Kathy Sebright

Writer. Speaker. Believer. Runner. Truth Enthusiast.

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The day that everything changed

June 20th. For years, it was just a simple day; my mother in law’s birthday actually. 3 years ago, it became something else entirely just like I had. It became Emmett’s Endurance Event. It became the day that I stared fear in its cold, dark, unforgiving face. It became the day that I got my first glimpse of the amazing community that we are surrounded by – where love and support flooded in so greatly that we were left floating in it. It became the day that I learned I was capable of so much more than I ever gave myself credit for. It became the day that I discovered a passion for ultra-running that would continue to change my life in so many ways. It became the day that we survived, together.
I ran for exactly 7 hours and 26 minutes on a treadmill in the children’s hospital on that incredibly long June day. I ran while they broke apart not just the skull of my sweet baby boy Emmett but while they broke apart my entire heart and soul. I would never be the same again; I just wouldn’t. I didn’t know then that there would be more surgeries. I didn’t understand then that the struggle would continue long after that day and that fear had only shown its face that day. I didn’t realize I’d soon meet fear in person when they scanned Emmett’s brain. I had no idea the road we were about to go down.

For the past two years, I have continued my tradition of running for 7 hours and 26 minutes on the anniversary of that day. But this year, I’m not going to do that. Because at the end of last year, Emmett had two additional skull surgeries that cut my heart open
once again. So I’m not going to run for just the 7 hours and 26 minutes. Instead, I’m going to pay homage to all of it: the hours he’s collected from 5 surgeries so far, the hours spent in the hospital, in Doctor’s offices, and in emergency rooms. The tears of pain and frustration, being poked and prodded at, sleepless nights, undergoing tests, scans, therapies, blood work, and having medication after medication jammed down his throat. I’m going to take it all and use it to run for 100 miles on June 20th.

IMG_2174-2When I think back to the last 3 years, I can tell you it feels a lot like an ultra marathon, like 100 miles of absolutely terrible, overwhelming struggle and triumph. There were times when I felt so alone, completely and utterly alone. Like it was 3 am and I was lacing up my shoes, about to do something that most people can’t even fathom. I stuffed every emotion and pain down as deep as I could, unwilling and unable to find the words to ask for help as I ran through the night on a path that I wasn’t sure would ever end. At times, I was surrounded, completely and utterly surrounded. When I was sure I couldn’t go on, people were pressing in from all sides. Their shoulders pushed up against mine, pulling me forward with them as I shuffled my feet in a daze.

There were times when I was screaming in agony and crying desperate tears that wouldn’t stop. There was misery and unbelievable suffering at points. There was doubt and fear that I was not who people thought I was and that I was not really strong enough to make it. There was the sweet allure of just giving up and questioning why I would ever do this to myself. There were tears of joy from doing what I once thought I couldn’t. There was pride that overflowed from my very being from surviving and digging deep. There was hope that I would get there, somehow, someway, I would do it and we would all be ok. There was love; love beyond words. Love in the face of a man that has seen you at your very worst and loves you anyhow. Love from friends that will show up all hours of the night, whenever you need them and do whatever you need them to. Love from family that will always come through no matter what else is going on.

There was all of it, mashed together into one heartbreaking beautiful cacophony of mess. That’s what watching your child struggle with his health feels like. That’s what running 100 miles feels like. It’s all of those things and more. It’s raw and real. It’s awful and full of hope. It’s pain tinted with joy. It’s who I am and what I do.  Motivational-inspirational-meme

So on June 20th, I will run for 100 miles for Emmett, for me, for our family, and for everyone who has ever been in our shoes. I will continue to tell the world about Craniosynostosis, a birth defect of the skull that inhibits brain growth. I will bang that drum loud and clear in the hopes that more awareness will keep another baby from going undiagnosed as long as Emmett had. It all started with Craniosynostosis, but it’s about the rest of it – the brain lesion and epilepsy too. I do this not to continue to hang onto the darkest moments of our lives, but rather to bring light into them and in the hopes that it might make a small difference to someone else. Because that’s what this 100 miles is really all about. Hope.

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Colored in pink and full of broken hearts

Mother’s Day – colored in pink and full of glittered hearts. A day to honor your mother, yourself as a mother, or those other important women in your life. Kids eagerly holding out handfuls of dandelions and handmade cards. Your mother on the phone telling you how proud she is of you while you both laugh over a shared memory. A loving husband that makes you breakfast in bed and lets you sleep in.

But what about the other women?

The woman that has buried her only child, with not much more to show than a grave to shed tears over, afraid that the world will forget what she never will.

The woman struggling with terrible depression, forcing herself out of bed day after day for her kids and plastering on a fake smile.

The woman whose spouse has died, whose children are in deep in the trenches of grief alongside of her.

The newly divorced woman, scared and alone, hoping and praying she’s done what is best for her and her children.

The woman whose child is hospitalized, sick or dying, who is in such raw pain it hurts to breathe at times.

The woman who comes from an abusive home, who hasn’t spoken to her mother in years, who won’t be sending a card or calling home.

The woman that would give anything to be a mother, that has tried and tried and is afraid there is something wrong with her.

The woman that has just experienced a miscarriage, feeling betrayed by her body with hormones running rampant.

The woman who is suffering in her marriage lonely and heartbroken, who lies to the world while she feels like she is fading into nothingness.

The woman whose mother is no longer on this earth, her very best friend in the world and the one she would give anything to talk to for just a moment.

The woman whose child has died, who will forever be deeply missing part of herself and part of her family.

The woman whose mother neglected, hurt, and abandoned her in a thousand different ways, who is now secretly afraid she’s broken and unlovable.

The woman that is all alone, whose children are estranged from her.

The woman that is sick, fighting for her life, afraid of what will happen to her kids if she doesn’t make it.

The woman battling addiction, dealing with ongoing abuse, constantly fighting with her children, and more.

Mother’s Day – colored in pink and full of broken hearts. It’s not as joyful and carefree as we’d like to believe. It’s not at all what it’s made out to be in those heartwarming ads. There are so many women that don’t feel like they fit into the mold for this day. There are so many women that are hurting on this day and subsequently by this day.

So I want to ask you, or implore you, to reach out to one of these women. These mothers with the broken hearts. We all know at least one. They are you. They are me. They are our neighbors, friends, family, and acquaintances. They are hurting. They are scared. They feel alone. They don’t know how they are going to make it through another day. They are doubting themselves. They are fighting their way through this day and through this life.  Einstein-Quotes-5-610x610

What can you do? You don’t need eloquent words or long, thought provoking speeches. You don’t need anything more than a sincere acknowledgment and recognition of how hard a day like this may be for them. A reminder that even when they feel alone, they are not alone. Just a few words of encouragement to keep going. A way to show them they are not forgotten. A simple act of love. That is how you honor these hurting mothers.


The brutal amazement that is 100 miles

2015-02-20 13.57.54-4If I had to find just one sentence to describe the process of running for nearly 24 hours, it would be this: the sum of all things. It was all of my emotions, fears, and failures. It was all of my progress, triumphs, and the whole of my life. There was that ugly voice in the back of my mind so sure I would fail and should just quit and be done with it. That voice told me over and over, that there was no way I would ever be able to do this because it’s just too fast for way too long. There was a quieter but more powerful voice too. A voice that was so sure I could do this, that I could do absolutely anything if I really wanted it badly enough. That voice reminded me over and over that I’m a fighter, not a quitter because I’ve already done more in my life than I ever felt capable of.

Round and round the 200M track I went. That’s 8 laps to a mile. Which means 800 laps total to hit 100 miles. Every 1 minute and 30 seconds, I passed my temporary home: my husband, my lawn chair, and my storage tote of running gear. And it got harder and harder to pass up all the comforts of home just waiting for me each and every time. There were a few times, I cried as I passed my lawn chair it was so devastating.

2015-02-21 08.16.09-6What saved me was “my people.” One person I can always count on no matter what, is my husband Tony. Propped up in a corner, tallying up my laps one after another, running with me here and there, and waiting on me hand and foot: he is the ultimate crew person. But even so, there were a few hours when I was really floundering alone. I slowed down, I struggled, I got discouraged, and I started to sink on my own in the middle of the night. But then God sent help, in the form of my friends and family. A group of friends showed up Friday night when I was already starting to hit a rough patch. A group of non-running friends that is. And they proceeded to not only run but run FAST with me. A few hours after they left, someone else showed up. They came at 1am to get me through the long, dark hours of the night. A group came at 5am decked out in feather boas, princess crowns, and sunglasses carrying inspirational signs. A couple of awesome coach friends showed up and gave me a massage, and helped me fix my terrible running form that I had descended into. A complete and utter Godsend came sometime early Saturday morning. She made it her personal mission to see me to the finish. Made me eat when I felt too sick to eat, filled up my water bottle probably 50 times, fixed my shoes over and over, stood outside the bathroom stall waiting for me like a loving mother would with her child, just in case, watched me like a hawk commanding “eyes open” every time they threatened to close, and kept an eye on our pace, always pushing me to make sure I really was going to make it. When Saturday morning rolled around, my cheering section tripled. The same friends that had shown up late the night before, the same ones that must be exhausted and tired and sore, there they were again.

The final hour took every last bit of will power I had. All I knew is I was “close” to 100 miles but I didn’t know how close. Shortly after hitting 50 miles, I decided I didn’t want to know anymore. It was tormenting me to know how much farther I had to go, so everyone started keeping it a secret.2015-02-22 14.39.53 I was really struggling near the end when I saw some women on the track walking towards me. I couldn’t understand why until they got closer, and I saw 4 of my friends in matching Team Kathy shirts. The back proudly proclaimed it was a division of Team Emmett. Hysterical sobbing ensued as they hugged me until I was making that loud, embarrassing noise from trying to breathe. There were so many times I had felt alone in my life before. So many times where it seemed like I had no one. And this was just the opposite of that, times 100. I couldn’t remember the last time I felt more loved. I was sure my heart was going to burst. It was simply amazing. It was complete when my mother and father in law showed up with our boys and all I could manage was to smile at them through my heavy tears. 2015-02-22 14.40.10

Finally, after being told how close I was and getting angry, whiny, desperate, hysterical, crying, and stopping in defeat for a few seconds, my husband Tony told me I was on my last lap. A friend was singing “our song.” I was surrounded on all sides by even more friends that escorted me one last time around that track. They were cheering, yelling, and clapping. Emmett ran just ahead of me as I rounded the very last corner and threw my head back in instant relief at being able to stop running. And I did it. 100 miles in 23 hours and 50 minutes. Under 24 hours, with only a few minutes to spare.

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When I think back to the Hallucination 100 I did last year and how much I cried, I think I may have cried almost as much this time. But this time most of those tears were of gratitude, appreciation, amazement, and pure love. There were some desperate tears in there too, but they were few and far in between comparatively. All of these wonderful people that showed up to support me– they are the ones that pushed me to run faster. They are the ones that kept me going even when I was feeling miserable and wanted to stop. Their mere presence made me both laugh and cry and renewed my fragile spirit. I owe the bulk of my miles to them, and them alone.

I just LOVE this message (and everything else out there) from Fellow Flowers. It’s something I have been privileged enough to live out.

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I have a blog (obviously!)

Alright, fine. I’m a little late to the party. Or a lot late. Whatever. I’m here anyhow.

After much persistent nagging, ahem, I mean loving encouragement, by a few friends, I have decided on a blog. Some of it that I’ve already posted before this is reruns, things that you may have already read through various other sources. Some of it is new, unpublished stuff that was never “good enough” to make the cut. Lucky for you, or perhaps unlucky, now I don’t have to wait for someone to deem what I have to say worthy of being shared. So look forward to an influx of random drabble.

It’s a strange mixture of topics, just like our life. It’s running – lots and lots of running. It’s diagnoses, surgeries, hospital trips, and the every day pain of seeing my child suffer. It’s finding God and trying to trust this crazy road we are traveling down. It’s the people that have come along side us and lifted us up when we were falling. It’s everything and anything and nothing at the same time. Lastly, it’s accountabilityIMG_247578087214705 and a place to clear out the cobwebs as I attempt (and succeed, God willing) at finishing up my first book this year.

And that’s all I have for you for now.  So look around if you feel so inclined and let me know what you think.

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The journey of 100 miles

Originally posted at http://53riverbankrun.com/blog/roadwarriors/2014/09/02/the-journey-of-100-miles/

The journey of 100 miles begins with a single step, but more specifically it begins this Friday at 4pm! After nearly half a year, it all comes down to this.  The course limit is 30 hours so obviously that is my goal, but really my bottom line goal is just to get out there and do everything in my power to reach that 100, no matter how long it takes. There are certain things in life that you just know are going to hurt you, change you, and promote growth in you. Running 100 miles for the first time ever is one of those things. It’s going to be hard – really, really, really hard but it certainly won’t be the hardest thing I’ve ever done.

I have this small polished silver stone that has the word believe deeply etched on it. If you run your hand across it, you can feel the outlines and grooves of the word itself. I’ve clutched that stone numerous times in my life. I’ve turned that stone over and over in my hand as I watched my little boy being wheeled away from me in a hospital bed not knowing if they’d ever wheel him back to me.  I’ve felt the weight of that stone in my pocket as I  fought back tears and pinned down my scared, wild-eyed and thrashing 2 year old son to put in yet another IV.  The stone was on the counter the day I held my son’s MRI in my trembling hands. That one thought from the rock “believe” was on my mind time after time while I watched my son unconscious and seizing wildly on the floor in front of me. Believe that he will be ok somehow or someday and if he’s not, believe that I will be ok with that somehow or someday. That’s all we can do is believe.

So what on earth does any of that have to do with running 100 miles? Nothing really. And kind of everything. For me, the two are linked. They are undeniably, inextricably tied together, running and my son’s life. Running is not only the way I heal myself but somehow the way I heal my son. I absorb the power in these miles. It transforms me and helps me project that hope onto him. And as we are facing another skull surgery for our son this month, I need that power and I need that healing. 100 miles is so much more than just another race, it’s our life. It symbolizes the long, treacherous road we’ve been on with the most desperate of lows and the most joyous of highs. Just like the race, we don’t know what’s going to happen, how it’s going to play out, or how much suffering there will be – we only know to keep going, forging ahead to that finish line, and believe that it will all be ok, somehow or someday. IMG_2151

September is Craniofacial Awareness Month. Just one of my son’s major health issues is that he was born with a birth defect of the skull called Craniosynostosis, but no one knew. He went undiagnosed the entire first year of his life. His official diagnosis came from his surgeons at 14 months old. Craniosynostosis inhibits brain growth and can cause intracranial pressure, seizures, eye problems, developmental delays, and more if left uncorrected. Symptoms to look for include an unusual shaped head, a hard, raised ridge along the affected suture, and a soft spot that closed too early. If this could be your child or a child of someone you know, I encourage you to speak to your Doctor. Knowledge is power and we need more power! And with that short public service announcement, I leave you. Look forward to one wicked race report coming soon!

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The power of one

You hear it a lot. What’s the point? I’m only one person. What could I possibly do to change anything? The answer: absolutely anything! Does that surprise you?

holding_500One of the most powerful interactions of my life happened a little over a year ago, at the hands of one random stranger. I had escaped to Target for a few minutes to clear my head while my youngest son Emmett was in the hospital with my husband to keep him company. I was wandering aimlessly when I ran into a couple of old coworkers. As I filled them in on the newest details of my life and how my son was doing, a sob escaped against my will. I was embarrassed: basking in the fluorescent lighting and surrounded by party supplies, this was NOT the place to have a breakdown. I tried to hold it together but before I knew it, I was crying steadily, awkwardly, with barely comprehendible words coming out in between sobs. And then she appeared out of nowhere: a woman I had never seen before in my life and she was tightly hugging me and whispering calming words in my ear. She was telling me about her son, about his life, offering prayer, comfort, hope, and matching my own tears with her own. A complete stranger, just one woman, crying with me in the middle of Target for my son, a child she had never even met. The compassion and love poured out of her with such ferocity that I may have not believed it if I hadn’t been there myself. I think about her from time and time and she continues to inspire me to want to live my life the same way I imagine she must.

Last Saturday, I was running and chatting with a random woman at RunGR. In our ramblings about training, I mentioned the fact that I am a Road Warrior for the Fifth Third River Bank Run. My new running partner gasped and said “I know exactly what that is!” It turns out she was passed by an (unknown) Road Warrior at the Resolution Run this year. She didn’t even know exactly what a “Road Warrior” was but saw it boldly printed on the flashy yellow jacket. She couldn’t believe the ease in which she was passed and it made her want to kick up her training. She went home and looked up the Road Warriors, saw that we trained with RunGR, and went and signed up for RunGR herself! She’s been going ever since, loving it, training hard, and going in a completely new direction. All because she was inspired to do something more. i-am-only-one-helen-keller

What do these two stories have to do with each other? Everything. No, it’s not the same woman. It’s the power of one. Just one person. Whether it is a deliberate act of compassion like the woman in Target or you never even know it happened, like the woman from RunGR, one person can have a tremendous impact on the world around them with simple, small acts. When I filled out my Road Warrior application, I actually wrote that I wanted to change the world. It seems lofty and maybe a little arrogant, but that doesn’t make it any less true. One person at a time, slowly but surely, I have to do something. You better believe people are watching you and your behavior as well, whether you realize it or not. Are you leading by example to your friends, family, coworkers? Do you want to do something more? You have a choice. That person that just dropped their entire bag of groceries in the parking lot, that person in line in front of you digging desperately for just one more dollar to buy their food, that runner walking alongside of the course crying, that kid that everyone else is making fun of – you have the chance to not just witness it but intervene. The power of one is strong because together we are a lot of ones and that absolutely has the potential to change lives.

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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 things we gain by losing

I stood in the entryway of the restaurant. I was late. The 3 of them were already sitting down somewhere. Together. It felt silly to be so nervous but yet I was. My heart pounded as I considered slipping back out the door and just calling them to tell them I was too sick to join them.

I was never really good at friends. For so many years, I had been a keep to myself, closed off, scoff at feelings kind of anti-girl. The last friends I had were the women that broke my heart into a thousand pieces. Mostly I was angry at myself, for giving them the power to hurt me this way. I had let my guard down, loved them, cared for them, and this is what happened. I didn’t realize back then it was the catalyst for my behavior that followed. I stopped trusting the women around me and started backing farther and farther away from everyone else. I didn’t ever want to feel like that again and soon I decided I was better off without any friends. And so I became an island. Unreachable and alone. IMAG0705_BURST012

8 years later, there I was, on the verge of either walking in or running out of that restaurant. That’s when the hostess asked if she could help me. “I’m meeting some people” I said unsure if I actually was. “Oh, are you Kathy?” she asked. I nodded my head silently. “Your friends are expecting you. I’ll show you where they are.” Tears welled up in my eyes as I realized the small but significant gesture. They were expecting me. Waiting for me. Even told someone to watch for me. Already, I was more than just an outsider to these women I didn’t know very well.

DSCF2756They showed me what mutual friendship really was. They became amazing friends with such love, respect, and empathy for those around them that the deep, tall, and wide walls I had built up slowly began to come down. The gratitude I have for these women defies words. They have seen me at the very worst I had to offer, when I was in so much pain I couldn’t even bring myself to admit it. And still they were there, in the ICU, on the other end of a phone, running alongside of me early in the morning, at my door with food, and always, always, always laughing and crying along with me. They stood by our family through some of the most difficult years we had ever seen and made me laugh when I thought it was impossible. When they each moved away at different times for different reasons, we cried until we laughed. But distance could not affect these friendships. They were stronger than that.

A few years after they all had moved away, I was brave enough to make more friends on my own.  They were the spark that made me notice what my life was missing: close girlfriends. Again, I was lucky enough to find such loving, caring, compassionate women that immediately accepted me. As the rough years raged on, they jumped head first into the chaos that is our life without a second thought. And there they were. In the waiting room of a hospital, at my door with more and more food, clutching my hand tightly, making room for me in their lives, and always, always, always laughing and crying along with me. One day, it was just like they’d been there all along.IMAG1855

I don’t know that I’d ever had as much to give as I’ve been given. I don’t know that I’ve ever deserved the amazing people that have surrounded me. And I don’t know that I’ll ever be able to “pay them back” for all they’ve done. It’s too much. They’ve helped save me from myself and they’ve held me up when I was falling into the darkness. But today, I can say my group of friends, both near and far, are some of the most thoughtful, giving, and beautiful people I’ve ever met in my entire life. So what exactly was gained? Everything. Absolutely everything.

~ When you are drowning, a true friend will not just throw you a lifeline but rather jump in headfirst and swim the raging waters with you. And you will be rescued together. ~

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The Sliver of Hope

Originally posted at http://www.erinelizabethaustin.com/blog/a-sliver-of-hope

I just don’t feel like going, that’s why,” I snapped angrily.  My husband raised his eyebrows and then silently walked away. I sighed out loud.

Really, what was he thinking? Just because it was Christmas didn’t mean we had something to celebrate. Our life was far from a cause for celebration: a sick child, bills we could no longer pay, and a marriage buckling under the stress of this life.  I was exhausted. Hospitals, specialists, medications, more and more testing were all piling on top of work, kids, and a household to take care of. Life wasn’t supposed to turn out this way. This is not what we had in mind when we welcomed our child into this world. We were going to live happily ever after.  Now I would be content in just feeling like we were living. More often than not, we are barely surviving.

I watched my husband load the kids into the car and drive away. Another Christmas party, another chance for fake holiday cheer. No thanks. I looked at the nativity set on the coffee table and a pang of guilt hit my heart. I know why we celebrated Christmas. I was not without faith. I did believe in God, but surely He had abandoned our family long ago and left us high and dry.

What was the purpose for our suffering? What is the purpose in watching our son suffer? Where was God when they handed down that first diagnosis, just one of many? Did God see my soul crumble and the very life drain out of me when they told us this could kill our little boy? Did He see the bills piling up? What about our shaky marriage? At a time when we needed each other the most, everything fell apart. Was God watching all of that too? No amount of prayer made any difference, our lives kept spiraling out of control.  Nope, God didn’t live here and I, for one, would not be celebrating.

The house was dark and quiet. So quiet, I could hear the snow falling. The lights on the outside of the house shone in from the thin curtains. I tried to enjoy the unusual quiet, but I couldn’t. I turned on the radio for background noise; it was pre-set to the local Christian station. Our life weighed heavily on my mind. The events from this last year blurred together. It was the worst year our family had ever seen; a year that dragged us deep into the trenches and then left us there to rot.

I slowly drifted off to sleep.  I must have been dreaming because I abruptly saw myself in church, sitting alone in a large auditorium. I made up the entire congregation; there was no one else. The room was eerily lit by candlelight.  I sat and waited purposefully, but for what, I wasn’t sure. Suddenly the room changed. A faint whisper filled the room. “God did not abandon you my child.” A surge of anger coursed through my veins as I tried to object. “God understands your suffering my child.” “No He doesn’t,” I wanted to yell, but my voice wouldn’t work. “God has been with you all along my child.” How? When? Where? A million questions I wanted to ask, a million ways to disprove it that I couldn’t vocalize. “You are not alone my child.” My anger died down and gave way to a pain so raw I couldn’t speak as tears threatened to fall. “Do not be afraid my child.” I smiled bitterly; I was frozen in fear – fear of the future, that there may not be a future for our son, or that we were missing something that could make a difference in our son’s life. So just where was God? Where was the God who sees, hears, and knows everything? Why wasn’t He seeing and hearing me? “God was listening my child. He was right there all along; the same place He was when His son suffered, when His son died for you.” A lump formed in my throat. Full of foolishness and pride, I had no rebuttal, no way to ration my way out. I was unable to speak once again. “God has great plans for you my child and great plans for your child; have hope.”  The words cut straight through to my dark, angry heart. Tears I had been holding back not just in this strange moment but for months now, spilled over as I felt a sliver of hope make its way in.

A car door slammed and jolted me awake. What was that? A dream? God himself? Bits and pieces of the radio talk program I overheard while half-asleep? Did it really even matter? I understood now. My husband and the kids came bounding in. My tear stained face seemed to startle my husband. He held out his hand and I took it as more tears fell. There was hope in my heart, however small, but it was there. Hope for our marriage, for our family, for our son, and for better days ahead. Most importantly, I let in the possibility that there is a purpose in our pain and we are becoming great witnesses of God’s faith and love. It was Christmas. We did have something to celebrate, many things actually, starting with our family. We don’t know what the future will bring, but we know that God is with us, even when we don’t feel it. We know that there is a purpose in what is happening. We know there is always a reason to hope.

May your Christmas be filled with hope, love, and joy, even amongst the suffering