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Someday. A letter to my children.

There has been a lot of praise this week for the Mothers. I love and cherish each and every “you’re the best mom in the world,” but I can’t help but wonder what my kids will remember of me long from now. It flatters and humbles and melts me in a puddle to hear them say they would pick me again out of all the moms, but I hope they know that I am equally aware of the holes I have left them.

Someday, my sweet babies, when I’m no longer here to look over your shoulder or come running from another room, I hope you remember that I absolutely loved being your mom. I hope you believe me when I say that you were my world. I hope you remember all the silly times and happy times and treasured memories we made, and that they bring a smile to your face every time you think on them. I hope you remember the sad and the hard times too, but I hope what you remember about those times is that we made it through. We didn’t always have the answers, and maybe we didn’t always choose the best choice, but we stuck together and we looked to Jesus, and we kept on pushing forward until things got a little easier. I hope you remember that in the sad times you still brought me much happiness.

I hope that you know how keenly aware I was of my mistakes. I hope you’ll forgive me for them; for being too protective, too selfish, too impatient, too narrow-minded, too angry… I hope you believe that I was doing the best that I could at the time. At least, that’s what I thought I was doing.

I pray that you not only forgive my mistakes, but that you learn from them and carry into your own families a deeper knowledge and a better way than I had. I hope you’ll carry some of me too; like getting up early to make a big Sunday breakfast and singing at the top of your lungs like you just don’t care.

Please forgive me for the empty spots I left and the hurts I caused. I know they are there. Forgive me for not being brave enough and humble enough and wise enough to always see them. I so desperately hope that there will be strong and meaningful people in each of your lives who can speak truth and strength to where I gave you weaknesses, and you will discover yourselves more whole.

Each one of you were the most precious, unimaginable gifts to me. I could never have dreamed of being given such blessings as you. You rocked my world and colored it and made it full of laughter and music and fun, and I could never have lived such a magnificent life without you.

Thank you for teaching me to look outside of myself; to relax, to trust, to slow down and enjoy, to take risks, to fight, to have courage and hope and ambition. I hope that the string that I gave you is enough to hold onto and run into the world; exploring and learning and conquering and becoming everything you dream you can possibly be.

I hope you will feel glad that I was your mom. I hope you can keep the good parts of me and ditch the bad, and keep making an infinite number more of the best of yourself.

You are my children; you made me a mama. Showed me how strong and how flexible and how silly and how important I could be, and it was incredible.

I love you each; from the bottom of the ocean, to the top of the sky.

Love,

Mom

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For the Mamas. And everyone who ever came from one.

No thing in life has ever made my heart beat so proud, so fierce, so gentle, so unequivocally bursting with the highest and lowest of all emotions as being a mother does.

It has made me so many things. I have been the young teenage mother, naive and unsuspecting. The energetic working mom, balancing a career while serving growing little hearts at home.

I have been the expecting mother, dancing over a positive pregnancy test, and the would-be mother staring in disbelief at an ultrasound screen that has gone silent. I have been the adoptive mother, gathering the seeming endless trail of papers required to welcome a lonely heart Home, and I have been the foster mom who had to say goodbye with a desperate prayer for a loving mother to come.

I have been the woman struggling with infertility and avoiding going out in public for the pain of seeing maternity clothes and new babies. I have been the mother of a perfect natural delivery and of an unplanned and frightening c-section.

I’ve been the mother pleading for a miracle over a quiet hospital bed, and the mother staring down a deep gash in the earth where my child would be buried.

I’ve been the homeschooling mom, and the mom that packs lunches before the early morning school bus. The mom who cheers and waves and beams with pride, and the mom who aches over the heart of a wayward child. I have been the mama supported by a loving husband, and the single mom trying to hold it all together through long deployments.

I have been the mother who delights in adventuring and the thrill of trying new things, and the mother who grieves over being too ill to make it out of bed.

I have been enough to know that there is no “right way” to mother, and that we are all just doing the best we know how, and that the one thread that runs common among all mothers and would-be, have-been, and almost-mothers is the unbreakable thread that formed when we realized we could or would or had to belong to something smaller but greater than ourselves. Something that held the power to provide us with our greatest, most intense moments of joy and fulfillment, and also the lowest depths of grief and insecurity.

If you are a mother, have a mother, know a mother, want to be a mother? That’s something. That is one ridiculously terrifying and exuberantly thrilling job description that no one really lets you in on until you’re in the thick of it. And this world needs you and your desperate love and reckless hope and selfless ambition to keep the heartbeats of all of us thrumming to find our places and our purpose in this crazy life.

I leave you with this…

We all have come across people in life that tend to make us feel better about ourselves and how we are doing. It’s human, it’s our nature to compare. So imma give you a free “feel pretty super good about yourself” right now, or at least next time you’re wondering if you’re the only mom who does these things you will know you’re not alone.

I have been at this mothering thing for 15 years and 11 months. I have most definitely done one and all of the following, some of them on more than one occasion:

1. I have *actually* pulled over and made a kid get out and walk the rest of the way home.

2. I have let (begged?) my children to stay home from school because I was too exhausted to drop them off and pick them up.

3. I have mistaken one of their adorable drawings of a person or a flower for something completely unrelated and crushed their little spirits.

4. I have let my children have cereal for dinner and dessert for breakfast.

5. I have pretended to make a call and given them the “oh sorry honey, they didn’t answer,” when I couldn’t fathom adding one more friend or activity to our day.

6. I’ve been distracted when I was supposed to be watching their super-coolest thing and missed it and told them how amazing and incredible they were anyway.

7. I have gone to bed before my children and told them to remember to tuck in the little one and then turn out the lights.

8. I have forgotten it was picture day at school and been reminded by a portrait of haphazard hair and a tacky two-years-outgrown T-shirt with an obnoxious graphic on the front.

9. I have spent endless time on meal plans and grocery shopping and stocking up on all the good stuff and then been so bone-weary I have ordered delivery or let them eat whatever they felt like anyway.

10. I’ve forgotten to replace pearly baby teeth with shiny quarters and blamed it on them for putting it too far under their pillows.

11. I’ve been late getting them places because I can’t decide on what to wear, and then let everyone assume we were late because of the kids.

12. I have secretly wished that for Mother’s Day I could have a small break from being a mom.

There you have it. Wherever you are in your motherhood, hopefully that gives you a reason or two to feel better about your tireless efforts to safely and effectively grow your little people into productive, well-adjusted adults with very little scar tissue. Just remember, there is no one-size-fits-all-mothering, so keep doing the best you can with what you know. Warrior on mamas!

My kids; here and in Heaven, biological and not, have made me so much of who I am, and I am all the better for it. They challenge me, inspire me, forgive me, empower me, love and accept me in ways I never could have imagined, and I truly am the luckiest girl in the whole wide world for getting to be their mom.

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What’s Making Me Tick

I carry with me “get out of jail free” cards for whenever I am somewhere a metal detector is involved. Rumor has it if you listen closely enough, I actually tick. I digress… One of my cards is for the medication pump that delivers meds into my spinal fluid, one for the metal coils that are part of my G/J tube in my abdomen, my port usually gets “bomb-sniffed” just because it shows up even though it isn’t metal, and this week I added a new card to my stack. I have the opportunity to try out the Walk-Aide; a device strapped around my upper calf that allows me to lift the toes on my left foot without the use of the brace I have worn for the past 5 years. Intriguing and exciting to say the least, and I have a feeling it will be worth being one more part bionic.

I have been switched back and forth between several different kinds of AFO’s (ankle-foot orthoses) over the past several years, depending on the changing severity of my weakness and muscle spasticity. They have all had the same goal though; to provide lift to my toes and ball of my foot, which isn’t getting the message down the nerve from my brain. Without help I cannot completely clear my foot when I’m walking, which leads to lots of awkward tripping and stumbling. I managed to keep up for awhile, even finding a way to get a foot-drop brace crammed into my duty boots, but it hasn’t always been the most comfortable.

Enter this fancy new device called the Walk-Aide. After some playing around with where the electrodes need to be, my orthotist located the exact spot that the nerve is in my leg to tell my foot to lift. She then worked through trial and error to find just the right timing and intensity to provide electrical stimulation to the nerve enough to lift my foot for me every time I step. The shock is pretty intense and often surprises me, especially when I get up from sitting for awhile, but it’s a pretty incredible feeling to be able to walk around barefoot, in my favorite shoes, or *gasp* in sandals without a bulky brace. I have been buying bigger shoes and work boots in order to accommodate my braces the last several years, and have had to completely avoid things like well, pretty much all pretty shoes and things like flip flops and sandals. Needless to say, I’m pretty stoked at the idea of being to wear whatever shoes (or no shoes!) I want, and still be able to walk in a more normal gait pattern.

They are letting me trial it for a little over a month, so I’m hoping that will give me time to adjust to the discomfort of the stim, start waking up some of the muscles I haven’t used in awhile, and give my hip and thigh a break from doing all the week. The deepest hope is that my health insurance will acknowledge the benefit and agree to help with the cost. If not, and I still decide it’s worth working for, my big girl and I have decided to do some art and projects and stuff to sell to earn the money needed to buy the device for me without the help of insurance.

Today, my leg is absolutelyfreakingexhausted from walking around with it for various chunks of time. I’m committed to seeing it through though, and excited for the potential change that will make one more thing easier and more functional for me. Stay tuned!

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New Waters

Tecpr2 and Kif1a.

6 months ago I would have looked at these strange symbols and had no idea what gibberish this was. Today though, those 11 characters form the mold of a very different shaping of my life.

I have sat on this for some time. Partly because it has taken awhile to start to gather my thoughts. Also because some part of me must have been hoping for something different.

For years we have been treating two of my beautiful little ones for weakness and tight muscles in their lower bodies. For one of them we attributed it to his premature birth, and the other we figured was just growing faster than her muscles, as she stretched lean into her preteen years. We had literally the best therapy team on the planet; their skill and knowledge just off the charts, combined with the loving compassion that has allowed them to become dear friends well beyond just therapists. When we moved out of Colorado though, we had to start over. It was a very lengthy process of finding a new primary doctor and trying to get the kids set back up in therapy.

It was the very first time our 12 year old girl had been seen by her new pediatrician. Honestly, I was expecting to walk in, explain we had been doing physical therapy for tight muscles and frequent ankle sprains, and be quickly ushered out with a prescription in hand to continue our weekly routine. This doctor took pause though. As she evaluated my girl’s tight muscles, and noted her brisk reflexes, she suspected something more. She did give us the referral for physical therapy, but she also sent us with a referral to be seen by a pediatric neurologist. I really hardly gave it a second thought. It was not uncommon for us to be sent to a specialist here or there, and after what we went through with our youngest daughter, I never minded an extra appointment just to give us some peace of mind.

We pulled her out of school early one afternoon to have our first trip to the Children’s Hospital to meet the neurologist. I was still limping along on crutches after hip reconstruction, my littlest guy was tagging along as usual, and I expected we would be in and out. After answering a slew of questions, the kind doctor with an accent I struggled to understand began examining my girl. He tested her reflexes again and again; reflexes I didn’t even know existed (did you know there’s one on your chin??). Back and forth he went, stretching and re-stretching the muscles of her legs that refused to soften. The room was mostly quiet aside from the occasional question, and the sound of my little guy playing with a toy dump truck on a nearby shelf. Then with a reassuring smile, the doctor said he needed to ask a fellow doctor a question, and he left the room. The minutes started to drag, and the dump truck had been abandoned for clingy questions of when we were leaving by the time the doctor came back in. He had with him a confident and no-nonsense woman who introduced herself as the chief of pediatric neurology. She proceeded to repeat some of the stretches and tapped reflexes again with the funny rubber wand. “Do you see what I mean?” our doctor asked, and immediately my back tightened and I was acutely aware of the thickness of the air I was trying to breathe. The chief doctor agreed with him, and our doctor motioned to my young son now curled up on my lap, and said, “he has the same thing.” At that point, even though it wasn’t even his appointment, the chief asked if she could look at our boy also, and she lifted him up on the table to engage his muscles and reflexes as well. And then she asked if she could check mine. My mind was whirling at this point, with a hundred different questions.

When the examination concluded, the youngest went back to perusing the shelf of toys and books, and the Chief of Pediatric Neurology turned to address us. She said, “in all my years here, I have only seen one other patient with these symptoms, and he had HSP.” She went on to explain that she would request a geneticist to come talk with us, then she bustled out of the room. I sat there wide-eyed, my heart pounding with a sense of dread. Our kind doctor went on to explain that Hereditary Spastic Paraplegia (HSP) is an extremely rare, inherited condition that causes progressive weakness and spasticity, most often of the lower extremities. He said that they would have to do a brain and spine MRI and some genetic testing to confirm, but clinically he was already giving the diagnoses of HSP based on his exam. He said we would need to be seen in the physical rehab department for Botox and AFO’s (ankle braces), and that we needed to increase the number of days in a week we were receiving physical therapy. He was so kind and gentle, and after so many harsh and busy doctors, it was such a gift to my heart that this doctor showed intense caring and compassion as he delivered the news that was about to change the landscape of our future. A woman from genetic counseling came up and asked me about a million more questions, and then we walked back out into the brisk gray to go on about our lives.

The approval for the genetic testing took for-ever, and once the blood was taken, it took even longer to get the results back. In the meantime we set about getting the MRI. The first time around my girl walked in brave, but when the icky contrast was pushed through her veins toward the second half of the scan, she got uncomfortable and wiggly and eventually they had to discontinue the scan. The second time we scheduled it, I requested she be sedated so she would be more comfortable for the two hours laying flat on her back in this noisy tube. If you have read my take on the MRI experience (click here), you will know it’s not my favorite thing, and I was feeling very protective of my little treasure, and a little sad they hadn’t sedated her to begin with so we wouldn’t have to go through this again. The second time we showed up for her brain and spine to be scanned, we got through the fear of another IV, and then she drifted off into a silly, giggly sleep while the great machine rumbled and clicked. After that it was a lot of weeks of waiting, and not only did the thoughts leave the forefront of my mind, but I truly started to convince myself that the results were going to come back fine and we were going to move forward grateful that this wasn’t going to be part of our story. I mean really, there has been more time than one that a doctor has gotten me all worked up that my kid has something serious wrong, and it’s turned out to be nothing. We’re good.

I’m sure by now you have figured out that we did not get that “nothing” report that I hoped for. We came back in to go over test results and for an official exam of the baby boy of the house, and received the confirmation that both of them have mutations of the genes Tecpr2 and Kif1a. My sweet babes, 0.5 in 100,000 people with this neurodegenerative disease.

Later I will share with you what we have learned so far and what the immediate future looks like for us. There has been grieving, but also hope and determination as we figure out how to best roll with this new challenge.

Determination is strong, joy reigns, hope is *always* here.

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Good Find!

Remember when you were young (or not so young), and your relationship with that certain person ended for one reason or another, and suddenly e v e r y single song that came on the radio was about you and them? Remember how you were trying not to think about the entire situation, but without exception every quote and billboard and color and smell and experience brought you right back to a memory of them? Yeah. I’m going to guess most of us have had some kind of encounter like that, and that’s the best way I can think to describe what I have encountered recently. Not the ending of a relationship, but the determination to have one mindset about something and being wholly bombarded with everything in tarnation speaking directly to the thing I have been trying to ignore. At first I was mildly annoyed. Yep, I can definitely recall an several eyerolls. Eventually though, I just had to shake my head in amusement and chuckle a little as I gave in to admitting that my thought process is not always the whole picture.

Hellbent or not, here is what I’ve been reminded:

I matter. My story matters. That means you matter, and your story matters too.

Everything that has and is shaping me (and you) can be used to help and encourage someone else.

There is *always* good to be found.

There just is.

Take it from me, an expert glass-half-fuller; no matter how $#!+ you believe your present situation to be, if you look hard enough there is a perfectly packaged nugget of goodness sitting right next to it. I’m searching for it, you should too. Let’s pick ourselves up; our bruised battle-worn tattered souls, and seek out the good in the middle of each excellent, mundane, or heart-wrenching line of our stories. This is who we are; the fearless, tender, beautiful kaleidoscopes composed of each different fleck and shard of our one magnificent life.

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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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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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