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Super Glue

Lately it seems that all around me there has been an excess of reminders of what I can’t do right now. Every siren, every fire station, every invitation from my 5 year old to join him pretending to put out fires and bandaging up stuffed animals is an acute reminder that this is the me that once was, and that is just *hard* right now.

I have never been afraid of broken things, but I am afraid of the broken me.

All my life I have been drawn to the broken. I struggled as a child to separate my deep empathy and emotions when I knew of someone hurting because I was so deeply moved with the urgent desire to help. When I was older I started using my gifts to run towards, not away from pain; feeling so at home whenever I could muddle through making someone a meal after surgery, find a heartfelt card for a grieving friend, or sit with someone who was fighting for healing. I chose a career that put me smack in the middle of broken. My blood pumped courageous every time I stood on the holy ground of loss; ashes and tears and life-breath spilled on my hands and my boots right in the midst of someone’s most broken day, and it seemed the most natural thing in the world to be there trying to help pick up the pieces.

But my own broken… why is this such a different kind of beast? I am afraid of the me that has to rely on someone else because I know I’m not strong enough. I’m disgusted at the shadow of myself that fights to get through a shower before having to lie down again. I’m terrified of the me that is dependent on machines and medicines and procedures that will completely undo me if ignored.

I suppose it’s so terrifying because it is such a stark contrast to who I once was. Fiercely independent, tenacious, resourceful, brave. I admit I am resistant to big change, and this kind of change, well it just feels the biggest.

I finally found the right kind of super glue I needed, and last weekend I began piecing together the collection of broken things in our house that have been waiting in the balance of being made like new, or finally being swept into a trash bag of forlorn and dusty pieces. A cracked pot, a chipped bowl, a tenderly crafted piece of pottery that slipped from the small hands of its creator before it even made it off the school bus. It took some trial and error to find which shattered slivers would sit nicely together with a thorough coating of the glue and a few minutes of firm pressure. Some of the pieces fit right back in, and the unsuspecting eye would never presume they had been broken. Some of the pieces were missing tiny edges and corners, and while they will never fit together in quite the same way again, as a whole they still make a beautiful thing.

I want to still be a beautiful thing too. I long for those pieces of me I’m so afraid of to be tenderly gathered and carefully fastened back together. Even if all my edges don’t quite meet right again. Even if I can’t serve the same purpose that I used to. I just want to be whole again.

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The Good

I received a message from an encouraging friend today. It said, “Every day may not be good, but there is good in every day.” It is ever so true.

Here is some of the good I found today:

Power socks. Always show up to battle with appropriately chosen socks. I have a few special pairs reserved for such days when lucky socks are necessary .

Bananas and morphine. You really can’t go wrong. My pump was turned up a bit today to try to help control my pain. I was met with unexpected kindness and understanding, and it made the whole process better.

Signs of Spring. I am so ready.

A gift of an open spot…

Which was especially nice because…

Some reminders along the way…

And an incredible gift of love from a new friend… she brought over a delicious meal from one of our favorites, Cracker Barrel.

The littlest was so tired from all of our going, combined with missing a nap, he got a case of the giggles which proved quite contagious. Conversation was lively as we recounted the best moments of the day, punctuated with chocolate cake.

It was a hard day, but we were carried. Prayed for, encouraged, helped along by generous friends, and there was definitely good to be found.

Thank you dear friends for coming alongside me today; it made all the difference.

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Fighting Tuesday

I am simply beyond myself.

Last night I slept solid for the longest stretch of hours I have in weeks. With my other half away on work,  I barely started the bedtime routines, gave kisses and songs, and left the littles to finish helping each other tuck in, because there was no way I was going to beat the clock to bedtime last night.  A single tear slipped from my cheek to my pillow, because in the end I didn’t even have the strength to cry.

I hoped this morning’s sun would rise with a fresh store of renewed energy, but the early hours found me reaching to steady myself as I shuffled to wake little people for school.  Yesterday was a long stretch of sitting for a doctor out of town.  Sitting for the drive out, sitting in wait for the doctor, and sitting for the ride back.  My small frame is rebelling at having been made to hold the uncomfortable sitting position, and morning tears have fallen with the growth of pain overnight.  For a morning that I hoped would bring the hardest already behind me, I am extremely discouraged to face the week ahead. I have smaller, more manageable things to accomplish this week, and right now they feel like mountains.

I wished it would all be easy after Monday, but this morning as I’m vomiting from the influx of sharp pain, I’m overwhelmed at the thought of even making it to the next thing.  It’s a tough Tuesday, and I’m fighting hard to find the sweet spot of what I can handle, having to dig deeper to find the fuel to carry me through.  My tender-hearted oldest girl is so graciously helping me this morning.  Skipping the first class of the day to help me with the little one and getting out the door for another doctor.  I will sit quiet in the waiting room, willing time to skip ahead to the snuggling of my little people this evening.  I will try to be polite even though the office staff will be detached and matter-of-fact, this pain and weariness making me want to scream.  In my mind I will wander ahead to a quiet vacation with my loves so that I don’t feel the needle prick that I hold desperate hope will bring me relief.  I’ll push through my day by each tiny step at a time, choosing to sacrifice all my wants in order to simply accomplish the needs.  I’ll be pushing through with my eyes on the hearts of the people who make it worth doing, because I know they’ll keep holding me, even in my tears and my hurting, and my near despair.

I know today won’t last forever, and I’ll be able to say that I made it, but goodness, it’s going to be a fight.

Power socks! Do you have a special article of clothing you wear for tough days?

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When Anxieties Rise

Dark has dropped again, and with it the quiet throughout the rest of the house. I planned to turn in early, gearing up for a full and busy day tomorrow. That is kind of silly, because I know I won’t sleep regardless of what time I crawl into bed.

Tomorrow I meet another doctor. Another new name with an important list of abbreviations after it to add to my growing list of specialists. I’m a list-girl, I love lists. Not this one. I’m tired of having so many people revolve around me. I wish I could tell them, “your schedule has cleared for today, enjoy some time off because I am running away into the brightening sky with my people, and I won’t be back until late!” I wish this appointment, and all the appointments could just hold up for a second; let a girl catch her breath and sit and just breathe… and feel… and be… with nothing interrupting that feeling .

I suppose mostly, I’m struggling with my attitude. There are many things I would rather be doing, and so I’m grumbling about these hard things. I also am avoiding them just for the fear of the matter. I’m afraid of what they’ll say, afraid of the reports and what they will mean, and afraid of what the next thing coming will be. I’m not really sure how many chips I want on the table, and I’m not ready for it to be my turn yet.

Tomorrow will come however, no matter how late I worry over it, and I will best survive it in manageable chunks. So I’ll take big bites of the best things like early morning snuggles and the friendly steam of hot coffee, and I’ll look past the shuffling papers and the nervous hands. In between whatever moments tomorrow is going to mean for the future, there are going to be joke contests, splashy puddles, treasures to find, and extraordinary moments of laughter and love. Because that is life… joy, fear, hope, despair. Rinse and repeat. And it’s still beautiful.

What difficult thing are you wanting to avoid this week?

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death, faith, family, grief, gun laws, guns, hope, school shooting, sisters, suffering

Staring Down the Barrel

“Hope holds a broken heart together.”

~Ann Voskamp

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I am sitting in the thick blanket of nighttime, listening to the steady rain beating the drum roll of its sixth hour on the hollow-sounding roof.  The intense piercings of a familiar pain keep me from my slumber, and I am delicate in my constant re-positioning and pill-swallowing to avoid waking the mounds of purring sleep close to me.  My bedroom started out far less crowded tonight, but as the starlit veil fell, came the padding of feet and the tiny, emotion-filled voices describing fear of the dark, tumultuous dreams, and loneliness that needed the quiet comfort of my presence near by.  So here we all are, their chests finally rising and falling with the rhythm of their dreams, and me wondering when things will go back to normal.

This was a headline week for guns.  A few state lines over, lives were shattered as another troubled youngster unleashed explosive fury on rooms full of unsuspecting  teens and adults, cutting short the futures of many who had planned on having more time.  All the articles and bar-room-conversations and social media statuses are blasting loud the positions and rules and amendments and movements that each are convinced will bring an end to this terror. All of this buzz about bullets and laws and security and the NRA, and all I can think is how will these kids face tomorrow?  Closer to home, how will my daughters face tomorrow?

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Just a few days after the most recent school shooting in Florida, my girls experienced their own kind of horror at the barrel of a gun.  My two, along with a roomful of other innocent, energetic young girls had come together to kick off the Spring season of cheer leading.  The room was full of ponytails, giggles, and camaraderie.  As they finished tying sneakers and warming up tight muscles, a new and horrifying ambiance sliced through the room.  My oldest daughter had slipped out for one last dash to the restroom before practice, and when she rounded the corner to go back into the gym, she ran right into him.  No one knew, so the coach opened up the door and let them both inside.  The next 90 seconds were so brief, but stretched eternally in the burning scars of terror that now streak the memory of everyone watching.  A few odd but indubious remarks were made to strike up a conversation with their coach as he positioned himself closer to the cash box where each parent had given the weekly dues.  Then, beneath his slouching hood, he grew expressionless and in the longest instant, the dark, round metal of a gun contradicted the innocence of the hairbows and glitter, and the giggles turned to a fear that would not be forgotten.  My girl, still the closest to him, tried to make a subtle move for a cell phone, but his instincts were fast and he tucked the metal box and dashed for the door.  Then the knee-jerk reactions of the coach slamming her shoulder into the door corner as she lunged after him, the instant tears of the little sister who felt the hysteria of watching her sister so close to a ruthless bullet, and the mayhem of the entire crowd as adrenaline was unleashed.

I am still incredibly grateful that this tasteless man had a thirst for money rather than for blood, and my girls got to come home safely that night.  What was no longer safe though, was their security and peace of mind.  Tears upon tears from the two of them and the best friend as they clung exhausted in an embrace of profound emotion in my kitchen that night.  Panic, flashbacks, sweating whenever they found themselves in a room too far from the safety of knowing a trusted adult was arms-length away.  An incessant need for the security of a cell phone pressed closed whenever they have to leave the house. Nightmares and sleep-screaming through the deepest hours of the night, peace divided by having to learn that sometimes these things happen for no good reason.

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Tomorrow my girls will face walking back into that gym.  My oldest will relive the details of his coat and his birthmark as she walks through the same hallway where he first cut into her memories.  My youngest will remember the powerful emotions of watching helpless, wondering if she was going to see her sister’s future rewritten.  They will have to come to terms with these memories and these fears, and I will support in them whatever ways that they need, but I can’t help but wonder… what about the kids who watched friends and classmates and teachers gunned down in front of their eyes this week?  How will they find the courage to walk back down those halls?  I truly cannot grasp it.

Everyone has an opinion about what needs to happen.  More guns, less guns.  More restrictions, more screenings, more freedom, less.  So many different points of view.  I have an opinion too, but I’m not going to share it right now.  Right now all I can think about is the downright brokenness of it all. The terror, the pain, the distrust and the loneliness that has gone down in irreversible ways.  The truth is, regardless of what decisions are made about whether or not guns are legal and what the process will be to get one, there is an issue at the foundation that is something we all hold the answer to.   This world needs people who care more for the hearts of their neighbors than about how their status will suffer if they are seen breaking bread together.  It needs hearts that can anticipate the needs of others, and read from the eye motions and the face lines when someone needs an extra dose of kindness.  This world needs people who are wholly committed to seeing each other for what they are; other humans who are hurting and struggling and trying to make it, and in desperate need of being loved, accepted, and understood.

We don’t need gun laws, whether for or against, in order for this to happen.  We simply need to look up, and look around, and reach out with everything we’ve got in order to say, “I see you, and I know you’re hurting, and I’m going to walk you through it.”

We all just want to be seen.  Have you ever stopped to think that maybe you are part of the answer?  What is it that’s holding you back?

Mitchell-85

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daily graces, endurance, family, hope, joy, suffering, trials

Bits and Pieces

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I have this blank canvas to scribble my thoughts, but lately I have let them recycle, tumbling unsorted in the confines of my mind, timid of what people will think if I speak out loud.  Someone told me not long ago that I should try writing about something else.  I took it to mean people do not want to hear the confessions and wonderings of my soul; they are probably rolling their eyes and turning off their screens.

After talking with a close friend about what else to write about, I came to the conclusion that I don’t want to write about something “else,” and I don’t know how to.  The reason I write about what I do is that it flows quite easily when I need to release and process difficult things.  It’s therapeutic for me to free up some space in my thoughts by unleashing the tangle of words and emotion that sometimes becomes difficult to find space for.  Part of me also supposed, in the beginning of this place, that someone else would find hope and strength in the raw processing of the journey of my life.

I have been learning more lately that it is okay to let every experience, good or bad, shape who I am and how I view things.  Let’s be real; life is never going to be all rainbows and bubblegum, so if we are going to become something other than tainted and bitter, we are going to have to figure out how to filter through our ups and downs and pick out the important growth-inducing bits, and let the rest hit the shredder.  That’s what I’m trying to do here; sift through the daily barrage of twists and turns and cling to the slivers of truth that will deepen my character and make me a softer, wiser human for the other people on this expedition with me.

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Think back to the last hard, life-changing thing you went through.  It might have been the loss of a loved one, loss of a job, a difficult diagnosis, a traumatic world-event… you know how you had that numb feeling for awhile afterwards?  Thankfully we all have this mechanism that only lets us take in what we are capable of at the time.  Our simple minds and hearts would simply explode if the full force of things hit us all at once.  So we take it in little by little, in easily digestible chunks that we can begin to process and break down.  That movement happens in the telling of the story.  Each time you share your story, your mind is able to handle a little bit more and apply a greater understanding than it could the last time, until eventually you can boldly tell your story, maybe still with some tears, but with a confident and understanding boldness that has replaced the initial shock and bewilderment.  That is my place here.  I will keep on sharing the plot twists of my life as I continue to find deeper meaning and healing in the new details I understand every time I brave it.  And if in doing that some of you are able to pull out the important truths, the pieces that make you bold and brave and inspired, then even the more reason to keep shouting it loud.  My story.  My unbelievable, true, heart-breaking, beautiful, hope-giving story.

Will you share yours too?

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Hiding

I have been hiding. Well, maybe waiting. Or wishing. Or hoping. I guess I hadn’t really quite realized it until a good friend recently said to me, “/this/ is what you should be writing about.” And I realized I hadn’t. Right away I knew all the reasons I had avoided it, but I also knew as I counted up the months in my head… 9…10…11… that those reasons are not showing any sign of stopping, regardless of my waiting. So maybe friend, you’re right; maybe there will be some healing in the unleashing of it all. Or maybe nothing at all, but at least in the telling of it, the twisting, twirling, never quite predictable story that is mine, it will feel more like just that; mine.

I suppose we all have things we hide, or, try to hide, and some of them are easier than others. For a while, I hid well enough that I almost could fool myself. “Fake it ‘till you make it,” right? I suppose without actually formulating a plan, that had become my default strategy somewhere along the way. See, my big secret is that I cannot be my own hero. Who am I kidding… I cannot be anybody’s hero right now. And for a type A, never quit, refuse to fail kind of girl, it has been a hard pill to swallow. A lot of very hard pills to swallow.

Instead of being the pair of boots that lift the weakest to their feet, I am the one dazed to the sound of boots carrying me. Instead of being the reassuring face that will explain things 5 different ways to calm an anxious mind, I am the fearful tangle of unanswered questions. I am the one needing rescue.

I didn’t say anything at first because I supposed it was temporary. I didn’t say anything a little later because I imagined it could be a mistake, or I would wake up from a bad dream. Then it became not saying anything because I refused to accept this story for my life.

That sounds ugly.

I don’t really know how else to put it though. I have been going through these motions of life-fight ignoring that this could be my future, rejecting the very idea of coming to any kind of peace with it, and stubbornly clinging to the absurdity that this just needs to get figured out and everything will go back to normal. That there’s no reason to even explain to anyone, because by the time they find out, I’m going to be back in the saddle; wrangling smiles from my kids, scrambling mountains with my friends, and feeling the siren thrum with the roll of the next due.

Eleven months of being so angry and scared and just, broken. My friend is right. This is my story. It is my story whether I tell it or not.

We are what we show…

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But we are also what we hide…

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In the scarred and painful exposure of the unknown, I admit I do not have a tidy word to leave here. My body is sick. Every day is fighting a fight that I will selfishly admit would often tempt me to quit. There are days it feels far easier to stay in a ball in bed; to avoid the pills, the pokes, the tubing upon tubing and meticulous regiment that grows monotonous and wearying, especially when I still feel myself fading away in spite of it. It has shaken my life in every way, and taken me far from the home and the me that I once knew. That is where I am; in a strange body, in a strange land, fighting a discouraging and uncertain battle.

Perhaps there will be more of the days that find me with strength and willpower to share the coming pieces here… or perhaps you will know by my silence that I am simply clinging.

Speechless or not, familiar or not, this is my story. One I am still struggling to contend with; I’m not going to feign sainthood and paint you a picture of the peace and assurance I have in accepting whatever new ending is being rewritten for me. No, I am still wrestling. Wrestling hard, wrestling deep and ugly. Some days I come out on top, and some days I’m pinned quick by all the sharp and broken pieces of it all. But that’s the thing I guess… I dreamed my life would be a beautiful mosaic… I suppose that means I have to begin with the pieces.

This may not be the story I would have chosen for myself, but it is the story that will shape me and color the way I view each of my future moments.  I have been learning that the sharing of my story brings healing, and hearing the hard stories of people brave enough to share them has made me brave, and I hope that courage will continue to be passed from one to another.  We are all broken in some way or another; meeting each other in those broken places provides a safe and healing place to face our deepest, most painful questions together.

What are you hiding from?

 

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Gastroparesis, hemiplegia, Spastic Hemiplegia, Tubie

Missing

Earlier this week I swept the floor, hung a bulletin board on the wall of our house which sits almost two months later in a state of not feeling moved in yet, and I folded a load of laundry I had mananged to dump from the dryer into a heap on the couch three days prior. I stalked the clock until nap time, when I gladly collapsed into a heap in my bedroom once the house was quiet. And I wept. A silent pouring relief of tears plopped dark circles on my pillow and I cried of happiness. Tears because I was so grateful to have been able to do those three things for the first time in…. I don’t know. I realized in those moments that I have been so overwhelmed in the grief of losing myself and my normal, that I have forgotten to be so deeply thankful for the triumphs like these. I know by that evening I was scowling at myself again, because it is ever so easy to compare myself to the old me and measure myself by the things I used to be able to do, and it’s a painfully distant gap. I want to remember these moments of victory though. I want to learn to give myself grace and to be quick to gratefulness even over the wins that seem so small. It is the repeated small victories that give me the motivation to keep pressing on and leaning in; how unfortunate for them to be overlooked. Sweeping, hanging, folding… so small, but still proof of something mighty. What small victories are you celebrating today?

 

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Spastic Hemiplegia, Uncategorized

Living Raw

 

Lying there in the scratchy, unflattering folds of hospital blue, the crunch of paper stuck to the pain-sweat that slicked down my skin. My eyes were fixed on a wavy, colored light that slowly melted from warm blues and greens to soothing purples and golds, and back again. I was startled by the green scrubs that began chanting at me “We are breathing in together. In through your nose, out through your mouth; nice deep breaths. You’re doing great.”

She was wrong. I’m not doing great. In the deep inhales to distract my mind, I still hear the fear even louder. The blurs of soothing light draw my focus only enough to be jolted back by the cold touch and the sharp jabbing of the unnatural. The tearing raw of my skin during weekly routines, and the endless waking and checking and measuring and eternal dripping of the life-giving liquids feels no longer a hope, but a taunting anchor or what used to be.

I hold tight the salty wet of my eyes until the dark refuge of my quilts, because sets of young bright eyes are looking, watching, being brave for me and hoping to find me brave too. Those faces are what give me war-blood to push back hard; to carve giant chunks of living that are difficult and excruciating, but to them are memories treasured. Today’s sorrow leaves me wondering what I have left to give, but just as the sun relentlessly continues to peer over the treetops to light each dark morning, I know night will bring a small refreshing, a renewing of strength, and a little more fuel to burn for each one more day.

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Still Hoping

 

 

Hope has been a weighty word for me over the most challenging seasons of my life. I have clung to it, believed it, pressed into it. There is much beyond me that I cannot grasp, and I do not pretend to have the answers. What I’ve come to rest in though, is that whatever we are each hoping in, whether it is something tangible or not, is worth pursuing when it keeps our feet hitting the floor on the most suffocating mornings. Hope is worth clinging to when it gives us the will to keep fighting an impossible battle. Hope is worth reaching for when it magnifies our purpose and causes our love to multiply and reach far beyond our own borders. So until the time comes to lay down your battle, keep finding something that gives you hope. Keep waking up and remembering it each morning, and using it as the fuel that propels you through the thick storms and out into the sunshine of triumph.

Hope on.