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War

“War is hell.”

-General William Tecumseh Sherman

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I am tired.

So tired.

Tired in the marrow of my bones and to the bottom of my weary and tattered heart.

I feel beaten by the daily battle of fighting for life and time. Battling the indescribable pain that ravages my muscles and bones. Battling against the constant nausea that the pain brings. Battling to feed a body that usually has no appetite. Battling to take breaths when even while awake my body forgets to.

I am tired of seeing the grief my children carry over watching me become so different from the mom they knew. I am tired of watching my husband grieve over the things we used to do but no longer can. I am tired of feeling like a failure because of the things I can’t accomplish anymore.

And then I flip open my journal and there, taped inside the cover is the reminder I left for myself…

And I look at their faces and feel my weary heart swell with the uncontainable love I have for them and the bottomless joy that they bring.

And I pull myself up and don my armor and push through each battle with renewed determination. Because no matter how tired I am they will always be worth the war.

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Time

6 months ago my hospice doctor signed a paper that said if my disease continued at the current progression my life expectancy was 6 months or less. Welp, surprise! Here I am! Seriously though… I know that no man can put a number on my days and only God knows when that time will be. And it will be the perfect number of days, because He planned it that way.

Does it weigh heavily sometimes having that kind of thing spoken over you? Yes absolutely, but I have to choose to continually give my fears and anxieties over to my Heavenly Father, because I’m not meant to carry that kind of weight.

With the help of some insanely wonderful friends and even people I have not gotten to meet yet I have been able to try some more natural treatments for my body, and while I do not know for sure how they will work I know they are a gift from God and they do my body good. I know that I’m still here.

I am so thankful for more time. There are days when things seem scary and overwhelming, but we keep taking each next day and making it the best it can be, because it is truly a gift. The gift of time. The gift of more snuggles with my littles. The gift of more smiles, more memories, more treasured conversations with my people. It is not lost on me what an incredible blessing this is.

I remain in hospice care at home, and my team members are the most compassionate people you have ever met. I’m so blessed.

Some of my favorite people have moved mountains to span miles and spend time with me and check in on me and love me in all the ways. My home is a revolving door of my local tribe encouraging me, entertaining me, bringing me sweet love. After a long and hard period of extreme isolation and many prayers for community we have been surrounded in the most amazing ways.

Sometimes I look into my eyes and I see that it’s changing me and I get afraid. I wonder what’s going on in there and what my future days will look like. Then I remember I have not been given a spirit of fear, but a spirit of love and of power and a sound mind. That’s all I need.

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Difficult Days

I am fighting for good days. I dislike the desperation in that sentence, but it is the most accurate. The pain that used to be a whispering reminder is now a roaring force that seems to sneer at my attempts to quiet it. It mocks me as I try to plan time with my beloved friends, and it smirks when I have to scrub my calendar to prop myself among my pillows instead. I did not expect for pain to be the thing that makes me feel so desperate.

I wish I was kind and gentle even in my hurting, but sadly it makes me irritable with the ones I love, and makes me say things I know aren’t true to my character. There are medications to help, and some of them work quite well, but change my personality and bring out a mean streak in me. In my mind it will never be worth easing the throbbing at the expense of my family’s feelings.

The medication that works the best to take the edge off of my pain makes me staggeringly sleepy. I’m so thankful to have something that works, but I find myself having to choose between being comfortable and asleep, or being awake and in agony. Sometimes I choose one, some days I choose the other. Neither one of them feel fair.

I am trying to find a balance; staying present enough to love on my people, and allowing myself respite from the agony that threatens to break me. Will you pray for me? That my moments with my tribe will be multiplied, and I will have the strength to ride out the hardest parts with grace and patience for the better days that are coming.

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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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Life Expectancy

My 6 year old climbed into bed with me and let out a deep sigh as he laid his head on my shoulder.  His babyish fingers fiddled with the green beads on the bracelet I had given him when he asked for something to “remember me.” When I asked him what he was thinking about, the fears came spilling out.  “I don’t want to miss you mama, I want you to stay.” He echoed what my heart whispers every time I look into the eyes of my little people.  We all want more time.

My condition has a life expectancy of 5-15 years.  My symptoms started 6 years ago. I guess many would say I’m living on borrowed time.  It’s a heavy thought when you think of it that way. That’s the thing though; every one of my days  are already perfectly appointed, however many that may be.

It’s easy to get caught up in fear when you have something that has put an expiration date over your head.  I’m not going to lie and say my mind doesn’t wander there, wondering sometimes over how long I have.  The more I have moved and leaned into this season though, the more I am filled with an overwhelming peace that I will be here the perfect number of days.  It’s a painful belief we have that people are taken from us too soon.  “She was too young.” “He died too soon.” “She was taken from us much too early.”  Can any of us point to someone who died right on time?  I choose to believe that God allows each of us to die at the perfect time, regardless of the circumstances.  This gives me so much freedom.

Instead of focusing on my life expectancy, I’m choosing to live expectantly; expecting joy, daily graces, and the perfect number of days to do life here with my people.  I’m soaking up the snuggles, rolling with the grumpy mornings, and pledging to be present for the big and small moments of every day without fear over my future. What if you decided to believe that everyone is here for the perfect number of days? Who would you be?

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

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Missing…

“They say sometimes you win some
Sometimes you lose some
And right now, right now I’m losing bad…”

I am still going to bed having filled out my gratitude journal. I’m still whispering thanks for my multitude of blessings. I know tomorrow is a new day with new promise… but tonight, tonight it just doesn’t feel fair.

I know You’re able and I know You can
Save through the fire with Your mighty hand
But even if You don’t
My hope is You alone.
I know the sorrow, I know the hurt
Would all go away if You’d just say the word
But even if You don’t
My hope is You alone.”

-Mercy Me “Even If”

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

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Mixed Media Self Portraits

When Mark travels for work we don’t do much. That can be tough for the kids, but without him here to drive us and to push me around long distances in my wheelchair, we just aren’t really capable of getting out. I try to plan special things for when he’s away that break up the time and give the kids something to look forward to. We almost always order pizza with all the topping he won’t eat (hello olives and peppers!), we rent movies, and come up with activities we can do while we are huddled in. Today I’m sharing with you a fun idea we copied from another family, and had so much fun doing it.

First I took a picture of each kid (and dog) against a white wall in our house. Then I printed them out in black and white, set out our crafting buckets, and let the kids get to work. The rules were there were no rules. They took scraps and stickers and colors and every creative thing they could rummage, and transformed their pictures into works of art. I did some with them, and we truly had the best time giggling and getting our creative juices flowing. The pictures are proudly displayed on our kitchen wall, until the next thing we come up with!

Try it yourself! It’s great fun for kids and parents alike!

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

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Hard Doctor Day

Yesterday began at the office of my tender hearted hospice doctors. Despite my anxiety, I am always soothed by the kind hands and gentle eyes that meet me. Hearts that truly want to help; to listen and find the thing that will make my days the most bearable. I always end these visits knowing that I matter, that my needs are important, and that I have a team in my corner.

My heart thumped more uncomfortable as I had to brave the pulmonary office later. There is not the same gentle atmosphere, but one of facts, hustle and bustle. I knew by my panting for air and the bluish of my fingernails that I was fighting harder. There was no tenderness in the hard words; my days could be changing, my lungs needing more support. My positivity deflated as I considered my days tethered to these machines that help me suck in and out the air of living.

Immensely sad is what I know I felt, but it came out as anger. I didn’t even know where to direct it, and my sweet little loves ended up getting the brunt of my frustration as I reeled with how to reconcile my thoughts and fears. I finally removed myself, tucking early into bed so as to not keep expressing my frustration to the people I love so dearly. Some days you just have to put it all to bed; pick it up again when your courage is renewed.

The facts are the same today, and my heart is still sad, but I am renewed in my hope for these coming days. There is nothing I won’t do to fight for more beautiful days with my people. Expectations laid aside, for I know that the true meaning of my days is not found in my misguided expectations, but it’s found in the great gift of deeply loving and being deeply loved by my people. That’s where you’ll find me; wrestling another hard bit of my story, but drinking deep in the grace found all around me.

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

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Four Faves

I’m away from home in a strange bed tonight, and I thought I would do something a little different on my blog to pass the time. As I grabbed a few “necessities” and threw them in my bag on the way out, I thought about how some of the best things are discovered from other people’s suggestions, so I’m going to share with you a few of my favorite things!

5 gum in Strawberry Flood. It’s no secret that the peppermint 5 gum is my absolute favorite, but not too long ago I tried the strawberry on a whim when I came across it. Just like the mint, it keeps its flavor long after most gums fade. The strawberry is a perfect blend of tart and not-too-sweet. It’s juicy and fruity and just the best pick me up on a hot day of running around.

Double stuff is my jam, but an Oreo completely encased in fudge? That is perfection! These tiny bites have the perfect ratio of cookie to chocolate, and they come in pre-measured portions so you don’t go overboard! They also come in flavors like mint and coconut if you’re looking to switch things up.

BiC Gelocity pens. Not only do these come in a bunch of vibrant, fun, as well as practical colors, but they glide so smoothly you’ll never want to stop writing! I use these for jotting down notes and writing letters, as well as doodling or drawing in my journal and sketch pads. The creamy inks are a pleasure to work with! I keep a variety of pens tossed in my bag for when opportunities arise.

Ecolips lip balm from Whole Foods. This organic lippy is divine, and I find myself reaching for it time and again. It moisturizes exceptionally well, and never feels thick or sticky. Yumberry is my favorite flavor, but they have many delicious flavors to choose from, like vanilla honey, blood orange, and pomegranate.

Black paper sketch pad. I got some great new markers and pens for my birthday, and I picked up this sketchbook at Michaels to practice with them. Not only are the pages super smooth and thick enough to prevent bleeding through, but I absolutely love how it makes the colors pop!

There you have it, a few of my favorite things. I hope you find something new you enjoy!

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