Kathy Sebright

Writer. Speaker. Believer. Runner. Truth Enthusiast.


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Emmett’s Endurance Event-the original

Originally posted at http://www.runjunkees.com/junkee-logic/runjunkees-runner-of-the-week-kathy-sebright

I was staring down at my running shoes when they turned blurry; the tears I had been fighting back falling quickly and quietly. My legs were shaking and my heart began to pound wildly as I stared at the treadmill. I can’t do it. I don’t want to do it. What am I even doing here? Why did I think this would be a good idea? I glanced at my husband and saw a familiar subdued panic in his eyes – a reflection of my own. Every unreasonable bone in my body screamed at me to go, get out of here, get my son, get in the car, and drive as far south as I could get. I could feel the fear rising in my chest and I suddenly felt like I was about to be sick right then and there. It was now or never. I stepped onto the treadmill and hit the big green start button.

It is June 20, 2012 just another Wednesday for most people. But I am not most people. I am 3 hours away from home, on a treadmill in a tiny windowless room on the 10th floor of a children’s hospital. There is no amount of training, nothing I could have ever done that would have prepared me for this day. My 15 month old son is with a team of surgeons a few floors below me. He is undergoing a 7 to 8 hour cranial vault reconstruction, which means a team of highly skilled surgeons are cutting open my baby’s head from ear to ear, removing his entire skull, breaking the bones apart, reshaping them, and putting it all back together correctly with plates and screws in order to give his brain enough room to grow.Unbeknownst to us, our son Emmett was born with a birth defect of the skull called Craniosynostosis. The sutures in his skull were closed at birth, inhibiting his skull growth. For the first 12 months of his life, he was a happy, seemingly healthy baby boy. Just a few days after his first birthday, we found him unconscious and seizing wildly in his crib. This one day, this one event would alter the course of our lives forever. Not only would this lead us into a major, invasive surgery to fix his skull but routine pre-op testing would bring us completely unrelated, more bad news about his brain. As they laid diagnosis upon diagnosis on our baby boy – it was like an anchor around my neck growing heavier and heavier. We gathered a team of 16 specialists, we started forcing numerous medications down his throat each day, we went to multiple weekly therapies, and spent an insane amount of hours each week watching him undergo extensive testing and fading into the halls of the hospital.

The anchor was paralyzing at first, so heavy I could hardly bare it. In the midst of the worst turmoil I have ever known watching my little boy suffer so greatly, I did the only thing that still made sense, the only thing I could control. I went for a run. Having been a dedicated distance runner for about 8 years at that point, I knew the healing qualities in running. I ran and I cried. I ran and I prayed. I ran and I screamed. Sometimes the pain and anguish that came pouring out during a run scared me, but I kept running. I ran until my legs ached and my lungs burned. I ran until I could feel the anger, shock, fear, and helplessness slowly leaving my body. I continued to run in an exhaustive zombie-like state in between hospital stays and testing. Each time I returned from my run, that anchor felt just a little bit lighter. It was during one of our 3 hour back and forth drives to the hospital that an idea formed. I am not a woman of inaction; I can’t just sit in a waiting room like a normal person. I knew exactly what I had to do. I had to run.  I decided to run for the entirety of my son’s surgery; the greatest show of solidarity I could muster, the only thing that still made sense. If he must endure this surgery, I can endure my own special brand of pain in his honor and so I started training for the longest run of my life. I was no stranger to the marathon, but this would be far above and beyond what I had ever done. Emmett’s (virtual) Endurance Event was officially born. I made a Facebook event, a race bib with his picture, and encouraged family and friends to do something active on that day with me. It was a show of support for Emmett, even though he was too young to understand it, letting him know he wasn’t alone in this and raising awareness for Craniosynostosis in the process.

Back in the tiny windowless room, the monotony of my footsteps begins to threaten my sanity. It’s no longer soothing. It’s a quiet room with only my pit crew – my running expert husband and marathon running pastor. My footsteps echo loudly in my ears, to the point where I consider plugging my ears to drown out the noise. In my head, I am a thousand miles away: far away from this treadmill, this hospital, and this new life. In my head, I ran away from all of this. But in reality, I am here. Running and waiting in this agonizing state of the unknown.

To pass the time, my husband reads to me and shows me pictures from Facebook. Somewhere in the middle of our crisis, the most amazing thing happened. The running community and strangers from all over the world united with us for Emmett’s Endurance Event. I saw endless pictures of people running, biking, walking, golfing, jumping on the trampoline, gardening, swimming, Zumba, Crossfit, lifting weights, band practices, meetings, and more.  All of these people dedicated their workouts/daily activities to Emmett, holding up a picture of him. Hundreds of messages, prayers, and emails flooded in completely overwhelming us. We were rendered speechless by the response. I wasn’t alone in this tiny windowless room at all, over a thousand people were right there with me.

Hour 6 was the hour that almost broke me. I was physically more exhausted than I can ever remember being, I was running on empty and desperate to stop. Everything hurt – my legs, my feet, my head, and my heart. I was scared. I was tired. I wanted to see my son. I was choking back tears. But I don’t give up; it’s just not who I am, stubborn as an ox if you ask my husband. Failure was never an option for me. My son has no choice in his surgery and if he can’t stop, then I can’t stop either. There comes a point in every race when your heart must carry you because your legs can’t do it anymore. It’s sheer will power. It’s what you tell yourself you have to do, what you tell yourself you MUST do and right now my legs were taking orders from my heart.

Hour 6 is something that will forever live on in my mind. I will never be fast enough to be considered an elite athlete. In reality, I am far from elite. I am slightly overweight and although I run a heavy load of miles each week, I am still a comfortably middle of the pack runner. I am quite average and I have no qualms about that. All these facts aside, hour 6 made me feel like an elite athlete at the top of their game. I was all heart, all soul, all passion, gritting my teeth and bearing what I thought was once unbearable. Never in my life had I felt so very weak, but yet so full of power. I certainly didn’t look powerful but I was doing it. The simple fact that I was still moving was about as powerful a statement as I could make.

We did not ring in hour 7 with a picture and Facebook update as we had every single hour before. If you ask my husband Tony, he will swear my eyes were glowing red and I growled at him when he brought the camera over, but I’m pretty sure I just said “no picture.” One of my closest friends (and fellow runner) made a podcast for me to listen to and gave me explicit directions to listen to it when I was at my wit’s end. This was it. Hour 7 – there were no wits left. I cried and laughed in a barely comprehendible fashion. No doubt at this point, my pit crew was sure I had lost my mind. I listened to it over and over until the call finally came. My son was out of surgery. 7 hours and 26 minutes after I first stepped on that treadmill, a different woman stepped off it. One that knew there were no such things as boundaries and limits. I had run exactly 36.2 miles with an average 12:19 min/mile pace. It wasn’t about the pace at all, but secretly I was hoping to keep it in the 11’s. I told myself that is next year’s goal.

523674_3005112545226_513170556_nEven though I was exhausted and my legs were like jell-o, after a quick shower, I was rapidly walking down that hallway. I wanted to kick open those double doors, push everyone aside, and run as fast as I could to that recovery room. Just as I willed myself to keep running at the end, I now had to will myself to calm down and not start running. Emmett recovered from surgery well and went home within a week. He had 2 different shorter, surgeries since then as well but I did not run for those. He continues to face challenges with his health but is resilient and strong.

Ask me to talk about Emmett’s Endurance Event and I will start crying, every single time. People think they can’t make a difference in this world and that they are only one. But to someone like us, going through that, every single one of these people made a difference just by taking a picture, sending an email, and sharing in this difficult time in our lives. The people that participated in Emmett’s Endurance Event made a difference in our lives, forever.

On June 20, 2013 exactly one year after Emmett’s surgery – I took to my treadmill once again in an effort to continue raising awareness for Craniosynostosis. I collected names and dedicated each portion of my run to others to give back some of the support and encouragement we had been given. When I hit 7 hours and 26 minutes this year, I was just over 38 miles and so I pushed on dedicating my final two miles to my son Emmett. 7 hours and 52 minutes later, I had covered 40 miles with an 11:48 min/mile pace. It wasn’t about the pace at all, but secretly, I was quite pleased. Next year though, I want those 40 miles in the 7 hour and 26 minute mark


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The road less traveled

Originally posted at www.miles4moms.wordpress.com/2014/08/07/the-road-less-traveled/

What can I say to a group of women’s hearts I understand so intimately? I know from experience I can’t take away your pain with words. I know from experience that no amount of understanding and empathetic head nodding will heal your broken heart. I know each of our struggles are both very different and yet very much the same. Our children are different and we are different because of it and that is what makes us the same regardless of the specifics. Whether you were given a shocking diagnosis in a small sterile room, or you always knew something was wrong and actively searched for an explanation, or your child was completely healthy until one day they just weren’t – we are all traveling the same road. It’s a long, lonely, overwhelming, and painfully joyous road. It’s a road filled with such deep lows and such great highs that there are no words to adequately explain it. But I don’t need to explain it to you because you have been there like I have. You’ve seen the monsters in the trees, you’ve felt the wind forcing you backwards, you’ve tripped and stumbled over some of the same roots I have. And like me, you’ve stood back up despite the fact that it would just be easier to lie there on the road and wait for someone to come rescue you. You’ve stood back up, gritted your teeth, and kept walking with no real destination in sight. Thus is a mother’s love. Endless, enduring, always moving forward even in the wake of fear, pain, and doubt.

Having been a very dedicated distance runner for about 9 years, I had loved running for a long time. I knew who I was when I ran, I knew where I was going, I knew what I wanted to do in this life, and I was so sure of the road ahead of me. That all changed when my baby boy was diagnosed about 2 years ago. I was blindsided. Life fell apart around me. Even more so, I fell apart myself. But I kept running, day after day, out of a sense of obligation to my old life and my old self. I was going through the motions until one day I felt a spark of hope. I found power I didn’t know I had and I found the feeling of freedom at last. The road stripped away all of my defenses, all of my pretending, all of my noble intentions of being “strong” and exposed me for the truest person I was underneath. I could run as hard as I wanted, cry until I couldn’t catch my breath, scream in anguish, pray desperately, collapse on the ground in the dirt, and then get back up and do it all some more. The road didn’t judge me. It didn’t matter what was wrong, only that I was there trying to lose myself in the miles. But when all was said and done, I didn’t lose anything at all because in reality I found my new self in those miles. I uncovered the person I am today. I ran into her, almost literally. Kathy for blog post

The freedom offered in running is intoxicating. It is life itself if you just let it in. The wind in your hair, the sound of your footsteps, the sights blurring by, even the pain in your legs can become a trusted companion. When so much of your life is devoted to taking care of a child that is not well, it can be hard to justify doing something for yourself. It can be downright scary too. We spend so much of our life facing the big great unknown, but what if this unknown could bring you to a new place? What if this great big unknown could change your life? How will you ever know if you don’t try? What lies ahead on the open road is vast. I know it’s hard but I encourage you to keep running, keep walking, or get out there and just put one foot in front of the other. We must love and nourish ourselves in order to best love and nourish our children. It’s for us but it’s also for them. Thus is a mother’s love. Endless, enduring, always moving forward even in the wake of fear, pain, and doubt. kathy and Emmett


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The key to courage

I stood in the large open room in church surrounded by women that were once strangers but now friends. I had stopped in real quick just to drop off some food for a friend that couldn’t make it to the MOPS (mothers of preschoolers) meeting. My husband was in the parking lot, waiting for me.

I was exhausted, anxious, afraid, and filled with both dread and excitement. I could practically feel it rolling off of me in waves. What on earth was I doing? I didn’t know. It’s no secret that I live and breathe running. I’ve been a long distance runner for years and I had trained diligently for the last 6 months for this very day. But why? Why attempt to run 100 miles? Maybe I was searching for something. Maybe I was trying to find myself in those miles. Maybe I was trying to get back a feeling I had lost long ago. Maybe it was none of that. Maybe I was just running away. Maybe I couldn’t face it. Maybe I was so afraid of what I couldn’t control, I had to do something just to prove to myself I was still in control. Maybe I just wanted to feel like me again.IMAG0924_BURST012

Just 2 weeks prior to that day, we had scheduled another skull surgery for our 3 year old son Emmett. Heartsick didn’t even begin to cover it. I was torn between breathing a sigh of relief that we could get this over with now and help him and wanting to pack up everything we own and run away with my son to keep him from any more pain and suffering. I looked at my little boy who didn’t understand what was in store for him and it was a dagger to the heart. It filled me with the kind of fearful, anxious pain that makes you abruptly start crying in the middle of everyday mundane tasks without warning.

Here was that task, dropping off food to a group of friends, on my way to try my hand at running 100 miles for the first time ever. I almost wasn’t standing there. I almost decided it was too selfish of me to go ahead and run this race with another impending surgery. But after a lot of careful thought, I decided I had to. For Emmett. For myself. And for everyone that’s ever wanted to give up. I wanted to be the person that didn’t go down without a fight. But I wasn’t sure I could do it. I didn’t know how I was going to run 100 miles. I didn’t know how I was going to hand over my heart and soul to a group of surgeons again. I didn’t know if I was ever going to stop being afraid for him or if I was ever going to be brave enough.

That’s when the MOPS leader, who is a dear friend of mine, began talking. She was reading a devotional about bravery and courage when she stopped to pull out a small, fancy envelope. She handed me the envelope and inside was a key with the word courage on it. I started to cry as I looked around at the faces of these loving, supportive women. They thought I was courageous even when I felt absolutely terrified.  They believed in me even when I didn’t believe in myself. They were rooting for me even in the middle of my own second thoughts. Tears of gratitude continued to stream down my face as they prayed for me before I had to leave.                                                 

I stashed that courage key in my running pack and it traveled with me for all 29 hours and 44 minutes as I completed 100 miles. There were some very dark moments during that race, just as there had been in our life, but I knew I wasn’t alone out there. 3 weeks after race day, I put that courage key in my pocket the morning of Emmett’s surgery, while I ran and walked obsessively outside of the hospital waiting for him to be out safe and sound, until I was holding his hand once again. As I curled up in the hospital bed next to my son amidst a mass of wires and tubes, I knew I had it. I could feel it. One of the greatest gifts I had ever been given was not just a key, but someone that believed in me, someone that believed I could do it, no matter what “it’ was. And whether it was on a running trail at 3 am or in the ICU of a children’s hospital, their belief in me sustained me until I could believe in myself too.


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The only way out is through

I know that sometimes you feel like you are failing at everything. I know you feel the burden upon your shoulders to keep the entire household in some semblance of order as the world spins out of control. I’ve seen you awake at 2am, crying while everyone else is asleep. I’ve seen you pacing the hallways in the hospital praying the same prayer over and over. I’ve seen you stand vigil at a bedside sure that your world would cease to exist if this tiny fragile body went away. I’ve felt the same desperation to trade places with your child or loved one wanting more than anything in this world to spare them the pain. I’ve seen you struggle with your faith and heard you curse God’s name. I’ve seen the pressure surround you from all angles with a world that goes on around you while your life seems to crumble in front of your eyes. I’ve heard you screaming desperate pleas for healing and for peace. I’ve seen you hold the tears back when those around you deliver biting remarks and dismiss the pain that you are in. I’ve seen your body break down, your heart break open, and an endless stream of pain. I have witnessed your undoing on the very deepest level. I understand the pain, anger, and helplessness because I have been undone as well. Sometimes I have wondered, would there ever be a way out?

Just a few months ago, my 3 year old son went in for another skull surgery. We waited and waited anxiously for him to wake up, wondering and worrying about what would happen. It IMAG1705took about 8 hours for him to fully wake up. The first words out of his mouth nearly broke my heart. In a pitifully weak and scratchy voice with a throat that probably still hurt from the breathing tube came the quiet squeak “I got hurt” amongst the steady beeping in the background. Then he started to cry blood red tears, which can be normal for this type of surgery but still unnerving to see. Talk about being undone. I choked back my own sobs as I tried to be as brave as possible for him. And for a minute, in an absolute pained panic, I wanted to take it all back and make a different decision to not have the surgery. My son needed this surgery no doubt about it, three neurosurgeons agreed. The closer it got, the more I both wanted and didn’t want him to have this surgery. I know it was what was best for him and that it was going to help him, it was going to give his brain the protection it needed, and aid him in going farther in this life. But on the other hand, I have watched him suffer so much and so greatly already. I didn’t want to sign him up for any more pain and suffering. I wanted to protect him. I knew this had to happen no matter how badly I wanted to spare him the pain because there was no way to get the end result of this major surgery without going through it first.

I have questioned God time after time during the worst of it, demanding a way out, begging for my son’s health, and wanting so badly to understand this and somehow make sense of it all. The answer was devastating silence because in time I realized, it’s not for me to understand. But I think I understand a little more now than I did before. I can almost see God seeing us suffer. It must hurt Him as it hurts us. He doesn’t want us to have to go through this. He doesn’t want us to be in pain. He wants to protect us. But He also knows what is going to help us and what is going to aid us in going farther in this life even if we don’t understand it. There is no other way for us to get to where He wants us to go without going through this first. The end result is what He wants and there is no way to shortcut it. The only way out is through. So we must keep going and keep trusting, even when it’s hard. I pray that you find the strength and courage you need to go through the storm you are facing regardless of what that storm looks like. God wants to go through this with you until you are out. Trust Him. Keep the end in mind. And go.

Job 29:3 By his light I walked through darkness

 


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You can always go back home

Originally posted at http://www.erinelizabethaustin.com/blog/you-can-always-go-back-home

Ever had that vague feeling of Déjà vu? Like you’ve been here before, done this before, and seen all of this before? Ever stared in the mirror for so long your own reflection didn’t make sense? Ever wonder what has happened to you? To who you used to be? To your entire life? Ever been caught in the swirling vortex of emptiness? The desperation surrounding you like black does a night, the hope that life will ever be better completely out of reach .Ever been so hopeless you wonder what the point is anymore?

I have sat wide eyed clutching my sanity by a very thin thread. I have, at times, let everything good in me be extinguished by the pain I was in. I have been hopeless, desperate, anxious, and so full of fear for what lie ahead I have forgotten how to live. It’s a cycle, a long, hard, exhausting cycle that I’ve been trying to break free of ever since my son was first diagnosed. It ebbs and flows, some days I can conquer the world and other days I am reduced to a pile on the floor. I can go from feeling capable and strong to helplessly out of control. I can feel strong in my faith and feel God’s plan for my family one minute and the next minute rage at a God who could allow my baby boy to suffer so. The struggle is constantly changing me, chipping off more of the old me and exposing more of the true me underneath. It’s a painful process, one that leaves me feeling vulnerable and raw at the end of the day. I was just like everyone else, until suddenly I wasn’t. My son was just like everyone else, until suddenly he wasn’t. I never signed up for this. I never checked the box for optional yet honorable suffering on the release forms when I took my baby home from the hospital. It blindsided me. It came running after me and no matter what I did, I could not escape it. I went down kicking and screaming, fighting this monster I couldn’t see or predict. It didn’t matter what I did, I couldn’t escape it. This was going to be our new life.

There’s a lie being circulated out there about caregivers, about parents of special needs children, and really about anyone that has ever been broken apart in two and had to find a way to carry on. The lie is that God only gives you what you can handle and I don’t believe it for a second. I’ve lived it. I know I had way more than I could handle. I’ve been crushed under a burden I couldn’t move on my own. I have fallen apart and been put back together again, the pieces of my broken heart precariously glued in place, but I can tell you it wasn’t on my own. I didn’t handle it; God did. I couldn’t put myself back together; God did. I couldn’t see light at the end of the tunnel; God knew. I couldn’t love God; God loved me anyhow. When I was at my most broken and hopeless, screaming like a wounded animal, God was there. When I was crawling up the wall, desperate for a way out, God was there. When I was sitting in the hospital, time after time, God was there. God was always there, I just had to be willing to see him. He didn’t want me to do it on my own. He wanted me to trust Him, to rely on Him, and to believe Him. I spent a long time refusing to do just that, sure that God had turned his back on my family. When there was nowhere else to turn, I turned back the way I came, back towards the God that had always been there despite my erratic behavior.

When you are struggling and I mean really, desperately struggling, God can get easily washed out in the pain. There is a wall that goes up in between who you used to be and who you are now and God was on the other side of that wall for me. I’ve been here before I’d think. I’ve done all of this before, and I’ve seen it all before. It was all apart of the process. Up, down, and back again-the never ending cycle of change.

If you are in the middle of that tumultuous cycle, I grieve with you. I know the pain you are in. I pray for peace as you transition into this life that doesn’t make sense. I know God has given you more than you can handle and I won’t tell you everything will be okay, because I don’t know if it really will. I will tell you that whatever happens, there is always God, even when you don’t feel Him, even when you don’t see Him, and even when you desperately want Him to not be there. You can always go back home. You can always turn back around.

2 Corinthians 1:7 And our hope for you is firm, because we know that just as you share in our sufferings, so also you share in our comfort.


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The Pit

Originally posted at http://www.erinelizabethaustin.com/blog/stuck-in-a-pit

The truth is I don’t know what it is like to be sick. I am 30 years old and have been in good health most of my life. I am a distance runner that regularly puts more mileage on their shoes in a week than on their car. I don’t take any medications, I don’t have any specialists, I don’t undergo surgeries or procedures, and I don’t have a medical history. So why am I even talking to you? What on earth can we possibly have in common?

I have been down in the pit, you know the one. Down so deep, I couldn’t be reached, reasoned with, or comforted. The pit is empty and hopeless, full of only fear and uncertainty. There is only lateral movement allowed in the pit, never up and never forward. You are stuck there in this dark limbo until you choose to climb out. When I hit the bottom of that pit, in true Kathy Sebright fashion, I crossed my arms and refused to let anyone help me out. To call me stubborn is a laughable understatement. It is true ten thousand times over. Why shouldn’t I just stay in the pit?

People started to gather at the top of the pit, staring down at me. I heard their voices high above me and saw rope after rope thrown down until it was an overwhelming tangled mess. They wanted to help. I dug my feet in deeper. I saw some give up and walk away, their lifeline they once offered to me now at a pile by my feet. Some came and went at odd times, showing up only so they could see the disaster up close and personal. Still others belittled my pain, spoke of how much worse they had it, talked about me, and condemned me both for my lack of faith or faith in the first place. “Where’s her God now?” they wanted to know. When days turned to weeks and weeks to months, there were only a small group of people left. I saw the concern etched on their tired faces as their tears sometimes fell into the pit. I still refused to grab the rope. God put me here. God can get me out. He knows what to do. Heal my child. Make him better. Take it all away. That was the only way I would be ok again.

I was at war with God, in a hostage situation even, trying to force him to meet my demands or else. I spent months in this stalemate, the refusal to budge, the refusal to see this as anything else but underserved punishment, and blinded by the eyes of a frightened mother. I raged at God. Do something. Anything. Don’t just sit there.

There are no words for what it is like to watch your child suffer. I have searched the depths of my soul for a way to paint this picture to those that have never been in our shoes, but I can only come up with an example. More times than I can count or that I would even like to admit, I have begged God to let me trade places with my 2 year old son, until I am crying and screaming reduced to a pile of a person on the floor. I have begged God to strike me down dead this very minute, in the middle of this prayer, in order to spare my son. I will die right here, right now if he will only heal my little boy’s brain. Take away the malformation, the lesion, the hemorrhage, the pain, the seizures, and the uncertainty. No more surgeries, scans, medications, therapies, or alarms in the middle of the night. Dear God, just take it all away. Sounds desperate, doesn’t it? That’s because it is.

The pit consumes you, engulfs you, and changes you, whether you want it to or not. You can never be the same person again once you climb out and that’s not all bad. The day I grabbed the rope and decided it was time to trust God with my son is the day that everything started to change. It was like turning on a light in the middle of the night. At first it hurt to look at, but then it was brilliant and beautiful and I don’t know how I ever saw anything without the light.

If you are in the pit right now, I want to personally throw a rope down to you. Do not despair. You are not alone. You are not forgotten about. God is still holding that rope down to you, even if others are not. Start climbing. He will not leave you there. Trust him. The rope is full of promises for a better tomorrow, a hopeful future, and peace that passes all understanding but only if you take it. You must surrender control. Throw your arms into the air, grab hold of that rope, and let God pull you up.

Today is an ever fleeting moment, gone before we even realize it has slipped through our fingers. I have learned to trust God with whatever will be of my sweet son Emmett. Thy will be done. Emmett is His first, mine second. It was the only way I could be ok again. You can be too. Keep climbing. Live in the light.

Job 33:28: God has delivered me from going down to the pit and I shall live to enjoy the light of life. (NIV)


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The courage to stop pretending

Originally posted at http://www.mops.org/blog/courage-to-stop-pretending

I could tell you stories of pregnancy and loss, and of holding a tiny lifeless baby in the palm of my hand. I could tell you about the leap of faith it took to try again and the heartbreak of losing yet again. I could tell you about months of bedrest with another baby not expected to live. I could tell you about the first time I called 911 while I watched that baby, my 1 year old son Emmett, unconscious and seizing in his crib. I could tell you about putting on a brave face for my 3 year old son Travis, trying to figure out how best to explain it without terrifying him. I could even tell you about the treadmill run in the hospital for Emmett’s first surgery, while I ran for exactly 7 hours and 26 minutes waiting and praying he was going to be ok. But none of those are quite it.

I think the most courageous thing I have ever done was stop pretending. I was a great pretender. I could smile even though I wanted to fall onto the floor and cry. I could laugh even though I felt hollow and empty inside. I could cite my strong faith while raging against a God that would allow Emmett to suffer so greatly. I could sit calmly in public when just hours before I had been screaming and breaking things up against the wall. The pain emptied my very heart and soul and hung me out to dry. The fear of the future, of the unknown, and of what would happen to Emmett ignited me with a fire so fierce, it threatened to burn me to the ground. The old me was gone, swallowed whole by this wide-eyed insomniac clutching a medical binder as thick as phonebook and pretending to be ok. My old world was gone, replaced by a new one with sterile white walls and words I couldn’t pronounce. This was the life that I pretended to live for much too long. There was no big pivotal moment that spurred me into action. One day I just woke up and said Enough. It has to get better. For me. For them. For all of us. I can’t pretend any more. I sought counseling. I learned to manage my fear and anxiety and let go of what I couldn’t control. I learned it was ok to not be ok and that I didn’t have to pretend for anyone. I learned to stay in the present and eliminate what if questions. Most importantly, I learned to live again, even happily in spite of our circumstances, and that took the most courage of all.