Craniosynostosis | Kathy Sebright

September 2, 2015
by Kathy Sebright 4 Comments

September is Craniofacial Awareness/Acceptance Month and here’s why it should matter to you

Maybe it won’t be your baby. Maybe it will be your neighbor’s new baby, a cousin’s baby, the baby of the checkout girl at your local supermarket, or the baby of that nice couple at church. Rest assured it will be somebody’s baby because the statistics don’t lie. 1 in 2,500 babies will be born with Craniosynostosis. I know. I know. Craniosynostosis sounds like a really long, boring, and clinical word. I have to move quickly here now because I know once I start in with the medical jargon; many people tend to lose interest.

Here’s what I want you to imagine: it’s your baby. If you don’t have a baby, then it’s a baby you love such as a niece, nephew, or a friend’s child. First they are going to push your baby, your very heart and soul, away from you in a hospital crib down a long white hallway. They are going to cut open your baby’s delicate, soft, sweet smelling head from ear to ear with a zigzag incision. They are going to peel your baby’s face off all the way down to their cheekbones. I’m going to pause here for a moment to let that sink in. Honestly. Your baby’s face. They are going to saw and cut into your baby’s skull so they can break it apart. They are going to remove pieces of your baby’s skull as if it were a jigsaw puzzle. They are going to take extra care around your baby’s brain that lies underneath. They are going to mold your baby’s bones into what they want them to be so that they may function and grow the way they are supposed to. They are going to put the pieces of your baby’s skull back together with an insane amount of screws and plates. They are going to put your baby’s face back on. Lastly, they are going to sew everything back together on your baby’s battered, bruised, and bleeding head. They are going to push your very heart and soul back towards you in a hospital crib down a long white hallway and into an ICU for days. You won’t be able to breathe the first time you look at your baby after surgery. It will be like a punch straight to the stomach leaving you gasping for air and void of all words.

Just days after my youngest son Emmett’s first birthday, he began having seizures and wildly convulsing at random times. In those long days and weeks of ambulance rides, emergency rooms, and multiple tests, no one could tell us what was wrong with our baby. A naturally impatient person, I could tell my son was suffering so I obsessively turned to Google for answers. I spent hours poring over websites, looking up words I didn’t understand, and reading things that went way above my knowledge base until I found it. I diagnosed my son with Craniosynostosis with Google’s help. A Pediatrician, a Family Doctor, a Neurologist, and 2 Emergency Room Doctors could not help us but Google could. I don’t think we had bad Doctors, just Doctors that had never heard of this birth defect through no fault of their own. Sadly, this is not an uncommon story. Even though this is a relatively common birth defect, there are scores of medical professionals that have never even heard of it. It took over 14 months for my son to be diagnosed with the birth defect that he had been born with.

My son was 15 months old when he had his first surgery. It took exactly 7 hours and 26 minutes. I ran while he was in surgery, suspended in a restless state of both drive and despair. I was just as broken as his skull that drained a sickening thick, red blood day and night. No matter how often I wiped up the pools of blood at the base of his neck, they kept reappearing. His eyes were swollen shut for 8 straight days. Sometimes when I close my eyes, I can still hear him screaming in terror and see him holding his head tightly in his blood stained hands. He’s had 5 surgeries so far in his short life, all related to Craniosynostosis but only 3 of them were on his head and skull. Some of the additional surgeries might have been avoided all together if he had only been diagnosed early enough. If only…

While Craniosynostosis is only one diagnosis covered under the blanket for Craniofacial Awareness/Acceptance, it is the one I chose to focus on because it has impacted our lives so greatly. So what exactly is it? Craniosynostosis is a birth defect of the skull. It occurs when one of the sutures in a baby’s head closes too early and changes the way the skull begins to grow, thus inhibiting brain growth in the process. The only cure for Craniosynostosis is surgery, the optimal age for it being between 6 and 12 months. There is a less invasive surgery available in some cases, but many babies face this same very extensive surgery as their only hope. Symptoms of Craniosynostosis in an infant include an unusual shaped head, a hard, raised ridge along the affected suture, and a soft spot that closed too early. Craniosynostosis can inhibit brain growth and can cause intracranial pressure, seizures, eye problems, developmental delays, and more if left uncorrected.

After all of this, you may wonder why it should matter to you. Here is where I must call out to you with a mother’s heartfelt plea. It has to matter. It just has to. It has to matter to our trained and trusted medical staff so that they can learn more about it, how to recognize it and how to treat it in a timely manner. It can’t go the way it went for us anymore. It has to matter to other families so that we can teach our children not to point and stare at someone that looks different, but to offer a warm and accepting smile. These kids have lived a life most adults can’t even comprehend; we needn’t make their lives harder with harsh words and exclusion. It has to matter to the other parents out there so that they could identify it in their child or another child if need be, in case they were to fall between the cracks as we did.

When all is said and done, all I can do is try to get the word out, to facilitate even the smallest of change with the hope that even a small drop in the ocean of awareness will be enough to make a difference for someone else. I leave that hope in your hands.

July 9, 2015
by Kathy Sebright 7 Comments

Out of the darkness – 100 miles for Emmett

On June 20^th, almost 3 weeks ago, I ran 100 miles for “Emmett’s Endurance Event.” And then I went on vacation and then it was the Fourth of July and then I realized I never wrote about it. And as we all know, inside the mind of a writer (if I can be so bold as to call myself that these days) it’s almost as if it didn’t happen if I don’t recreate it with words. So if you are so inclined to read about my latest running adventure, for my son Emmett, and the deep dark ugly parts and the parts where I beamed with pride, read on.

I woke up on Friday, June 19^th at 5:15. I didn’t have to be up until 6am, but I couldn’t sleep. I drug myself out of bed and started my pre run routine. When I got to the pile of clothes that I would start out this run with, I was transported. I stared at the white shirt with pink letters with a kind of disgusted fascination. I had bought it special for that day 3 years ago. And 3 years ago, when I stared at this same exact shirt that proudly proclaimed me as unstoppable, I felt like a fraud. I didn’t feel unstoppable, I felt afraid and nauseous and like running away. But that was then and this is now. As I put the shirt on, I knew I had grown into it. I truly believed what it said. And I say that not with arrogance or conceitedness or to pat myself on the back, but to remind myself. I am unstoppable. I have seen worse. I can do this. I can survive anything. I cannot be stopped. I will keep going. Somehow. Someway. I will. And with that in mind, I finished getting ready and took off running full of determination.

When attempting to run 100 miles, time ceases to exist. It’s just me and my legs fighting against my mind. As far as running goes, the first 10 hours were pretty uneventful. Friends came to keep me company and decorated my home base camp with all kinds of signs. I wandered around in the huge campground for a few hours, before deciding on a 5 mile route so as to never be too far away from my people and so I could be easily found.

I ran and I ran and I ran. It got hot and I ran. Things hurt and I ran. I got really tired and I ran. I got cranky and I ran. I got discouraged and I ran. I got blisters and I ran. I wanted to stop running and I ran. I just kept going. That’s how you run 100 miles. There is no secret. You just keep going. You shut off everything else and just keep going. If my previous races had taught me anything, it was that once I started crying, I wouldn’t be able to stop. The dam would break and I would never be far from dissolving into hysterics at a moment’s notice. So I worked hard to keep myself together, to not lose it. I focused on my mind, shutting down all the cant’s and negative thoughts threatening to spill over. I held it together, willed the emotions back in until I was ready for them. I told myself things I wasn’t sure I really believed, but forced myself to adhere to them.

I hit 50 miles in a bit over 12 hours. More friends showed up and ran with me and they occupied my mind, kept the impending doom from setting in, and gave me a welcomed and happy distraction. Round and round the 5 mile loop different people went with me. A group of friends sat around a campfire all night long, taking shifts running with me. I was never alone. These are my people. They don’t need to say it because they are there. They show it.

Highlights of the night include hysterical laughter with friends, high fives from groups of kids on golf carts, being scared of a bug zapper, and blinding everyone around me with my super-powered headlamp. Somewhere around 3 am, it took a turn for the worse. I was sitting on a fence, 80 miles under my belt, feeling sick to my stomach and fighting back the tears with every fiber of my being. Tony was standing next to me, urging me onwards and upwards. But under the cloak of night, my resolve wavered and I couldn’t help but cry. It was too long. It was too far. I was too tired. It was too dark. It was going to be dark forever. I didn’t want to do it anymore. I couldn’t do it anymore. I don’t remember what exactly my husband said, nor does he as we were both sleep deprived, but it was tough love. A get up and get your butt going right now because you don’t get to stop here, kind of sentiment. Whatever it was, it pushed me to stand back up on feet that felt like they were on fire. The pain blocked out everything else. All I could feel in each step was how much it hurt. Nothing else registered, just the burning pain in my feet. A very long and very dark night ensued. A darkness so encompassing, I didn’t think I would ever see the light again. I was convinced this was it. When dawn finally broke, I felt hope. The sun rose again and it with it came my spirit. I could breathe easier in the daylight. I was not doomed to run in the darkness for the rest of my life. I had run out of the darkness, both literally and figuratively.

Now that it was actually June 20^th, the day of Emmett’s first surgery, I allowed my mind to go back. I saw myself on that treadmill, tears streaming down my face silently, my teeth gritted in sheer effort, and a crushing despair that filled me as I waited for that blasted hospital pager to ring. Waited to hear that my baby boy had lived. Waited to hear that I could stop running. Waited to hear that everything was going to be ok. I waited and I ran, a terrified mother trying to convince herself how brave she was. I could still feel it as I ran 3 years later. Sometimes I am still that mother, trying to convince myself I am actually brave when I feel anything but. But still, as my home base came into sight, 100 miles within my grasp, I felt the brave rise up. I did not cry. I smiled and sighed with intense relief as I crossed my finish line holding Emmett’s hand. I was victorious. I really felt unstoppable. In previous races, I felt like I had merely survived 100 miles. It was a brutal assault to my body and senses. This time, I felt like I did more than just survive, I thrived. I remembered the reason I was doing this. I used it to power through what I thought I couldn’t. I finished and I smiled. After running for 27 hours and 38 minutes, I really did run out of that darkness.

We told a handful of people about Craniosynostosis in person. I told even more online. I ran to honor Emmett’s journey. And I did. I ran to remind myself I can. And I did. I ran to make a difference. And maybe I did or maybe I didn’t. But what I do know is that I have done something and that is better than nothing. And you all have made a difference to me. Every text, call, comment, and email. Everyone that shared about Emmett, helped me tell the world what Craniosynostosis is and why it matters. Everyone that has stood by me or stepped in when I needed it the most. Everyone that has cheered me on from near or far. You are my people. You don’t need to say it. You show it. Thank you from the bottom of my heart. Thank you.

June 16, 2015
by Kathy Sebright 3 Comments

Emmett’s Endurance Event 2015

We are just 3 days away from running 100 miles in the hot, muggy haze of June.

And people have asked me – “what can I do to help?” If you are one of those people, I have an answer. It’s simple. Join me. Run with me. Walk with me. Bike with me. Tell someone about Craniosynostosis for me. Wherever you are. Whatever you are doing. Join me in spirit this Friday, June 19th or Saturday, June 20th. You can even wear the official race bib if you are so inclined. Don’t worry that it says 100 miles. Your miles are a part of mine and every bit as important! That’s because together we are stronger. So if you want to help. Join me.

Click here for the bib: June 20 Race bib

June 11, 2015
by Kathy Sebright 5 Comments

Why on earth are you running 100 miles?

Here’s the thing – I never wanted to do anything like this, originally. I never planned on being the voice behind a cause. I had no drive or desire for anyone to ever think or say I was inspirational. In fact, despite the noble words that people have used for me, I have not ever felt inspirational in my life and I’m completely ok with that. I never needed my name to be known in local circles either. The only thing I wanted was for my son, Emmett, to be ok. I wanted to protect him more than anything in this entire world and I couldn’t. And so the only way I could survive that was to run. It was the only way I could be ok. That’s what started all of this.

Let’s rewind to 3 years ago: June 20, 2012. I was on the 10^th floor of the children’s hospital running on a treadmill while a team of surgeons cut apart my 15 month old baby’s entire skull a few floors below me. My son Emmett was born with a birth defect of the skull called Craniosynostosis. Craniosynostosis causes the sutures in the skull to close prematurely so that the skull can not grow as it should, thus inhibiting brain growth. I vowed to run the entire time he was in surgery, no matter how long it took. I would not stop. I would not rest. I would not do anything but run until I knew he was going to be ok. I ran for exactly 7 hours and 26 minutes that day, calling it “Emmett’s Endurance Event” and raising awareness of Craniosynostosis in the process. It lit a fire under me. I had to do it again and so I ran for the 7 hours and 26 minutes on the anniversary of June 20^th for the last two years. This year, I wanted to do something different.

Emmett had gone undiagnosed for the first 14 months of his life. At birth, his pediatrician had told us he was just fine when we questioned his head shape. In the coming months, we would ask our Doctor about it as well and be reassured more than once that it was completely normal and nothing to worry about. After his first birthday, Emmett began having seizures. Two different times, at two different hospitals, the emergency room discharged us telling us that there was nothing wrong with our son after the seizures. We fell through the cracks unnoticed and so I took matters into my own hands. I knew something was wrong, call it mother’s intuition or God or a gut feeling. I knew. I turned obsessively to Google for answers, searching for hours and hours, multiple days in a row, going without working, eating, and barely sleeping. After many days of this manic behavior, I diagnosed my son myself. Because of the late diagnosis and severity of Emmett’s case, things didn’t go as planned after the first surgery. Emmett has other medical issues and there’s no way to know what could have been prevented if the Craniosynostosis was corrected sooner.

There wasn’t just one surgery. There have been five surgeries so far, three related to the Craniosynostosis. Multiple times, surgeons have sliced my child’s head open ear to ear. They have peeled his entire face back all the way down to his cheekbones more than once. They have completely cut apart the bones in his skull. They have put in numerous plates and surgical screws. They have filled in holes of missing skull and patched it back up. They have cut off excess bone that was healing incorrectly and growing in the wrong direction. They have drained pockets of fluid of and blood that wasn’t supposed to be there and looked for infection. I have seen my child’s eyes swell completely shut for 8 straight days after surgery. I have soaked up pools of blood at the base of my child’s head more times than I can count. I have watched as my child became traumatized: kicking, screaming, and crying, eyes wide with fear as the nurses approach him. I have pinned him down myself to help. I’ve spent hours trying to force him to swallow all of his medications. I’ve sent him off for tests and scans over and over. I’ve seen him unconscious and seizing on the floor in front of me. I’ve seen him cry tears of blood after surgery. I’ve rocked him in my arms crying right along with him, my heart broken and my shirt stained red. I’ve begged for relief. I’ve offered up myself to God as a sacrifice if only he would heal my son. I’ve fallen apart. I’ve shattered into a thousand pieces. But I’ve stood back up and faced it. I’ve refused to sink. And still the only way I could survive that was to run.

That is why I will run for 100 miles starting on June 19 and finishing on June 20, 2015. It’s 100 miles for Emmett, to pay homage to all of his pain and suffering over the last 3 years. It’s 100 miles for myself, to acknowledge that I have survived and done the best I could. It’s 100 miles for all the families that have been affected by Craniosynostosis, to show them they are not alone. It’s 100 miles to raise awareness of Craniosynostosis, to tell the rest of the world what this is so that they can recognize it and maybe help another family some day.

Symptoms of Craniosynostosis in an infant 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. Craniosynostosis inhibits brain growth and can cause intracranial pressure, seizures, eye problems, developmental delays, and more if left uncorrected.

May 26, 2015
by Kathy Sebright Leave a comment

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.

When 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.

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.

January 13, 2015
by Kathy Sebright Leave a comment

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 10^th 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.

Even 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

Kathy Sebright

Writer. Speaker. Believer. Runner. Truth Enthusiast.

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