Kathy Sebright

Writer. Speaker. Believer. Runner. Truth Enthusiast.


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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.


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Losing yourself

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

 When so much of your life is dedicated to taking care of someone else, it’s easy to become a passenger in your own life. In your overwhelming need to be there for the person that is ill, you can almost forget you are a person too. So much time, energy, stress, and worry goes into the one you love. You focus on their pain, their recovery, their medication, their doctor appointments, their treatment options, their progress, and their entire life. It feels like it’s the very least you should do. You are, of course, the lucky one. The healthy one. And you would give anything to make them better and to take it all away so this is how you show it. IMAG0003 (2)

I didn’t understand just a few years ago, that I could only do so much. Forcing the life out of myself because I didn’t feel I should have the right to laugh. Passing on offers to do something fun because I didn’t feel I should be away from my son. It’s some of the deepest guilt I’ve ever experienced. And not just guilt, but shame and embarrassment. How dare I live my life when my son is suffering so much, I chastised myself. I thought somehow I owed it to him to suffer with him, as best as I could. It was out of pure love and sacrifice, however misguided. And so suffer I did. I put everything I ever had into my sick child until I was just a shell of a person. I gave everything I had away until I wasn’t anyone anymore. I lost myself in the grief and the relentless fear over someone I so desperately wanted to protect.

One day, I was outside running by myself for the first time in a long time, instead of running downstairs on the treadmill while my son napped like I had started to after he was diagnosed. It struck me suddenly like a bolt of lightning; life was all around me. The wind through the trees, the blue sky above me, and the dirt crunching under my feet. I had missed it so much, being outside, having a few minutes to myself to think, and the overwhelming feeling of being alive. The pain came in waves. I screamed, cried, and prayed over and over in a strange mixture of guilt and relief. I was still here. I had not disappeared after all. When I got home, I felt a little bit better. That was the day I resolved to try harder, to not just take care of my son, but to take care of myself. 2014-11-15 09.13.46

So what can you do if you find yourself in the same well-intentioned but ultimately destructive shoes as I was in? Take a good, hard look at your life. Be honest with yourself and remember that you are a person too. It doesn’t mean you love them any less or take care of them any less. It means you make the time to take care of yourself more. Because you are important too! Ask others for help if you need some time to yourself. Enlist your spouse, friends, family, a home nurse, or whatever you may need in order to give you the peace of mind to take time for yourself.

Set aside a few minutes in the early morning to do something that calms you: reflect, write in a journal, sit outside and watch the sun rise, read, pray, or do anything peaceful. Just make sure to do something you want to do, not that you feel you have to do. Aim to be active a few days each week. You don’t have to start running marathons or do 50 push-ups each morning. Just go for a walk around the block, ride your bike down the street, or dance in your living room. Exercise is a fantastic stress reducer, energy booster, and confidence enhancer. Use it to your benefit! Take time to get out and do something fun every once in awhile. Have lunch with a friend, go shopping at your favorite store, or do something that you genuinely look forward to. When you make taking care of yourself a priority, you can take better care for others!

 


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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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Drifting together

Originally posted at http://www.erinelizabethaustin.com/blog/drifting-together

Our family of four was in crisis mode tending to only the most critical of wounds, which happened to be our one year old son Emmett. Everything else was prioritized accordingly and tossed to the back burner, including our marriage until everything we piled up back there and forgot all about threatened to pull us apart.

Out of the blue, my husband suggested we go out for what would be the first time since our son Emmett’s first seizure and the harrowing turn of events that had followed. It also just happened to be less than two weeks before Emmett’s first skull surgery. While we waited for a table to open up, we had wandered into the shoe section of a department store. Totally exciting, I know! I was mindlessly walking through each aisle when the thoughts I had been working so hard to keep out infiltrated my mind. What if he has a seizure on the operating room table while they are cutting him open? What if he doesn’t wake up? What if I never see him alive again? Surrounded by flip flops and other unassuming shoppers, I could feel the tears welling up in my eyes. “I don’t want him to die” I blurted out in a voice entirely too loud for Friday night department store shopping. I tried to hide my face from the curious onlookers as the tears began to fall. My husband put his arm around me and I began to cry even harder. “Get me out of here, I don’t want to be here, I have to get out of here” I gasped through sobs. My husband grabbed my hand and started a half walk/half run towards the nearest exit, while people stared after us. When we got out to the car, I sobbed into my purse until all of the makeup I had worked so hard on streaked into one big messy pile upon my face. So much for a nice night out I thought. I just wanted to go home. I wanted to touch my sweet baby’s head, see him asleep in his crib, and know that he was ok. We gave up on dinner and hightailed it back home. Even though that night hadn’t gone the way we intended, we were brave enough to try.

Nobody tells you the effect that a diagnosis will have on your marriage. Of course it impacts your daily life, your faith, your schedule, your finances, and you personally as a parent, but your marriage? For me, that was completely unexpected. A diagnosis can drive a deep and immediate wedge right in between you and your spouse. The slow drifting apart that you’re too stressed to care about at first, but then stop noticing can finish off your marriage altogether. There is a higher divorce rate among couples with special needs children. There are many different theories as to why: the extreme rollercoaster-like ups and downs, disappointment over the way the other has handled the situation, the constant stress and worry about the future, the astronomical cost involved in taking care of your child, and most importantly disagreeing about medical treatment for your child, which can rip to shreds even the most loving of couples. Take all of that emotional baggage and then add to it the regular, ho-hum, every day demands of a marriage and it is no wonder why we feel ready to break at any moment. This is really, really hard. The life you knew, gone. The marriage you thought you had, on the brink of destruction.

It’s hard to prioritize your marriage when you are knee deep in this life. If you have a special needs child: money, schedules, medical needs, and a babysitter that you can feel confident in all became an issue, among other things. It seems ridiculous to be concerned with a date night when there are serious problems you face everyday. But what I have realized that if we are to have any hope of surviving, we need God and we need each other. Our marriage is now as important as ever in the wake of this turmoil. We need to be there for each other and our children. We have to work twice as hard as everybody else to keep this sinking ship that is our life afloat sometimes and although it seems like one more injustice in our lives, it’s important and worthwhile.

You don’t even have to go outside of the house to prioritize your marriage, although it’s nice. We turn off the tv after the kids go to bed and actually talk to one another, not just rattle off schedules and a brief synopsis of our day in between commercial breaks. Once a week, we do a half hour marriage devotional. It helps us keep God in our marriage, brings up good conversation points, and reminds us that nothing is impossible with Him on our side. We pray together each night as well. We have a date nearly every Friday night. On date night, there is absolutely no medical talk, it is not allowed. We stay in most date nights but we eat a nice, or not so nice depending on the day we’ve had, dinner after the kids go to bed. We play a game, watch a new movie, have a fire in the backyard, etc. We also try to get out of the house together once a month with just the two of us. It’s not much but all of that together helps cement the fact that we are in this together. We are intentional about keeping our marriage together, about keeping God in it, and not allowing anymore drifting apart.

I’m here to tell you from experience that your marriage can not only weather the storm but thrive in the storm when you are both committed to making it work. My prayer for you today is that God blesses your marriage, wherever you are it in it.