This week I had to be moved to inpatient hospice again as the struggle to breathe spiraled me into unconsciousness. Thankfully I am now back home with my people, breathing a little easier, but I just keep replaying in my mind the moments where my good friend sat on the side of my bed in the shadows of the afternoon the day I arrived there.
I did not have many words, partly due to my being on my ventilator, and partly because it felt like there was nothing left to say. I was discouraged and hurting. My “fight songs” playlist of music was playing through my phone, and my friend came and sat tenderly on the bed next to me, taking my hand in hers and lifting her other hand to Heaven as she swayed to the words of the praise music that was playing. I’m sure she asked me a few questions that afternoon, but the only thing I clearly remember her saying, as tears slid down her cheek, was “this just sucks.”
When someone is going through something painful we often do not know what to say, and the result is we say too much. We have the best intentions to lend encouragement, but in these situations being the “fixer” is not what’s needed. It takes some restraint to not say things like, “you’re going to be ok, you’ve got this, I believe you are going to be healed, etc,” but being present in the pain is a far greater gift.
My dear friend sat there and allowed herself to feel what I felt. She did not try to give me the easy answers or platitudes that would have taken less sacrifice than sitting in my grief. And no doubt it is costly to enter into someone else’s suffering.
The reality is those pat answers are just empty words at a time like that. Suffering is hard, and setbacks can take the wind right out of you and leave you wondering how you are going to move on from where you find yourself. I urge you to learn from my friend and be willing to love your people well in their need to acknowledge that it just sucks.
This grieving what is and what’s been taken is part of the healing that is coming, and it can’t be skipped or ignored regardless of how badly we want to have the answer to the fixing.
The next time you have the privilege of being allowed into someone’s hard, hold back the urge to find the most encouraging thing to say and listen and feel and acknowledge the obvious. This sucks. I’m so sorry you are going through this. This isn’t fair. This is hard.
Providence. A young wife stripped of her physical capacity, struggling to do basic things for herself as life moments pass by, leaving her behind.
Providence. A child living his entire young life consumed with the fear his mom is going to be taken from him. Calling her from school 4-5 days a week to make sure she is ok.
Providence. Two young girls swirling and giggling as they try on their mama’s wedding dress while she watches on, swallowing hard as she wonders if she will get to see them married.
Providence. A young boy looked over as having less worth because he is different, broken. Trying to scream his presence and purpose and his charisma for life from a body that won’t let him speak, or stand, or dance.
Providence. A thin sheet of water turns to glass as the tires screech across it, slamming the car into a semi, snatching away the life of a roommate, known, cared for, and needed.
Providence is a word I’d heard but not understood very much about until a recent sermon I heard from my pastor. I learned that Providence means God is in complete control of all things; there is no chance or fate.
This week I have rolled the word over and over in my mind, trying out its relevance, wondering if I have the guts to cling hard to the truth my mind knows even when my heart feels shredded.
What I am learning to believe about providence is that it is responsible for making an important story out of the hard path I am called to walk. When I view life through this lens it lends the hope I need to keep clinging even in these darkest valleys, though not easily.
Providence and I have come head to head this week. I have challenged why God’s complete control feels so out of control at times. I have pondered why if he is able to do immeasurably more than we can ask or imagine… why don’t we always get the answers we long for? It seems that sometimes when pursuing God, he cannot be located. What then?
I discovered reading the story of Esther this week that even in such turmoil God’s name was never mentioned, yet His fingerprints were all over that story! I knew God was trying to help me better make sense of the process and better accept particularly the things that we do not prefer or do not understand taking place in our lives. These things, hard as they may be are all part of God’s plan to develop us and take us from where we are to where he wants us to be. We may not see him, but that doesn’t mean he is not behind the scenes arranging every detail for His purpose.
Even the excruciating details. Even the ones that bring you to your knees, and the ones you don’t know how you’ll ever recover from. Every single detail with His loving heart imploring me to never give up hope that the hard parts I walk through are the beginning of something important and even beautiful that he is orchestrating.
Here I am, arms wide open, bleeding heart held out to You. Trusting you will take and use it for Your Kingdom, because I know You never waste our pain, and Your plans are so much greater than my own.
As this year’s backyard vegetable gardens have started bursting with tomatoes and herbs and every size and color of squash the past few weeks I have found a gut punch creep in when seeing the ripe harvests sprawled across social media. Gardening makes my heart sing. The fresh air in my lungs and the weight of the musky earth beneath my fingers just does something so good for my soul. Only this year it didn’t.
This year as the frosty months neared their end and it was time to drop seeds into plastic cups of soil I was neck deep in my blankets desperate for endurance and relief from debilitating pain. As I considered the planning, planting, tending, weeding, and picking that would go into my garden again this year I had to swallow the hard pill that my body was not going to have strength to do it this time. The planting weeks came and went, and I was still in bed fighting for more.
Every time I glanced out my window and saw the barren garden beds sitting empty of their Springtime sprouts it hurt my heart. I decided it made me too sad to stare out at boxes full of empty dirt all summer, so I had my wingman take me to the store and I chose packets of flower seeds in beautiful colors and patterns. I summoned the energy to rake through my garden beds and pluck the stray weeds from the tilled soil. The packets were torn open and sprinkled across the soft soil and covered in compost. Finally I gave the ground a thorough soaking with the hose, and collapsed back into my bed anticipating what would grow.
It didn’t take long for small green stems and leaves to start pushing their way into the daylight. I was thankful something was growing, but as I scrutinized the growing plants I could not tell the difference between something I had planted and just another weed, and I started to doubt if anything worthwhile would be coming from my garden this year. That was about the time I saw the first post of a friend showing all of the produce she had pulled from her garden, and I felt sad and resentful and just really missed working the earth every day.
I finally had the strength one day to go out and have a look around. Picking my way around the lumpy landscape to get to my garden beds, I could suddenly see past the tall tangles of green that had taken them over. Dotted among the foliage were colors; orange, pink, yellow, purple. As I took it all in I felt the Holy Spirit whisper to my tired heart, “this beauty is for you.” A hug that gathered all my disappointment and not feeling good enough and wrapped it up in grace that extended beyond what I could have imagined.
Those simple flowers in their elegant gowns were the reminder I needed that this life will not always be what I want it to be. There will be places I fall short and mountains I cannot climb, but in place of those if I look in the right direction there is so much beauty to be found. Beauty that says I am still worth it and I am deeply loved. I may not be bringing in baskets full of cucumbers and zucchini to prepare for my family this year, but every time I look out my window at the messy tangle of green that has taken over my garden I see those beautiful colors standing tall in all their glory and I know that I am seen and known and loved. So are you, my friend. In your deepest disappointments things may not look like you wanted them to, but look around and you will find that there is still beauty to behold.
PS- for those of you wondering what on earth FOMO means… fear of missing out 😊
This last week I wrestled through some of the highest highs and lowest lows of being a mom. I pleaded for my children’s safety and their salvation. I pushed myself physically and still fell short of the standard I held myself to as the nurturer of my family. I wrestled the bone-shaking chills and pain of pneumonia and of infection contracted during my recent hospital stay. I saw the toll of caring for me in the deep, tired lines around my husband’s eyes, and I spent hours praying without fully having words; begging for mercy, for redemption, for a soft heart, for a miracle. I laid curled in a ball, trying to will the wrenching pain of muscle spasms away, and pushed down panic at the weight around the sharp daggers that tore at my lungs with every inhale. And I wanted to quit.
I begged for God to take me. I considered the process available to hasten one’s demise once they are labeled with a terminal diagnosis. I even imagined what I might still have the strength to do in order to put an end to it myself: the bone-crushing agony of it all. The very core of my being downright cracked to pieces and threw the white flag like a penalty on the gridiron. Despite the guilt it was coupled with, for a brief time all I could think about was having a way out; an end to the pain, the frustration, the burden that I know my loved ones carry because of me.
As I wrestled and fought through these overwhelming thoughts that I didn’t know what to do with, I cried out for help. What came to my mind was the story of the man who couldn’t walk being lowered through the roof by his friends to get him in front of Jesus. At first I did not really understand how this related to me and the oppressive suicidal thoughts I was battling. I was not asking for a healing miracle, I was just tired of fighting and feeling like a burden to everyone around me. The more I thought about the story though, I realized for the first time that maybe this story is less about the man and more about his friends.
Maybe the man who couldn’t walk was tired of fighting too. Maybe he was tired of having to ask people to carry him just to get where he wanted to go. Maybe he was weary of asking for a miracle to which the answer was no. Regardless of where he was emotionally, he allowed his friends to walk right into his brokenness. He called out for help, and let them use their gifts to meet his needs. They literally cut apart someone’s house to get their friend the best kind of healing they possibly could. That is absolute passion on his friends’ part, and a great big dose of vulnerability on his own part.
This story I have heard over and over since childhood suddenly took on new meaning to me. I felt challenged to resist the urge to rush through my suffering, and to instead allow my hard path to crack me wide open and let vulnerability be the fertile ground for new beauty. By trying to control the timing of my own death, I would only rob those that love me the opportunity of meeting me in these hard moments and extending the love that has carried me again and again through these deep valleys. Pondering this new concept, I realized how much this already has happened, which further encouraged me for the days ahead.
Being vulnerable opened the door to kind friends showing up to pull the weight of my daughter’s grad party that I didn’t have the strength to make happen.
Being vulnerable allowed for the most sacred moments of love and prayer at my bedside in the ICU, even before I was aware.
Vulnerability has provided opportunities for precious times when my dear friend sits with me- no matter how haggard I look, or how many days since I’ve been able to wash my hair- and we are ushered into holy presence as she reads my favorite scriptures and prays over me.
These moments matter. Our lives, our stories, and our suffering all matter. When we step out from hiding behind our privacy or our embarrassment or our shame over feeling the big feelings we feel, we open our hearts and our lives to experience the richest, most meaningful moments this life has to offer.
When we are asked to walk a road that feels impossible to walk, it does not feel natural to open your heart up and share that pain with the people around you, but I’m telling you it might be one of the most healing things you can do for yourself. It also gives validation and purpose to the people waiting in the wings to use their gifts to help you. It can be a beautiful, painful story that changes hearts and forges friendships and gives so much glory to the author of our stories.
Jesus is well acquainted with suffering. He walked the hardest road so that we can find hope along our own hard journeys. Be brave enough to open your hands and hold your story out to those who are ready to walk alongside you. You will find strength you need to keep going, help you need to make it to the next step, and you will find kinship in the broken hearts who thought no one else could understand the road they are walking.
Hastening our suffering or skipping ahead to our final breath was never what God intended. But along each step of our good, hard journey, God will meet us with his beautiful grace. It is not a mistake; his power is strongest when we are weak. (2 Corinthians 12:10). Hold on friends. Choose hope.
Today a nurse and doctor from hospice came out to my house and assessed my condition and the things that have declined for me over the past few months and weeks. We talked in depth about my goals and my family’s needs, and the reality of the days ahead of me. They interjected hard conversations with compassion and kindness and humor, and in the end as they admitted me under home hospice care, I felt as though I had been given a great gift rather than something to grieve.
How perfectly that word describes the jumble of days that has been this week… “the period between daylight and darkness.”
Thank you for hanging in there with me this week. I realize now that I dropped off the planet in the middle of conversations, appointments, and even in the middle of uploading a photo to Facebook! I know many of my friends and family members were wondering what on earth was going on and why I wasn’t answering.
Rendition of a photo I posted this week without knowing it. No one knows what it is… to me it looks like twilight.
This weekend my respiratory drive decided to take a vacation, and my family found me unresponsive. For my medical peeps, I had a GCS of 3 when paramedics arrived. I spent the first part of the week intubated in the ICU.
In the haze between sedation and full consciousness I was so blessed to know that some of my dearest people were there with me praying over me, reading scripture over me, and just holding space for me on some very scary and unsteady ground. Unable to talk, all it took was me scratchily scrawling out a name or two on a piece of paper, and my people came running to be by my side. I am so incredibly thankful.
My medical team worked hard with me, but it was obvious my body was tired. Each time they turned off the ventilator to try to get me off of it, my chest remained silent, and they had to turn it back on. What changed this was overhearing my husband ask what the next step would be, and seeing my doctor motion to his neck that I would get a tracheostomy. I scraped up what fight I had left in me and scribbled out “try breathing again.”
For the next hour I breathed, but it was like trying to come up for air when the pool cover has already been put back on. I fought and fought, but eventually I heard the doctor order the medications be drawn up for rapid sequence intubation; they were getting ready to intubate me again. Somehow in that moment of defeat I sucked in a thin stream of air, and then another. Little by little I was able to take each next breath on my own until I was finally resting back against my pillow, only a bipap mask supporting me.
I made it very clear to my doctors that my daughter was graduating high school on Thursday, and I would be leaving the hospital by then with or without their blessing! Thankfully my team was very supportive and worked hard to get me out of there in time. That seemed an impossible feat at the beginning of the week, so my heart was overjoyed to be able to celebrate with my girl.
Sola Gratia!
I was there to listen to her beautiful singing voice peal across the arena in perfect harmony, and my heart sang. I was there to hear her name announced as she walked forward for her diploma, and my pride thumped swollen in my chest. I was there to giggle at the cute, triumphant face she made as she walked by the cameras with her prize in hand, and my spirit soared. The joy of the Lord is my strength, and he truly has shepherded me through some of the deepest valleys and the highest mountaintops this week.
I also delighted in the fact that my little sister and a few of her littles drove out for the graduation and I was able to spend time loving on them.
Seester LoveThankful for my girls helping me get fancied up! 💕
This will be the way forward for now, and we are grateful for the help to better manage things that have gotten frightening and difficult, like my weakness and breathing. I am grateful for this roll in seasons that brings these beautiful blue skies and warm breezes; ready to soak them all up with my people! And I am thankful for each of you who have faithfully walked us along this journey in so many ways. ♥️
I was using an unexpected burst of energy to shuffle things around in my garage, attempting to organize the means of the DIY adventures that call to me on my stronger days. I must have been deep in thought, because the abrupt swinging open of the thick wooden door to the house startled me. A tear-stained face appeared, begging companionship. “Can I please talk to you?” “Of course,” I replied, and took a seat on the striped padding of our wooden bench. I patted the seat beside me, and there was an eruption of sobs.
“I just really, really don’t want you to be sick. I don’t like it, and I would rather die so that you can live a happy life.”
I was caught off guard by the heaviness of the situation, and as the lament continued I silently prayed for the right words to comfort this tortured soul. How do you answer the questions for which there are no answers? I was reminded of my notebook full of gratitude; all the beautiful and miraculous that is found woven through the mundane ache of every day.
When the slew of bemoaning faded into hiccuping sobs, I spoke. “Oh sweetheart, I /am/ living a happy life. I love getting to be here and be a wife and a mom and a friend, and my sickness will never take that away for me.”
“But why doesn’t God heal you. He can! Why doesn’t he want that?”
Admittedly it is a question I have also asked from time to time, but I gave the answer that has been whispered to me on repeat as I have studied similar stories of suffering in the scriptures. What if my suffering is the way into a greater love for God and his people? I have found that the process of walking with him through these deep valleys is teaching me how to better love and care for others. Maybe if I was not sick I would not know how to do that.
Not that I have readily accepted the hardships in my life. Not by a long shot. I have had my own sob sessions, wrestling long and hard with God, desperately searching scripture and asking really hard questions. I have waded through grief deeper than I thought I could survive.
The truths I have come to know, and that I shared on that dusty bench in my garage is that whatever trial I am asked to walk through, God will give me the strength to take each step through it. And if a terminal illness is what presses me nearer to his heart and grows my own to love others in a way that I could not have imagined on my own, then that is what is good for me, as well as for those my life intersects with.
Who knows, God may still heal me, but only if healing pushes me further into him. Only if healing accomplishes eternally what terminal illness cannot. These days my prayers are less for the removal of my illness and more for a greater number of days to love God and love people. I continue to press forward and fight toward that end; especially for my husband and my little people.
In the cold quiet of our garage that night, I explained that my present suffering is only going to increase, not ending until my death. Every day I am pressed harder into the story of the gospel, which allows me to fully trust the God who has numbered my days (Job 14:5), and to embrace the future of hope he has planned for me (Jeremiah 29:11). As I thank him for each new day, I search with intention for ways to leave a legacy for my children that will urge them to press into their Father God in their pain; to trust him with their hurt, and believe in him for their future.
My youngest little turned to me a few nights ago and said, “Mom, I want to tell you something, but please promise not to be sad or upset.”
I assured him that I could handle whatever it was that he wanted to share, so he went on.
“When I was at practice today I saw a mom and her little boy on the playground. They were looking for something and then the mom climbed up and went down the slide and something in me triggered. I wanted to fall down on the ground and bang my head and cry.”
He slid his hand into mine, searching my face expectantly for my reaction. I think I did a good job of not betraying the chasm that cracked right through the beating of my heart. I smiled. I thanked him for sharing that with me. I told him I am sorry that his mom can not do a lot of the things other moms can do. We agreed it was hard and sad and unfair. And then I crooked-pinky-promised him that I was going to go down the slide.
Most kids get excited about a play date with friends, a new toy, the weight of a lemonade stand’s worth of quarters in their pocket… at the words that his mom would go down the slide with him, my boy’s face lit up like Christmas morning covered in a blanket of snow. “Actually?!” He beamed. “Absolutely. There are a lot of things I cannot do, but I can figure out how to slide with you.”
So transpired the day that we drove to the park, maneuvered the obstacle course to the top of the slide (because why just have simple stairs?), and made time stand still to the sound of my shoes squeak-clunking down the blue plastic slide that gave my son a moment of the most joyous normal that he could have imagined. He watched me slide, rode on my lap down the slide, and raced me down the double slide.
Even though there will always be things we miss out on together, I pray that every time he sees a slide instead of that painful trigger he will be filled with the memory of the day I said yes to reaching for more, challenging the limits, and grabbing hold of the joy that makes my hard story worth it.
I have not had much strength to write as of late. I do often in my mind; if only my brain came with dictation so I could get it written down. 😊
I am here still warrioring on with each of you who bravely get up each morning and embrace the good and the hard of your own stories.
One small treasure that I have been reminded of in this string of hard-fought days is that thankfulness if the key to peace. When my mind wants to run with with worry, I am practicing replacing those anxieties with thanking my Savior for the miraculous as well as the mundane, and He has been faithful to pour into me a peace too thick, too rich with the serenity of it all that it can only come from Him.
Is the roar of worry drowning out your thoughts? Try it. When anxiety creeps in, start listing the graces of your every day, and you too will find peace.
After my current palliative care provider announced that they are dropping me as a patient I embarked on a search to find another group that would manage all the things that they had been for me. After many late night hours searching for providers, several interviews with prospects, countless phone calls, an amazing patient advocate, and a whole lot of rejection, I am left without the care that has carried me through these past few years. Palliative care is changing; they only want cancer patients because the reimbursement is better. They were managing my pain, my mental health, my nausea, and my breathing, and I do not know what or who is going to fill those holes.
Next I got a letter from my physical therapy company stating that they are shutting down at the end of this month. For three years I have had the most compassionate, talented physical therapist coming to the house twice a week to help calm my spastic muscles and loosen contractures through massage, stretching, and myofascial release. It has provided so much pain relief.
Two weeks ago I called to reorder my infusion supplies and had to leave a message. Nobody called me back, so I called them again this week. The voice at the other end of the phone said, “well it looks like it’s been too long since your last order, so we discharged you; you’ll have to ask your doctor for new orders.” The same doctor who will no longer see me.
I do not understand why everything that has been essential to my health is falling apart. We uprooted ourselves from Colorado to come here for better healthcare for me. Now all at once that is crumbling, and I am not sure what the next step is. I do not know if this is God saying He has something else for me, or it is time to stop fighting.
I am weary. I am frustrated, and I am confused. I am exhausted from trying to advocate for myself for all the things. I wrote down a list of each of my doctors, most of them specialists who only manage one particular issue like respiratory or GI. There were fifteen of them. I know for certain I do not have the strength to run around to fifteen different doctors every month to get my needs met.
This feels like standing in the middle of a tightrope where neither end can be seen. Unsure of whether to go backward or inch forward, not knowing what waits at the other side. Fortunately I know where to look; up. No matter how shaky my situation seems, or how far the drop is, I can count on my Heavenly Father to reach down and steady me with His tender assurance. He is the one who sees the bigger picture.
I greatly appreciate your prayers in these days ahead as we try to figure out the next steps. I know God will provide as He sees fit, and I am trying to focus on the quality of my moments with each of the people dear to my heart, and not stress about the rest. Easier said than done.
Choosing Hope 