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.

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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?

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*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.

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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:

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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.

What is Craniosynostosis?

If you have not had a chance to watch this video where I try to explain what craniosynostosis is in such a way that many more could understand, please give it a view!  I am working on some follow up videos where I will tackle other aspects of cranio so any feedback that I can get now would go a long way in making the other videos even better.

Recovery day

I am staying home today to help with the recovery, and to get a ton done.  Zoey is doing great, looks like she took a punch to the eye, but still beautiful.  There is already a noticeable difference in the alignment of her eyes!

Oh, and this afternoon, we are going to have our first official ultrasound and find out what we are having!!! Boy? Girl? Unicorn? We are hoping for human… all else will fall into place.

OH, and if you did not catch this yesterday, I started vlogging.  I have a ton to learn, but check out My YouTube Channel to follow along there.