Dear Craniosynostosis: A renewal of a letter

Three years ago I wrote a letter to Craniosynostosis. I was so proud to have it published in The Mighty. It is about a conversation that I have with cranio from time to time. Reflecting on what I felt, and how I feel now.  Today, I update it a little.

For Craniofacial Awareness Month, Kati and I have been posting vlogs answering questions about Craniosynostos. Every day on our YouTube channel, and even here on the sidebar. Yep, 30 questions that we have been asked, with answers that come from experience. Some of our conversation drummed up this letter. We decided that I would read this for one of the final vlogs this month. However, in order to do this, I wanted to bring it to the now. I did not want to leave it behind, collecting dust.

So, without further ado. Below the break is the updated letter to Craniosynostosis.

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

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 14: An Item That Gives You Confidence

Let’s go way back. I mean WAY back. My first Christmas. It was 1981 and I lived in Boise Idaho. Understandably, I had no conceivable idea what was going on. To be frank, I do not remember this day. However, there is one thing from this day that I still have. Rather, it belongs to someone who needs it more, but we will get to that in a moment.

Buffy.

For 35 years this beloved stuffed dog has been by my side. Almost every trip to the hospital (usually for stitches) she was my bedfellow. Every illness, from the sniffles to croup, she was my comfort. Even as I grew up, she was always there. In fact, much to my own amusement, she deployed with me, every time. Countless hours have been spent talking through problems, dealing with heartbreak, and being my silent journal. The secrets I have spoken to her, will never be told.

But, she is no longer mine. When my daughter went in for her first Cranio surgery, Buffy and I had a long talk. I told her that she had gotten me this far, and needed to trust I could carry myself from here. The night before we went to the hospital, I was sitting next to Zoey’s crib, tears running down my face. I knew that Buffy did such an awesome job keeping me alive, and being there for me, and that my daughter needed her more. I left Buffy in her crib that night. All of my love, tears, joy, fears, my heart is embodied by this raggedy stuffed dog.

Buffy was no longer mine.

 

The next morning, Zoey had Buffy in her arms. When she was taken back to surgery, Buffy was in her arms. While I was writing This Room, feeling empty and void of joy, Buffy was right next to my daughter, because I could not be. Since that day, the bond between Zoey and Buffy regales the one we shared. Every trip to the hospital, Buffy is there. When Zoey is recovering from surgery, or sick and hating the world, Buffy is there.

It is my hope that long after I am gone, and Zoey has become the amazing and beautiful woman she is destined to become, that when she misses me, Buffy will still be there.

 

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

Still Frequent Customers

It’s funny how time and experiences change our perspectives. I remember the times when I used to post about every doctor’s appointment for Zoey. I posted about our questions, every medical procedure, many of the tests and treatments, and every so often, a few solid answers. My way of processing this sudden upheaval of Cranio to my organized and planned little world was to document all of it. List it, capture it, question it, follow prescribed treatment, and return for follow-up as needed. Lather, rinse, repeat. Move toward the bigger corrective surgeries, pass through the long days of waiting in a foggy haze, and continue with recovery. More tests, more questions, more plans. At some point it became our new normal. I was able to continue on with less hoop-la and without the intentional driving of a new Cranio Parent, at least most of the time.

The calmer season that follows the initial year or two of constant upheaval is very common for Cranio families. Many speak of it as being “on the other side,” particularly when they are fully treated for the remainder of their child’s life after a single, albeit heartbreaking procedure. I think this concept is a big reason why many personal blogs and pages devoted to craniosynostosis fall by the wayside once a Cranio baby reaches her 2nd birthday. The craziness has subsided and everyone just wants to move on with life as normally as possible. I get it, really I do! I am so thankful that regular life continues and the daily stress of this diagnosis doesn’t usually last very long. Granted, not all Cranio cases are quite as simple, with their medical folders gathering dust as children collect pencils and notebooks for school. We are among those who, even after 5 years, still have many questions concerning what our Cranio baby will be able to accomplish in her life time. We are learning that our answers will largely come only as Zoey tells us what she is able to do, and as we slowly stretch her limits and encourage her to reach higher. There are simply not enough others like her who have already been documented to set forth a regular pattern, so she is forging her own path in every area of life. Really, everyone must do this to some extent, but I find it interesting when even medical professionals refuse to lay any claims on a predictable path for her.

I am very grateful that the circus of appointments are less frequent these days. They still continue in spurts though, regardless of how little attention I bring to them. We have already faced Zoey’s 4th appointment of 2017 with her Pediatric GI surgeon. The novelty has long worn off, and the struggle is real to cart 3 kiddos under 5 through a hospital for an appointment and routine KUB X-ray. Zoey has some differences in her digestive tract that need monitoring occasionally, which may or may not be related to her Cranio diagnosis. When we do go, there is still a feeling a familiarity. Some nurses think Jacob is David because there is no way my second little baby is already 3 years old.  Others have crayons and paper on standby for Zoey.  I now force a big smile every one of the 3-4 times someone in our path comments on how I have “my hands full.” When I’m not stressed out, I really do love having a loaded up double stroller, complete with sticky fruit snacks in the cup holders and sweatshirts piled in the basket. It’s exhausting and demanding. Every so often I get it right, and I am so proud of myself for the tiny battle I have won. This includes a previous visit to the outpatient waiting room when Jacob pooped through two layers of clothing onto his carrier car seat while waiting in the stroller. It was an unexpected blow, but thank God I was ready for it. I had a complete extra outfit, a good supply of wipes, and even an extra burp cloth to lay on the clean, damp seat for him. I was just buckling him back in when the technician called Zoey’s name for her x-ray. You know, no big deal.

I have many more failed attempts than successes, but let’s face it: I want to scroll back through these days and remember that I got it right a few times too. So here is proof to Future Me: you know that one day at St Mary’s Hospital in the outpatient waiting room? Not all of them, but that one day? You rocked the 3 under 5 years old thing with the double stroller going solo that day. #focusonthegood

In light of all this, I’d like to revisit the bigger question of why it is that we are still actively blogging as a Cranio Family. First of all, my husband is thus far the only published Cranio Dad on social media. Go ahead and Google “#craniodad” and let me know if you find someone else. We would love to connect with him! I am among a few other moms who publically write about their experiences with Cranio, and a much smaller number who are still actively writing on their own pages after 2 years.  No one else is writing as a married couple that I have found, especially in regards to family living. We write together because we want to provide a more holistic view of family life when it is affected by Cranio, for the short-term and longer-term.

After 5 years, I continue to write about Cranio primarily because Zoey continues to surprise me, to encourage me, and to shine in new ways. Her story is unique and deserves to be told on a scale as large as I can offer to as many people as will listen. Her life speaks hope in a way that very little else can. I also write because our world needs to recognize more Cranio babies thriving as toddlers and students, and even into adulthood. So many social media stories stop after the scary skull surgeries. Yet most often there is an amazing collection of lives that continue on in an affected family. These families are forever softened to the once foreign diagnosis of craniosynostosis, and often to every other child with a complicated medical history as well. There is more to tell about how Cranio affects us, and I want to offer our family’s continuing story. Lastly, I write because others need to hear the positive stories lived in the aftermath of Cranio. Too many families are terrified of the vague unknown. Too many parents allow fear to change their family decisions so that they change jobs or don’t have any more children, regardless of what they wanted before their Cranio child entered their lives. I recognize that fear. I lived in that same fear for about 8 months after Zoey was born. I feared that I would never have the large family that I had always dreamed of. I feared that I didn’t have it in me to function as a parent beyond the demanding needs of Cranio. How could I handle it physically, emotionally, mentally? What if my second child had Cranio as well? I had so many questions, and the unknown was paralyzing. One of the most reassuring responses I received at that time came from a sweet daughter who is one of five children in her family. I think it was the second child who was born with Cranio, and their mom continued to have three more children afterward. This daughter’s response was so confident in speaking to my desires and fears as she commented, “Don’t worry, you will have more. It will be amazing.” I can’t really explain it, but I refused to let my fear of inadequacy cripple my dream of having more children once I was able to read such an affirming comment from this perfect stranger. I want to offer that same hope to others. I want to remind Cranio families that there is life after the diagnosis. There is family after the procedures. Despite how much our perspectives may change, the world continues to turn after the Cranio hurricane hits. Don’t let it crush you, but allow it to shape you into the next phase of who you become as individuals, and as a family. Don’t worry, it will be amazing.

 

 

    Love big: What would you do?

    What a week, and it is only Tuesday. I have been wracking my brain on if and how to respond to something for the better part of two days. Then, this article came across my desk, and all things came to a halt. We talk a lot about how we are raising our kids to live big, love bigger, and be kind, always.  But it is awesome to see other kids doing things that exemplify this.

    The long and short of the article is about Blake’s Big Heart. This boy, Blake Wainwright, is doing something awesome.

    Love Bigger - Blake

    “When Blake Wainwright’s sister was diagnosed with Craniosynostosis at four months old and needed skull reconstruction surgery, Blake wanted to do something to help the hospital that was helping his sister.”

    Blake is taking up the banner of a sibling, and showing nothing but love, bigger love than many.  In just a few years he has raised $4,000 for UNC Children’s Hospital, where his sister has received care for her Craniosynostosis. $4,000 from a boy who is now eight years old. Let that sink in a little bit. An eight year old boy is raising money for the hospital that is taking care of his sister, because he wanted to do something to help.

    Love Bigger: Why is this important?

    In light of all the things going on in the world today, this story is the reminder of all the love that is out there. Ladies and gentlemen, what Blake is doing is rare. There is a lot of people out there that stand with mouths agape as they face things like Craniosynostosis. But Blake is showing us what it means to love bigger. Here is a link to his Facebook page if you want to stop by, give them a like, and tell him how awesome he is. After all Blake is showing us all how to…

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

    Trailblazing in the dense woods, watching others leave.

    Part of being a trailblazer often means doing something unique, and strange.  But, that is where I find myself. Trailblazing as a dad who openly discusses what it is like when you have a child with cranio. Also, talking about how it has changed your view on fatherhood, and enhanced your skill set for your other kiddos.  Trailblazing is not for the weak of heart.  When it comes to cranio, trailblazing is all I know.

    Google News, various medical journal subscriptions, and scholarly articles often fill my inbox letting me know that out there, somewhere, cranio was mentioned. Many times, these are the things that I read first thing in the morning.  Let me tell you, there is not much of a better way to start your day then by kicking back and reading a medical journal where they talk about the statistical skull geometry in pediatrics for the basis of development of anthropomorphic test devises to aid in recovery.  But, then again, I could just be weird.

    This article came across my feed this morning, and something about it struck me.  After reading it a few times, I realized, that there is a glaring subtitle that MANY in the cranio community have grown far too accustomed to.

    “Doctors had previously told eighteen-month-old Finley’s mom that his condition was nothing to worry about.”

     

    Let that sink in.

     

    A mother, goes into the doctors, worried about her little one, and is told that there is nothing to worry about.  This happens, not just for cranio, many times. The idea of parental intuition is a WHOLE different topic, for another day.

    In many ways our family was extremely lucky when it came to Zoey being born with Bicoronal Craniosynostosis.

    The midwife on duty just happened to be the only one on staff that had just happened to have delivered a child with cranio a few months prior in Australia.

    We just happened to be at a hospital where one of the top rated craniofacial doctors just happened to be working.

    Oh, and just happened to be at the hospital that day, just a few floors up from the NICU, and just happened to be free when the midwife contacted her.

    The same midwife who just happened to know of this doctor in the hospital based on a conversation about the baby that she delivered in Australia.

    This doctor just happened to be able to get to the NICU (even before I could) to see Zoey, and instantly was able to diagnose her cranio, have it charted, and begin all the things that were needed to get us where we are today.

    We also just happen to be followed by a team that has rigorous open communication, briefings, and a lack of rotation.  This means things like for the first five surgeries that Zoey had, we had the SAME anesthesiologist, the SAME nurse, and many of the SAME people in the room. This means that a phone call and an email were sent to our selected (by chance) pediatrician (we love this guy, really) so he had answers to his questions from another doctor before we even saw him. Just so he could focus on her care, and our questions as well.

    We have been blessed.  Very blessed.

    Many are not granted this scenario.

    They spend months looking for answers.  Saying the same things to countless people wearing scrubs and white coats, all with the same look in their eyes.  Until, it just so happens, that they come across the one person who knows. There is a large sigh of relief as they begin to take the steps that many knew were coming, but were just waiting for someone to show them the way.

    Regardless of how we started down the path that surrounds Craniosynostosis, and not paying mind to the fact that all of our paths are different (hey, we are all in the same forest at least); there is often a battle cry that arises from our lungs.

    We want more people to know about cranio, so countless others do not have to spend months (or years) in the briars blocking the path.  Granted, none of us would choose to be on this path. However, there are some of us out there trailblazing so others have a clearer path.

    And then, there is a stark and enraging thing that happens.

    For many, they are able to have a single surgery, and they are on the other side.  Their lives go on as though nothing is wrong, and their voices grow silent.  I have seen countless mom-blogs go radio silent within months of their single surgery. Many accounts are deleted or completely re-purposed within 18 months. I am not saying that the mother in the article will cease on her mission.  In fact, I hope that she carries on the banner and makes great strides in raising awareness. I see having her story told in an article in Cosmopolitan as a huge step in that mission.

    However, I have been trailblazing for awhile now.  As much as I hope otherwise, I will, instead, suggest that it is far more common for her voice to grow silent over time. Honestly, I get it.  If we were in the position where we only needed a single surgery to repair Zoey’s cranio, we too may have been able to move on with only memories.  We may have been able to move significantly past every tense moment, the times in surgery, the times in recovery, the endless research. For us, and for Zoey, this is not the case. Perhaps that makes us special. Perhaps that is what makes us the trailblazing family that we are.

    Too often crowded social spaces are full of the battle cry, only to have the resounding voice grow dimmer and dimmer.  Frequently there are those that find these groups when they need them. They find comfort, they find peace, they find direction. The speak of doing great things to raise awareness, only to grow silent over time. There are a few, like us, that stick around, and answer call after call for help. But the fact remains, that many have left.

    This is why I am trailblazing.

    Yes, I am still here. My deep, resonant voice has been echoing in a room often not occupied by other men for almost five years. Trust me, I am constantly on the lookout for other dad bloggers openly discussing craniosynostosis. I have yet to grow weary in my attempt to carry the banner of awareness. For me this means helping professionals understand what cranio is, and what it looks like. This is so that when they see it, they know what to do.

    This also means exposing what life is like for us, as a family.  Showing  what my daughter has been through, and what she continues to go through. Just so others out there looking for answers can find them here.  I have yet to falter in speaking. I have yet to lose my desire for teaching all those that I come across.  Watching countless others wax and wane in these woods has been, interesting.

    But I am not finished.

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

      What are the different types of of surgeries (currently) that are used to correct Craniosynostosis?

      We have done a fair amount of research in all matters relating to craniosynostosis.  Having a child born with the condition quickly opened oureyes into the world of cranio.  We have pulled from sources such as Seattle Children’s, Cincinnati Children’s, and our own experiences with our daughter.  We did our best to compile some explanations of what the surgeries are, what they entail, and when to expect them.  Click any of the links below to learn more (they are listed in order by age of the child). The ones with * are ones that Zoey has been through.

      *Strip Craniectomy

      Endoscopic Strip Craniectomy

      *Posterior Cranial Vault Distraction

      *Fronto-Orbital Advancement

      Le Fort III Advancement

      Monobloc Frontofacial Advancement

      Le Fort III and Monoblock Advancement by Distraction Osteogenesis

      Le Fort I Advancement, or Upper Jaw Advancement

      Mandibular Osteotomy

      Final Facial Contouring