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.

It is nearly here: Dad 2.0 Summit, building a community

“Without a sense of caring, there can be no sense of community.”- Anthony J. D’Angelo

Before I knew it, the calendar changed, and the time to pack had come.  List of stuff and things flew through my mind at a breakneck pace, and began to create a whirlwind around me.  But in a moment, it all stopped, and came resting down on the ground.  There was something missing, something that I had allowed my excitement for this journey to block my view. In that moment, it became clear what that was. Fighting the desire to fall in tears for the enormity of what I had missed, I moved forward.  I moved past all the stuff, the things, the lists and scooped my children up in my arms.  We laughed, we played, we hugged, and we kissed. And life became our chaotic sense of normal again.

Tomorrow I will be leaving to begin the first leg of my journey to the Dad 2.0 Summit.  This will be my second time having the honor of attending. It is no small shock to me that I have the same level of excitement as I did last year.  There is very much the feeling of Christmas, of family, of community. Last year I went only know a few of the dads in attendance. Furthermore, I only knew them by our on-line interactions. Coming away from the summit last year, I left with friends.

I met some of my hero’s, and proved the adage horribly wrong.  I met knew people, and received a great deal of guidance on my next steps.  There are a few that I have hung out with over the last year.  We have been able to expand on our experiences, and broaden our sense of community. There are many that I have spoken with frequently.  There have been ventures that we have entered together, and learned a lot along the way.  Ultimately, it made me a better father.  This community made me cognizant of what I am doing, and what I plan to do.

But in the hustle and bustle of getting ready to go to a social media conference, I was sacrificing time.  Time with my children, and my wife. Time that this community of dad’s has shown over and over again is of the up-most importance. It has also made me painfully aware that my children are another year older (plus we have one more, so there is that). That in a blink of an eye a year has passed.  That time is truly ever moving.

All of this being said, I am eager to meet with some of the friends that I have made since last year.  I am looking forward to the adventure that Kia has afforded us the opportunity of as we drive from Las Vegas to San Diego.

By the way, selfless plug here, you should be following the hashtags #KiaDad and #NiroDads to make sure you can see the hilariousness as well as have a chance to win some awesome prizes.

I am not looking forward to what tomorrow will bring.  To watching my family drive away as I enter the airport.  To missing even more time with my amazing kids.  At least, and this is no small thing, there is the community of dad’s awaiting to gather.

Live big, love bigger, and be kind, always

And so the trip preparations begin….

​Just got the suitcases down for my trip to #dad2summit. David walked in… The following conversation happened:
D: what you doing daddy?

Me: I am getting ready for my trip this week kiddo.

D: Daddy trip?

Me: yes little man. I have a trip this week on a plane. I will be gone a few days, but I will be back soon.

D: me go on plane with daddy?

Me: no little man, not this time. Just daddy.

D: (walking out of the room) I go with daddy.
About a minute goes by. I walk out of the bedroom to find David walking back down the hall twords me…
Me: All done for now little man, let’s go…

D: *big smile* let’s go! I go to airport with daddy.
🙁
Did not realize until that moment that while David was gone, he had put on his coat and shoes…..
This is going to be a hard week.

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.

Fatherhood: to carry on the conversation from the Vlog

Fatherhood has to be one of the toughest things I have ever embarked upon.  It is also the thing that brings me some of the greatest joy.

Important Note:

IF you have not seen the vlog that this post pertains too, stop what you are doing and go to the link here:

Vlog

And spend less than eight minuets getting to know me a little better. I will be referencing things that I spoke about in this video here, and context may be important.

Ok, back to what I was saying:

Now that you have watched the video, let us continue on with the conversation.

Right out of the gate, I want to thank those of you that have been following along for the last few years.  Our journey has been rather unique, to say the least, but I hope that you have seen that I try to make the best of it.

I guess that I could roll up the topics into a few points, and discuss them a little further here.  Please bear in mind that we are still figuring out how things are going to work with our Blog and Vlog, so let’s see how this works!

Fatherhood:

From the beginning, my adventure into fatherhood has been overwhelming. Not many parents have the ‘opportunity’ to get to know their child as well as Kati and I did.  With all of the tests and conversations that surrounded Zoey (many still do to this day), we had the opportunity to get to see how her bones were developing, how her brain looks, and much more.  However, looking back, I see that I had a choice that I had to make early on.  I could either embrace Cranio, and all that it brings into our lives, or I could live in fear of it.  Out of the shear love of my daughter, I faced cranio, and have embraced it.

It is interesting to realize that in these (almost) five, short, years the ways that I have learned to be a dad.  I saw a quote the other day that stated motherhood was natural and fatherhood was a social construct.  Now, I could fly off about the wording of that quote, or, I can point out the flaws.  Simply, the social construct that surrounds fatherhood is a carryover from the 50’s.  There are currently so many working on changing this view. I, proudly, am one of them.  The concept of fatherhood needs an overhaul, just as much as does the concept of what makes a man.

Soapbox moment (sorry):

The topic of fatherhood makes me emotional.  For some of you, it was plan to see in my video.  There is a love that burns like the fire of a thousand suns for my children.  Fatherhood has placed my heart on my sleeve, and I am not at all worried about it. Far to often the voices of dad’s goes unheard.  This is based on the social construct that dad’s have little to do with raising their children.  They just go to work, come home, and help.  This social construct surrounding fatherhood does not stand in MANY of the households that I know of. It surely does not hold in mine.  It is part of my journey of fatherhood to show this to my children. To have my daughter know what to expect, and my sons to know what is expected.

 

How has it made me a ‘damn good dad’?

I really do mean what I said in the video regarding not taking the title of “Cranio Dad” lightly.  For all the ups and downs that I have been through this far, Fatherhood has been a grand adventure.  I have been able to take so much about what I have had to learn to be the kind of father that Zoey needs, and apply it to how I am raising David and Jacob.  By ensuring that there is equal 1:1 time, that I focus on the activities that bring them wonder, and by getting to know them, I am taking all the steps that I can to be the dad that EACH of them needs.

Needs vary greatly, and every child is different.  One of the biggest things that I learned as I entered fatherhood is that we need to pause, as parents, and wait to see who each child is going to be. That is the hard part, and also the avenue to produce the greatness that we strive for as parents. Waiting. Letting our little ones show us who they are, what they like, what interests they hold dear. It sucks, but I would rather be their champion than their absent-minded coach. Perhaps that is why I feel I am doing my best to be a damn good dad.  Because, even though I do not take fatherhood lightly, but I look at it differently than most.

Well, that does it for now.  As we keep saying, please feel free to continue this conversation with us.  Subscribe to our blog for daily snippets, our vlog for more conversations, and comment with your thoughts.  We want to hear what you think, even if it differs greatly from our point of view.

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

*taps mic*

Is this thing still on?

 

 

Hey everyone!

We have been super busy, but things are going well.  Soon, very soon, more posts will be coming!

We also have a vlog now… because sometimes video is better.

Check out our channel on YouTube at:

https://www.youtube.com/channel/UCCf-OtnYosKRFbPt8TyymwA 

 

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

Take a tour, win some cash! It’s a giveaway!

Welcome to the soft opening of our new blog!  We are celebrating with a Giveaway!

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If you dig a little you will see that we are still working diligently on categorizing five years worth of posts. We are also tinkering with some new ideas.  In light of that, we invite you to look around and tell us what you think. In addition to our heart-felt gratitude, your opinions will earn you a chance to win a $25 Visa Gift Card!

If there is one thing that we have learned in the last five years, it is that we need to seek feedback from you, our readers. That is exactly what this soft opening is all about. You! For the next few days we invite you to look, ask questions, and make suggestions.  Tell us what you love, what desperately needs help, and what should be tweaked a bit.  We want to do our best to ensure that we are giving you the content you enjoy, in a format that is most appealing.

How do you win?

Starting the morning of 12/01/2016 and ending at midnight (EST) on 12/04/2016 you can comment on the entry below.  You can comment once a day, and each comment earns you an entry!  You can also follow either of us on Twitter for an additional entry.  Finally, you can ask others to review our page as well. Each person who enters that you have invited will earn you another entry!

On 12/05/2016 a winner will be drawn at random and notified.  We will reach out to the winner via email or social media to get their address and then will send them a $25 pre-paid Visa Gift Card!

Most importantly, between 12/05/2016 and New Year’s Eve we will take all of your ideas into consideration to see what we can make happen.  Our plan is to go live with a united, Brand New Blog on New Year’s Day with ANOTHER contest! So, please subscribe and keep up to date with all we have going on. You won’t want to miss it!

Thank you so much for your time and your input.  We are very excited about what we have in store for you, and we hope that you are too.

Cranio Family Blog Sneak Peak

 

What did you do over the weekend?

I, for one, would like to note my disdain for this question. It is not the idea that people actually care, or want to know more. My disdain is purely based on the fact that this is the first question that is asked EVERY Monday morning. It is impossible to sum up the entirety of my fatherly awesomeness into a brief exchange at a water-cooler.  But, I do my best to recant the task or task(s) that I completed.  The fact that all that we do is captured somewhere on social media, should lift up the fact that others ask the question at all. But, that is enough of my philosophical conundrums for this beautiful Monday morning. It is also a horrible way to lead into what I did over the weekend.  That’s writing for you.

This weekend we saw the typical warming weather take place that we often see here on the eastern seaboard. We took advantage of the opportunity and tried to get as much done around the house as we could. One of the projects that was on my list was to build a task board for my kiddos. Zoey had a little flip-chart with magnets for her tasks that my beloved created on the fridge.  It had simple things that she needed to do each morning on it, and there was immense joy when she was able to flip each task to done.  David, always eager to keep up with his big sister, also wanted something of the same nature.

With the weather being nice, and the time free, I went about making it happen. Though it required a few extra trips to Lowes, I am happy with the outcome.

img_20161016_081715

I also took apart a cheap clock from Wal-Mart and used highlighters to segment the ~12 hours my kids are active into the three parts.  The colors correspond to the colors of the boards.  There are four tasks on each of the three boards.  We try to pick things that are a mixture of what they already do, as well as something that will challenge them. The boards come off and the current time color will always be at the bottom.

So far, the kiddos love it. There will be some coaching that needs to happen for the next few days, but they get it.  It may help that when they complete each board, and hand the cards to my beloved or myself, we give them a Hershey’s Kiss. There is more to come on this project. The end goal will be that for each day that the kiddos complete (understandably) all of their tasks, they will get a sticker. Six stickers and they will each get to pick Mommy or Daddy and that parent will take them out to dinner or lunch for some one-on-one time.

Some photos of me completing the task

I am excited to see how this will work out for our kiddos. To watch them learn time management, how to read a clock, and responsibility is going to be awesome, and a bit of a nightmare.

What else did I do this weekend?  Well, we knocked out grocery shopping, set up a swing set that our neighbors gave us (pictures to come), cleaned the house, and I worked on Dungeons and Dragons stuff (lots of DnD stuff). There is also the countless cuddles, laughed, diapers, messes, tears, tantrums, screams of joy, and screams of anger, and wrestling matches that make up most of what we do on the weekend. All-in-all, it was a great weekend were we all spent time learning how to…

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