Kathy Sebright

Writer. Speaker. Believer. Runner. Truth Enthusiast.


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My story isn’t over yet;

I abruptly left the room. It was Sunday and as usual, I was crying in church. Every Sunday, before I step into that building, I tell myself I’m going to do better this time. I’m going to hold it together. I’m going to put my brave face on. I’m going to be settled. But every Sunday, a tidal wave of emotion washes over me and I can’t shut it off. I desperately try, because I’m so tired of being that person, but I can’t make it stop. My soul is overcome.

At the end of the service, a friend from church held out this small green felt bag to me and said something like “I saw this and thought of you” before someone started talking to her. And I wanted to stuff it in my purse and open it later, but curiosity got the best of me. The look on her face was important. This small bag felt important. I stood at the back of the church and opened it. With trembling hands, I read the words etched on the silver bracelet as tears ran down my face. I didn’t have a response. I think I just hugged her and cried. Maybe nodded a few times and said thank you. I couldn’t make an intelligent sentence, I do know that.

I clutched the delicate silver bracelet in my hands that proclaimed “my story isn’t over yet” with a semicolon charm attached. The semicolon of course is used when a sentence could have been ended but wasn’t. I am the semicolon. I am not done. There is no ending punctuation to my life, not yet. My story continues on because I continue on. Even in the wake of the regrettable and reckless things I have done, I am still here. I am still alive. My story is not done; there is so much I want to add to it.

It wasn’t so much the gift of a bracelet. It was the gift of being SEEN. I was seen by her. During this dreadfully long and lonely road I’ve been on, she saw me, shoulders hunched forward in the driving rain, and sobbing all alone. What a gift it is to be seen by someone who cares despite the disastrous mess you have become.

It was so dark at times I couldn’t see it. I had been so focused on the love that I couldn’t feel and the deadness of my heart that I hadn’t noticed right in front of me, there were those willing to step up and step in, giving their love freely to me. Love has been there all along. I haven’t been alone. Love was showing up on someone’s doorstep and crying at their kitchen table. Love was a sweet compliment on my jacket and a squeeze of my shoulder as I cried in a hallway. Love was a phone number on a sticky note and the offer to call anytime I needed someone. Love was a bracelet with the words of my heart etched on it. Love was in the encouraging words and a genuine laugh. Love was in a prayer, a kind smile, and a couch that automatically reclines. Love was the good kleenex. Love was a bottle of windex and a roll of paper towels, ready to protect me from hurtful words. Love was in an email from my soul sister. Love was in the hands of my husband, always steady and strong, willing to pull me back up when I fall on my face. Love was in the faces of my children. There has been so much love around me.

I have been blind. So very blind. I am still here and I am not done. It’s time to get back up. It’s time to rise. It’s time to feel love again. It’s time to be brave again. It’s time to stop hating myself for what I can’t change. It’s time to stop using what others feel or say about me as a measuring stick to what I should feel about me. It’s time to shake off anything that does not fill me with love, peace, or hope for tomorrow. It’s time to break free of the sorrow and anguish that has been dragging me down and I am ready. Yes. I am ready now. It’s time to see myself through the eyes that matter most ~ God. 

Dear friend, I see you. You are going to be ok. I don’t know what it is but I know that you will be ok. You are loved. Please know you are so loved. Find help if you need to. Come find me if you want to. Together, we will be ok. Together, we will keep going.

Your story is not over; there is still so much to add to it.


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Find Help

Tonight, something happened. Something real. Something true.

I didn’t really want to go for a walk anymore. But I had already told myself this morning I would go after dinner. It wasn’t much, but it was something. A new tradition in an attempt to gain some head space and clarity in a life that has been nothing but murky and muted lately. TWLOHA_TitleLogo

My headlamp illuminated a small path in front of me as tiny flakes of snowy rain fell. The small beam of light staring straight out into the darkness had a mesmerizing effect, like turning on your high beams during a snowstorm and suddenly feeling almost lost in a world of snow that seems to be cutting straight through your windshield.

I pulled the collar of my jacket up around my neck as I turned the corner and was hit with a blast of biting wind. I could hear wind chimes in the distance: beautiful deep, metallic sounding chimes that rose and fell with the gusting wind. It was the perfect melancholy soundtrack for walking in the darkness.

I kept walking as tears began to fall from my eyes. I sighed. I did not want to cry again. I was so tired of crying. So tired of swollen eyes and sore noses. So tired of looking like a mess and feeling like an even bigger mess inside. I tried to stop the tears, but I couldn’t. They slowly rolled down my face and became mixed in with the snowy rainy bits that landed on my cheeks and instantly melted.

In that moment, I heard it clearly. As if someone were standing right next to me and whispering into my ear. “It’s time to stop hiding Kathy. It’s time to tell the truth.” My stomach lurched. The truth? No. I couldn’t do that. What would people think of me? How would they look at me now that they know? Again, that voice whispered. “It’s time to stop hiding Kathy.”

You see, I want to hide. I’ve been doing just that for months now. I don’t know what I’m doing right now or if it’s right or wrong. All I know is that when I hear a quiet, stubborn voice telling me to do something I really don’t want to do, I need to do it. I should be saying this to some of you in person. Please forgive me for not being strong enough to tell the truth until now. For keeping you on the outside. For letting you find out with the rest of the world.

For months now, everything on the inside of me has burned with fire and I didn’t know what to do with it. I wanted to scream for help in the midst of these ashes but the words were extinguished in my heart, never to grace my lips. Fear and guilt extinguished those words before I ever got a chance to breathe them out. I wanted to ask for help so many times, but the words floated away from me weightlessly. I wanted to stand on my chair at church and scream at the top of my lungs for someone, anyone, to see that I was vanishing before their very eyes. I wanted to confide in my family that I felt like I was dying and I wasn’t sure if I was going to make it. I wanted to curl up into a ball on the floor in the hopes of someone swooping in to save me. I wanted to be saved from myself but I couldn’t be. I was too good at what I had done many times before: hiding and pretending. Only I could decide if I was going to be saved this time. I had to say yes.

“Yes,” I whispered to the wind. “Yes. I will tell the truth.” THIS IS ME. I pulled the sleeves of my jacket up to my elbows and felt the snow fall on my forearms. I inhaled deeply and threw my bare arms straight up into the air, like waving a white flag of surrender into the dark night. Snowflakes kissed my exposed wrists adorned with jagged slash marks that aren’t even a month and a half old. It started as a whisper. “These are my battle scars. These are my battle scars. These are my battle scars.” I felt hysteria building in my heart over the words I was saying. I repeated myself, saying the same thing over and over. “These are my battle scars.” I don’t even know where that phrase came from. It just popped in my head but it wasn’t enough. I could feel it building and so I did the only thing left to do. I screamed into the night. Not a scream of pain or anguish or even defeat. This was different. If these are my battle scars, this was my battle cry. This was a scream of power. Of fighting back. Of standing back up and charging my way back into my life.

I have been looking at these ugly scars on my wrist like they were my weakness. I saw them as proof of my undeniably weak character. But maybe, just maybe, they need not be weak any longer. Maybe they can become powerful. I got help. You can too.

wspdlogoToday I want you to get help if you need it. You are brave even if all you feel is weak. You can rally every last bit of strength you have left for this fight. You can return, weapons drawn to the front line to face off against your demons. Scream words of resilience and hope and power to the sky. You are not a lost cause. You are not unworthy of love. You are not worth giving up on.

This is me. As flawed as flawed can be. But I am strong. I know I am. Somewhere deep inside lies a soul covered in truth and bursting forth with a light so bright, I know I can banish the darkness inside. Today I beckon you forth from your darkness. Tell the truth. Find help. You are not alone.

If you’re struggling, TWLOHA has local and 24-hour resources on its FIND HELP page: https://twloha.com/find-help

Suicide Prevention Hotline at 1-800-273-8255


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Full of truth

fb_img_1473864521696I sit here in front of my laptop with trembling hands. The words are threatening to spill over. And once I start, I don’t know if I’ll ever be able to stop. What if I can’t stop? What if it’s all wrong? What then?

I feel it building. The pressure on my chest sits even heavier than it did the day before. And I don’t know what to do with it. I am going to implode. I am going to burst out from inside myself. I am a ticking time bomb. I am a dormant volcano that is going to burn the entire world around me one day without any warning. I am hiding in here. I am hiding everything in here. It doesn’t feel right. And it doesn’t feel wrong. It doesn’t feel safe. And it doesn’t feel dangerous. It doesn’t feel at all. There’s nothing there except a shell of who I once was.

The thing is, I can barely look at myself in the mirror. I hate myself. I do. And I know that’s something that might make people uncomfortable. It’s a harsh statement. Hate is a strong word. And I have directed that arrow of hate at my own heart. I know there are people that care for me. I know there are people that love me. And I know that people want to shield those they care about from hate, which is why these words might feel uncomfortable. But there is nothing anyone can do to deflect this. Only I can set the arrow down. And right now, I can’t fathom ever being able to do so. Right now, my finger is twitching, begging to let that arrow fly and destroy all I have left inside of me. That statement is scary. It’s naked. Vulnerable. Honest. And freeing. It’s the truth. That’s all it is. The God’s honest truth. And it’s time to tell the truth.

I have hated myself for a long time. I could give you a whole lot of theories and background stories, but none of that matters at this point. What does matter is I thought I had gotten better when I went to stay at a mental hospital for 8 days last year, but I didn’t. I guess I pretended. I hid myself under a cloak of busyness. I hid myself under the allure of accomplishments. I buried my heart six feet in the ground and ran as fast as I could in the other direction. Sure that if I could just get far enough away, it would be ok. But it wasn’t ok. I wasn’t ok. Nothing was ok. Not really.

I turned from God. And then I turned from myself. I became ugly. Hateful. Hurtful. Selfish. I became someone who was no longer me. And I hid it under a carefully constructed mask. A mask that demanded that I show the world just how “fine” I was. And I kept the mask on as long as I could, until the truth could no longer be denied. The mask fell from my face on a warm Wednesday evening and all that was left behind was me. I recoiled at the exposure. I felt like people could really see who I was for the first time. Was it any wonder that they didn’t like what they saw in me? I didn’t think so. Nothing anyone could say or do to me could ever touch what I felt about myself. No one’s rejection reached as far into the depths of my soul as my own rejection of myself did.

To those of you that have seen me lately, some of this might not come as a surprise. Obviously, I am not ok. You’ve seen me in this turmoil; I know you have. I am crying in the school parking lot. I can’t meet your eyes when I run into you at the grocery store. I am sobbing uncontrollably in church. I am abrupt, very suddenly turning and running away whenever I feel unable to control the tidal wave of emotions inside of me. I am behaving strangely. I am forgetting my responsibilities. I am distracted. I am scared of never really being seen again for who I am. And I am even more scared of actually being seen again. I am a desperate hopeful contradiction.

I have wrote and rewrote these words numerous times. I have published this post and then deleted it in fear, then re-published and re-deleted it. I am so unsure of everything around me. Of who I am. Of who I am not. I am so very unsure. And I don’t know why I must share this. I don’t know why I feel the need to expose my wounds to the world. I don’t know anything anymore. Except maybe there is a tiny piece of me still in here. Maybe there is a tiny piece of me begging to get out, dying to begin again, and desperate to feel.

For today, I take solace in the fact that these words and this blank page in front of me is a witness to a life that no longer feels real. So the answer is no. No. I am not ok. And that has to be ok for today.

 

 

 

 


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She is the darkness

I’ve been working on something a little (Ok, maybe a lot) different. Here’s a snippet:

She stood unmoving, staring out the storm door into the darkness. Every light in the house was on, but it was still so dark. She could feel it. It sunk into her skin like an unwelcome visitor that just wouldn’t leave. She was the only one awake. The darkness sat so heavily on her heart, it hurt to breathe. She was exhausted from not sleeping but so wired she couldn’t possibly close even one eye. Hopelessness. Dread. Guilt. Shame. Rejection. Loneliness. Pain. These were her friends now. And as much as she wanted to hate them and push them away, she drew them in closer in a moment of weakness. She found comfort in the old familiar darkness. She had felt it before. She had stood head to head with the darkness many a time, fighting back and trying to reclaim her life. Now she was too tired to fight. Too beaten down by this life to believe she had any fight left in her. She opened that door and let them in. All of their chaos and abusive familiarity choked her soul. She’d let the enemy in. She knew she had. But now that they were there, did it really even matter?imag0612

She knew it must to some degree because he had told her so. He looked at her with wary eyes. He was watching her for some sort of clue she might break. People kept asking her if she was ok. She didn’t know how to answer their simple questions so she chose not to. The circles under her eyes grew darker and darker as if the darkness itself was taking over her entire body. Maybe it was. She didn’t know. She didn’t know anything anymore. She stopped sleeping, which was achingly and devastatingly familiar. Survival mode. She knew it well. She stopped eating regularly, only doing so when he reminded her. The weight that she had put on during happier times suddenly began to slide off effortlessly. She supposed maybe that should make her just a little bit happy, but the feeling never reached her heart. It was just a thought that got blocked on the path to nowhere and was gone forever now. Like so many other thoughts that went nowhere.

Her head was a prison. But she was unsure if that meant she was locking everything in or locking everybody else out. Not that it mattered at this point. The damage had already been done. The writing was on the wall. And all of those other clichés that people use to try to accept how the past affects their future. She hated it all. All of the words. She used to love words. They made her come alive. She used to feel content and even a little powerful in the midst of her words. Now all of her words had left her. They had abandoned her. She wanted the words to dance across the paper like they once did. She wanted to feel that passion bubbling up when she really got on a roll. Instead she felt heavy with words that she didn’t dare say. Because once she said them, that would make it real. And she didn’t want any of this to be real. Except it was. At least she thought it was. The world had taken on a hazy kind of quality. Like it could actually be happening or she might have fallen asleep on the couch and found herself in this dreadful nightmare of someone else’s life. It looks and feels like her life. But she can’t touch it. She isn’t sure if it really is. Of course, this just makes her feel crazy. Crazy with thoughts. Crazy with uncertainty. Crazy with words.  Words she hates.

She stood unmoving, staring out the storm door into the darkness. It had started to rain and she found herself drawn to the outside. She moves slowly, stepping through the storm door and outside into the actual storm. The rain was cold and driving. The wind blew her hair back wildly. She closed her eyes and willed herself to be anywhere but here. To be anyone but who she actually is. She kept her eyes shut tightly and began to whisper her pleas and her demands. To the universe. To God. To anyone that will listen. With each broken plea, she feels even more desperate. The words come out in waves. Like the sea ready to overtake a tiny boat in a storm, her words threaten to capsize her. She whispers more quickly, sure that if she can just get all of the words out before she drowns, it might make a difference. Her whispers turn louder and louder until finally she is yelling. Yelling at the sky. In the rain. In the dark. Over the roar of the wind.  Her tears are washed away with the rain water. Just as she has been.

In the morning, just as he has many times, he stood over her beside and looks down at her. She is never asleep, but sometimes overwhelmed by his sincerity and concern, she pretends to be asleep. She is too afraid to disappoint him. Too afraid to tell the truth. Too afraid to hurt him with her own hurt. The door was left open last night. There are muddy footprints and leaves littering the entryway. A puddle of water where the rain came in and soaked the rug. She doesn’t know that yet, but he does. He knows everything about her. He sees everything even when she can’t. He is still standing over her and looking down when she opens her eyes. And sees him. Really sees him. If only his love for her could save her from herself. He wants to save her so badly. She can tell from the look in his eyes. He is desperate for her. He doesn’t know she is a lost cause. He doesn’t realize that she can’t let him love her because she doesn’t even love herself. She is broken. Broken beyond all repair and he is wasting his life on her.

She stands unmoving, staring out the storm door into the light. The light that never quite reaches her. She is cloaked in darkness. She is the darkness.

 

 

 


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The Book of Secrets – a scared author’s memoir

IMAG0920
The sky is blue and the air is warm. It blows in through the sheer bedroom curtain as I click the keys furiously. I am alive and well. I am happy and content. But I am also scared and unsure of myself. My book will be out in less than four weeks. This is big. Like REALLY big. This is something I’ve wanted to do my entire life. A dream that I’ve carried around with me ever since I could hold a pencil and write more than just my name. It’s more than I could have ever hoped for.

I’m standing on the edge of that cliff, on the cusp of jumping over, and I hesitate. What am I doing? What on earth am I doing?

It has been seven months since I have published a post. Seven. I could make excuses, but why bother? As I’ve stumbled through the editing and formatting process and attempted to learn as I went, it’s been undoubtedly slow. It’s taken up most of my free time and zapped all creative energy from my brain. With every misplaced comma, incorrect tense, and each capitalized word in quotation marks, the words in my head fell farther and farther away from me. I forgot that I actually enjoy writing. I got focused. Too focused. I wanted to make the book perfect. I HAD to make it perfect. I couldn’t do anything else until I got it just the way I wanted it. That would make me feel better. Or so I thought.

I sit here today in front of my laptop. I should be working. There are people to contact, facts to go over, last minute things to check, bottom lines to look at, and more. I’m bored with it though.

What am I doing? I am telling the truth. The whole truth. The bits and pieces that I have buried like treasure for safekeeping. I have built wall after wall around these secrets to keep others out. And just like that, I’m going to blast a hole in the wall for the entire world to see. Seriously? What on earth am I doing?

You see, I have secrets. Lots of secrets. For every word I share, there are twenty more lurking beneath my fingertips. For every devastating memory I bring to light, there are five more that I choose to keep in the darkness. I am publishing a book of secrets, things that my own family and friends don’t know about me. My final chapter – that’s the real deal. It’s the true test of my bravery. I wanted to take it out. I really wanted to take it out. I still do a little bit. But I can’t. It’s too important. It changes everything and there will be no going back. I have to tell the truth. There is no other way around it. I have to tell the truth. And I am scared and unsure of myself.2016-05-24 14.05.43

I stand on the edge of that cliff, on the cusp of jumping over, and I hesitate. It’s going to be okay Kathy. I close my eyes, take two steps forward, and free fall into the great unknown. Today, my book is finished.


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Seasons change and so did I, you need not wonder why

I have this dream pretty regularly. I am running from someone who intends to do me harm but can’t get far enough away. I end up backing myself into a corner, in a dimly lit room with this beat up creaky old white door that doesn’t lock. On the other side of that door, they push and push trying to get in and I can’t hold the door closed. The intruder is powerful and strong while I am defenseless and weak. The door opens a little bit at a time and I’m screaming, using all of my force to attempt to close it but it’s just not good enough. The door opens wide and then I awaken with a jolt.

Now I’m sure some dream analyst would have a lot to say about the dream but that’s not really the point at all. The point is that no matter how many times I have this dream, I can’t change the outcome. That door is coming open whether I want it to or not. That’s kind of the way it works in the waking life too, isn’t it? Change is right there, pushing at our door while we waste precious resources of time and energy fighting it, hiding out on the other side of the door attempting to hold it back. Still it spills in a little bit at a time until its invaded the whole room and there’s no denying its presence anymore. IMG_7553.JPG

I have spent a lot of time looking for who I used to be to no avail. No matter how hard I tried I couldn’t find her. I was so sure that if I just kept at it eventually I’d run into her; pun intended of course. Much to my dismay, she was gone without a trace. My endeavors were fruitless. She had blown away in the wind. Only I was left. There was no old me or new me; there was absolutely nothing. I had to start all over, rebuilding this person I only had a vague recollection of. I stood broken and full of despair for what no longer existed. I didn’t know where to start and the world felt dark and shadowy beneath my feet.

What I didn’t realize was that this was always the way it was going to be.  I was never going to be able to be the same person again. We are not supposed to be. We are supposed to change. Grow. Leave little bits and pieces of ourselves in yesterday. With every heart break, success, failure, and joy, we change. It happens whether we want it to or not. It’s hard to accept that we don’t really have a say in the process, especially when the change takes you by complete surprise and leaves a gaping hole in your heart. We can deny it or we can accept it but either way, it is happening. To accept it doesn’t mean you have to like it; it just means you don’t settle in that in-between space trying to relive out all the different ways it could have or should have went. You can accept something that you really, truly hate. It will be hard. It will hurt. It will shake you to your core. It will feel like the entire world is caving in around you at times. It will be a long process, one step forward, two steps back, and then again until you gain some traction and start moving forward but you can do it.

Tony_Robbins_Quote_Change_Progress-e1345880409149Maybe that’s an overly simplistic view of change. Maybe it’s all way more complicated than accepting what has happened has really happened. Maybe I don’t understand it at all. Or maybe I’m still too sleep deprived to tell if my words are coming out right. Either way, this is what I am going to do today. This is what I want you to do with me. Give up chasing the ashes of what wasn’t. Give up clinging to the hope of what truly can’t be. Extract yourself from the tangle of webs that have held you down and still for so very long. Stand tall and believe that you are capable and worthy of moving forward. Take that step. Just one. Just for now. Just for today. Take that step and know it will be ok. Maybe not right away, maybe not today, maybe not tomorrow but someday, it really will be ok.


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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.