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.

MY WARRIOR KID

Zoey wasn’t given a choice to be a warrior. The moment that she was born our room was filled with doctors, nurses and specialists buzzing around. As a first time dad, the build up to the moment of our daughter’s birth had been epic. However, hearing the hushed tones of the support staff saying things like “what is this?” or “what are we going to tell the parents” as they surrounded her first crib, an incubator, shattered my soul. Or so I thought.

My Warrior Kid

The very first time that I walked into the Neonatal Intensive Care Unit, my daughter and I shared a moment. A moment that would define the relationship between myself and the warrior kid that I am blessed to have call me dad. Barely a few hours old, as I stood crying over her incubator, hand resting next to her head, she reached up. She took my finger in her little hands and squeezed. She was only a few hours old, but with that simple gesture my warrior kid was telling me “we’ve got this, dad”.

For nearly eleven days we lived in the NICU. I became familiar with words that I had never known and could barely say. Chief among these terms was Craniosynostosis. I would later come to learn, and acutely understand how this premature fusion of the joints in my daughter’s skull would make her different and change our lives forever.

Warrior Kid Staring Down Fear

Over the last five years, I have felt my heart stop and shatter 12 times as nurses have taken my daughter from my arms and lead her back to the operating room for a surgery. Many of these procedures have involved an amazing doctor skillfully removing my daughter’s skull, making 100’s of micro-cuts into it, and putting her back together again. I’ve sat next to her for days on end as she recovers in the PICU (Pediatric Intensive Care Unit), hyper-aware of each breath, listening to her cry, with the ceaseless beeping of all the monitors in the background. Zoey didn’t have a choice in being strong. She had to be.

It amazes me each day as I watch her climb trees, run, jump and play. She’s not letting anything or anyone, stop her from enjoying her childhood. For her, normal is different. But with love, joy, and true, deep strength, she shows the world that she’s not afraid. It is her embodiment of a warrior spirit that makes me less afraid. It’s a humbling experience to have your warrior kid give you the strength that you need to be their dad.

I, for one, cannot wait to show my daughter Thor: Ragnarok on blu-ray. I hope that she gets as caught up in the amazing story and vivid imagery, as I get caught up in her every move.  There’s a saying that I hear often and it always makes me smile. “Not all heroes wear capes”. Well, as you can tell from the picture, mine does. And I am thankful that she calls me dad.

EDITOR’S NOTE: I am beyond excited to have been given the opportunity to team up with @ThorOfficial on this amazing campaign. Though this is a #sponsored post, those who have been following our journey are well aware of the love I have for my daughter, Zoey, and her unyielding strength – her Warrior Kid spirit as you might say. For more information on the release of the Thor:Ragnarok blu-ray and digital download release, check them out on Facebook, Twitter and Instagram.

Finding strength in the moment

I stood there and watched, my heart barely beating in my chest. Her little legs stepping up onto the box. Amazed with her graceful, surefootedness, not showing a sign of the weight she was bearing. The once vibrant, now muted from use, frock covered most of her little body. Heavy with the lead inside, but undeterred by the little body under it. She silently listened to the instructions.

“Place your hands here”

“Move you head here”

“Bite down like it is a cookie”

She complied with them all. From my vantage, standing in the doorway, I could see the wild inside of her being quelled. Self-restraint. Such a strange thing to see in a five year old. But then again, she has been full of surprises since the moment she was born.

In a flurry the staff exited the room. Stoically she stood there. Her hands exactly where she was told to leave them. Frozen in that moment. The small room looked so much bigger then it was just a second ago. Just outside the threshold my body remained still and imposing. But my heart, it was in that room with her.

“I am right here, you are doing so good, I am so proud of you my little one.”

I spoke to her in my calm, metered tone. She smiled, just a little as to not hold her position. But that smile, it was for me. She knew that I could see it. Then, a moment later there was a whirring sound. The device began to move slowly around her head. Then there was… the cry.

“Daddy! No!”

I could hear the fear, and it tore through me. My heart lurched as it began to beat again. Adrenaline flushing through my veins with a fiery burn. The attendants shut off the panoramic x-ray machine and I rushed to her. She jumped into my arms, the added weight of the lead vest being only an afterthought. The smile gone from her face she held me tightly, I could feel the tears soaking though my shirt, into my soul.

She tried to be brave.

For her entire life my daughter, Zoey, has been showing the world how strong and brave she is. She has not had a choice in the matter. But being so little, and having a machine move around her head was too much. Heck, even I hate those things. But, it is also in this moment that she showed be what she does best.

Finding strength in the moment

While the x-rays did not happen the way that the doctors had hoped, something amazing happened in that room. My daughter fought all that was in her, casting aside every reasonable fear. She stood on that box, and she listened. In that moment, she dug deep and found her own strength. Perhaps she knew that it was in her, perhaps she did not.

In addition to this, she has, yet again, helped me find strength as well. It is a daunting task, this role as a parent. Further complicated by things such as Craniosynostosis, it is a real struggle some days. The worry and fears that I have about what the future will be like for her is, well, there have been many sleepless nights.

It is an odd thing to be in a position that my daughter is showing me that I can be stronger than I think. But it is reassuring that she is going to do so well in life, digging deep, and finding strength in each moment.

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

The Long Awaited Physician Survey

Some time back we posted a physician rating survey in preparation for Craniosynostosis Awareness Month. Well, here we are at the end of the month, and I am just now getting to where I have something that I can post. We learned a great deal in this exercise. Most notably, how NOT to do a physician rating survey.

We had over 100 submissions from all around the globe. With very few outliers we were happy to see many high ratings. It seems that there is a high regard for the physicians that are helping our little cranio kids. I had high hopes of taking this data, and creating something beautiful. Sadly, because of the way we asked the questions, this is not the case.

Looking forward, we are already in the works for taking what we have learned, and making something better. We really feel strongly in empowering other cranio families. We know how important the doctors we chose are. It is a decision that is, quite literally, life changing.  However, we must provide something for those that have submitted. Not only as a way to say thanks, but to show the baseline of what we are doing.

About the survey results.

So, below, you will find a link that will allow you to download the scrubbed results. We have taken out the identifiable data, and have combined results into fewer entries. We are not sure if this will help, but it is something. I am certain that we will remove this link in the months to come. Assuredly by the end of this year. But, keep your eyes out for a new survey early next year. One that will be easier for those filling it out, and provide better data on the back end.

Thank you, again, to those of you that filled this survey out. You are helping us create something awesome.

Also, for those that took the Craniofacial Acceptance Month Quiz, thank you. Your results will be out early in October.

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

 

Get the data here.

Craniosynostosis: A Response From A Dad

It is no small, strange thing, the feelings that come to the surface this month. We are forced to pause and reflect upon the path that our lives have been lead down over the last five years. All because of one long, scary, word that we did not know before our daughters birth. Craniosynostosis.

We look back and see what we have all endured. Kati and I, as we became parents. As we watched our daughter defy the odds that she was given, and face greater challenges than many of her peers. With every vlog, conversation, tweet, blog, and post, we have relived some of the nightmares that we barely made it through. There have been more solemn nights over this past month, then during the entire year that has lead up to September.

But, it is not all bad. Over the same time we have been able to look back at all of the accomplishments. We look out our window and see our sweet daughter climbing a tree, and hanging upside down. This child for which we were told may not walk. We listen to the laughter ringing through the house, and the stories that she tries to tell us. This child for which we were told may not talk. Granted, it is in a language that only we can understand, but we understand. We reflect on old movies and pictures showing each and every surgery she has been through. Breathing a sigh of relief we see how far she has come. This sigh is hesitant as we know not the road before us.

Though the fires that have hardened us, the mountains that have climbed, we have been made strong. We have found that our greatest strength has lied within our darling daughter. Resilience, repose, defiance, independence, all these and more are her forte. From her we have drawn much into ourselves. We thrive on the tears and laughter, always the laughter. The pain and discomfort that we feel with this time of recollection outmatched and outpaced by the revelry and ballyhoo of where we are.

Craniosynostosis, you are what WE make YOU.

But, in the stillness of the night, there are still the hard moments. The ones that draw out of us the words that no one else is saying. That compel us to write them down, exposing our fears to the world. Posts like this one, by my beloved, that floors me. We scream into the wind out of frustration, begging for others to relinquish their positivity, for just one moment. To be real about this world that we live in. To become better beacons of hope, real hope, for those that are sailing the uncharted seas with us. Especially to those whom have found themselves in the eye of the hurricane that is this world, per manum Dei.

We cannot live in fear of inadequacy. For all of us that are in this world of Craniosynostosis should have realized…

Our children have taught us better.

Live big, love bigger, and be kind, always

What Happens When You Don’t Want to Go Back?

There’s something interesting that happens to the way people respond to situations after we go through stuff. You know, the kind of stuff that no one asks for, but that of which everyone has some version. Stuff that shapes who we are and how we relate to the world around us. If I am talking about all the craziness our family has gone through with Zoey, September is that month for me in a nutshell. I’ve struggled with what to call it because different groups have different names for it, but here’s what I’ve realized this year about my personal relationship with cranio. For our family, and perhaps for other cranio families out there too, September signifies Cranio Awareness Month. It is a month where we hold our purple ribbons high with hundreds of fans behind us in educating the masses about the often hidden world of craniosynostosis. It is an important role, and we take it seriously. (I mean, have you seen our blog?) Additionally, September also signifies Cranio Acceptance Month, which is a harder pill for me to swallow. Should children with cranio be accepted for who they are? Absolutely! Have I accepted the change cranio means for my own family? In all honesty, that depends on the day for me. It is easy to become bitter when I am faced with real-life obstacles every day that many around me don’t have to worry about. It is easy to get angry when I allow myself to think back to the scariest of moments, during those procedures where my child was held unconscious so that her skull could be carefully removed and rearranged like a jigsaw puzzle. And it is easy to get depressed when I remember that, for all that has happened, the scary chapters in the story aren’t over yet. For Zoey we haven’t reached the “other side” of her procedures, because there is always at least one more in the distance. The general window of time we were given for her next cranio surgery is while she is 5 to 6 years old. Zoey was 5 last April…

What happens when September rolls around and you don’t want to go back? When remembering isn’t just remembering, because it is also planning ahead?

Friends, we are half-way through September, and it is Craniosynostosis Awareness Month. Our family is now mid-way through a brand new series of Cranio Vlogs, each of which answers a common question people have about Cranio. There’s a lot of good information in there, please check them out!

In case anyone is wondering why have I not posted about this until now, it is because September is also Craniosynostosis Acceptance Month. I blame not having time to write. But when evening comes, the kids go to sleep, and my laptop comes out, I am constantly faced with the inevitable truth that it’s not over yet. I don’t get to talk freely about cranio as something that happened back when Zoey was a baby. I understand the process in my head, but I am wrestling with it in my heart. It may not be this way for others, but for me it is much easier to accept the unknown and brand new. I love the adventure of new places and new experiences. Even when new things are hard, I still love the challenge. My cranio baby is 5 years old. She is an amazing kid, but cranio as a diagnosis not new anymore for me. It’s more terrifying than exciting, and I know every detail of what is coming. Sometimes knowing what’s happening is 100 times worse. I want it to be over, yet here we are facing it all over again. September is Craniofacial Acceptance Month. My daughter has craniosynostosis.  Every day she gives me reason to live big, love bigger, and 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.

Day 17: It Makes You Anxious When…

Anxious: experiencing worry, unease, or nervousness, typically about an imminent event of something with an uncertain outcome.

I would be lying if I said I never felt anxious. However, it is important to note that most of these moments have been in the last six years and 15 days. Why such an exact number? It was 2,207 days ago that my beloved and I found out that we were going to be parents. Since that very moment, after the realization washed away to jubilant praise, my propensity to feel anxious has increased, tenfold.

Upon numerous occasions my breathing has stopped, my heart as ceased beating, and time has frozen as the anxious waves crashed over me. Fatherhood is not for the weak of heart. Every time that Zoey has gone through surgery, I become anxious. All of the many first steps that David has taken, it is there. Every time that Jacob tries to walk, I can feel it trying to force my hands out to catch him. Every bump, fall, bruise, scrape, it is there. I would love to tell you that, over time, it gets better.

Anxious Is As It Does

I really would love to tell you that. Yet, every time that I feel like I am going to get a handle on it… we have a new member of the family going through it. Having three kids five and under means there is always someone learning to climb, walk, run, ride, run, and swim. Perhaps in about 18 years I will be able to breathe again.

But, here is the cool part, this is also part of what makes fatherhood so awesome. Understanding that these are the things that make one anxious, and powering through them. These moments that make my heart stop mean my celebration over each achievement is genuine. When I clap and cheer, picking up my child, they can see the exaltation on my face. So, I kind of dig it when I feel anxious. It usually means something awesome is happening.

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

5 New Things Zoey Has Been Hearing

We have been hearing a lot of new things in our home lately. Many of these are in direct response to Zoey’s most recent appointment about her hearing. A little over a week ago, Michael and I took Zoey to pick up her hearing aids for the first time. We had a few quick lessons in cleaning, caring, and placing them. The audiologist then handed me a ringing, bright pink bundle of tubing and casing to place on Zoey myself. Sidenote: sometimes I build myself up for the responses of my kids throughout the day. Often they aren’t nearly as excited about something as I am. This was not one of those times. I was truly not prepared for that first week at home with Zoey and her new hearing aids. Here are my favorite 5 things that I heard from her for the first time in those seven days.

5. I am now hearing noticeable distinction in her phonics. This month we are reviewing single-letter sounds with a new curriculum. Zoey has been able to recognize the differences between the letters for awhile. However, her version of many letters and short vowel sounds had been very similar. More recently, she is learning phonograms fabulously now that she is able to clearly hear them. For those interested, I will have much more to say about the language arts program we are using once we have made some more progress through the first book. Today we completed Lesson 10, and thus far it has been a huge success.

4. We have heard a much easier attempt at every letter in the alphabet. Twenty-five out of twenty-six letters are completely clear now, albeit after a bit of repetition.

3. I am usually hard-pressed to think of a time when she has used more than three intelligible words together in a sentence. While at the clinic, the audiologist gave Zoey a teddy bear with a cape and felt hearing aids at the same time as her own. Later that weekend, one evening she explained to me that it was, “Super Bear with Super ears, like my Super ears.”

2. She has discovered a new layer in real animal sounds (as opposed to imitated voices from story books).  My awareness of this new development first came when we were outside in our yard. The older two kids were climbing a tree in our front yard while the baby napped, and our border collie was keeping guard in the fenced-in backyard. This is a common arrangement of late, and even in her older age, our dog remains ever vigilant and loyal to her territory. We live in a dog-filled neighborhood, which means inevitably there is some sort of interaction going on every day, yet somehow the noise must have continually escaped Zoey until this moment. She stopped mid-climb to exclaim, “I hear Salem barking!”

and my #1 memory of Zoey’s first week with hearing aids…

1. Immediately after I placed a hearing aid for the first time, still in the audiologist’s office, I looked at Zoey once the little battery light started blinking. I asked if she could hear me better. She looked straight into my eyes (which rarely happens) and with genuine excitement exclaimed, “Mama! I hear you talking!” I think we were all a little teary-eyed for that one.