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.
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. ♥️
Smoke mingled with the clean scent of antiseptic as the ambulance doors were thrown open. A woman’s voice crackled through the radio following the long beeps of the station tones. “We have a call!” My partner’s eyes were wide with anticipation as she repeated what I was already hearing. We had been working on a training exercise at the fire station, practicing rescue of a downed firefighter in the midst of a woodsy blaze. The large rubber manikin that was our pretend victim lay heavily on the stretcher that was now needed for an actual patient; the victim of a horrific vehicle collision. Wasting no time, I jerked the straps off of our lifeless dummy and heaved him over my shoulder, all 165 pounds of him. Nudging wider the ambulance door, the whole battalion had eyes on me as the scene played out that would be retold for years to come. I, the tiniest on the department standing at 5 feet 2 inches and a hundred and five pounds marched with that dummy over my shoulder and chucked him into the empty garage bay of the station. Spinning back around I crunched through the gravel and hopped up in the passenger seat of our rig and we barreled down the road to my first trauma call.
That was the day I earned my nickname; Mighty Mouse. The story would be grinned about for years to come; the department’s smallest firefighter who manhandled the Rescue Randy dummy because she got her first real patient. A mix of adrenaline, excitement, and the hard work I had put in to keep up with everybody else had enabled me to perform that amusing feat that day.
Fast forward to a cold April day in 2022. My arms shake and spasm as I lift a stack of dinner plates toward the open kitchen cabinet. Overpowering my waning muscle strength, the stack of plates comes crashing to the counter, shattering the bottom plate. I bite my lip to hold back the moisture that pools in my eyes, and gingerly start gathering the shards while feeling like I am picking up broken pieces of my hope.
It is endlessly humbling and frustrating not to be able to accomplish menial tasks when I once let nothing stand in my way. My pride stings when I have to ask for help instead of being the strongest. It hurts.
I can only surmise that this is one of the greatest lessons I need to learn; that alone I am powerless, and need the unending strength that God in his loving kindness offers to me. So many times as I call out for someone to help me lift or move something I am reminded of my desperate need to call on my Heavenly Father for help. Do I always remember? Definitely not. But he is gentle in reminding me that I do not need to rely on my own strength, that he’s got me and all I need to do is rest in the power of his might.
When I was given a terminal diagnosis I chose to fight for life. For time, for moments, for memories. Some days it is easy to do, and sometimes I am clawing and grasping at something that seems so pointless and out of reach.
Yesterday put me in a dark place. I had a doctor appointment about an issue that is fixable. Any healthy person would have walked in that office and been given hope for healing and a better quality of life. My third time in this office to plead for relief was met with the same disconcerted answers as before, even with the new information I brought. A doctor I have seen 3 times now, and he has not even laid a finger on me to understand what I’m going through because it is obvious he has already made up his mind that it is not worth it. I am not worth it. My condition is too advanced, there is not enough life to live to make it worth his time to help me. That tore me apart in ways I cannot describe.
I am weary. Every single day is so much fight, and sometimes it is hard to remember what I am fighting for. The memory loss from my brain surgery continues to torment me. It frustrates my family to the point of anger, and then leaves me feeling like I have done something wrong when really my mind is just tricking me into believing something different than everyone else. More and more I hold my tongue to avoid the embarrassment and the conflict of not remembering things. I nod my head and pretend to remember when I really have no idea, but it is the more peaceful path. That is not me. I do not hide.
My body is tired of the battle. My mind is tired of the battle. Some weeks that propels me to fight harder. This week it finds me burrowed under my blankets, hot tears burning scars down my cheeks. I do not know what the rest of my days look like. The only thing I know for certain is I have Jesus, and he is the one who has given me these days, so through my tears I pray he helps me to use them well. Feeling myself fading is frightening, and I don’t feel like I am courageous enough for the path ahead of me. I do know I am held though. Held on the easy days, and held on the days that seem impossible. Held in my determination and my hope, and held in my fear and my disappointment. He promises to carry me through the deep waters, so I pray he will carry me further than I can even imagine.
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.
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.
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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.
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The past few weeks have brought me a fancy new wheelchair and an incredible mobility van to travel around in! I am still waiting for my headrest, but everything else is so wonderful and supports my body in a comfort I’ve not had in a long time. I am so blessed that insurance worked with us on this, and now Mark doesn’t have to push me around everywhere we go!
I know there are many people with the same needs as I have who aren’t as fortunate to have a nice chair to use, or even a vehicle to get the chair around. It is not lost on me how richly blessed I am. I’m so thankful to have these needs met in such amazing ways, and I hope to use them to bring more love and light to the world.
Here’s to more adventures in the fast lane!
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My 6 year old climbed into bed with me and let out a deep sigh as he laid his head on my shoulder. His babyish fingers fiddled with the green beads on the bracelet I had given him when he asked for something to “remember me.” When I asked him what he was thinking about, the fears came spilling out. “I don’t want to miss you mama, I want you to stay.” He echoed what my heart whispers every time I look into the eyes of my little people. We all want more time.
My condition has a life expectancy of 5-15 years. My symptoms started 6 years ago. I guess many would say I’m living on borrowed time. It’s a heavy thought when you think of it that way. That’s the thing though; every one of my days are already perfectly appointed, however many that may be.
It’s easy to get caught up in fear when you have something that has put an expiration date over your head. I’m not going to lie and say my mind doesn’t wander there, wondering sometimes over how long I have. The more I have moved and leaned into this season though, the more I am filled with an overwhelming peace that I will be here the perfect number of days. It’s a painful belief we have that people are taken from us too soon. “She was too young.” “He died too soon.” “She was taken from us much too early.” Can any of us point to someone who died right on time? I choose to believe that God allows each of us to die at the perfect time, regardless of the circumstances. This gives me so much freedom.
Instead of focusing on my life expectancy, I’m choosing to live expectantly; expecting joy, daily graces, and the perfect number of days to do life here with my people. I’m soaking up the snuggles, rolling with the grumpy mornings, and pledging to be present for the big and small moments of every day without fear over my future. What if you decided to believe that everyone is here for the perfect number of days? Who would you be?
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Choosing Hope 