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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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Hope and Healing?

Several weeks ago I had surgery to correct a problem with my VP shunt. A small handful of days before surgery my hospice company had been working on my recertification; that is getting everything in place for me to receive another 6 months of care. I was very anxious about surgery, but confident in knowing when I came home I would be in the good care of my hospice team. They have been so supportive and able to meet my needs no matter the hour.

Two days before surgery I got some very surprising news. My care team had collaborated, and they believed I have more like a year or two to live, rather than a number of months. On the day of my surgery, hospice would be pulling out of the picture and I would be transferring to palliative care, another aspect of comfort care.

At first we celebrated what that meant. The doctors seeing my condition stabilize and giving me a greater expectation of life was something to worship over! We had been seeking out some more natural ways of healing, and with the help of some friends also going before the Courts of Heaven to take ownership over healing for myself. This news seemed to be a nod that God in fact wasn’t done with me yet, and we had much to celebrate.

I am trusting God’s plan, but the transition has not been easy. When I came home from the hospital after surgery there was no one to come check in on me at home, and no one we could call at any hour if we needed more support. When my pain rises to unbearable levels we have to wait on a doctor appointment to address it instead of having immediate intervention from home. When I’m dry-heaving for hours on end and unable to keep my medicines down, we are on our own to fight through until relief is found. Instead of a phone call or home visit every week from one doctor who manages everything, I’m finding my schedule filling up with appointments I have to get to in order to see each doctor that handles each problem individually. That alone is exhausting.

I am dealing with infection from one of my incisions from my recent shunt surgery. Unfortunately because of where it is there is a risk of the infection traveling to my brain. It has taken many days and a slew of phone calls and my need to start IV antibiotics has still remained unresolved. These were the things that were easy when we had the hospice team at our fingertips.

While we celebrate that no more hospice means the anticipation of more days with my tribe, and perhaps even a complete healing of my body if that’s what God wihu, it has also been a bit of a challenge to adjust to. I did not magically feel better when I was given this news; instead I have continued to fight hard daily battles, only without the support I had grown comfortable with. I have had to fight harder with less support, and my capacity to do so taps out so quickly. It has meant long stretches with no relief from pain Sleepless night upon sleepless night. Indescribable fatigue having to make phone call after phone call to set things up or to get myself out in my wheelchair to see doctors in person.

I pray this will settle down; that we will eventually find a rhythm in which my needs are met and we can go longer stretches between doctor visits. I pray my focus can remain on living my days well and embracing the moments that will last. Right now I feel like there’s not enough left of me for my family at the end of the day, and I hate that feeling. I know God has a plan in this. Will you please pray that members of my palliative care team will rise up to take some of the burden from us? That I will find rest and restoration at home, and be able to extend myself further to my family?

I’m thankful for you, dear reader, and the support and encouragement you have graciously continued to extend to me. Please tell me how I can pray for and support you as well!

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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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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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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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Being Brave

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?

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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!