Putting Fear in the Fearless: Tales of Failure as a Father

Yesterday, my world stopped, and a fear arose. I am still shaking off the ghost of what happened. Sleep has not gone well.

This weekend was a long and busy one. On the list of activities was getting together with my Dad, stepmom, and family.  We wanted to hang out, and have the kiddos go swimming at the hotel. So, we packed up and headed to the other side of town. The overcast, rain-laden clouds hung heavily in the sky, however, this did not affect the interior of our minivan as we traversed through the city. The littles knew we were on our way to see Grandpa and Grandma.  Their conversation was peppered with comments about pizza and even the word “pool.” As for Kati and I, our conversation was more softened about the busy times we have found ourselves in.

We arrived. Like a heard of animals we descended upon the hotel’s atrium. There, family and pizza boxes awaited. The boys took over a table to snack, juggle children, and play cribbage. Some of the children wandered over asking what we were playing. Smiles flippantly appeared upon all of the dad’s faces, it was about time to pass this game on to the next generation. Such a stoic torch, one that has been passed throughout our family for longer than many of us know.

After some pizza, and cribbage, the locals were getting restless. It was also at that time that some of the other children needed to go home for naps.  So, the gaggle was reduced to our three and one of my nieces.  My brother stayed to hang out with us, and to see if his daughter wanted to swim. So, a quick change into swimsuits was had. There is something amazing about the sound of little feat running down long halls. The heavy padded carpet making a thud, thud, thud that reverberates as the base, below the trill of their voices. The anticipation and excitement crescendos with each and every spoken word. I am thankful that it was mid-afternoon. This lessened my fear that anyone could be sleeping. We opened the door to the small indoor pool and all worked to contain the excitement of the children.

I hopped in the pool.  Like children looking at a puppy both Zoey and David circled around the pool, they wanted to jump in. They listened. Many of the methods that I have learned, and those that were added by family swim lessons at the Y took hold. I watched as they both sat down, feet dangling in the warm water.  My children don’t fear the water.  Heck, they do not really fear anything. They know that they are strong, I know that they are resourceful, and my fear is that they are fearless.

When it comes to water, I have a long history. I have been on swim teams since I was a teenager.  Though not the fastest, there was a passion. This passion still exists today. I would rather be in a pool swimming endless laps over a short sprint on a track, any day. I took scuba diving for credit in college… because I wanted to. Since then I have used my certification speeding time floating in the endless abyss. As a result, I have learned not to completely fear, but to respect the water. Most of all, I have learned that things can happen in a second that can change your life, or even end it.

Much like looking to the stars and running barefoot in the grass, I have been working with my kids on learning how to swim. Teaching them that some fear is good, and a ton of respect is better. We have taken family swim lessons, and have plans for more. My comfortable relationship with water is something that I want to pass on. For both its power and its beauty are mesmerizing.

I pointed to Zoey. She stood, hands exactly wringing themselves. I counted, using my fingers, to three, and with a high-pitched, gleeful scream, she jumped to me. We laughed, and giggled. I moved her back to the side to hold on. As she was climbing out, I pointed to David.  He stood, and I could not see any fear, just the contained excitement shivering through his little body.  I counted, using my fingers, to three, and he leaped into my arms with a scream of joy.  For what seems like forever, this rotation continued.

Eventually we ended up in the shallows. 3 feet deep, stairs with a rail. I looked and there was the rest of the family. My niece was playing in the shallows, showing me how tall she was. My dad and brother were playing a game, while Kati and my step-mom were chatting (Jacob in tow). Meanwhile, my two wanted rides.  So, I started with Zoey. David sat down on the steps, holding onto the rail, as we had practiced. With a whoosh I was off with Zoey. As I made it to the middle of the deep end, I turned to look… and my heart stopped.

David had decided to stand up, his foot slipped, as did his hand. He was in water over his head. His arms began to flail, he tried to call out for help. My son was drowning.

 

fear has come

 

Fear gripped me like a vice, and my heart stopped.

In a flash I jerked towards him, arm stretched. I needed to get to my boy. Zoey was on my back, arms around my neck. As I made this move she tightened. My scream for help, for anyone on the side to help my boy, it was cut off as her little arms held on for dear life.

He just kept flailing, and bobbing, struggling to float, trying to breath. I tried to lunge towards him again. Fear riddled me as I tried to reach my drowning son. One arm outstretched, with every tendon and fiber reaching for him in vain. I tried to scream again. My chest pounding against my daughters little arms wrapped tightly around my neck. I reached up to pull Zoey’s arms off my throat as a blur came from the right of the pool.

In the wake of it all, by pure chance, my brother happened to look at me. He saw the look of horror and fear on my face. Following my gaze, he saw David. He leapt to action, and leapt into the pool.  He pulled David up and held him close as I finally reached them.

In that moment, all were on their feet. My brother placed David on the side of the pool, he sat there coughing and crying as we flocked to him. I have never been so happy to see a coughing little boy in my whole life. I reached out for him as tears filled my eyes.

My heart began to beat, slowly. But the fear remained.

I hugged him, looked in his eyes, asking over and over again if he was ok.

“Oh-tay daddy” he replied, over and over again.

Finally, after a few minutes, many tears, and some towels, we continued our play, though a bit more restrained than before.

Now we watch and make sure that there are no signs of Dry Drowning. This is something that all parents should be aware of, and never experience. It will add a whole new level of fear regarding the pool for your kids. Long and short of Dry Drowning is where some water enters the lungs. It causes some swelling that limits the oxygen exchange, and has the same result (and effects) of drowning. It can happen with a delay up to 24 hours before the person shows any signs that it is going on. Though rare, it happens. We, as parents, should know about it, and fear it. This is especially relevant as summer is near. The time of pool parties, and swimsuits eagerly is ahead of us.

Fear be damned, today is another day.

But, as I said, I cannot shake the ghost. As a result, I fight to get sleep. While I lay there, exhausted, I see those moments over and over. Almost as soon as I close my eyes, I am taken back. I watch it playing from a birds eye view. I consequently rip myself apart. How did I let myself get so far away? It does not seem like it was that far. It is because of this that I will fight to be a better dad. But, since I know myself well enough, I will also never cease chastising myself for not getting there sooner.

Most of all, I will never cease being thankful for my brother jumping in. My brother is a hero. Seconds matter, and in those seconds, he jumped in.  Nicholas, if you read this, know that I love you, and that I owe you. I will never thank you enough for jumping in to help my little boy. You said it was no big deal because I would have done the same, and I agree with you. But it is a big deal, to me. Thank you Nicholas, a thousand times, thank you.

Later that day, when I was talking to David about what had happened, and that I was scared, I could see that he was too. When I told him that I loved him, he looked at me. His beautiful eyes filled with love and he replied,

“I love pizza”.

Finally, all was right with the world.

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

Dear Zoey: A Long Overdue Letter For Your Birthday

My Darling Zoey,

This is a long overdue letter for you about the event of you turning five.  Please look past the few days that have past. You know, all too well, that things have been busy at home.

My little bit, I cannot believe that this day is here.

Time has flown faster than the speed of light since the moment you were born. There is a strangeness in this time.  For as fast as it has gone, I remember so much. Going back to the moment that you were born. Seeing you, this little, beautiful bundle of joy, and hearing your first cry. There was the long walk down to the NICU which felt like a lifetime in the moment, and a lifetime ago all at once. I often look back at this photo and feel my eyes begin to fill with tears.

Zoey in the NICU

I see you, my beautiful princess. Your smile, your little hand wrapped tightly around my finger. You had every reason to be angry in those days, hooked up to machines, getting poked, prodded, scanned and tested. Instead, you were happy. On your very first day with us you showed us how strong you are, and how joy can conquer every situation. We bonded. Instantly. Like a brilliant supernova cascading a radiant glow across the universe, you brought love forward.

Over the last five years we have sat through countless surgeries. I have seen this room more times than any should, knowing that once is more than enough for most. But each and every time, when you are done and back in my arms, you are at peace. We have laughed and watched countless movies while in in the PICU. I have told you fantastic stories to help you take your mind off the pain that you have felt.  All in some effort to cry out and take the pain from you, onto me.  You know that I would do this for you, if I could. But I know that you do not need me to. It is humbling to be your dad. To know that you can handle all that you are facing, with joyous grace.

Zoey and Jacob

As these years have passed you have become the ever doting big sister to two little brothers. The love and compassion that you have for them is visible to all who meet you. Just like the love that they have for you can be seen in their smiles.  You have loved the idea of being a big sister, and you take this title seriously. Far more so than I thought you would, and it makes me so proud.

Zoey and David

That is the thing that is the most important for you to know Zoey.

You make me so damn proud. In all that you do, with all that you have been through, and all that you are going through, you are resilient. You are one to follow your heart, but you listen to your brilliant mind along the way. You are beautiful. My sweet daughter, I will never grow tired of reminding you of how beautiful you are.

It is going to be an amazing adventure to watch you as you continue to grow, to see the woman that you will become. I do think that we get glimpses into this future you from time to time. But today, you are five. An age filled with exploration, learning, and fun. Just do not grow up so fast my little one. I will continue to do all I can to let you be a kid. To fight on your behalf. Using my deep and resounding voice to speak up for you. All while you hold onto my finger the same way you did when you were but a day old.

Zoey and her nails

Happy Birthday my sweet Zoey. May you continue to live big, love bigger and be kind, always.

Love,

Dad

Thoughts on the movie Gifted: A spoiler free review.

As a point of clarity, I was not asked to write this review in exchange for the tickets to pre-screen Gifted.  I am writing this for you, because it matters.

Last night I was offered an opportunity to pre-screen the movie Gifted. In true form, my beloved bride and I turned this into a date night.  Things have been crazy for the last few months, so we made the best of it. We both got dressed up, had a babysitter lined up (thanks Mom) and headed out. Leaving our three kids under the age of five behind, we entered into the night.

It is an interesting thing that happens when parents get some time without the kids.  We talked about our little ones, and how things were going. We stopped by and grabbed a bite to eat.  One thing that was noticed was that there was a frequency of checking our phones.  No, not checking Facebook, Twitter or the like.  But making sure that we did not miss a text asking us to come home.

As the sun was setting we parked in the theater. We made our way in, and found seats.  We had watched the trailer a few times, and were equally excited to watch the movie. However, we were a little unsure as to what was to come. From the moment that the movie started, this capriciousness subsided.

From the moment that the movie started, we were hooked.  The characters were equally engaging and understanding. We found that we were able to identify with both the protagonist and the antagonist, throughout the film.  What unfolded before us was a beautiful story.  Much like picking up a good book, we were engrossed.  We were invested in the plot. Again, like a good book, with each turning of the page something awesome was revealed.

Yes, there were tears. In fact, there were points that everyone was in tears. Parts of this story strike deep into the visceral component of parenting, of love, of trust.  But, these sullen tears were balanced with amazing storytelling as well as fantastic, jovial, laughter. Time did not matter for this movie. From the opening screen to the rolling credits, everyone was hooked. There was not a single moment where we felt the actions on the screen were filler, everything mattered.

Gifted Movie Picture
Mckenna Grace as “Mary Adler” and Chris Evans as “Frank Adler” in the film GIFTED. Photo by Wilson Webb. © 2017 Twentieth Century Fox Film Corporation All Rights Reserved.

As the movie ended, and the audience departed, we silently walked to our car. We made our way home, discussing the movie and what it made us FEEL.  We realized that if this were a book, it would make sense to have been written by the seven year old.  But not in a bad way. In a way that resembles the way children tell stories. Depicting the events as they unfold, starting with the big stuff, and then giving the backstory… because the backstory matters.

We made it home, took a deep breath, and walked in the door. The baby was fed, and I hugged the two little sleeping toddlers, kissing their foreheads and telling them that I loved them.

What are my final thoughts on the movie Gifted? What can I say, without spoiling it for all of you?

It is simply this.

If you are a parent, go see Gifted.

If you are an aunt or uncle, go see Gifted.

If you are a teenager, and cannot understand what your parents are doing, and think that you could do things better, go see Gifted.

If you are a grandparent, cousin, person, go see Gifted.

Gifted is now, nearly, at the top of my list for movies. The acting was amazing. The story will not leave you for want, but is full of emotional depth that grabs at your heart, and soul. We are planning on buying it the moment that we can.  Perhaps there will be another date night in our near future.  If there is, you can almost bet that we will be watching Gifted, again.

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.

Updates, Updates, SOOOOOO many Updates

We are STILL getting caught up on everything.  It does not help that we are at the busiest part of the year.

We have started the slew of birthdays for our extended family.  We average one a week for the next two months. Seriously.

There is also the garden, that is starting to come along nicely.

Plus there is the general building, fixing, creating, making, that we all do.

I also have some projects that should be starting soon, and I still need to share my most recent.

 

Life, all-in-all, is awesome! We are not complaining, but we hope to get back to all the things soon.

 

Thanks for hanging in there and helping us…

 

Live big, love bigger and be kind, always.

Dance in the Storm: A tale of how Fatherhood is changing

I spent the better part of the night before I left to attend Dad 2.0 Summit filled with excitement. My son and daughter gleefully put on music and took my hands so we could dance.  Filling my soul with all the joy and laughter that it could take.  I knew that I needed it to sustain me. How could I justify flying across the country, leaving my wife and three kids (all under the age of five), to go to a conference that talks about being a good dad? My hope was that it would be found in these moments pre-flight.

With a final kiss goodbye, I slid the door closed and walked into the airport. It only took two steps for me to physically feel that my heart was not with me.  Behind me, in that minivan, the one with the three crying children and teary-eyed wife, that is where my heart was.  As excited as I was to be heading to Dad 2, I felt empty and alone as I walked through the airport. Something was lacking. Stressful as it may be to travel with kids, I missed having to chase them down. Usually I would be focused on my kids as we waited in the endless TSA line. Instead, I stood there, alone. I missed it so much, that it angered me. I felt a fiery heat rise in the void that was created when my heart was left in that van.

“Real fatherhood means love and commitment and sacrifice and a willingness to share responsibility and not walking away from one’s children.” – William Bennet

All of it, all the angst and torment, was directed at myself. Angry for getting on this plane. Torment because I missed my kids. But, woefully I moved on.  I thought of the excitement that lay before me. I was going to be surrounded by other dads talking about what they have experienced, and what they are working through, as dads. This summit is a chance to have open, honest, raw and vulnerable conversations about the thing that we all love more than life itself, being a dad. There is much laughter, joking, and even crying about some of the things that we have gone through. There is so much acceptance and support for every single dad there.  It is kind of beautiful actually.

Over the last five years I have discussed the state of fatherhood. I have written about some of the hardest things that I have ever had to do. I have written with raw and visceral emotion about every time that my daughter has had a surgery.  Pouring out the feelings and encapsulating the moments while waiting for a team of surgeons to open her skull, re-shape it, and put it back together like a jigsaw puzzle. I have expressed every question, fear, and worry as many dad’s do not.  Open and exposed for the world to see.

On the other side of things, I have written about the things that have brought so much more joy than I thought possible into my life. Taking every single milestone and event as viewed through the eyes of a proud father. My pride being a banner for the world to see, and a model for my children to learn. Never shy of showing my joy for these things. Yet again, standing on the outside of ‘normal’ fatherhood.  Unashamed of showing my feelings for my amazing kids.

The same amazing kids that I just walked away from.

The void which my heart left in its wake, quivers with sorrow as I board the plane. I miss them. My God do I miss them.  Holding onto the memories of the dance gives me peace.

Why do I do this? Looking at my stats, usually with a stiff drink in hand, I can tell that my prolific writing is not just for solace, or confirmation. My reach is far narrower than many of the people that I will meet at this conference. I wonder how many know of the endless nights that I spend working though self-doubt, and creative enlightenment in ways to expand my reach. Of the countless drafts and plans that I have worked through in an effort to better tell this amazing story of my journey through fatherhood.  Then I wonder that if they did know these things, would it matter?

In my last five years of being a dad I have been fortunate enough to be surrounded by some prolific storytellers, who just happen to have kids. They write and shoot videos, often tongue-in-cheek, about their adventures into this great unknown we call parenting. They do not dance around the difficult topics. Instead, they face them head on.  They have been some of my best teachers, and dearest friends, as I have pushed myself to write more, do more, show more.

As the summit carried on, one thing resounded in the general buzz of the atmosphere.  With all the ideas and accolades, there was the same sorrowful voice about how much we missed out kids. I held fast to those memories of my kids and I dancing, without a care in the world. Those memories that I crammed into my soul before leaving.  In a flash, something begin to happen. Over the crowd I could hear the music wafting through the air, mixing with the distant sounds of my children’s laughter.

It was so surreal.  I could feel the carpet under my feet and the hands of my children in mine.  I could feel my body wanting to dance with them, as though they were there.  In this moment, it hit me. There was something that says more about the current state of fatherhood then I thought real. There is something about this dance that is now screaming as an epic moment of realization. So, I do what I have done for five years and I write.  I glide my lyrical brush across time and space to make sense of it all.  Removing layer after layer of dust to uncover something for all of us to see.

The very moment that someone becomes a dad their lives are changed forever. The act of entering fatherhood means that our lives are sent careening down a torrent path filled with the ominous unknown. The twists, turns, rises and falls are consumed with moments of fear, doubt, joy and often moments so hilarious that we can do nothing but laugh. We have to make decisions very early on that forever alter our children’s lives. Ironically is a decision that most of us make absentmindedly.

Holding onto my children’s hands as we dance in the living room, something was happening. As I replayed the moment over and over again in my head, I began to see.  This moment has something hidden deep in the steps, the motion, the dance itself.  Tightly wound like my son’s hand on a Popsicle stick, or my daughter’s on a piece of chocolate, so tight that you cannot see it, and surely it would break.

In a flash, it becomes clear.  Brilliant like the sun on a summer’s day. Bright like the full moons reflection upon a still pond. This thing buried deep with the dance all centers on a single decision that we all make at that very moment we become dads. A decision that shows the importance of fatherhood as a whole, but also how the idea of fatherhood has changed.  The simple act of dancing with my children exposes a question that many do not even know they answer.

How do we raise our children to be better people then we are?

As dads, we have the obligation, not the choice, of making a decision on how to raise our children. We can raise them in such a way that forces them to fit into a mold that, in-turn, fits into our lifestyle or point of view. We could constrain them to the perfect little thoughts and dreams that we have had for them since we found out that they were on the way. Society, and all of its morals and ideals could crash into our voices, masking reason with what society feels is right and good. Or, we can get uncomfortable with the unknown, and let our children become who they want to be.

Our decision, and my choice.

As for my wife and I, we could raise our children by any of these ideals. Instead we raise our children with the motto: live big, love bigger, and be kind, always. This means that we place value in living with honor, choosing to love, and the importance of being kind. To me it doesn’t matter who my kids might grow up to be. I just want them to grow up, slowly, and be happy with who they become. I have learned that it should not matter who they want to be. What does matter is that I exhaust all efforts for them.  That I let them explore this crazy world around them. Ensuring that they find what makes them happy. Above all else, encouraging them to go after what makes them happy.

What matters is it that I cheer them on in every possible endeavor. To do this not just from the sidelines, but right there with them. That it is more important to cast aside my ideals, and help them explode onto this world, and leave a mark that THEY are happy with, not the mark that I hope they make. To show them that inclusivity STARTS at home, at our dining room table. That love and respect is a requirement, not some gracious thing they should do.

Fatherhood In Practicality…

There’s something awesome about being a dad. You must force yourself to take a step back from it all. Look past the unknown and see the brilliance and beauty behind it. If you let yourself just being your children’s cheerleader, their champion, and their springboard, there’s so much greatness that you have the ability to witness. There will be times when things don’t go their way, and all you have to do is be there for them. They will be things that they want to do that do not even remotely fit your mold.

I’ve been watching my oldest son over the last couple of days and I see something that would terrify most. He would make one damn good ballet dancer. Looking back, not too far, I would find myself doing a plethora of things.  Spend evenings outside with him tossing the football with him in hopes of him becoming a defensive end like his father.  Enrolling him in sports, wood-shop, welding and other things to entice the engineer side that I have seen in him.  Excite him with Lego’s and building sets to have his mind shift to constructive creativity.  However, fatherhood has changed. I have gleaned so much from my dad, as well as the other dads at the Dad 2 summit.

Instead of doing those things, what is it that I do?

I dance with him.

And he loves it.

Perhaps even more than I do.

 

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 an awesome day!

Today we took our family to a craft and sewing expo.  Yes, you heard me correctly. And you can tell by our kids faces in some of the photos below that we all had an awesome time.

I was given a heads up from DadSews that he would be at a booth.  We recently had been given my mom’s old singer, and I have been watching the DadSews videos on YouTube since they started. DadSews is now sponsored by FabricHut and I am excited to see more from him as they are posted. That being said, follow the links above and check him out! Give it a like and subscribe if it suits you.

We were blown away by all the amazing pieces, even came home with some patterns, and endless ideas. Most importantly, being able to see the excitement on my kiddos face as we went aside to asile. I am not kidding when. I say that Zoey was dragging me to keep up with her excitement ALL DAY.

Some Photos of the Day

When I say amazing pieces….




I mean, my camera does not do these ones any justice. Nor did I take all the pictures I thought I did…..

But one it did capture is Zoey and I using an awesome Juki sewing machine at the Fabric Hut booth.

We planned to go for a couple of hours, were there for just under four, and have already planned to go back next year, my beloved with plans of amazing things.

It is shocking how much we all got out of this trip. I will be on the lookout for more expos of this nature, and we shall adventure.

Live big, love bigger, and be kind, always

It’s been a wild and crazy time!

Things have been good. Real good. Our little family is quickly adjusting to being a family of five. Five, how wild is it that we are here already?

The littles

Zoey loves having two little brothers. She is too funny. One minute she is a wild child, dancing, singing, climbing, and running through the house.  The next she is a little mama hen, doting over her little brothers, making sure that Jacob is covered, and David has food. David is understanding his middle place, only in number, not in love. Considering that he is two going on three, I think that he is doing well. Sure, there is some clinging, some tantrums, and a fair amount of testing of limits.  But I continually see him use the wild streak in him for good.  As for Jacob, what do you expect from a 4 week old? He is eating, sleeping, pooping, and growing.

Oh, why did I say “4 week old” instead of a month? Frankly, he was born on the 29th. To me, he will be a month old on this coming Thursday. Trust me, the months go away somewhere between 18 and 24 in our home.

Us

My beloved and I are doing well.  Or as well as two sleep deprived, mildly stressed zombie parents could be expected to do.  We are forever thankful to all the love and support that we have been receiving over the last few weeks. We have the appearance of having it all together, and we do our best to keep up that appearance. As life moves back into a rhythm, so shall our sanity return.

It has been a wild ride, and the ride is far from over. But regardless of the up and down, we love this crazy, wild life that we live.

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

Well, it finally happened. A tale of my shortcomings

In the age we live in, with rapid access to endless things, it was bound to happen. I just thought it would be some time before it did.  I also thought that it would happen when I could have a conversation about it with my little ones.  But sadly, that is not the case. Let me walk you through what just happened.

I walked in to the family room to find my son and daughter, mouths agape, staring at the television.  I turned to see what was captivating so much of their attention, and my heart sank.  Quickly, I reached over and took the remote from my son, and turned it off as the reality set in.

My mind raced with questions, for which I knew there was no answer.

How did he get the remote?

How did he find THAT channel?

I thought they were asleep, what are they BOTH doing up?

In a flurry I knew I needed to talk to them about what they had just seen, no matter how difficult it would be for their minds to comprehend. The hard part would be talking to them about what just happened, and not showing my emotions.

Is this real life?

I explained to them that what they were watching was on TV.  That what two, consenting, ‘adults’ do in front of cameras for millions to see, is not always real.  They were projecting fantasy. They want the viewers to feel that this is how they always are. I told them that in my time on earth, I have learned that what they had just seen is not always real.  They looked up at me, with big eyes, and smiled. I changed their focus with two chocolate chip cookies, and the promise of an amazing bedtime story. They excitedly ran into the kitchen to devour their prizes before heading back to bed, and I collapsed onto the couch.

How did this happen?

How did I let my guard down?

What kind of father lets this happen?

Depressed, I turned the television back on, to change the channel from what they had been watching, and turned off the presidential debate in favor of something more appropriate.

What? Did you think my kids were watching something else?

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