A little over two weeks ago I said at two different times; “I really miss sunrises and sunsets.” I mean, we have them, but they are pale and washed out, not the brilliant fluorescent colors of my hometown sky that I loved. “it’s just not the same,” I said, “and I miss it.”
The next morning I awoke in the ICU after some some serious respiratory struggles the day before. The first thing I noticed when I opened my eyes was the hot pink morning sunrise streaked across the sky.
God cares about the big things, like saving my life that night. He also cares about the little things, like the colors that take our breath away. I think he delights in saying, “I heard you, and I got you.”
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.
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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.
Looking around at the faces in my coming and going these days, it hits me that the majority did not know me before I was sick. The me that they know has always been the me that needs help, that is in and out of the hospital, and navigating much of life from bed or a wheelchair. That makes me sad. I miss my strength.
I wish all my people could know the strong me that could hike a steep mountain trail. The me that loved to do all the creative Pinterest things with and for my little people. The me that was social, driven, confident, and strong.
It has been a gradual and subtle loss. The landscape of life being destroyed slowly, one square inch at a time. Suffering lingers on and on, and pain wears me down like friction wears down metal. On the best days, little inconveniences, like having to drag a stool into the shower to sit remind me that I’m sick. On the worse days I don’t make it out of bed; strapped to a ventilator and dependent on someone else to wake me round the clock to swallow the pills that give me some semblance of comfort.
I have no idea what is going to happen over the next 3 months, or even the next 3 weeks. It looms over me, casting an ominous shadow over my entire world. No matter what I am doing it is always taking up a portion of my thoughts. Yet I push it away, determined to suck every grace drop and dribble of joy from my moments.
In the sleepless dark hours I wonder over the future of my husband and my little people. I pray the loss of me will not stifle them. I replay the losses we have already been through. I weigh the scars that have already been created, and I hope that these new ones will heal too. I compare the losses and try to estimate the outcome based on what we have been through. Anyone might agree this is a waste of my time.
Loss is loss, whatever the circumstances. All losses are bad, only bad in different ways. No two losses are ever the same. Each stands on its own and inflicts a unique kind of pain. We tend to quantify and compare suffering and loss. So, I shift my thinking and pray that meaning can be gained by this suffering, and that we can all grow through it.
I pray that the scars tell a story that changes lives for the better and points to the God of my salvation who has carried me through every hard step. I pray that louder than the story of devastation, people hear the story of grace woven through it; how each time I met the end of me I was met with the grace to fight a little more, to grasp hold of more moments, and to turn broken into beautiful.
I echo my friend who was dying of terminal cancer when I say, “I feel like a little girl whose daddy has come early to pick her up from a party. I’m not afraid to die, I just don’t want to go.” I want to be here for the mundane afternoons after school; racing through homework to get to indulge in the better parts of the day. I want to be here for the sending off of each of our birdies… sending them soaring in the directions of their dreams and always having a soft-landing place back home when they need it. I want to be here for the blush-faced budding relationships, and the promises and the ceremonies and the rings. I want to get to be Grandma Nanny, with long grey hair and crinkly smile lines, rocking my grand babes to sleep.
A slow stripping of my pride and my dignity leaves me vulnerable and weary. The people I meet now have to take me as I am, with the understanding I may not have much to give back. This changes the landscape of my relationships, because those saints willing to walk into my mess with little promise of gleaning anything for themselves out of it are few and far between.
Still, here I am— hands open, life open, ready to embrace any who are brave enough to walk this life with me. And the times when my invitation is met with the sound of crickets, I know I am held and I am kept in perfect peace in the arms of my Abba Father, who takes me as I am- all my pieces-and traverses this bumpy, winding road alongside me. I have never been alone, in my strength or in my fading.
”For to us a child is born, to us a son is given; and the government shall be upon his shoulders, and his name shall be called Wonderful Counselor, Mighty God, Everlasting Father, Prince of Peace. Of the increase of his government and of peace there will be no end, on the throne of David and over his kingdom, to establish it and to uphold it with justice and with righteousness from this time forth and forevermore. The zeal of the Lord of hosts will do this.“ Isaiah 9:6-7 ESV
Last week I could tell as soon as he stepped through the door from school that my youngest had something on his mind. He melted into the couch next to where I lay in my hospital bed, and let out a sigh of epic proportions. I went first, as I usually do when he gets home. “So what’s the story today?” As his cool gray eyes met mine they quickly pooled with tears.
The past few weeks have brought new challenges and fears as this disease has relentlessly invaded new corners of my body. My young son, who should be getting to worry over things like homework and landing that jump-turn on his scooter unfurled the frustration of his day; how he had been unable to think of anything else but this next challenge I find myself facing, and as he ruminated over all his fears for me and wrestled with the thought that his mom wanted more than this from life, he was dished out two “fix-it tickets” for not paying attention in class. “I couldn’t help it mom, you were the only thing I could think about.”
Sometimes I am not sure how to respond to these moments, because I want to throw myself on the ground and kick my feet and scream that it’s not fair that a 10 year old boy should get in trouble at school because he is preoccupied with the ever-present razor of death that he lives with. I want to yell at the world that they need to be gentler and more kind and take a gosh-darn second to try to understand what people are going through. For real, couldn’t we all use a little understanding? Instead I draw the defeated hunch of his shoulders in close to me and I reassure him in every way that I know that we’ve got this, and God’s got us, and we are going to be ok. And sometimes I’m not sure if I’m preaching more to him or to myself, but as we bring our deepest fears and frustrations before the throne of grace we both lift our heads with a little more resolve than we had before. A little more peace, a little more comfort, and a little more fight to face these giants that keep coming our way.
Sometimes I anguish over the fact that when my boy pops in the door from school the things he does battle with aren’t who won the coin toss today at recess or why the lunch line was so long he only got halfway through his chicken patty before the bell rang. Sometimes I long for the simple and the mundane over the big and complex things my boy, and my whole family are having to grapple with. But when my thoughts wander to these dark places I find myself back on my knees, trusting my family to the Author of my story, and believing with everything in me that it’s a good, good story. Even if we can’t see that yet. I believe.
The first December after having watched our youngest daughter be buried in a gaping rectangle of earth I did not feel like celebrating Christmas at all. I wanted to skip it altogether, and truth be told if I hadn’t had 3 other littles expectantly waiting on our yearly traditions I would not have done a thing. But there they were, those bright little eyes and tiny hands open wide to receive the giving and the caring and the celebrating of the most joyous gift, and while I couldn’t see it then I know now that my heart needed that just as much as theirs did.
I was stuck wondering how to move forward through the dark days of Advent in a way that would point my family to hope while still suffocating beneath the ache of the sudden loss of my little girl. What I learned that December and all the ones since is that the Christmas story holds space for our stories, even the dark parts— for the tears and the scars, the mourning and our deepest grief. I learned how to weave the remembrance of our littlest sister girl into the stories and traditions of each Advent season, and have done so ever since.
When a friend visited a few days ago and saw how we still include our Ellie in the patterns of our Christmas season, she suggested I share the ways that we do that, knowing there are others holding the shards of painful losses and unimaginable grief this season, and hoping I can help you to find meaningful ways to embrace the joy of anticipating the day of our Savior’s birth while still honoring the lives that have left us with ragged and tender edges during the happiest season of all.
One of the long-standing traditions in our home is that every year each of the kids get a new ornament to hang on the tree. Wanting to include Ellie in that, yet realizing it didn’t make sense to gather a growing collection of ornaments that she would not be taking with her to leave our nest one day, we came up instead with Ellie’s Christmas Tree. Delighted to find a tree existed in purple, her favorite color, we set about adorning it with miniature ornaments that all reminded us of her and her precious days spent with us. Every year the Ellie Tree gets set up on a tabletop and decked out with all the girly symbols of her tiny self. Occasionally we find a new ornament to add that suits her perfectly, but for the most part we keep the same collection and enjoy every year this small but bold representation of our girl.
As I hung the family stockings that first Christmas without her, it felt like betrayal somehow to not include her in that tradition, yet an equally painful gut-punch was staring at a limp, empty stocking that would never hold gifts for the littlest sister. So we started the tradition of Letters to Ellie. As the calendar page turns to December each year we purchase a pack of cards specifically for Ellie’s stocking, and as we move through the days of Advent toward the coming of the Christ-Child, each family member takes the time to write a personal letter to our girl and slip it into her stocking.
In the early days when the siblings were bitty, that often looked like adorable drawings of stick people representing the littlest girl twirl-dancing in Heaven, or memories of what they missed doing with her. As they’ve grown the letters have grown too, to include writings of their memories with her, updates on what they wished she could have been a part of this year, or wonderings of what she would look like or be involved in today. Each year as the celebration of Christmas winds down I have taken the cards and added them to a growing scrapbook of Ellie’s Letters that we all enjoy looking through and seeing how time and maturity and the aching of missing her have colored what has been documented. It has been a sweet way to include her and to reflect on the impact her life has had on our lives.
However you choose to include your missed loved ones into the celebration of our Savior’s birth, always remember that the little Lord Jesus asleep on the hay has made a way for us through the tears and the deep grief-aching of our hearts. His birth paved the way to the cross that beckons us to come and makes space for all of our grieving, and promises to bring us rescue from these dark days into an eternal life of joyous fulfillment.
A few days ago I was attempting to change the sheets on my bed. My dear hubs likes to use these heavy weighted gel pillows to sleep on that feel best on his neck. He was helping me put the bed back together and I reached for one of his pillows on the floor to hand it to him. Grabbing it with both hands I yanked it up almost to waist height only to have the weight of it slip from my hands and plummet back to the floor. Again I reached for it, and again it slumped to the floor as it slid from my weak grasp. And then I lost my ever-loving mind. “This is ridiculous!” I shrieked, and before I could even think I burst into tears. I know his kind words were trying to console me, but I could not hear them over the shame and frustration and despair that rang through every cell in my body.
I made a beeline to retreat to the bathroom where I hid behind the closed door and let loose hot tears of anger and deep sadness. All I could think was, “They used to call me Mighty Mouse because I was the strongest in my fire department, and now I can’t even pick up a stupid pillow. This isn’t fair, God. This was not supposed to be my story. Why can’t I have my life back?”
Silence screamed back at me as I finished having my temper tantrum and blotted my swollen eyes. Then there was a quiet whisper to my soul, “There are countless others who have that story; yours is one that will show my glory even more so because of your weakness. Just trust me.”
Peace seeps in like the gentle rocking of a newborn to sleep. My Abba Father has got me. He knows the pain, He knows the frustration and disappointment, and He promises to make something beautiful of my broken pieces.
As I crawled into bed I did the only thing I know to do when given the choice to despair or choose hope; lift my hands and praise Him for the many gifts in my life. I list them off into the stillness of night, and like a mighty shield, that act of thanksgiving pushes back my shame, my frustration, and my despair, until all that’s left is a calm assurance that I am exactly where I am supposed to be.
In what ways are you feeling your shortcomings? Are you able to leave those at the feet of Jesus and trust that He’s got you? It’s not always easy, but it always comes with a huge helping of peace.
“Swish!” The sharp, boxy machine sucks in a gulp of air and sends it erupting into a strong stream of gurgling water bubbles before sending it whisking up the plasticky tubing and into my nostrils. Brief spikes of pain take turns blazing up each of my legs, the depth of them an ache that feels like my bones are shattering.
I roll to my other side and tuck the heating pad back around my hips and thighs, trying to find some relief, and the effort of moving sucks the air from my lungs and leaves me gasping for each next breath like I’ve just run a marathon. Irritated, I reach for the pressurized mask of my ventilator and slip it over my nose and mouth. The rhythmic breaths it provides offers relief.
Sometimes hope is difficult to find in the lonely hours around 3am. The silent dark seems just the right habitat for all the doubts and big questions to seep into my soul and look for places to take root. I cry out to a God who at that moment feels very far away. “Can’t we just skip to the good stuff talked about in Revelation 21? God living with us. Death no more. Pain, grief, and crying a thing of the past?”
As I’m lamenting over my pain and isolation and how tired I am from these pain-filled nights, my thoughts are suddenly turned to the many stories I’ve heard and read of saints before me who suffered immeasurable losses and bore unthinkable burdens and didn’t whine or complain, but counted it all joy. I picture all of the men and women who have chosen to remain in hostile places to share the good news of Jesus, and suddenly my own resilience seems very soft.
I cry out for a bigger capacity to suffer well, with only joy, to make me tough, yet keep me tender, and to loosen my grip on my meaningless earthly treasures. God is gracious in His gentleness with me. He doesn’t mind being with me in my weakness, and He has written a good story for my life that He will see to completion.
So tonight in the lonely stretches of battling big pain, He gathers me into His arms and carries me through a room crowded with sorrows so that I can take up this cross again and deny myself, following Him down a road I never would have chosen for myself, but that leads to fulfilling and eternal life.
In a season of suffering and deep grief, a day set aside to give thanks can feel counterintuitive. This week as I have pressed into a list of tasks to prepare for a day of fellowship and feasting with my family I have faced endless hours of debilitating pain, a frightening drop in function on a repeat breathing test, a company that has decided not to provide my tube feedings anymore, and fatigue that binds me with so much exhaustion that a whole day slips by without me waking. Admittedly, it can be easier to find things to complain about than to be grateful for, but then in my morning quiet time I am reminded that thanksgiving is the way we enter into and experience His presence (see Psalm 100:4). To say “Thank You, God” is to perceive Him with us in our suffering.
In the dark, painful corners of a Nazi concentration camp, Corrie ten Boom wrote, “Thankfulness keeps us connected to the reality of God in our lives.” If a woman persecuted and tortured for doing nothing more than showing love and hospitality can find reasons to give thanks during the darkest days of her life, than I have no excuse not to be counting my blessings. So, I pull out my journal of daily graces and scrawl them down on the pages; the easy-to-miss but very present reasons throughout my days to give thanks to a God who is acquainted with my sorrow, and is fiercely present in my suffering.
Gratitude is not always easy to embrace. Suffering affords us endless opportunities to complain and despair and harden our hearts. For myself, some days are so acutely painful that I wonder how is there possibly anything good to be thankful for today? Yet I continually find that just that amount of belief is enough to gently turn my heart and head toward my Savior.
To those of you that are trudging through deep grief and fighting daily battles that threaten to consume you, I see you. I hear your desperation and I feel your pain. Still, I urge you to lift your head and look around. Find the daily graces, no matter how small. Your warm cup of coffee. The sunshine streaming through your window. No matter how small your capacity gratitude in that moment, you will find yourself inspired to thank Him for more and more of His gifts and His goodness.
Choosing Hope 