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Perseverance

Recovery from this last brain surgery has been one of the most difficult obstacles yet. It was a big hurdle to get through having seizures and being on a ventilator and in the ICU right after surgery, but the challenges since I’ve been home have been a whole other beast. One that shook me a bit.

I was so excited and thankful to go home from the hospital, but I was not there long before we noticed something was really wrong. My short term memory was almost non-existent. Every day I would forget the day before, and often I would not even remember things from earlier in the same day. Entire conversations were deleted, things I had experienced earlier evaded me, and I often could not even remember what I ate for the previous meal, or IF I even ate. I remembered enough to know I was forgetting, and it was terrifying.

My husband is the very definition of steadfast. He would lovingly and calmly repeat things to me as many times as I asked, and would gently break it to me that we had already had this conversation or done that activity. Meanwhile I was curled up sobbing; broken that my husband was having to watch his young wife like this, and terrified that the rest of my days would be more of the same.

After a weekend like this my sweetheart reached out to my neurosurgeon, who unfortunately is a 2 hour drive from us. He has taken up my cause though, and would bend over backward for me, so it was no surprise that only a few minutes after leaving a message my hubs got a phone call from the doctor himself. Based on my memory problems and a handful of other symptoms I was experiencing my kind doctor explained I was probably continuing to have seizures, albeit small ones, but with enough frequency that it was throwing my mind and body into this blender of confusion. A treatment plan was initiated and they waited expectantly for results, but in my heart I was suspicious and saddened that this was truly the beginning of the end of my time here. I kept that fear to myself.

My love had a trip on the calendar way before any of this happened, so he somewhat reluctantly left me in the care of friends and family while he went on travel for the next week. That week was hell for so many reasons. It took several days to realize it had been a week since I had kept down any food. I switched to nutrition solely through my feeding tube, but quickly discovered all of the vomiting had displaced my feeding tube, so using it was not longer an option. I tried for a few more days to limp myself back to stable, but I could not even keep down jello or sips of sprite, I could only stand for seconds at a time before getting near to passing out, and my blood sugar was dangerously low. It was the last thing I wanted, especially without my wingman with me, but I had to go to the hospital for help.

It took some convincing for me to let them admit me again, but once I agreed to it they were aggressive about getting me sorted out, and I started to rebound quickly. With some IV nutrition and my feeding tube fixed, I quickly gained strength to be able to go back home. It was then that we realized that while fighting face down all week I had been too sick for us to realize that my memory was improving. Back home again I was able to remember things for longer and needed less reminders. One of my close friends had marched straight to the courts of Heaven and pleaded on my behalf, and God had honored her faith; he was healing the damage in my brain.

I will not go as far as saying that I am happy I had to go through all of that, but I will say amen and amen to my God showing his grace and great loving kindness in choosing to bring healing and restoration to me, and I do not believe he is done yet. I would not have chosen this path of suffering, but I will hold on because suffering produces perseverance; perseverance, character; and character hope. And hope has been the song of my heart through years of great challenges and life changing pain, and it will continue to be my heart song until my eyes finally gaze on the Giver of all hope.

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Mother’s Day Remixed

For days my kids and I chatted about what we would do on Mother’s Day. Sleep in…snuggle up to breakfast in bed… go out to a favorite lunch after church…stay in playing board games… go out to explore the beauty of a new park.

All week I had been hearing the excitement of my littlest guy as he earned his own money to create a project at school that his whole class were each making for their moms. When he came home from school Friday holding a beautiful flowered gift bag he was vibrating with excitement over getting to give it to me on Sunday.

Friday afternoon we got a call that would demolish all of our weekend plans. Ever since my shunt revision surgery nine weeks ago I have been fighting infection in one of my incisions. My neurosurgeon has kept in close contact with me as I know have done multiple rounds of antibiotics to try to clear it up, and sent regular photos of my incision to document its progress. Unfortunately on Friday it was obvious the infection has gotten much worse and was not responding to the antibiotics. It is a dangerous place for it to be located as there is a very small distance from the end of the tube to my brain. We have given ample opportunity for it to heal itself to avoid further intervention, but Friday it became obvious that my neurosurgeon was going to have to step in.

My kind and gracious neurosurgeon requested that I drive to Indianapolis to be admitted through the emergency room. They would immediately start IV antibiotics and plan to take me to surgery Monday to remove more of the shunt tubing and hopefully eradicate the infection. My heart sank at the thought of another surgery, but most of all at the thought of being far from my family again.

It felt like I had a boulder in my stomach when I sat Colby down to tell him the news. As expected, his face dropped as I told him I would no longer be home for Mother’s Day. He sat with his chin in his hands and big tears silently rolled down his cheeks. “This’ll is the worst Mother’s Day ever, Mom.” I had to agree. It was heartbreaking to see his grief over being able to plan a special day for me. We decided we would have a welcome home/Mother’s Day celebration on the day I get released from the hospital, so he was given the option to give me his gift before I left for surgery or to save it for when I came home. He said he wanted to give it to me now so that I could take it with me to the hospital.

My heart will forever have captured the picture of him walking into the room so carefully and proudly holding the flowered gift bag that he had chosen for my gift. He sat by excitedly as I unwrapped it. Tucked inside was a small wooden frame carefully decorated in butterfly and flower stickers, and holding an adorable photo of my precious eight-year-old, holding a beautiful bouquet of flowers. The tears hung in my throat as I lavished thanks on him and gave him all the hugs and kisses. It was the most thoughtful gift ever. He made sure I had room to take it with me to the hospital.

My sweet girl Baylie also gifted me: a delicate necklace with the word “Hope” on it. Boy does she ever know!

Late that night Mark took me to the store and I picked a small gift for each of my kids so that they would have something from their mama for Mother’s Day. It was so special the next morning to be on the phone with them as Mark handed them each their gift from me. Loneliness and disappointment turned into excitement and smiles as they each opened something from their mama 110 miles away, but right there with them at heart. It was not the Mother’s Day we imagined, but we found the grace to make it something special and memorable, and we still have a Mother’s Day celebration day to look forward to upon my arrival home.

My sweet boy Jacob surprised me yesterday and drove the whole two hours here to spend some time with me. I can’t even express my gratitude at how much it uplifted my spirit. These sweet babes have touched their mama’s heart in ways they’ll never comprehend.

Last night after Jacob left I had the kindest hospital tech taking care of me. He asked me about my kids and listened as I raved about them. He then sneaked off and brought me a delicious chocolate chip cookie, that I believe were supposed to be just for the staff! “Happy Mother’s Day,” he said. “I’m sorry you’re spending it here.”

It truly is each small kindness and bit of grace that keeps me going.

Today Mark will come down to Indianapolis to be with me as I’m taken to surgery. I’d greatly appreciate your payers for all to go well, and for there to be no more complications, only healing from this point forward.

Thank you for being my people and standing in my corner to hold my hands up when I’m too weak. It means so much to know I have an army of people behind me on the hardest of days.

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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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Under The Cover

We’ve all heard not to judge a book by its cover…

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!

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Skipping Town

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!

Morton’s Steakhouse
Filet perfection!

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.

Beautiful brickwork
Stunning
Each elevator door had a different dog picture!
Taking on our second puzzle
No kids + no cats = no missing pieces!
Pool, hot tub, and lots of bling
Me losing at ping pong
Hot tub with an amazing view!
Tallest shower ever, and it felt like standing in an actual rainstorm.
Beautiful time in a beautiful city

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.

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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!