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.
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.
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.
We recently had family pictures taken, and they turned out beautifully. I’m so thankful for the extra time taken to capture moments of me with each one of my little loves, as well as the man of my dreams. As beautiful as they are, when I look at them I swallow a hard knot wondering what the future holds. As I’m fighting for another Christmas I’m overwhelmed with thanks with each moment of time I’m given; we’re all given.
As I poured over our photos and soaked in the soft background light and the beaming smiles, something struck me. It looks like such a warm Fall day; our faces lit with sunshine, and I look so strong standing beside my people.
Well let me take you behind the scenes. It was FREEZING. I mean nose-running, eyeball-gelling, goosebump-shivering cold. This kind of cold is especially hard on my muscles, escalating my normal spasms into arms and legs that lock up and refuse to move.
This is how that day really looked: I was in my electric wheelchair bundled in a coat and covered in a thick blanket. We would roll to each new backdrop and I would be helped to pull off my blanket, yank stiff arms out of my coat, take my oxygen tubing off my face, shuffle to where I needed to stand, and then prop me up for the next shot. Then back to the chair, coat on, oxygen on, blanket on, roll to the next place. It felt so messy and chaotic, yet you’d never know that looking at our pictures.
That’s what struck me. It was such an important reminder about how appearances are deceiving, especially on social media. We can all be really good at hiding what is really going on. Unfortunately that’s usually our default; pretend everything is ok. Remember that many people are fighting hard battles even though you might not see them, so offer grace, extend kindness, and never assume you know the whole story.
Leave me a comment; it lets me know you’re listening!
Trying his best to make each special event an amazing memory for us, my sweet husband booked us an Airbnb for a short getaway a couple of cities away for our 19th wedding anniversary in November. This man; he is the king of making good plans, and the expert at rearranging them when life gets in the way. On our 19th wedding anniversary I was in inpatient hospice because my pain was so severe, and I was under quarantine because of a covid exposure. Draw a big scratch through those plans. He came up with a back up plan and made it wonderful and memorable, and I enjoyed every minute of it, but we still had these Vrbo reservations to see about.
Hubby reached out to the owner and explained our situation and asked for an exception, and they allowed us to move the dates of our Vrbo stay when I was out of the hospital. THEN I was invited by a friend to fly out and spend time with her getting her new condo set up in her brand new town. Now friends, my hubs is fiercely protective of our time together, but he is also the master of flexibility, and understands each moment and each possibility is truly a treasure for me and for my people right now. He reached out again, got another exception to change our Vrbo dates, double-masked me, and put me on a plane to make memories with my friend. My friend and I had a wonderful time, and then the day finally came that it was time for Mark and I to run away together. Giddy like a schoolgirl!
My husband is a rockstar at finding cool places for us to stay, and this weekend did not disappoint. He found us an apartment complex built in the earlier 1900’s that had so much class and charm, and was the perfect place to tuck away and socially distance for the weekend. He cooked for me, hauled around my heavy wheelchair whenever we needed it, let me sleep in, and gave me a heart full of special and lasting moments to tuck away.
We pretty much had the run of the place, hardly seeing anybody when we ventured down to play ping pong or snuggle in the hot tub. There were gorgeous details to catch your eye all throughout the building, but our apartment was simple and cozy and just the perfect place to hide away.
Throughout dating and on into our marriage Mark and I created a fun tradition of getting super dressed up and going out on a date. For our very first “formal” date over 20 years ago, we got dressed to the nines and Mark took me to a baseball game, build-a-bear, and then dinner at Morton’s; the best steakhouse ever. This weekend we were tickled to find just a few blocks from our apartment was a Morton’s, so naturally we made that our choice for our dressy dinner out again 20 years later! It was dreamy!
The wait for this trip was worth it, and thanks to Mark we had a wonderful and very special 19th anniversary. We celebrate often and we celebrate big; fully embracing each of these treasured moments I’m given.
I’m so thankful to my man for working so hard to make sure we could do something fun but still accommodating for me. I’m thankful he still enjoys pursuing me, and lets me play dress up . I’m thankful most of all for the quiet, rejuvenating weekend we had together and the new memories made with the love of my life.
It gets said a lot; you are so brave. When it is said to me I think to myself, “I am not brave, I am barely hanging on.” I have always self-described bravery as purposely doing something big and scary. Like something voluntary I think. I have always felt like brave is more of a choice rather than something you just are.
Recently my pastor came and sat at my bedside. His enormous hand swallowed mine, and he looked me in the eyes and said, “you are so brave.” I responded by telling him I don’t /feel/ brave; I feel like my anger and my fear and my disappointment is the opposite of brave. It planted a seed in my mind though. I started wondering what brave actually means.
Back in my day, before Google, we had these things called dictionaries. They were huge books that had the definitions of practically every word you could think of. So, I dictionaried the word Brave. Yes, I am making a new word because in this day and age of everything being looked up by Siri I feel like the good old dictionary deserves its own new description that I can convince my kids is real. Dictionaried. That’s what I did. The Oxford Dictionary said this under the word brave:
“Ready to face and endure danger or pain.”
It did not say you come looking for the danger or pain, but are simply ready to face it; assuming it has instead come looking for you. It was such a simple definition, but it resonated in my bones. It did not say that bravery is a lack of fear. Wow. This changed my whole perspective. It is ok for us to show up shaking and sobbing and scared out of our ever-loving minds, but being brave simply means being ready for the fight.
My danger and pain today is facing Botox. It is injected into my hamstrings and some of the muscles in my legs to loosen the spasms and help me retain more range of motion. The last time we did this I passed right out on the very last injection. Naturally that bad experience has me feeling extra apprehensive this time around. I know however, that I am putting up the fight of my life. That is my brave; still being afraid of what is going to happen, but showing up anyway because I know good will come of it. Courage is not fearlessness.
Friends, whatever you are facing today, just getting up and facing it makes you brave. You do not have to have good feelings about it, you just need to show up with the ability to endure. The world knows you are afraid, but you love more than you fear, and that is what we all remember about you. Let’s take on today, shall we?
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.