When I met with my counselor recently she said, “If you were given the space and peace I think you would succumb to your illness very quickly, but out of sheer stubbornness you continue to exceed all of our expectations.” She’s not wrong. As far as the stubbornness scale goes I’m way up there near the top, and I do have quite a number of things I want to feel like are going to be ok in my absence. I realize that may sound arrogant, and some of it probably is, but I also think most of us if we accepted that our time is limited have things we want to settle before we leave this world.
I think there are pros and cons to this stubbornness to cling to life. As a culture we really look at death in a strange light considering it is something that happens to all of us eventually. We measure the length of a person’s life and state that they were taken too soon, or they died much too young, but what if it was exactly the right time? What if your story hangs heavy on the thread of /this/season, /this/ loss?
We seem to live in a mutually accepted denial of the fact that we and those we love have an expiration date. This has a tendency to rob us of a joy and peace we can experience in the face of anticipated loss. We can all probably find a little purpose by leaning in and loving like crazy and then graciously walking our loved ones Home with our presence, our honesty, and our understanding.
I met Sandy when we both signed up for the Women’s Bible Study at University Baptist Church. We ended up in the same small group that met to discuss what we had read and watched. Being an introvert, and still fairly new to UBC, I gave myself over to the very extroverted woman who had an answer for each of the questions, and I did a lot of “soaking in” during that time.
By September 14, 2022, Sandy and I somehow talked enough to become Facebook friends, and from there she discovered that I was collecting nail polish to paint nails for women experiencing homelessness in town.
Sandy wanted to help, and generously donated to my small little mission.
From there my busted up short term memory doesn’t quite fill in all the blanks correctly, but I do know that Sandy started showing up for me again and again. In ways others hadn’t, and in quantities others wouldn’t.
There was nothing that she would not do for me; sit and patiently teach me all of the wise bits about marriage she has learned over the years, vacuum and mop my floors, pray and read scripture over me from a hospital bed, let me vent about a horrible day that didn’t really stack up to her hard day. Remind me in kindness when I need to reframe my thinking, or go back and ask someone’s forgiveness, and hours and hours of holding my hand and praying over me.
Sandy disciples many different women, and I was always aware how much that filled her plate, but it took me awhile to realize what she was doing was disciplining me too. Guiding me in love. Teaching me in wisdom. Loving me with grace.
For years I have prayed for Godly women in my life who will mentor and guide me, and I think I had all but given up on that ever happening by the time I met Sandy. Yet she walked right in and took the job. None of my mess mattered to her. My life expectancy didn’t matter to her. She was simply there for as many days as God would allow us to have together.
We have gotten to serve together, laugh together, pray together, and have hours upon hours of conversations about every topic under the sun, including the hardest ones that no one much wants to talk about. I can only pray that I will have the opportunity to be someone’s “Mama Sandy” some day, because what she has given me has been something I’ve needed more than half my life, and came at the most impeccable of times. As I tell Sandy, “Our hearts have been friends for a very long time.”
I hardly have any photos from Christmas this year. Christmas Eve I missed our candlelight service at church because I was too weak to sit up or stay awake.
Our candlelit tradition of “shepherds’ meal” on the night of Christmas Eve only kinda-sorta happened, because I wasn’t well enough to remember, or to get up and make different choices of soup and bread like I usually do. The night was rescued by a frozen tub of tomato soup found in the bottom of the freezer, and the calming glow of our advent candles. I lay in my hospital bed in the next room listening to the chatter, and chiming in silly questions like “what ever happened to the sheep after the shepherds left to see baby Jesus?”
Late on Christmas Eve I still hadn’t managed to wrap more than 4 gifts to tuck under the tree. Anyone who knows my personality knows that is the polar opposite of my checklists and neat packages tied with string weeks before December 25th. My husband and daughter came through by busting out all the wrapping (with the help of a healthy stack of gift bags) in the late hours as Christmas Eve melted into Christmas morning.
Christmas morning… well, really most of the whole day is a blur with more chunks missing than I’d like to admit.
What I /do/ know is all four of my babes were under one roof again.
My silly dream of a Hannah tree finally happened, in all her pink glittery glory.
Even through sickness and pain, the cozy warmth of a crackling fire still brought with it the memories of Christmases past, and the anticipation of more to come.
Zero kinds of Christmas cookies or fudge happened, but “Kitchen Trash” sure as heck still did.
I did not capture my traditional “photo every hour” series of Christmas Day, but I did manage to grab the still-frames of the most important moments of joy and togetherness.
And as the day wound down and the doubts crept in with the quiet, my wise sweet little sister typed out the balm that my soul so badly needed; I need to adjust my definition of the word tradition from “every,” and “have to,” to “some years,” and “like to.”
When I sifted through my unmet expectations I found that though I didn’t get the Christmas pickle unpacked this year, there was just as much joy and gratitude and wonder in the exchanging of the packages. And even though we weren’t able to visit the lights at the bell tower or drive the neighborhoods looking for the best displays, the twinkling in our own window was enough to cast that magical glow that makes you feel warm with anticipation.
This Christmas started out feeling like I dropped more balls than I caught, but as the day unfolded and the story of the Light coming into this dark world permeated each of our moments and traditions, all of it was suddenly more than enough. I was enough. Because He is more than enough.
I wrote this post a few years back, but came across it in my drafts today…
Sometimes it gets easy to not really think about being sick. In the day to day my normal becomes so routine that it just feels like things have always been this way. Then there are days like yesterday that have an ice cold slap kind of way of reminding me the fragility of my every day.
In the cold drizzle of early morning Mark drove me to my neurologist’s office for my 3 month Botox appointment. My doctor is one of the kindest I’ve met. His gentle demeanor and tender concern have a way of making me feel seen, remembered, heard, and valued. We began the appointment as we always do, bringing him up to speed about any changes in my condition since my last visit. This is where I’m reminded that this disease presses on. We compare my movements and symptoms, and he questions me about my cognition and memory. I have to defer to Mark because, well, I can’t remember.
“How does she seem to be doing?”
Mark’s eyes dart to mine, and I sense a hesitation before he answers.
“She’s slipping since the last time we were here.”
I listened as my groom of 21 years explained how I repeat myself, asking the same questions and going through the same motions over and over without any clue that I’m doing it. My face flushed with embarrassment as I squealed, “Babe! You should tell me when I’m doing that!” And his reply highlights the kind of gentle and selfless loving he showers me with day in and day out. “Telling you would not change anything, it would just make you feel bad.” He went on to explain to my doctor how he and the kids patiently listen to me say and do things multiple times and they play along like it’s the first time so that I can feel more normal and less afraid. And that, my friends is the truest love, and I am the blessedest blessed for having a man who is so thoughtful with my heart as we wade through these sometimes intimidating waters.
As my body has slowly been taken over by this progressive neuromuscular disease, I have bit by bit lost many parts of my autonomy. For a girl who’s used to blaring sirens and running red lights to help people, as well as getting to be the mama/chef/chauffer/counselor/chaos coordinator/party planner and loads more to a quiver full of little people, losing those bits has been a difficult process. I am not used to nor do I like being the one who needs help, and with each slice of my ability lost, a chunk of my dignity crumbles along with it.
Some things have been easier than others. Grocery shopping? I never cared for it anyway, so I definitely don’t mind that grocery delivery is how that gets done now. Carrying the laundry hamper down to the basement? Enough hard tumbles down the stairs have rewritten that effort with gratitude at my husband’s willingness to take that one upon himself. Even if I have to remind him that the laundry pile is crawling up the wall like a toxic weed gone rogue 🤭. But having to give up a career that I loved, not being invited to hang out with friends as much, not having the strength to pull together birthday party plans, or make it to each of my babies’ sporting and music events; those things have hit me square in the gut in ways I don’t know how to reconcile except one difficult emotion at a time. Despair, anger, resentment, denial… and some semblence of acceptance, though often coupled with deep sadness.
Some days the things I am losing are simply a reminder that I am here still getting to participate in life with my people, far outliving the initial “6 months” I was given back in 2020. Yet some days those reminders are a gut-punch to my identity, reminding me of who I’m not anymore, and what I will never accomplish again.
I sat with a friend last week who is in a serious battle with cancer. We sat staring at a splintery pile of firewood in his driveway that needed to be split, organized, and stacked, but the corners of his body the cancer has laid claim to prevented him from even managing the smallest pieces of wood. My heart twisted as I saw his eyes fill with tears, and in a broken voice he reminisced over the days he used to bench press two of me, and yet now was reduced to struggling over the smallest of loads.
My friend’s grief brought to mind many similar losses I have wrestled and grieved through. Dignity that was labored for with diligence suddenly snatched away to be replaced with feeling like I’m never enough.
My heart ached with knowing what my friend was feeling, but I also struggled knowing that no trite encouragement would do anything to ease the sharpness of the edges that were slicing his tender heart. If I have learned anything from these moments it’s that these losses demand to be felt and grieved. So we sat and we felt that, the weight of it all, and leaned into the hurt of all that this broken world has taken.
So often throughout scripture God urges us to remember everything He is and everything He has done for us. For myself at least, my mind often gets distracted from that and bogged down in the very present pain of surviving one more day. Yet on the other hand the very same book is real and raw and gives us the space and permission to feel the deep pain we feel.
“He forced me off my way and tore me to pieces.” Lamentations 3:11
“He has led me into darkness, shutting out all light. He has turned his hand against me again and again, all day long.” Lamentations 3:2-3
I am so thankful God’s Word is so gut-level honest, giving us permission to feel all the feelings we wrestle with. I am also thankful He doesn’t stop there… He /reminds/ us when we are in too much pain to remind ourselves.
“No one is abandoned by the Lord forever. Though He allows grief, He also shows compassion because of the greatness of His unfailing love. For He does not enjoy hurting people or causing them sorrow.” Lamentations 3:31-33
We do not have to pretend our suffering is not real. We are given the space and permission to sit and stare at the mountain of heavy logs and weep for what we have lost. And then we are given the strength to rise again and allow all of our hurts to be swallowed by the deep and endless mercy that is freshly provided every morning. He has walked along side us in beautiful ways through many trials, and He will do it again. Do you trust Him to do so?
In recent years thanks to lots of advocating by people with various handicap challenges as well as rules set by the ADA there has been a shift in many communities regarding the inclusion of people who can’t quite do things like everyone else. I both appreciate and applaud these efforts, because as a wheelchair user I can appreciate the many ways that I am able to participate because of the ways things have changed in recent years. What about when it’s not about the curbs and ramps though; what happens when it’s the people surrounding you that are the stumbling blocks to feeling welcomed and included?
For the better part of the past 5 years I have had to use a wheelchair when venturing outside of my home. While I can get away with a cane or “furniture surfing” around my house, the weakness, spasticity, and shortness of breath that kicks in after a very short distance is just not feasible to going out places away from home. So we’ve just packed me and my wheels into our van and gone about life as normally as we can. Recently though I’ve noticed the closed doors aren’t just the ones without a handicapped button.
A few weeks ago I was volunteering; wearing my badge and my shirt setting me apart as someone who could help, while sitting in my wheelchair. Two others were helping with me, and I noticed that regardless of how I engaged or smiled or said hello to people, if they needed help with something they went to one of the other two volunteers 100% of the time. I couldn’t figure it out; not seeing me there wasn’t a plausible explanation. Did they see me and just assume I was incapable because of my limitations? Did they just want to avoid a situation that felt awkward to them?
Fast forward a few weeks to when I attended a social event with several other people I knew. While two people said a brief comment or question to me, there was no one else in the entire group of people who spoke to me that day; not even a hello. I found myself frequently looking at the clock anticipating the time I could get out of there because it felt so incredibly awkward.
Perhaps someday I’ll be brave enough to ask people what it is that prevents them from engaging with me. I feel like even as an introverted extrovert this would help give me some perspective on how to help people see the real me. For now though it stings a bit. I find myself anxious about attending events and gatherings. I catch myself questioning what value I offer people, and that’s not somewhere I want to stay.
Fortunately I know who I am to God, and I’m confident he accepts and wants me regardless of my shortcomings, and despite my bumpy hard story. I know He is not afraid to meet me in my mess, and so I cling to Him there while I ask for the courage to show others who I am and what I can be besides my illness. God tells me I’m worth knowing, and His opinion is the one I hold closest when the reactions of the world around me sting.
Have you been in situations where you feel like you’re not noticed or wanted? How do you handle those closed doors that don’t seem to have a way in? Do you know your worth, other than what the world has to say about it?
After 2+ weeks in the hospital, this past week was my week to get back on track. I caught up on late orders from my Etsy store, did as much housework as I could tolerate, and soaked up time with my people. Life started to almost feel like our normal again. Then Friday came in like a wrecking ball.
I found myself sitting alone in the emergency room with a serious complication of my feeding tube that would require a painful procedure. All went well and I was home and tucked in by bedtime with the assumption that I would wake with this small speed bump behind me. Then came Saturday.
Saturday we had lofty plans. With the temperatures trying to point to autumn, the kids had been bitten by the pumpkin patch bug, anxious to take our annual family trek out to select the perfect pumpkin and sip apple cider on hay bales. Then we had penciled in a night at the rodeo, having already laid out our flannels and boots in eager anticipation. That is until I woke up.
The pain from the day before was tolerable, but every time I tried to stand I broke out in a sweat, my body shaking as nauseating waves of weakness forced me back down. Trying to be optimistic we eventually cancelled the first activity with the thought that if I rested most of the day I would be refreshed enough to still clamor out as a family to the rodeo.
It was not to be. I continued to struggle through the day, and at one point voiced my frustration to a friend. She was quick to remind me of a truth that reigns thickly throughout my days. It’s not just me that lives not knowing what I’m going to be able to do tomorrow; none of us are guaranteed the tomorrows of our best-laid plans.
So how do we reconcile with that? The only answer is that each day has to be an opening of our hands, prying our fingers off of our own wants and desires, and instead asking, “Lord, how can I best give you glory and honor today? This can only be done by keeping our eyes and hearts on Him. We may see our days don’t look like we imagined, but the gift of that is the joy we find when we are in full surrender to God’s will for us.
My weekend didn’t include the pumpkin patch or the rodeo, or any of the house projects I wanted to work on. What it was laced with was grace for each moment— the ability to cozy up in a comfy chair and watch a movie at the drive-in with my people. The strength to show up to church to help serve and then soak in the worship and the message that clearly spoke to the things I’m walking through right now. The weekend allowed me the time and awareness to walk through some difficult circumstances and conversations with some of my littles. It didn’t look at all like I had planned it, but it looked like exactly where God wanted me to be, and I was there for it.
Surrendering our days takes intention, and sometimes it might feel like disappointment, but when the end result is us doing what God most wants us to do, it brings an immense amount of joy and satisfaction as He blesses our coming and our going for the ways it honors Him.
As I’ve considered the things I’d really like to do before my illness progresses enough to eliminate possibilities, I’ve kept kind of a bucket list of sorts in my mind of things I hope to get to do. At the top of the list was going to the beach with my family again. As time has slipped away though that has seemed out of reach, so when I discovered we essentially have a beach and sand dunes just a few hours from us by Lake Michigan, I jumped all over making it happen.
For months I saved up the earnings from my Etsy store so I could pay for us to rent a campsite and a comfortable RV that could power all the medical equipment that has to trail along behind me. I managed to snatch one of the last groups of days left for the popular camp spots at Indiana Dunes State Park, and started harping on my family to black out the days and make sure their bosses knew they wouldn’t be working. When one of my kids got pushback from their boss about taking the days off I even composed a carefully written letter about how important this was to our family, and praise Jesus he consented to approving the vacation days.
We planned for months… meal planning, gathering up our boogie boards, kites, and buckets for the beach, and rounding up sleds we could use to fly down the nearby sand dunes. Lists of medicine and machines I needed to have with me. I found an amazing RV nearby for us to rent, and got everything settled. I was so excited and looking forward to this time for all of us to escape our busyness and make memories together.
I don’t know if it’s sad humor or irony or what, but a few days before our trip I landed in the hospital as the result of a mistake made by the healthcare professionals. It was serious, and my hopes for a quick prescription and release were dashed as I was admitted and prepped for surgery the same night. Buckets of tears later I had begged and pleaded with each doctor, explaining the significance of the trip, urging them to let me go. It was not to be.
Father’s Day morning (and also my son’s birthday) was the day we were set to leave. The rest of my clan packed up the RV and came to the hospital to have a makeshift celebration with me before they hit the road for our vacation. There were to be no refunds for what we had paid, and by then there were no other days available to rent camp spots, so it made the most sense for them to go ahead without me.
The disappointment mixed with excitement in my hospital room that morning was palpable, and I felt genuinely joyful they were still getting to go, while at the same time deeply disappointed I would have to stay behind. There was a flurry of hugs and kisses as I sent them on their way, demanding many photos.
In the stillness of a familiar hospital room my frustration burned hot rivers down my cheeks. All the things I have lost to this disease, Lord, why did this trip have to be one of them too? The whole point was for it to possibly be one of my “lasts.”
In the painful silence of a room that overlooked a brick wall, I remembered the story of Nehemiah. A man who had worked so hard for something, and then had seen it come crumbling down. He says he sat down on the ground and cried. He mourned for several days and refused to eat. Then he got up and dusted himself off. He thanked God for keeping His promises, and he prayed for restoration. This is the heart posture I desire to have.
Charles Stanley said, “Taking time to lament what we have lost can be an act of worship. Nehemiah allowed his distress to lead him into deeper communion with God. Offer your tears as devotion to Him.”
I pray that through the many disappointments and missing outs of this disease that I will learn more and more to press into Jesus through my frustration and discouragement. I know He sees far beyond what I am able to, and I trust that He knows how to write more good into my story.
Choosing Hope 