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.

    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.

    Arghhh… back at work.

    I promise to post a longer update soon.  It is my second day back at work since #3 was born… and I still just want to be home to help.

    I am also working on a few cranio-centric updates as it is Craniosynostosis Awareness Month.

    Chaos is beautify exhausting sometimes.

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

    Me and my Beard: Why Having One as a Cranio Dad is Important

    Of all the things that I could write about, this one seems to be the most prevalent at the moment.  I have been involved in a few conversations about my beard as of late. I have been asked what having a beard means to me. I have also been asked for advice in ways to grow one.  Right out of the gate, this is NOT a sponsored post.  I have been using these products for a couple of years and have been willfully paying for them, and will continue to do so. This post is based on a testimonial that I chose to write for the company, and it was so darn good, I decided to put it here.

    I have tried time and time again to grow a beard, to no avail.  Having been in the military means that I have learned all sorts of ways to not grow one. But the desire was there. Then, I was given a reason to grow one.  My daughter was born in 2012 with Craniosynostosis, a condition that affects the sutures in the skull.  Though there was, and still are, many unanswered questions, one thing was certain.  My daughter was going to need to go though many surgeries on her skull, and they started when she was barely 8 months old. These surgeries cause her head to swell to the point that her eyes swell shut for up to a day.

    As a new dad, I want to do all that I can to take care of and protect my daughter.  I had a bit of stubble when she was born, and she showed an affinity for touching and caressing what facial hair I had.  So, I earnestly began to grow the manliest beard that I could.  There are rumors about beards providing secret powers for men.  I wanted to harness those powers. The way that I saw it is that if my daughter found comfort in my beard, then it needed to be there. It needed to be full, it needed to be something that she could find when she was in the hospital, scared and unable to see.

    Daddy and Zoey

    For her first two surgeries the beard I had… existed. It was thin, scraggly and patchy.  A good friend of mine sent me a link to a YouTube commercial that he thought was hilarious.  It was from the Dollar Beard Club.  Though it was amazing, it reached me at a time that I needed it the most. Never hearing about beard oil, or vitamins, I realized that this is what I was needing.  My daughter had more surgeries coming up, and I needed that unbridled power that only comes from a thick, full beard.  Seeing that the cost was what I could afford, I figured I would give it a shot.

    Gentlemen, the rumors are true.  There IS a power in a manly beard, and Dollar Beard Club helped me get there.  Now the days of patchy, thin, pre-pubescent facial hair are a thing of the past.  My daughter has found solace in the thick, soft, manly beard that I now show off day after day. My wife has become protective of my beard.  Not just because of the ways that it has helped my daughter, and her affinity for it, but because (though she did not like them before) she loves my beard now.  Even my son has been known to draw from the power of the beard as he reaches up and runs his fingers through it when he does not feel well.

    Headshot

    My daughter has had eight surgeries to date, and there are more coming as she grows older.  In that time, my beard will grow. It will flourish. So that when it is called upon, it will be there for her.

    Thank you Dollar Beard Club for providing me the gateway, the equipment, and the knowledge to harness this power.

    Now, if this makes you want to check out Dollar Beard Club, and it should, then follow the link below and find the awesomeness.

    Dollar Beard Club

    Death by yard work.

    I have come to the realization that I need to take a break from some of these side projects for a while.  There is much to be done around the Cranio Dad household that requires my attentiveness.  We are, after all, getting ready to add to our growing brood in just over three months!!!!

    Wait, what? Three months! I keep saying that time is evil as it keeps ticking while we are sleeping… but still.

    Anyway, there is a ton of clean up that needs to happen as this weird winter and even weirder spring has resulted in numerous volunteer trees, bushes, flowers.  I will say that we have the makings for 100 bonfires at this point. This is adulating I guess. Spend my days figuring out how and when I am going to be able to get home and take care of all the issues that are beginning to plague our home.  But, better late than never… right?

    01-killer-yardA

    *Edit- just to be clear, I am not talking about taking a break from blogging… just some of the other things that are consuming so much time.

    Buffy is back!

    Yesterday we received news that Buffy was done and ready for pick up!  I am not going to lie, it kind of made my day.  So, I opted to pick up my my daughters beloved stuffed animal on the way home from work.  I, personally, elected not to look in the bag to see how she looked until my daughter would see her.

    So, I picked her up, got home, and now I am going to let the pictures tell the story.

    IMG_20160523_180526835IMG_20160523_180546274IMG_20160523_180609517IMG_20160523_180557641IMG_20160523_180614372IMG_20160523_180622855IMG_20160523_180624787IMG_20160523_180626848IMG_20160523_180658147

    She was and is still so happy to have her Buffy back.  I am as well.  I was smiling from ear to ear as this happened as well as through the remainder of the evening while she carted her around everywhere.  As a reminder… Buffy looked like this before:

    IMG955676

    worn, torn, empty, missing an arm and nose, but not done loving.  I cannot believe the work that has been done to her.  I am floored as to how well she looks.  Having stuffed animals is important for many children.  For children who have craniosynostosis, there is an added need.  When the children have the surgeries that they do, more often than not their heads swell so much that their eyes often swell shut.  Buffy has been there for me through it all.  Since Zoey went through her first surgery, Buffy has been there.  She is taken back into the Operating Room with her.  Once she falls asleep, Buffy is placed near by, watching over her charge in an unblinking, unwavering way.  As soon as the surgery is done, they tuck Buffy back under her arm, so she is there when she wakes up.

    I cannot express adequately how happy it makes me to have been able to give Buffy on to my daughter, that Zoey has a love for Buffy that makes me simile, and that though she was loved to pieces… she is home and ready to continue her mission.

    Welcome home old girl, even if only for a day, you have been missed.