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Fading by Degrees

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.

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Christmas Every Hour

6:30 am
7:30 am
8:30 am
8:30 am
9:30 am
10:30 am
11:30 am
11:30 am
12:30 pm
1:30 pm
2:30 pm
3:30 pm
4:00 pm
4:30 pm
5:30 pm
6:30 pm
7:30 pm
8:30 pm
9:30 pm

”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

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Broken by a Pillow

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.

endurance

A Room Crowded With Sorrows

“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.

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Thanksgiving

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.

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Life in the Balance

You often get to see the good and miraculous in my life, and I love sharing those parts with you, but right now I am fighting from a pit so dark it seems to swallow my ability to find the streams of light I have grown accustomed to piercing the darkness. My heart and mind are tired. My body is exhausted. I have dared to hope that I am still here because God is going to bring about a miraculous healing in my life, but as time edges on and I feel the weight of not being even a shadow of who my people need me to be, I find myself dreadfully weary of this life hanging in the middle between the miracle of being restored to health and the seeming relief of death.

Red tape curls angrily around the care that I need; new rules preventing what I was able to get before, but the alternative of leaving the security of what care I do have is intimidating and perhaps foolish. I am tired of having to fight for myself; to advocate for things bigger than myself when I hardly have the strength to take a shower.

Come and save me Lord God, because you bless and protect your people, and I am yours. Give me a glimpse of the glory behind this wall of darkness to refresh my hope in you. You are my God and my protector, please answer my prayer and refresh my hope in you. Let my life be a living testament to your sustaining grace; whether by giving me the endurance to withstand whatever suffering will align my life with your heart, or by extending the grace of calling me Home.

I do not know how to gracefully live out what you have called me to, but I know you have been good all my life, and I trust that if hanging in the balance is what you have for me, you will help me find the strength to endure the calling you have set before me. So help me Jesus, I need your love to restore my peace.

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Sitting in the Hard

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.

Your words and your tears will mean so much.

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FOMO

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 😊