the garden, I peeked out at the neat rows of leaves and plant markers that I had finished a few hours earlier. I involuntarily sucked air in fast, sharp. My garden was in a state of upheaval. Plants toppled. Leaves torn. Stakes scattered. Ragged holes dug in the once smooth dark earth. After many days of not giving the raised box any notice, apparently our dog had decided today was the day to climb into it and go tearing around in circles, digging holes and trampling plants.

And I cracked.

In that moment, the future felt empty of all the things to look forward to. While I burrowed under my quilt and felt the hollow in my chest and the sting in my eyes, I thought to myself how absolutely minuscule it was in the big scheme of things. A garden. There are so many huge battles people are fighting around the world; cancer, unemployment, divorce, death of loved ones… the list is endless. My family is safe, employed, fed, and sheltered, and yet the toppling of my vegetable garden is what undid me. I started to feel a little embarrassed at my ungratefulness.

The more I thought about it though, the more I realized maybe we all are a little like that right now. Maybe we are all just one more thing from screaming at the sky and cussing out the dog for just being well, a dog. Let’s face it ya’ll, 2020 has been a loop-thrower for all of us. We are all faced with stress and change and uncertainty unlike any we have experienced. It’s not just the pandemic, it’s the pandemic plus all of the other little hiccups we normally experience as we go through life. For me it’s been surgery upon more surgery and complications that simply won’t go away and a flooded basement and a broken into camper and sick kid and a bunch of tiny little things that each on their own aren’t such a big deal, but when you throw them all on top of each other and then ice them with a global pandemic and sprinkle them with a life-altering illness, it’s enough to make a person crack. Cry uncle. Beg for mercy. Tell 2020 that we aren’t friends anymore, and maybe we never really were friends, and it should go straight back where it came from and take all of this crap with it.

Are you with me? I feel like there are a lot of yesses. We are in it together, so let’s get through it together. Let’s be gentle with each other. Let’s check in on each other even when we are the one that wants to be checked in on. Let’s look for ways to cheer each other on and hold each other’s arms up and scream our battle cry so loud and brave that it drowns out the fear and frustration and helplessness we feel and replaces it with the rising up of all the people who choose to believe that something better is coming, and that hope is worth grasping for.

Please leave me a comment, it lets me know you’re listening!

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Quarantine. Nailed it.

Every time I’m on social media I see photos of people getting all their Spring cleaning done, exploring remote and beautiful chunks of outside, and doing fun and creative projects as they entertain and school their little ones. Just in case you don’t feel like you’re one of the ones out there killin’ it during this quarantine, I want to offer this up to you; solidarity.

This is month number three of lying as flat as possible because this stubborn spinal fluid leak won’t heal. I can’t be upright more than a couple of minutes without horrendous pain, and puking my guts out. That means Spring cleaning, nature exploring, and crafty projects are not happening in this house. The main man is juggling working from home as well as handling feeding the offspring and running any essential errands, I am making my first grader crawl up onto my bed so I can do homeschool lying down, and everyone is generally running amuck outside as well as consuming far too much screen time because, well, life right now. And guess what? We’re all going to be ok.

We all need to give ourselves a little grace and realize we are each doing the best we can. We are adapting and learning to overcome new challenges all while still embracing every good grace we can find and loving our people fiercely with all we’ve got. It doesn’t matter if you’re cooking a five course meal every night, or struggling through online learning in your pajamas every day, because no one gets to judge you. Do you.

Keep fighting, even when it’s facedown from bed. We’ll get there.

Please leave me a comment, it lets me know you’re listening!