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

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 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.

Find Solid Ground: Why it is important to keep looking up.

“Keep your eyes on the stars, and your feet on the ground.” – Theodore Roosevelt

In my short time parenting and even longer time on earth these words have a complex meaning. They are so complex that we can either draw power from it, or be broken by them. Ultimately the decision is ours, but deep in the ground, the foundation for this decision has been laid by the generations that have come before us.

We have had the joy of experiencing life with a five year old for just over a week now. It is interesting how, almost overnight, she has grown so much more independent. Zoey has long been a little helper. Ever since her feet hit the ground she has been helping load the dishwasher. That is, when she is not running, climbing, dancing, or doing summersaults. But there is something magical about turning five, and we are experiencing more and more of it each day.

When Zoey was born, we did not even know what five would look like. We heard the word Craniosynostosis, and our idea of time, and its general movement was wrenched to a stop. Like a Hollywood movie the film on the reel that we had planned snapped, and spun around. Facing countless surgeries, time in the hospital, and therapists, I just felt my heart break.

Ground and feet

All that I have ever wanted for my children, is for them to be kids. To experience life running barefoot in the grass in the summertime. Dancing in sprinklers while eating homemade ice-cream. Building snow forts and having epic wars. The more time that we spent in the NICU, the more that all of this felt like a dream.  Much like a dream, I felt it slipping through my fingers as I fought to wake up. Then, a moment came that would change everything.

After spending 12 mornings and 11 long nights in the NICU, surround by amazing doctors and nurses, we were finally getting ready to go home. We had been trained on the things that we needed to know in order to take care of Zoey.  Most notably how to insert the 12 inch long nasogastric tube into the nostril of our wriggly and strong newborn, push it down into her stomach, and tape it to her. All so she could eat. I did not sleep that night.  I spent the whole night scared out of my mind, and packing what things I could.

Ground view of Zoey's feet

After many, many trips to our tiny car, taking all that could be spared, it was time. We stood in the doorway, waiting for rounds. This wait felt like it took forever. Suddenly, the curtain was pulled back, and we saw so many familiar faces. Those whom had helped us get started on this journey.  But, there was one that I did not recognize, a new attending. We listened to the briefing, most of which we were all too accustomed too by now. Our hearts began beating faster, and then came to a stop.  The new doctor commented, that “It looks like Zoey did not gain any weight as expected, let’s give it another day”.

In that very moment, such a level of brokenness filled me that I could feel my heart ache. But, there was something deep inside of me that rushed against the tide, aching to burst forth.  As the doctor turned to walk away, my wife began to sob next to me.

I stepped forward, my shoes resonating with military precision upon the ground.

“No.”

This little word shuttered through the crowed of trained professionals like a lightning bolt. They abruptly stopped, straighten up, and turned, wide-eyed. Fumbling though the chart in his hand the doctor looked up in astonishment.  “Mr., um, Von Bank, is there a problem”?

The pompous, indecisive tone that the doctor had brought whatever was inside out, full force. In a deep, calm, resonate tone I replied.

“Sir, I do not know you, and you have never even met my daughter. However, for the last 11 nights I have been here. There are nurses standing all around you that can attest that I have been here and helped with every feeding, and diaper change, that has taken place. My wife and I have been trained by some of these amazing nurses in the extra care that our daughter will need to go home. However, I think that you missed something. Last night, for the first time, there was a change in plans. Something happened and the nurse was called away. Upon her arrival Zoey had already filled her diaper, and was miserable. We elected to change and weigh her before feeding her as we have every night before. Zoey was so happy that she ate more than ever after being weighed. I ask that you take another look at her chart, then look at her.  We will not be staying another day”.

Defiantly, I stood my ground and awaited his reply.

I watched as he fumbled some more with her chart. I could see that he was containing rage, and embarrassment. After a short few seconds, I could see that he found the notes. Defeated, he looked up and said “Mr. Von Bank, you are correct. My apologies. Nurses, please prep Zoey for discharge this afternoon”. He hurriedly turned to walk ways, as I stood there vindicated. Zoey’s chief nurse, the one that had been with her almost the entire time, winked at me with tear filled eyes. She mouthed the words “Good Job” as the troupe walked away to the next room.

That was the moment that it all changed.  I embraced the title of Cranio Dad, but more importantly Zoey’s Dad. I became a voice for the voiceless.

Five years ago today, at this very moment, I stood firmly on the ground. I spoke for the dreams that I had for my daughter, and the hopes that I had for myself as a dad. With my feet planted, holding my daughter, I looked to the stars, and found a way to steal them from the sky. To this day, five long years later, I have never stopped.

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

    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.

    The Importance of Video for our Children

    We live in a state where technology surrounds us.  It is a part of all that we do. Quicker access to take pictures, and video, of our daily lives seem trivial to some.  But, as we are getting back into the swing of things, this state is not lost on me. In fact, I noticed something last night that made me pause. Something awesome.

    In the middle of archiving a video that we shot a few weeks ago, I decided to watch it. Normally, I do not do this. I just drag it to the archive, wait for the prompt to finish and move on. But, I double clicked, and it played. Having some time, I decided to sit back and watch the video play.  I listened as my beloved narrated the scene, and watched as Zoey and David played.  Their laughter filled my ears.  I listened as Zoey ‘spoke’ with David about the tower they were building. Upon hearing this, I was startled. I sat up and rewound it. Playing it over and over again. With each repeat of Zoey’s ‘speech’ a smile broadened upon my face.
    Zoey building a tower for the videoDavid getting ready for a video about building a tower

    Why did Zoey’s ‘speech’ on the video cause me to pause?

    I reference Zoey’s speech abilities with quotes here because, well. Let’s talk about that for a second. Due to the structural issues that Zoey was born with, due to her Craniosynostosis, things like eating and speech have never come easy to her. We have been thankful that David, since very early on, seems to be able to understand her, perhaps even better than we do.

    But that is the thing. Kati and I can often understand what Zoey is trying to say. We live in this world where many around us look to us with a perplexed smile as they wait for us to decipher.  We roll with it. But, we often lose sight of the advancement she is making.  Watching this video, I realized that in just the last few weeks some astonishing advancements have been made.

    It caused me to reflect to the other night.  After cleaning up the dishes from dinner, I handed Zoey a bowl of ice cream. As I stepped away from the table a sweet sound came from behind me.  My daughter saying, clear as day, “thank you daddy”.

    Why the video we take is important to us?

    The videos that we are capturing are not for vanity. They are to show us the steps that our children are taking. They are moments in time, forever captured, to show where they are.  Down the line, we can reflect at where they have been, and see the huge strides they have made along the way. These videos are the archive of our successes, and failures, as we teach our children how to…

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

    A new day, a new fear arises.

    “Courage is resistance to fear, master of fear, not absence of fear.” – Mark Twain

    A new, and great, fear that just came across my inbox, is the potential changes that are being discussed for Medicaid.  Five years ago, I would have paid it no mind, but now I have no choice.

    Though nothing is final (let alone 100% confirmed) there has been talk about changing Medicaid to a block grant system.  This would (potentially) reduce the funding that states receive, and heavily effect medical waivers. How can this be? After reading the article in Disability Scoop “With Talk Of Medicaid Changes, Waiver Services May Be At Risk” (Link HERE)  I find myself, yet again, typing in a flurry.

    My daughter receives the amazing care that she does thanks to a medical waiver for her Craniosynostosis. There are countless ways (too long to discuss here) that her waiver has helped her, and our family.  It was also no easy task working through the waiver. Not because my daughter does not qualify, but because the system was a little broken when we first tried.

    After many months, and moving out of a county which we will most likely never move back to (#grudgeholder), our fighting paid off and a waiver was granted. The sigh of relief has yet to cease from this moment. I broke down in tears over reading the letter letting us know Zoey was now covered. Not figurative tears, full on, fall to my knees, hold my baby, rocking back and fourth tears of joy.

    So, what am I going to do about it?

    First and foremost, I am going to pray.  My prayer is for clarity and discernment for those having these discussions. This includes myself.

    Second is that I will continue to speak.  My journey has been to create a place of light, support, and strengthen.  I am unwavering in that.  I also realize my place as a voice for the voiceless.  Even though my daughter is making leaps and bounds in her ability to speak, my voice has yet to grow tired.

    Finally, I will research and fight when needed. As I stated, this is not something that is confirmed will happen.  There is a good deal of, shall we call it, “early information” that seems to be making its way to news desks. More needs to be known.  If, as more is known, it becomes clear that this may happen, I need to make my voice louder.  Exactly how, that remains to be seen.

    For nearly five years I have fought too long and very hard for my daughter to have a ‘normal’ life, to have a pen stroke take that away…. armor up, it is going to be a heck of a fight.

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