The tale of the CT scan

Many of us know, all too well, that Cranio makes our lives forever different. This week we had a reminder of this.

On Monday Zoey was playing with David on the couch. In a typical sibling outcome, she ended up getting pushed off the couch. Her arms failed to catch her, and with a sickening crack, she landed face first on the carpet. While in the middle of a meeting I received a text message from my beloved letting everyone know about this, and that she believed Zoey broke her nose.

A flurry of fear filled me, and my heart was pounding. I tried to focus on what must happen, as I was methodically tracing my next steps. I was shocked with the thoughts flying through my mind. As an adventurous boy, and adult, my nose has ended broken 20+ times. I know the game. Ice, time, black eyes for a bit, and move on. But not for Zoey. For her, ‘normal’ has a new definition. Anything involving the face or head is not a small deal. So much time, so many surgeries, and more to come, all mean that things are different.

We debated on rising her to the ER. Spending the countless hours waiting to be seen, all for an x-ray. Instead, we reached out to her Craniofacial team. We sent pictures, a narrative, and our fears. Then we waited. We waited for an email or a call. Something to tell us we were crazy, or what our next step was.

 

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It came, a CT scan was needed. I knew what this meant. Surgery, either to fix or the next one we have been discussing was rushing back to the table. My fears were only lit aflame by the bruising that Zoey had the next day. It was telltale and bad. But every time I looked at Zoey, I could see the braveness forcing itself through. I saw my sweet little girl smiling, but I saw the pain.

So, today we loaded up the family and made our trek to the hospital. Zoey was in high spirits. We told her what was going to happen. As our silver van sailed the laughter wafted from the back while Zoey and David joked. My heart was still.

Check in was fast, and our wait was short. When it came to be our time, Zoey took my hand, and we walked. The long hallway caused our footsteps to echo, click, click, click. We almost made it past a beautiful mural filled with butterflies. As I feigned exuberant excitement to point them out to her, I looked at her. And my heart fell a little out of my chest. For the first time, in a very long time, I could see a little fear poking through her eyes.

We walked into a room that, to be fair, I wanted in my home. Freshwater fish scenery adorned the walls and hid the machines. Bass, trout, otters, even a carp with moss covered rocks and flowing plants. There was a light show on the ceiling giving the appearance of rippling water on a lavender and rose summer evening. I bent down to look at Zoey. Her eyes missed all of this, and we’re locked in the machine in terror. Her little hand quickly tightened around my finger.

For the next few minutes, we had to fight her. Her strength and agility were providing a great deal of surprise to the experienced technician. Every breath from Zoey was a scream of “No!”, “Mommy!”,”Stop”, and “Daddy.” That last one ripped shreds off my heart. It was full of fear, anxiety, and hurt. I fought tears as I kept reminding her that I was not going to leave her, that I was there, that I would never let anything bad happen to her. But I know they were falling on deaf ears. Undaunted by this, I kept talking to her. Holding her, and taking my place right next to her.

The fretted bindings that were holding my heart together wholly unraveled as she fought through those that were holding her down. The technician looked at me and asked if I wanted to call it off. My heart was screaming “Yes, please stop this!”, but my mind knew better.

It’s a tough row to hoe being a dad. Our entire job is, or at least it should be, vying for the welfare of our children. Protecting them from any harm that comes our way. And as my daughter lace screaming for this to stop, writing on the table, fighting against the straps, and the hands, I knew that this needed to happen. So, we fought on.

Finally, I found a way to hold her. Though it was not soothing her in any way, I was able to contain her. In a matter of moments, the X-ray and ct-scan were over. As they pulled her bed out of the machine, I can see the streams of Tears along her cheeks. Like Jewel filled streams of water against the blackened eyes from a broken nose. I Let Go. I stepped back just take a photo of this moment, preserving it and posterity and something else that she has yet again had to fight through. Something that her adult self may look back upon as she wonders about the journey her life has been. The time that she can look back and see her little 6-year-old body strapped to a table and remember that she overcame it.

The moment that the straps were freed she bolted upright. She left into my arms and held me tight as I could quickly feel her tears soaking my shirt. I held her so damn close. Whispering to her that this was over, that she did it, and telling her how proud of her I was. It was at that moment that she finally saw the fish, the Otters, the plants, the light show on the ceiling. “Like daddy’s fish tank” for nearly hoarse voice proclaimed in my ear. With a shuttering thump, I felt my heart begin to beat. My smile matched hers as I looked deep into her eyes. That brilliant sparkle of wonder was finally returning.

A few hours later, after copious amounts of cookies and regaling of her day, who received the long-awaited email. Her nose is fractured but not displaced. No worries about surgery at this time. Reading these words brought great elation to me after a long day.

It’s my job as her dad to protect her. I do not, and will not ever, take this aspect of my life lightly. But it is also my job to remember these moments period to capture them for her and her brothers. So that some dark day, when I’m no longer here to do my job, she will remember these hard days when I did my best.

Leading up to these events I was amazed private care an outpouring of affection that we received from so many others. Before the moment when we walked in that room, crossing the threshold, I was confident that this would have been easy for Zoey. “It’s just a CT scan,” I told myself over and over again. I had failed to remember the fact that nothing is as it should be. That many of the things that many other parents take for granted are entirely different for us. I’d also done the disservice I forgetting that my daughter can be scared. By failing to remember that countless things can disrupt the brave face that she puts on every single day. But for now, and I listen to her sleep in the room next to mine, I find peace. This was only helped by finishing some fine scotch and getting these words out.

Live big, love bigger, and be kind, always.

Early mornings

Here I sit, listening to the sounds of my sleepy home. Being woken up at 3 am to the sounds of my daughter crying. Sometimes the medicine she has to take to help her use the bathroom works too well in the middle of the night. Having stripped bedding, started laundry, cleaned her up and put her back to sleep, my mind is in overdrive. These morning are spent validating my role as a dad.

As I ruminate over the last five crazy years, I look at the changes that I have gone through. Culminating in the birthday celebrations of the previous four days, I now have a six year old.

A six year old.

Where has the time gone? Better yet, what have I done with this time that I have been given? As I listen to the sleeping sounds of my children, my pregnant beloved, and even our dog, I am left to wonder about it all. I see the struggles that no one else sees. The hard times we have been through. The mountains we have had to climb either dragging the kids with us, or chasing them upwards. I know, parenting, done right, is never easy.

But what about rest? What about finding time to be still? “You need to stop and smell the roses” is something I hear far too often. However, even when I try in earnest, days like today happen. Over and over again. I took a vacation to spend time with family. To get away from stress. To rest and be still. Instead, every single day I have been sleeping less and less.

But, there is time with the kids. There have been moments. Unintentionally amazing moments and memories. Laughter, tickle fights, nature walks, even lazy cuddle on the couch and watch Peg + Cat moments. So, why am I exhausted?

It has been a full five years. From the moment Zoey came on the scene things needed to be different. There were new words to learn, procedures to discuss, pain and fear to work through. All while maintaining a brave face. Not for anyone other than Zoey. She never demanded, but has always deserved my best. Such a strong and brave soul is contained in that little body.

This translated to being the dad that David has needed. He is the embodiment of the thing so many parents say under their breath. “Someday you will have a kid just like you…”. Yeah, I do. Smart, adventurous, aggressive, defiant, little version of me. Still, my little buddy. Showing me countless times that long after I am gone he will be there to take care of his siblings. I know he will do well, just have to keep him alive.

Following the twin tornadoes (seriously what David and Zoey can do to a house in five minuets is mind blowing) comes my respite. Sweet little Jacob. The most mild mannered of the three. Happy to run and play, or cuddle just the same. Quick with a smile, a hug, a laugh. But, he is nearing two, and the signs are there. This is going to be a fun round of the terrible twos.

I know not what #4 will bring. What special kind of chaos he will add to this mixing pot of a family. But, I am as ready as I can be for him to arrive.
All of this is a good kind of exhausting. But does it need to be exhausting? This is the question I ask myself over and over. I am sure that, someday, I will be able to find a pattern that will allow sleep. Though it really is not about the amount of sleep. It is about finding time to be still.

Time to go change the laundry, and empty the dishwasher.

Live big, love bigger, and be kind, always.

*edit notes: So, I tried to use speech to text, during the hours of 3 and 4 in the morning, while exhausted, to write this post. All that I have done today was fix some grammar and word use issues that were driving me nuts.

    A dad’s thoughts on what happened yesterday.

    It is not just a gun issue.

    It is not just a mental health issue.

    It is not just a faith issue.

    It is not just an immigration, rights, society, freedom, security, constitutional issue.

    It is not a love, hate, indifference, compassion, community, education issue.

    It is not just a family issue.

    It is all of these, and scores more. We’ve reached a state in our society that would newsbreaks of children being killed it becomes a headline and not a moment of sorrow . More and more frequently parents are having to worry about what’s going to happen with their child when they send them away from their home.

    As a dad, when I watch the news, I am terrified about the world that my children are growing up in. It is my job to raise them, it is my job to protect them. It is my job to teach them what is right. It is my job just show them love, compassion, understanding, and safety.

    As a dad, it is time that I voice the fact that all dads out there, in fact all parents, need to own this.

    As a dad, I need to do better. Not just for my children and their future. Look for yours as well.

    Live big, love bigger, and be kind, always.

    Building the Bridge

    So, just to make sure we are all on the same page, let’s recap. I have realized that there is something that is stirring in me. There is a change that I need to make to get back to my roots. That I have realized that I let my daughters Craniosynostosis identify me as a dad. I want to add to this that there is NOTHING wrong with this. That is why my identity is not changing. I am not casting off the moniker of Cranio Dad, and I doubt I ever will.

    This change will be a recovery of divergence, wherein I will focus back on my original goal of answering the all-important question: “What does it take to be a great dad”. Moving down the path that I have carved, I want to gain better sight to all the parts of this question that I have gleaned. Continuing to blaze a trail while working on building a bridge to the louder voices. Tired of yelling into the wind, I need to bring all that I have learned into the fray.

    The Big Reveal

    By the time you read this, I will have launched a new site, Fatherly Fieldnotes. This will be a place that I will be pouring all of my focus into answering that nagging question. Moments of insight, uplifting tales, heartbreaking failures. I want to take my unique voice and tell a better story for other parents out there.

    I am harkening back to a former life, when anthropology was the direction that I KNEW my life was heading. I will be taking the approach of being an anthropologist embedded with a tribe or locals. Those locals are my children. I want to expose all the things that I do to try to prepare them for the world that they live in. Further, and this is the biggest realization, I want to show all the things that these local savages (hey, I am their dad, I can call them that) are teaching me about what it takes to be a great dad.

    I do not know what this journey will bring, but I know that it is going to be an amazing trip. So, when you have the time, check out my other blog. It is young, with little detail. But I will be working hard to make it grow. You can also follow my page on facebook. I will still be posting here. This will be my place to talk about just being a cranio dad, and cranio family. But, I will be striving for good, meaningful and (hopfully) hilarious content over on Fatherly Fieldnotes.

    So, if you would like, head on over to Fatherly Fieldnotes and join me on this adventure.

    While you are at it, follow on Facebook, Twitter, Tumblr, and Instagram.

    Live big, love bigger, and be kind, always

      Recovery of divergence

      So, on the heels of the realization from the previous post, that I had let my focus of fatherhood be consumed by my beautiful daughter’s medical condition, I am left staring at the chasm. Where I am standing is where I am now. Across the way is where I want to be. Between the two is a partially built, yet nearly forgotten bridge.

      There is an importance in what I have been doing as Cranio Dad. Bringing the perspective as a man, a father, that has knelt before God and screamed for Him to help his daughter. To transfer the pain that she must be feeling to himself, because as her dad he can take it. Who has journeyed to hell, stared the devil in the eyes, and watched him blink. Having watched my boys on their journey to manhood. Being perched on the precipice of social media, and social change, having spent so long screaming into the wind that my own words have fallen on my deaf ears. A recovery of divergence is needed. But, in my wake, I bring all that I have learned with me.

      Trust me, Cranio Dad is here to stay. I have worked too hard for far too long to change that up. If anything, it will help with what I see as the next phase.

      Getting to the “Other Side”

      Remember the analogy of the chasm and the bridge that I mentioned in the last post? Well, that bridge is this amazing group of dad bloggers that I am proud to call my friends. I see a sea of voices that are working hard to lift each other up, promote change, and look forward. It is an awesome group. For the entire time that I have been blogging my voice has been off to the side of what them. I keep hearing that I am ‘ridiculously micro-niched’. There have been moments of praise for some of the writing that I have done, and they expand it to their audience. These things have been a huge part of who I am, as a blogger. But now, it is time to bring my voice into the fray. Not to get lost in the sea of voices that already exists, but to bring my own, deep resonant voice, and particular viewpoint into the mix.

      In the coming days I will be announcing the step that I am taking to make this happen. Not intentionally stringing you all along. I am a dad with 3.5 kids, recovering from the worst sinus infection that I have had in years, and life is life. Bear with me, and keep your eyes open. You will not want to miss this.

      Live big, love bigger, and be kind, always.

      Something is Stirring

      Perhaps it is because I had to experience the awesomeness of #dad2summit through the lens of my cellphone instead of through my eyes.

      Then again, there was so much to unpack from “Crash the Chatterbox” which I just finished reading for my 2018 reading challenge.

      It could be stemming from preparing to add #4 to our brood in a few months.

      Or that our oldest, and only daughter, is turning six years old even sooner than that.

      But something is stirring. Something deep. Its rawness is sharp and its weight is heavy.

      It all stems from this quote from Steven Furtick in the aforementioned book “Crash the Chatterbox”:

      “Every second you spend wishing God would take away a struggle is a forfeited opportunity to overcome”

      But, what is the struggle that I am talking about? Better, which one from the endless list of shortcomings or pain points does this have to do with? I could marinate on these two questions. Dear readers, you know me. I could launch into a winding torrent of a diatribe as I dabble with it all. But, this time. I am not. The answer is too clear for me to use that tactic this time.

      Fatherhood

      The way that I see it, I started down this road on a mission. I wanted to ask the questions, and find the answers about what makes a great dad. Then, all of a sudden, the picture perfect dream of fatherhood was upended. Shattered as I spent my daughters first few days in the NICU. Listening to monitors, researching Craniosynostosis, and getting involved in lengthy and weighted conversations about what my daughter’s future may look like. These things drown out the pictures and images that I had already formed. Hiding the voice that I had harbored for so long.

      Somehow I missed something. I have been saying it all along and I never applied it. I let my daughter’s condition define me as a dad. NEVER, EVER have I let it define her. But it is who I am. I know more than most doctors and pediatricians about her condition, and the countless variants. I can speak for days about what the surgeries are like, what we have been through, and how amazing my daughter is. Time and time again I have said how thankful that I am to be found worthy of being called “daddy” to such an amazing little girl. But I let my focus of fatherhood be consumed by her condition.

      It is becoming more and more clear that I need to enact a change. I feel like I know what the next few steps are. Nervous and excited I have already started working on them.

      I have more to say on this, but I am actively putting things together to make it all make sense. Stay tuned over the coming days for something awesome.

      Live big, love bigger, and be kind, always.

      A Picture Says A Thousand Words

      Here I sit, on the days counting down to Christmas, in my office. Headphones on, the surreal sounds of Bach’s Chaconne, Partita No 2 in D Minor enrobe me. In true form, I take pause, and find myself reflecting. Not just on this day, not just on this season, but on the last five and a half years. All while staring at a picture frame hanging on my wall.

      Yesterday the team that I lead and I celebrated the holidays at lunch. It was a time of food, gifts, and conversation. We did a Secret Santa drawing this year, the favored gift being that of Starbucks Gift Cards. Hey, my analysts live on caffeine. I was given a beautiful bottle of scotch, which I cannot wait to open. Then, amidst the fanfare and thankyous, a bag was handed to me. My team got together to get me something. This was unexpected. But they informed me that there were two things in the bag. One is kind of a gag. The other, very much not so.

      I reached in, opening the gag gift first. I actually really loved it. It is a set of boxing gloves that they all signed. There is a lot of meaning in them. Albeit a humorous gift, it is one that I have on my wall for all to see. Then, I reached into the bag. My hands found something hard and square. As I withdrew it, the tissue paper fell away.  The shadow box I was holding contained so much for me to take in

      I noticed that the table was silent as I looked at the picture.

      A collage of photos of my daughter. Mixed in were some of our family, but she is the star. This surrounded a letter. As I began to read it, my eyes filled with tears.

      The letter read:

      “We are pleased to inform you that a $200 gift has been made to Children’s Hospital Foundation in honor of Zoey to support Craniosynostosis services at Children’s Hospital of Richmond at VCU by The Business Performance Team”

      Picture Frame

      I have never, ever, had to fight back tears so hard in my life. My heart swelled, my breath stalled in my lungs, and the most unintelligible string of “words” ever to leave my mouth in my adult life… happened.

      I cannot fully describe what this gift means to me. As a leader, a mentor, a dad, a Cranio Dad, an advocate, or just a person. To have the team that I work with do something like this hits somewhere between validation and encouragement. That others are seeing what I have been doing. That they see what it means to me to be so lucky to be Zoey’s dad. I do not think that I will ever be able to thank this team enough.

      Now, it hangs, in full glory and view, on the wall in my office. Serving as an ever-present reminder that I have an amazing team. Adding to the reasons that I love my job, what I do, and who I work with. It has already been a conversation piece. A catalyst into a conversation what my life is like as a cranio dad, and for our cranio family. I hang it proudly, with a set of signed boxing glove next to it.

       

      Live big, love bigger, and be kind, always.

       

        It snowed last night.

        I woke to a white capped winter wonderland, and a list of things to do. I smirked as my thoughts drifted to all those local residents who probably saw this is the apocalypse. I have to admit I felt a little shame as I realize I was relying on other people’s fear of this weather. However, knowing that this meant that I would have decent travel, I got up, donned my flannel shirt and jeans, and got out the door.

        As I walked my car I looked back and saw my children, wide-eyed with excitement, faces pressed against the glass of our front window. Every part of me that is a dad uttered a small prayer that they keep the wonderment that is the season. That they hold fast to the childlike joy that is all things winter. Playing in the snow, building snowmen, hanging Christmas lights, all of it.


        The peace of the open road, the sound of Beethoven softly playing over the radio, these are the moments. In astute reflection I paused as the red light glared at me. This season is so much more than just a cold winter’s holiday.


        I am reaching a height of purpose that I could not even ink out from the base where I started. My home is full of love, passion, understanding, and joy. This more than warms the heart. My job satisfaction is at an all-time high, even as I face new beginnings with my promotion. My faith has been continuously reassured with every struggle and victory. This season is good.


        These thoughts are juxtaposed with the view out my windshield. This is the weather that begs for our melancholy. The deep, dark gray skies cascading against the cool white snow. The ceaseless creaking as the wind blows through the snow laden boughs above. The shocking silence as even nature seeks respite against the cold.


        The light turns green. As my car navigates the barren road every second brings a beauty that negates the misanthropic thralls of my mind. I smile as I accelerate. Feeling all of the parts of me coalesce; dad, husband, and a little bit of lumberjack muddled in, as I own the road.


        Live big, love bigger, and be kind, always.

          Building a better home.

          Today is going to be an emotional day. I stood there looking into the room the ruckus of morning breakfast behind me down the hall, and sighed. 

          I built these beds for both of my kids with my own two hands. I found plans online and I modified them to help bring out some characteristics of each child. But today these beds come apart.
          The same hands that built the beds will now unscrew the screws. The wood will be removed from the room leaving a barren and empty. I’m almost certain that a war against the dust bunnies will be waged. In place of my two creations, a store-bought bunk bed will be put in. I have been dreading this day since the moment I clicked the purchase button for the bunk beds. I fretted over if I could just cancel the order and keep everything just the way that it is. But we are growing family in a very small house. We need space for things like a home office, crafts, and homeschooling of course.

          But having the ability to make things work, moving all three kids into one room, does not make this day any easier.

          There maybe someday down the road that my kids remember these beds. I want them to see that this decision to take apart something that I’ve gifted to them was not an easy one. but we often have to do things that are not easy. I’m sure they’ll be some pretty awesome memories about the time they will spend in a room together, all three of them. But for now I’m having a hard time letting go of the memories that we have created with just the two of them.

          Pictures we posted, hell I might even do a YouTube video just to help ease some of the pain that I’m feeling. Regardless, today is going to be an emotional day as I…

          Live big, love bigger, be kind, always.

          Day 31: The Most Reoccurring Setting in your Dreams

          Fitting that the last day of this series gets a little weird. You may not think that is the case, until after you read this.  Dream settings are fickle for many. Countless times we speak about what our dreams tell us, and many of those factors are based on the setting of the dreams.  I have listened to scores of people talk about their dreams. It is part of the nature of who I am, you know, the safe guy.  All of these conversations surmise to a simple point that I have always held close.

          Why does my constant dream setting have to be so different?

          Ever since my accident, when I lost control of a four-wheeler and it ran me over, ripping open the back of my head, my dreams have changed. I have a verbose memory of… things. I know that when I was younger, even just a few days before the accident, things were vastly different when I slept. There was light, darkness, color, faces, trees, and all the things that the rest of you are graced with.

          For the first few nights after the accident, I did not dream. I think that this is more than understandable. I was seven, and recovering from a VERY traumatic experience. However, once I started dreaming again, things were different. No longer was there shapes, people, or any of the cool stuff. My dream setting took a dramatic and exhausting change, forever.

          My Dream Setting

          The setting of every dream since that moment is a chalkboard. Or, at least I assume it is a chalkboard due to what it looks like. I see my dreams written out. Colors depict emotion, my writing style changes based on the age I am in the dream. There are sometimes sounds (thanks PTSD), but that is it. Gone are the movie like spectacles that many of you enjoy. The more that I dream, the more tired I am when I wake up. After all, I am reading ALL NIGHT.

          When there are others in the dream, friends, wife, children, and even random people, I am given their name in the narrative that is being written. But, the funny thing is, the writing is often what I ‘think’ the person may write like. I know, I am strange, but at least my love of reading has persisted since childhood. Else, this would be more exhausting.

          What is your most common dream setting?

          Just like that, the month is over. This was a fun exercise and I may do it again. But not for September. September is Cranio Facial Acceptance Month. This is a big deal for our family. My wife and I will be posting a new video each day on our vlog where we answer a different question that we are often asked about our daughters Craniosynostosis. Most of the blogs this month will follow suit.

          I hope that we can teach you a lot about what our life is like, and help you to know more about the world of cranio. We have learned that for as scary as it was to first hear, it has shown us we are stronger than we think.

          Live big, love bigger, and be kind, always.