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Slipping

Last night I was in bed not sleeping for various reasons and in my idle fidgeting I slapped a photo of my face-meltingly adorable son and puppy sleeping next to me up on social media. They truly are the cutest in all the land.

It did not take long before my phone made a little blip saying I had a message from one of my dear friends on the West Coast, undoubtedly seeing my post while going about normal evening activities because it is three hours earlier there. The time difference has often proven a welcome chasm between us during those long hours of insomnia.

For the better part of an hour my friend and I messaged back and forth, her asking about what’s new in my life and me divulging all the things. After a lull in our conversation she said that she was going to sign off and get some sleep. It came crushing down on me like a stack of cement bricks. I had not even asked her one thing about herself. How she was doing. What she was up to. If she was even ok. I was mortified and devastated. I felt so out of character, so disgustingly selfish, and then while I stammered my apologies I remembered why I had not asked. I had not asked because I forgot.

I did not forget because I was so anxious to blab about my hardly new life updates or because I was distracted multitasking. I forgot because my mind did not remember to remember. It is slipping.

Friends, when I do not call your children by their names that I’ve known for so long, it is because I am afraid I am going to say the wrong name. I was not so busy or distracted that I did not have the time to wish you a happy birthday or ask you how your cold was feeling or if you had gotten the call you were waiting for. You did not hear from me because I forgot. That laughter did sound forced as we reminisced over a funny memory; it really was nervous laughter because I was dashing through places in my mind trying to find that memory and I could not. And it’s terrifying.

Please know that my heart is still first and foremost for my God, my family, and my people. When I come across as rude or insensitive or dismissive, it is not for lack of not cherishing you as I always have— I simply cannot seem to string together all the pieces to remind myself of everything I am proud to be. Please remind me.

Tell me stories again and again for as long as it does not drive you insane, because when you take the time to remind me it allows me to relive that moment of joy with you once again for a short moment. The joy of learning your name. The joy of realizing all we have in common. The joy of knowing how deeply valued and seen and absolutely loved you are to me. Even if I cannot remember to say it, it is still there. Somewhere.

Blow up my phone. Grab me if you see me out and say hi. Remind me who you are and why I’m the luckiest to know you and then please keep being part of my tribe! Remind me of who I am and what I love and be relentless, because the forgotten space is a really lonely place to be.

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Urgent Update

Several weeks ago it became apparent that my gallbladder is the next thing that has fallen victim to my MSA. With it no longer communicating with my brain about what to do I started experiencing some really painful complications. I was sent to see a surgeon about taking my gallbladder out, unfortunately my pulmonologist was not on board with clearing me for surgery. His concern over the weak state of my lungs is that if I am put to sleep and given a breathing tube, it will be likely that they won’t be able to wean me off of the tube, and I’ll end up with a tracheostomy.

A trach has already been on the table for some now as we watch and wait, so a part of me has already come to terms with that, but I also feel like it’s not time yet, and I know God is bigger than any complication.

A few weeks down the road and I am now admitted to the hospital because the pain and other symptoms from my gallbladder became too much to bear. I have a large team of doctors talking and working together, and the general consensus is to move forward with surgery, likely today now that it is an urgent situation.

I am completely at peace with what the Lord has for my future, but would you pray with me that my lungs will stand strong and I will be able to tolerate surgery and wake without a breathing tube or trach? I believe God wants the best for me, and I know He delights in showing His power when we ask. Regardless of the outcome, I know my God is good and there is no shortage of his goodness and grace in my life. For as many days as He gives me, I will live my moments for Him.

Thank you for walking along side me and helping sustain me and my family through these twists and turns. Your love and support are priceless in our lives. ♥️

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Sink or Swim

This week was the end of me. I felt like the last drops in my cup were sucked dry and I had nothing left to give. Frustration over my exhaustion and inability to keep up in the midst of daily hardballs left me convinced the best thing for me was to quit fighting for well, anything. Least of all myself.

As my body does, it decided another shut down was in order, and my digestion came to a screeching halt. This led to constant discomfort, and frequent vomiting even though I wasn’t eating anything. For three days I was in bed burning through barf bags or clutching a big metal bowl while at the same time trying to single parent my little people and see that their needs were met. I was not able to get up and feed them one meal, so they did without or got by on bowls of cereal and Halloween candy. It is heartbreaking to not be able to do the things I want and need to as their mom, and the volume gets turned loud on all the voices telling me I’m failing at motherhood… and everything else.

This is a lonely season of trying to build community without always having the strength to do it. This means long hard days scraping by and simply doing the best I can usually at the minimum amount. I long to be in a place again of having community to surround us and pick us up and meet us in the messes, because doing it alone is awful.

Despite my grumpy attitude and dismal outlook God showed up in the flesh of a friend who saw my frantic social media post asking for help and dropped everything to pick me up and not only see that I got back and forth to a small surgery, but while I was under she shopped for meals for my kids and stocked my freezer with things they could make in my absence. The “Just Show Up” mantra that I’ve tried to make part of my life song was so beautifully expressed in the serving kindness of my friend that day.

It is embarrassing now, but I felt so helpless I texted another friend and told her I had nothing left to give and she deserved better than me. I basically told her she needed to drop me like a sack of rocks because I did not have what it takes to be a good friend. Instead of stepping back she pushed in. She responded, “I’m not letting you break up with me. You can’t get rid of me.” I don’t know what I was expecting, but her response cracked a small grin across the weary furrows in my face, and the brick wall I was trying to build started to crumble.

Thumbing through the pages of my Bible I was brought to 2 Corinthians 10:5, which reminded me I am to take each thought captive in obedience to Christ. I heaved a sigh heavy with burden, gathered all my thoughts of overwhelm, anxiety, and defeat, and imagined placing them at the feet of my Heavenly Father. Peace washed over me; relief that these heavy weights are not mine alone to carry.

I was reminded me that I cannot control everything that comes my way, but that I can decide if my life will be marked by defeat, or by a patient trust in a Heavenly Father who loves me and knows where I am at every moment.

I cannot help but wonder who else is finding themself at the end of their rope this week. I wish we could all gather in solidarity and speak truth to bolster each other in our capacity to carry on. It always seems easier to encourage others than to encourage yourself sometimes. If you are in that spot this week raise your eyes up; remember that the hairs on your head are numbered and the birds outside the window are under the Lord’s watchful care. As we reflect on Him it is easier to be assured of His strength and less intimidated by the size of our problems.

God has promised us abundant life. I don’t want to miss that because I am tangled up in worry and frustration over circumstances that are not mine to control.

Here’s to the ending of a hard week and the beginning of a fresh one, Saturday sports games, Sunday morning donuts, and knowing that we do not have to be strong enough to carry our own burdens. Jesus has us on the hard days just as much as the easy days and beckons us to take up His yoke which is easy and His burden which is light, and he will give us rest for our souls.

“Even though the fig trees have no blossoms, and there are no grapes on the vines; even though the olive crop fails, and the fields lie empty and barren; even though the flocks die in the fields, and the cattle barns are empty, yet I will rejoice in the Lord! I will be joyful in the God of my salvation. The sovereign Lord is my strength! He will make me as sure footed as a deer, able to tread upon the heights.” Habakkuk 3:17-19

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Taking the Leap

Sometimes it is easy to let myself get dragged down and have a pity party about the things I cannot physically do anymore. I am constantly working to change this posture of my heart by replacing the “can’ts” with gratitude for the things that I still can do. Yesterday provided the most epic opportunity to make a can out of a cannot.

I have been enjoying a few days with some girlfriends at my friend’s lakehouse. They have lovingly cared for me to make things as easy as possible; driving me, cooking for me, carrying my bags, and bringing me whatever my heart desires. I am so spoiled.

Yesterday was boat day. Because of a hitch with my medical care and insurance, I have been without portable oxygen when I leave the house for some time now. Instead of letting me be without oxygen for a few hours while we were out boating, these girls packed up my boulder of an oxygen concentrator and lugged it down hills and over docks to get it into the boat so I would not be without it.

We had an amazing day buzzing around the lake soaking in the warmth of the sun and cooling off in the refreshing waters. We laughed, we relaxed, and we stopped at the big pier for some of the best soft serve ice cream.

It was near the end of our time on the water that we happened upon the “jumping bridge.” I had seen it before as we had driven over it. An overpass covered in colorful graffiti, it beckons the bravest of swimmers to climb the steep, rocky bank beside it and plunge into the deep water below. I had commented on how much my oldest son would love to do that because he is thrilled by finding tall things he can jump off of into water. And then my mind went on a lot of little bunny trails, but I’ll skip that part and get to what you want to know. I decided, “I’m doing it.”

My friends watched anxiously from the boat as I ditched my oxygen tubing and awkwardly swam-paddled my way to the shore. It was then that I realized my chest port was still accessed; a big risk for infection. I found a place where I could stand firm between the jagged rocks, and I began pulling off the medical tape and dressing, finally able to pop the needle out of my chest. With no sharps container in sight, I tied the tubing and needle around the belt of my life jacket so I would be sure not to leave it lying around.

It took me a few minutes to pick my way barefoot up the rocky incline, but I finally made it to the top and limped my way to the middle of the bridge.

There was a young boy standing nearby, trying to gather the nerve to jump off into the water below. I asked if he wanted to go together, but he wasn’t ready yet. If I had stood there very long and thought about it, I probably would have talked myself out of it, so I took a few breaths, gave my friends the “ok this is about to happen” sign, and I stepped off the ledge into the nothingness.

To an able-bodied person it may seem small and insignificant for me to have made that jump, but the joy and power I received from that free fall into the cool, summery water put a confidence and satisfaction in my soul that will last long after swim suit season is over. I did something the world tells me I’m incapable of. I did something my body sends off all the warning signals against. I did something that says no, I refuse these limitations and I believe in more.

It was not until I looked back through the pictures that I realized that right where I had chosen to stand the word “Hope” was spray-painted on the concrete behind me. How perfectly perfect.

Sometimes we have to accept “no,” but I hope that you never stop pushing for the “yes,” because the reward is most definitely worth the pain, even if all you can do is try. That is already a win.

Click play below to see my epic jump!!

******Update******

I spent the whole next day curled up in a chair and hobbling to the bathroom, but I would absolutely do it again. I made my family FaceTime me while they watched the video, not knowing what they were about to see, and it was priceless!!!!! Pretty sure I scored some cool mom points too 😉

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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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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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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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Running

There are many things I struggle with in regards to living with a terminal illnees, and one of the big ones is being able to be active. Working out or going for a hike or a run has always been one of the best coping skills and stress reliefs for me, and I struggle with not having a comparable activity now that I’m not able to do those things.

Though I usually ran just for fun, I had set a goal for myself once of running a race someday. I figured even if I did just a 5k one day, I could knock it off my list and enjoy the experience. Well I sat on that goal for too long, and it never came to be.

Fast forward to today… I came the closest I will to meeting that goal! My friend and fire partner, Michael, who has a lot of miles under his running shoes, teamed up with me to do a 5k together. We chose a virtual 5k that fit our friendship perfectly, mapped out a course, and he pounded the pavement while pushing me in my wheelchair. It was glorious! When I closed my eyes and listened to the rhythm of his feet against the ground, with the fresh air tossing back my hair, it almost felt like I was running.

I know it wasn’t easy; he had to navigate getting my wheels across places with no pavement, bump me up and down a few curbs, and push me up some ginormous hills.

He never complained, and just chugged along like a freight train. It was such a special day of fun and friendship, and I’m so thankful for Michael going above and beyond to help me accomplish something in the best way I could.

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