Wordless Wednesday
Tag: hope
Not My Will
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.
Wordless Wednesday
Heavy
The past few weeks have felt HEAVY. One of my dear friends was diagnosed with lymphoma. Chemo has started, and with it the constant fight against weakness, sickness, feeling worse than the actual cancer makes you feel. It doesn’t seem fair.
Another of my friends was also diagnosed with lymphoma, and we are in the waiting of what treatment is going to look like. A period of time suspended, feeling strangely well despite the cancer that has invaded many corners.
My sweet friend with ALS had a bad fall and ended up with a broken shoulder. A long road ahead of healing and rehab and wondering if strength will come back enough to return to her home, or if a new, harder season is beginning.
Friends with children who are trudging through broken places, with exhausted parents who aren’t sure where to turn next, who just want to shoulder these trials so their children don’t have to.
My kids are struggling with some painful battles, and I have to stand back in silent prayer and watch them fight through it, knowing there is nothing I can do to take the pain from them; it’s a road they have to walk.
My husband is on several weeks of travel, which always feels lonely and scary and takes a cumulative toll on my strength. And of course it is always when he is away that Murphy shows up in all the ways like car trouble and kid injuries and leaks under the kitchen cabinet.
It all feels so heavy; suffocating at times. Multiple times this week I have found myself in tears, overwhelmed by the sheer weight of it all. Sometimes I have forgotten my /first/ defense is to reach for my Heavenly Father. I finally remembered that in a simple prayer yesterday; “please send help.” I’m sure you know even before the end of this sentence that of course God has shown up in the ways I knew I needed, and even the ways I had no idea I did.
He has given me the energy to go visit my friend between chemo treatments, the simple presence of each other’s company being enough to reassure me of God’s presence in this story. And a smile that even in his weakened state he cut the grass and welcomed me with my own parking spot. Daily graces.
My friend with ALS does not have much of a circle, and she has spent many long days and nights sitting alone in her hospital room. God gave me the strength and the creativity to go spend some time with her and to decorate her room with color and love, as my own friends have done for me.
He has given me wisdom, discernment, and patience to assess the needs of my hurting littles, and provide the best support I can at the right times. He has given me the privilege of coming before the throne in prayer for all of these things.
And all of a sudden, with praise music playing in the background, and friends who are willing to show up both in person and in prayer, the anxieties of my heart melt into deep gratitude for all the ways I am held and carried, and the ways I can hold and carry my own people.
As I cracked the book of my quiet morning devotion today, the words specifically chosen for this date wash over me like the healing balm that they are: “Come to me, all of you who are tired and have heavy loads, and I will give you rest.” Matthew 11:28.
Another daily grace, God whispering my name, saying “I see you. Let me carry your heavy loads.”
Sharpie Stones & the Questions They Bring
“Why do we even believe in God if He doesn’t help us?” The words sliced through the sweltering afternoon air with razor intensity as hot tears dropped dark shapes onto my 11 year old’s gray T-shirt. He had just finished lying a sharpie-labeled headstone over the dented ground in a shade-protected corner of our yard where he had buried a tiny baby bunny for the second time that day.
“God could have saved that bunny. I prayed so hard for that. If He can do whatever He wants to, why didn’t He save him? Why doesn’t He make you well? Why does He let bad things happen to the best people?”
I sucked in a breath as my chest squeezed with the painful questions that seemed to bounce back off the canopy of leaves above us, unanswered. I was watching my boy reckon with one of the deepest struggles we all wrestle with at times; the ones that can strengthen your faith immeasurably, or send it crumbling into nothingness with the verdict that God can’t be trusted.
As strange as it might sound, these are some of the most sacred moments in parenting. Moments so heart-wrenching, yet so utterly priceless you can almost feel God’s hands on your shoulders as you tenderly walk your children through despair and into hope, reminding them the thing you need so desperately to remember yourself; this life is just a blink, and tomorrow has been promised to none of us. This day is a gift, and if it is full of suffering, it is because God loves us too much to let us waste our lives on earth’s pitiful indulgences. He wants to give us astonishing abundance that lasts forever—and suffering is often the means by which He gives it.
I don’t know if I would have become a parent if someone had told me that I would have to watch my children suffer immeasurable pain that I could do nothing about. I don’t like that; I’m a fixer. But even today I am still learning that the only way through is a repeated opening of my hands and surrendering my children to the Only One who can make good of their pain. He promises not to waste it, so I trust that somehow each of these hurts will be used for good.
The Gift of Suffering
Last night in my Growth Group we came across a verse in 2nd Timothy 4 that gave a charge to “endure suffering.” It was such a simple statement, tucked in among a small list of things we are called to do as believers in Jesus. I found irony in how matter-of-fact the command was.
Suffering has barged in on our most important dreams and deepest desires. We try to avoid it at all costs- dodging this way and that to ensure our happiness, comfort, and contentment. Enduring suffering is probably not at the top of our to-do list every morning. What if Christians believed what we preach though; that God is enough?
Psalm 146:5 says, “But joyful are those who have the God of Israel as their helper, whose hope is in the Lord their God.” He is enough to bring us joy, to make us happy, regardless of our circumstances, but we need to lean into Him.
Leaning into Him is something I have to practice hard at daily. I am sloppy in my suffering. However, I realize the gift that it is to me, because suffering easily strips away the things that become substitutes for my happiness, and it opens me up to the indestructible happiness found in God. When my hope is in Him I find I can more freely enjoy the good things He gives me, because I am not dependent on those things to make me happy.
When our lives are spinning along without the interruption of pain or sadness it’s easy not to feel a need to seek God’s help; He often doesn’t hear from us until we are weary and crying out for mercy. When suffering comes along we realize He is our only hope, which sends us running to Him. This is why I can be grateful for the suffering He has called me to; it keeps me dependent on Him.
What about you? When the burdens you carry have made you weary and sad, are you able to find happiness and contentment by letting God fill up your empty places? It can be hard, but it’s also liberating. Let’s do it together today. Wherever you are in your suffering, lean into Him. Give Him the chance to show you that He is enough.
Making Lemonade
Ever the entrepreneur, my boy is an experienced lemonade slinger. His delicious recipe and adorable smile keep people stopping , and most days he turns an impressive profit for a 11 year old.
As he started gearing up for the first sales of the season he said, “hey mom, you know how I was going to save up my lemonade money and buy a motor bike? Is it possible for me to save up all my money and use it for a cure for your sickness? Utterly humbled by his compassion and thoughtfulness, I did my best to explain that there is no cure; it’s just doing things to try to make my body as comfortable as it can be.
Flash forward to today- he was setting up his lemonade stand, and he paused to come talk to me. “You know how you said there is no cure for your sickness? Is it ok if I use my lemonade money to pay for the next few medicines you need?
There are few things in life that prepare your heart to be absolutely melted and shattered and hugged and twisted all at once like that. I’m so thankful for the empathy and gentleness that my boy is learning, even in the midst of such heartache.
Wordless Wednesday
Worth It
As my baby sis and I chatted back and forth today on what would have been my nephew Angel’s 11th earthly birthday, my sister said something so incredibly true and equivocally profound that I am left pondering over it hours later.
“You know what’s amazing?” she said. “Angel refused to believe he was a burden (and he wasn’t). But by society’s standards, he was. He couldn’t move a single muscle other than his eyes. He was 100% dependent on others for literally everything–life, health, engagement, communication…all of it. Yet he never apologized for taking up space. He had high expectations for how he was to be treated and honored and considered and included and he didn’t tolerate those who saw him as worth less than anyone else. He KNEW his worth. He knew it so deeply. And I can’t say that for myself. I at times feel overwhelmingly guilty just for existing and have since childhood. But not Angel. He. Knew. His. Worth. No matter what. And that is really, really powerful.”
This struck me to my core, because I at times get caught up in how much of a burden I must be, and how I wish I didn’t have to depend so much on other people. But Angel never felt sorry for himself like that. He knew he was a treasure; a child of royalty, and he did not accept being treated as anything less.
While a lot of that came from being just the incredible little boy that he was, there is also loads to be said about the fierce way my sister and brother-in-law fought for Angel’s worth. He knew he was valued because he was constantly treated as valuable, and he was shown that what he brought to the table mattered. He was fought for, given a voice, listened to, applauded, and all of those things only cemented his knowledge that he was worth it.
As Angel’s 11th birthday winds to a close my heart is so tender, but so grateful that for a boy who could have felt less-than, he always knew right where he belonged, and now in Heaven, he has claimed his true worth, his royalty; the crown he fought so hard for and was bestowed by his King. And I can’t imagine a bigger smile than on the boy who always knew- I am worthy.
Happy birthday, sweet Angel. You are loved.
A Day in the Life
Most of you that see me see a small snapshot of me as a whole – usually on the best days- when I’m able to get out to church or to my kiddos’ performances. Because I’ve always been a kind of a private person, and I also fear being a burden to others, there are very few that have seen me at my most vulnerable as this awful disease has ravaged my body.
Maybe because the hard days are starting to outnumber the easier, or maybe because I am desperate for others to understand the depth of my need for help and prayers, or maybe because it’s so extremely isolating to live in this place of putting my best face forward, I am going to give you a glimpse of what it looks like and feels like to wake up and do battle against a body that is trying to kill me.
***I gave my husband permission to take some pictures of some of the hard moments***
A morning snapshot:
5:40 am. My alarm goes off. This gives me time to swallow a few pills to try to ease some of the pain searing through my body before I have to get out of bed. Snooze button a few times while the meds start to work, and then it is time to wake my littlest to start his morning routine.
Fatigue starts early, filling my arms and legs with wet cement as I go about fixing him breakfast and snuggling in on the couch to read our devotion together and watch part of a show.
7:00 am. My little is getting ready for the bus and I have to excuse myself as I’m dry heaving- my body rejecting the fact that I put pills and a sip of water into a digestive tract that has little function left.
7:29am. Last kisses and hugs before my little man heads outside to catch the bus. Worry creases his forehead. “Are you sure Mom? I can stay home from school and take care of you. All I’m going to do is worry about you all day.” I force a smile and convince him I am fine, that I’m just going to rest today. Reluctantly he walks out to the bus, stopping at least four times to look back and blow kisses and throw I love you signs. My heart could melt.
7:32am. I limp for my hospital bed that is set up in our den where I can be closer to the family. This is where I spend the majority of my time.
When you see me out and about at church or one of my children’s games or concerts it is because I have saved every bit of my energy that day and probably the day before in order to attend that event. It takes everything out of me, and I usually make it home and collapse for the remainder of the day, every bit of me used up on the best things.
8:00am. Through the shower and ready for work, Mark comes in to check on me and gives me any medicine I need, makes sure I am on enough breathing support, and starts a tube feeding if I’m not too nauseous. Then he goes around the corner to where his desk sits conveniently close to where he can hear me if I need help.
If I have no appointments, this is where the bulk of my day is spent. Resting and saving every drop of energy to be present for my family when they are all home in the evening. I have had to choose between the things I enjoy and feel like I should be doing- like keeping house and meal planning and grocery shopping- and instead spend time napping, writing letters for the futures of my loves, reading and sketching in my Bible, writing some works I hope to see published some day. This conserving of my limited strength allows me to be awake and upright to ask about the stories of my childrens’ days, and share a meal around the table, or attend their concerts or sporting events.
………………………………………
Tucked in the binder that holds all my important medical papers, behind the copy of my DNR is a sheet that documents most of the complications that I am affected by as a result of my disease. It is a spiderweb of symptoms, doctors, and treatments that all fall under the same central header; Multiple System Atrophy. Some of these ailments are very visible, like having to use a wheelchair, or needing support for my lungs to breathe, but many of them are tucked beneath the privacy of my roof; wrestled with far from the view of my family and friends.
Pain and spasticity are big ones near the top. They are managed by a team of two of my kindest doctors who do their best to relieve my discomfort and keep me moving. It is a never-ending battle, trying to calm the muscle spasms and ease the pain that they create. One of the big guns I have for this battle is an implanted medication pump that sits in my lower abdomen and delivers antispastic medication directly into the fluid of my spinal canal.
Some of the worst spasms I experience are from my esophagus. These come on as crushing chest pain, making it nearly impossible to talk or swallow. The only relief is small tablets that dissolve under my tongue, and then I wait for the spasm to cease.
Gastroparesis is a fancy word that means the contractions of my digestive muscles are too weak to adequately push food through in the way it should go. This has resulted in a lot of weight loss and malnutrition, and frequent nausea and vomiting.
I have two feeding tubes currently. One that goes to my stomach that I can “vent” when I’m feeling sick, and one that goes directly into my lower intestinal tract where my feedings have the best chance of being absorbed. This means often not having an appetite, or if I do eat it sometimes comes right back up.
Another consequence of my digestive malabsorption is that the nutrient deficiencies cause anemia. This has resulted in the need for blood transfusions and iron infusions.
Not being able to eat enough to maintain my nutrition also means being chronically dehydrated, so I have a port implanted in my chest for receiving fluids throughout the week. This has to be accessed once a week by a sterile process of introducing a special needle that stays in the port for the week before changing it again. Fortunately this was one of the easier things I had to learn, and my previous medical career was a big help.
Impaired balance, weakness, and muscle wasting is a result of my nerves not communicating with their assigned muscles. Weakness and balance issues causes a lot of falls, and some embarrassing situations like squatting down in the grocery store and then not having the strength to stand back up. Some of these things I’ve learned to compensate for, and some of them just mean adapting to a new normal which involves a lot more frustration than used to be.
POTS is another result of having MSA. It stands for Postural Orthostatic Tachycardia Syndrome, and it means that when I go from lying or sitting to standing, my heart gets significantly less blood return than it needs, which causes extreme lightheadedness and fainting. My heart speeds up to try to compensate, but without the blood return it turns to a losing situation. I’ve gotten to where I can usually tell when I’m going to faint (so can Mark), and sometimes I’m able to sit safely before falling, but other times it results in goose eggs, an assortment of cuts and bruises, and an occasional broken bone.
Since this illness first took hold I have had to go under for 10 different surgeries. Feeding tubes, medication pump, port implants, repairing damaged joints, and some involving my brain. My body is a roadmap of scars, boasting of the battles I’ve won.
When I had a series of seizures after my second brain surgery I sustained damage to the part of my brain that allows for short term memory. When my memory was tested following this event, it was described as severe and profound memory loss. Daily it’s a frustrating struggle as I repeat myself and ask the same questions over and over.
The disruptions in my ability to think and concentrate makes it difficult to control my emotions, leading to bouts of depression and anxiety.
Neurogenic bowel and bladder means I can’t just hop up and use the restroom; I’m confined to making sure I have urinary catheters with me at all times in case I need to empty my bladder.
Fatigue. There are probably a hundred different reasons why I feel utterly drained most of the time. Pain is tiring. Sleep apnea is not restful. Using so much energy to breathe and fight spasticity every minute of the day is simply exhausting. The combination of all of these things leaves me feeling like I could crawl into bed and hibernate for months.
The most disruptive and serious of the symptoms of MSA for me is chronic respiratory failure. This started with me having low oxygen saturation and needing extra oxygen through a nasal cannula, and wearing CPAP and eventually BIPAP at night.
It has progressed as my breathing muscles have gotten weaker and weaker, and now I have to use a ventilator with a mask throughout the night and most of the day. My doctors have had to continue turning up the pressure of how hard my vent has to blow, which is not only uncomfortable, but it makes it difficult to hear and speak. At this point even with the higher support I’m still struggling to get a good breath, and the side effects of using my vent are becoming more bothersome. My doctors are working on the next steps I need to be able to breathe better and conserve my energy.
As the muscles in my legs have grown tighter and weaker it has gotten harder and harder to walk any distance. That coupled with the extreme shortness of breath that even a short walking distance involves have left me no choice but to use my wheelchair for getting around. As much as I would prefer to walk hand in hand with my people, I am nothing short of grateful that insurance worked so kindly with us to provide a chair that gets me around and provides comfort for my tender places.
These are the hills and valleys I battle on the daily. Some days it is easier for me than others, but on all of the days I have found myself constantly held and loved and comforted by my Heavenly Father, even in the pain and uncertainty. He has given me the privilege of being able to give him all the glory, and he sustains me and provides for me whether anyone else shows up or not. He is a good, good Father.
Choosing Hope 