Kathy Sebright

Writer. Speaker. Believer. Runner. Truth Enthusiast.

Category Archives: Medical drama


by 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.

293121_3005087664604_1543276242_nHere’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.

IMAG0312Just 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.

IMAG0418My 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…

imgsvr.ashx2 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.

945865_418390074926464_583492023_nAfter 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.

IMG_2174-2When 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.


by 4 Comments

The lies we tell ourselves

I used to think I knew what strength was. I even used to naively and perhaps arrogantly believe I was strong. I saw the road ahead of me so clearly, how my life would go, what would be next, and what I wanted to do. And then life laughed in my face. Life picked me up with its raging winds and dropped me in the middle of a strange and scary place. Like Dorothy, I was no longer in Kansas. I stood in this brand new place with the eyes of a frightened child. I didn’t know where I was, what I should do, or even where I should go next.

One day, I thought my little boy was healthy. The next day, I found out I had been wrong all along. All of my preconceived notions of strength fell to the floor along with a trail of my tears. I found myself crying and laughing at the same time in a neurosurgeon’s office, overwhelmed by all of these things I felt I needed to know but didn’t really want to know at all. I went through every emotion I never even knew I had. I was angry, filled with a white, hot rage that burned on the inside. I was terrified, frozen in place by fear at times. I was crushed, a hopeless despair that accompanied crying so hard I felt sick. I was all of these things and even more. Not once, did I feel strong. I looked at myself in the mirror and only saw a stranger staring back at me.

People were so sure I was going to stop “all that running” now that my child had this life changing diagnosis and an impending major surgery. I’m not sure why, maybe that would have been the rational response in most people. Clearly, I’ve never been most people. While everyone else still slept, I would quietly shut the front door behind me and take off running for hours at a time. Except I wasn’t just running, I was evolving. I was becoming someone else in this new place. I was becoming stronger from my brokenness. cracked-rock-background-1424232287GVz

Before my son’s diagnosis, I saw strength as solid and stoic. Unbreakable and unmovable. It was the refusal to cry at funerals or sad movies. It was the brave face, showing the world nothing could faze them. It was the ability to lock out all of the emotions that could hurt. It turns out, in doing so, that was just locking out all of the emotions that makes you human and able to experience the full spectrum of pain and joy in this world. I never realized that vulnerability could be strong but I’ve come to realize that it is. It’s so much scarier to tell the truth than it is to hide behind a smile. It’s so much harder to feel all of the pain than it is to just ignore it and let it eat away at you. It’s so much braver to admit how afraid you are instead of pretending you aren’t afraid at all. There was a time I wouldn’t have been able to read that, let alone think that, without rolling my eyes.

So what if we all told each other the truth? What if we answered “how are you” with an honest answer? What if we banished the word fine from our vocabulary? What if we said something real out loud? What if we asked others with an intent only to listen and understand? What if we decided to be brave? To be strong? To be authentic? What sort of difference could we make in ourselves? What sort of difference could we make in those around us?

Dig deep and find your strength. Then, be brave and use it.


by 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 10th 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 20th for the last two years. This year, I wanted to do something different. 945865_418390074926464_583492023_n

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. Emmett hospital

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.


by Leave a comment

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!


by Leave a comment

Breaking through the wall

Originally posted at http://53riverbankrun.com/blog/roadwarriors/2014/01/20/breaking-through-the-wall-2/

They call it hitting the wall. It’s that terrible point in a race/run where complete and utter exhaustion overwhelms you, your legs become anchors threatening to drag you to a standstill, and every bone in your body screams at you to give up and collapse on the ground right this minute. In March of 2012, I sprinted head first into the wall so hard it dropped me to my knees and I didn’t know if I would ever get back up again.

One cold March morning, I found my (previously healthy) 1 year old son Emmett, unconscious and seizing wildly in his crib. This one seizure would change the entire course of our lives. Suddenly our life was full of hospitals, scans, tests, medications, therapies and a slew of Doctors trying to figure out what was wrong. Watching my son suffer turned me into a different person. It cast me into a deep, dark despair that I had never known before. It made me question everything I had ever believed in and everything I thought I knew about myself. It broke me, over and over, relentlessly until I was a hollow shell of a person, a mere shadow of who I used to be. IMAG0242

For the first time in almost 9 years, my heart wasn’t in it at all. I didn’t want to run anymore. However, I continued out of pure obligation because I was going to be pacing for the Fifth Third River Bank Run for the first time that year. I forced myself out the door day after day regardless of how little I had slept, how long I had been at the hospital, or how heavy my legs and heart were. I didn’t enjoy a single step of it and I felt like a traitor to the sport I had once lived and breathed with such true passion and joy.

Light at the end of the tunnel came almost 2 months later, on the day we scheduled Emmett’s first surgery. My legs complained about the strain after the 3 hour car ride home from the hospital, but I found myself wanting to run away to my home away from home. I bolted down the road, running faster than I normally would but it wasn’t enough. I pushed harder and demanded more until my lungs burned, my heart pounded wildly, and against my will tears streamed down my face. I kept pushing until I was vaguely aware that I had started screaming, a terrible anguished noise that frightened even me, its owner. I stopped and crouched down in the deserted dirt trail trying to catch my breath and calm myself down but it was no use. There was only pain and fear and it was pouring out of me like sweat on a hot summer day. I could either fight it or let it go, so I jumped back up and started running again – screaming, crying, and praying all while I punished my legs into oblivion. When I returned home, my legs shook underneath me, but I felt just a little bit better. Maybe I was not irrevocably broken. Maybe I was going to be ok…

As I continued to run, I felt the life slowly surging back into me. It came up from the road itself, seeping into my shoes, until it was radiating throughout my entire body. Running gave me back the will to fight. I was running to feel strong, brave, and whole. I was running for my son Emmett and to give validation to his life, his struggle, and his suffering. I was running because I loved it once again and I couldn’t get enough.

Running has given me something to cling to on some of the worst days of my life. On the day of Emmett’s first surgery, I ran on a treadmill in the hospital for the entirety of his surgery (7 hours and 26 minutes) while he had his entire skull broken apart and put back together correctly due to a birth defect called Craniosynostosis. I stepped off that treadmill with delirious pride and hope that overpowered the fear. On the day of the worst diagnosis to date, the news about his brain, I took off running for hours until I had to come walking home, exhausted, sore, and hungry but still not defeated. Kathy_Sebright_1982

I truly believe that running heals; it is cathartic, empowering, and real. Whatever you are trying to overcome, whatever you think you can’t do – you can. The answer lies with in you and your refusal to give up. You have the power to keep getting back up and keep charging that wall head on until you are through. Keep running, keep pushing back, and I will see you on the other side of the wall.


by 1 Comment

An ode to my treadmill

Originally posted at http://53riverbankrun.com/blog/roadwarriors/2014/06/04/an-ode-to-my-treadmill/

photo (2)Oh treadmill, you get a bad rap. People hate you. And they don’t just hate you; they hate even the thought of you. They don’t even know you and they wrinkle up their nose in disgust. They call you names like dreadmill or hamster wheel. They seem to be offended at your mere existence, that anyone would ever *gasp* consider running on something like a treadmill. I remember a time that I was like them: the haters. I wouldn’t go near a treadmill unless there was some sort of freak lightening storm going on outside. Better to be outside and run free than cooped up inside going nowhere. It didn’t matter the conditions, I was always, always, always going to go outside. But our relationship blossomed out of a mutual need to run and maintain my sanity while being tethered to a single room.

It all started with a pregnancy. I know it wasn’t a great first impression. I was carrying a heavy load of baby, wearing a pair of non-maternity capris that were stretched to near capacity, with a cookie in each hand dropping crumbs all over your new, shiny treadmill belt. I wanted to keep running outside, but my husband began to fear my water would break 4 miles away from the house and there’d be no one around to help me. I agreed to run on the treadmill whenever my husband couldn’t run with me outside. I hated it at first, but then I had to admit, it was kind of nice. It was convenient to be only 12 steps away from the bathroom at all times. No one openly stared or disapproved of me while I was on the treadmill. No one asked me if I needed help (as if that would be the only reason a pregnant woman would be running down the road) and there was a limitless supply of cold water and snacks at the tops of the stairs.

Then my first baby boy came and I relied on you even more. I ran for a few minutes at a time in between flying up and down the stairs to check on a crying baby at nap time. Up and down the steps I’d go with the baby monitor bouncing on my hip. I’d run up the stairs, feed him, lay him down, run back down the stairs, and jump on the treadmill. The screeching cries would start again almost immediately. I’d run back up the stairs, change him or rock him, lay him down, run back down the stairs and jump back on the treadmill, and so would go those workouts as a new mom: my run interrupted 10 times in 10 minutes. Sometimes I’d give up on running completely and just strap my baby boy to the carrier on my chest. We’d walk slowly on the treadmill together, the familiar movement and hum of the treadmill belt lulling him to sleep. Some of my fondest memories are on a treadmill with a sleeping baby on my chest – the exhaustive daze of newborn parenthood overridden by my overwhelming love and awe at this little person I had made. Looking back, it still wasn’t a real good representation of myself even then, but I still felt like a rock star on that treadmill. I was still sporting my maternity yoga pants (that sadly fit much longer after I wished they wouldn’t), my hair hadn’t been brushed in 3 days, and there was baby spit up down the front of my shirt that I’d already changed twice. But I was free to run, even cooped up in the basement and while I was technically not going anywhere, I was surely moving. When another baby came and I began juggling kids, work, and running – I relied on your steady availability even more at all sorts of crazy hours of the day.

Now brace yourself, here is where it gets a little sappy. Sure the treadmill had been convenient before, but I didn’t love it by any means. The first time I ever felt the true depth of my appreciation and near love for a treadmill was on June 20, 2012. It didn’t matter that the conditions outside were perfect, I wasn’t going further than 5 feet away from this building, not even if my life depended on it. I was standing in a tiny windowless room, 3 hours away from home, on the 10th floor of a children’s hospital, teeth gritted, and tears streaming down my face. I wanted to run away. I wanted to throw things and smash them up against the walls. I wanted to scream at the top of my lungs until it all went away. I was filled with so much raw, nervous energy that my hands shook as I reached to press the big green start button. And there it was as the treadmill belt began to move – I was free. Even cooped up in that room going nowhere, there was life and hope and freedom. I could run. I could feel my body pull itself together to weather this storm, to absorb the shock, and carry on somehow. I cried tears of relief that I had something so simple and so amazing to cling to. For exactly 7 hours and 26 minutes, I ran and I was free even while chained to that treadmill until the call came that my son Emmett had made it out of surgery. He was ok. He was alive. He was in recovery. I could see him. I stepped off that treadmill full of gratitude and hope. The treadmill kept me grounded and kept me going when I thought it was impossible. photo T E

So the moral of the story? I don’t know. Be nice to a treadmill today because you never know when you’ll need one tomorrow. Or something like that.


by Leave a comment

Caregiver’s Corner – surviving a hospital stay

Originally posted in Broken but Priceless Ministries’ e-magazine, volume I

If you are anything like me, when your loved one is facing a surgery, more testing, a procedure, or an unexpected stay in the hospital, the last thing on your mind is what sort of stuff to bring along. If you find yourself in that situation often, I recommend keeping a bag packed for the hospital. It’s just like a pregnant woman having a bag packed and ready to go at a moment’s notice for when the baby comes. Having a bag packed can make you feel more prepared when facing the unknown and less panicked about grabbing everything you can as quick as you can when something goes wrong. What do you bring to the hospital? That depends on a lot of things, like how long you are staying, if it’s an adult or child that is hospitalized, what sort of facilities you have access to, and how long you intend to stay. I’ll start with a few things that are generally helpful to have in most situations. 559314_3005109145141_892921302_n

* Bring flip-flops or slip on shoes. The hospital floor is not a place you want your feet to intimately know.   Taking off and putting back on regular shoes or tying and untying laces over and over gets old very quickly. Slip on shoes are the way to go. If you don’t have your own private bathroom or have to share a shower, flip flops can double as shower shoes.

*Bring change/cash. Many hospitals have vending machines and sometimes you can be desperate for a sweet or salty snack after a hard day. If you forget something, you can run down to a gift shop/mini convenience store that most hospitals have. I rarely carry cash or change with me anymore, so this is something I have to consciously think of to pack.

*Bring your own snacks or easy foods to microwave if you will be staying for an extended period of time. Hospitals try, they really do, but the quality of food can leave a lot to be desired much of the time. I like to bring food that doesn’t need to be refrigerated and doesn’t involve much prep. Things like trail mix, bananas, apples, canned soup, and popcorn, are staples of mine. A lot of people like to bring microwavable meals too. Many hospitals will have a hospitality room where there is access to a refrigerator, coffee maker, microwave, and toaster.

*Bring things to do. Books, devotionals, coloring books, crayons, small toys for children, a journal, pens, a laptop, etc. I have had days where I could do nothing else but stare at my son in a hospital bed as he slept and days where I was desperate for something to distract me from that place.

*Bring comfortable clothes that you don’t care if they get wrecked or stained. Pajamas, yoga pants, t-shirts, capris, and your favorite lounging around clothes are all good. Things happen in the hospital. Medication gets thrown up, antibiotic cream gets smeared into your shirt, blood runs onto you, and so on.

*Bring comforting things that remind you of home. Your favorite slippers, a framed photo, a small knickknack, your child’s favorite blanket, your iPod or MP3 player full of music, or really anything that can help you relax in a small way. But when bringing important items, keep in mind that things could get wrecked, broken, or even misplaced in a hospital stay.

*Bring your own toiletries. Toothbrush, toothpaste, shampoo, conditioner, lotion, chapstick, etc. The air is generally pretty dry in a hospital, so good lotion and good chapstick are always a must for me. Bring you own tissues too so you don’t have to use that terrible sandpaper in a box that many hospitals lovingly offer.

*Bring your medical information. I have a medical binder that has my son’s current tests, scans, and appointment summaries. I also keep a medical journal of all major medical events, hospitalizations, dates, Doctors, etc. This is especially important if you hospital jump like we do. My son sees specialists from 3 different hospitals that don’t communicate with each other, so it’s important we can give them that information.

*Most importantly, bring your faith. It’s hard to be in the hospital and watch a loved one suffer. It’s hard to not know what is going to happen and live on the edge. Hold onto your faith even when it’s hard. That is when you need God the most.


by 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 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


by Leave a comment

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


by 1 Comment

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.