A quick update on all things

Things, as always, have been nothing short of chaos for the first half of this month. There are times that my beloved and I just want to kick back, relax, and breathe a little.  But, no, that is not how things are.

  1. I think that we were a little taken aback by how much the daily vlogs for Cranio Acceptance Month were going to wipe us out. It took us over a week to just recover from the grind.
  2. We were able to take a small vacation to the beach with the family. It was a much needed break. Kati and I were on the tail end of exhaustion. But it was so good to be able to see the family.
  3. I am preparing to run a rather large group for Dungeons & Dragons. This is extremely exciting, but there is so much work that goes into running a game. I have worked hard to update and reconfigure my home office to accommodate for game night. Now, I have a little over a week, to test all of the systems and prepare for awesomeness.
  4. Kati has been doing an awesome job for her role as an Usborne consultant. She has learned a ton, in very short time. Every party that she hosts is exiting. It does often mean that our conversations late at night are dominated by ideas, but I think it is cute and I love it.
  5. Zoey has lost her hearing aids twice in the last three weeks. Want to know what can stop everything in a household. Have a $2500 medical device go missing. These are critical because Zoey has been doing such an amazing job with her speech therapy. From the moment that she has put her ‘super ears’ in she has rocked it.
  6. Jacob is nearly walking. By that, I mean he is at 6-7 steps in a row. It is amazing to see the look on his face when he is walking around. His smile is amazing.
  7. Both Zoey and David are killing it with homeschool this semester. David is doing an amazing job with addition and subtraction. Both are starting to read. Considering that neither would be in school yet (Virginia law states that if a child is going to start, the must start by the year that they are six), I am ecstatic at what they can do.
  8. Last but not least, we were surprised to find out that our daughter will have her yearly craniofacial clinic in early November, rather than December. For those that read my beloveds post about cranio, this is when things get real for us. We know that there are more surgeries coming, we are exactly where they said we would be when forecasting when we would be discussing the next one. My heart… well, my heart resides in my children, but I do not know if my body can take the stress that I am feeling right now. I am sure that we will talk about that more once we know more.
  9. Seven years ago (last week) my beloved and I went on our first date. Time flies, make sure you live in the little moments.

That is all I have for you guys right now. Thanks for hanging in there on our crazy, chaotic, life. We are doing the best we can to…

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

Dear Craniosynostosis: A renewal of a letter

Three years ago I wrote a letter to Craniosynostosis. I was so proud to have it published in The Mighty. It is about a conversation that I have with cranio from time to time. Reflecting on what I felt, and how I feel now.  Today, I update it a little.

For Craniofacial Awareness Month, Kati and I have been posting vlogs answering questions about Craniosynostos. Every day on our YouTube channel, and even here on the sidebar. Yep, 30 questions that we have been asked, with answers that come from experience. Some of our conversation drummed up this letter. We decided that I would read this for one of the final vlogs this month. However, in order to do this, I wanted to bring it to the now. I did not want to leave it behind, collecting dust.

So, without further ado. Below the break is the updated letter to Craniosynostosis.

The Long Awaited Physician Survey

Some time back we posted a physician rating survey in preparation for Craniosynostosis Awareness Month. Well, here we are at the end of the month, and I am just now getting to where I have something that I can post. We learned a great deal in this exercise. Most notably, how NOT to do a physician rating survey.

We had over 100 submissions from all around the globe. With very few outliers we were happy to see many high ratings. It seems that there is a high regard for the physicians that are helping our little cranio kids. I had high hopes of taking this data, and creating something beautiful. Sadly, because of the way we asked the questions, this is not the case.

Looking forward, we are already in the works for taking what we have learned, and making something better. We really feel strongly in empowering other cranio families. We know how important the doctors we chose are. It is a decision that is, quite literally, life changing.  However, we must provide something for those that have submitted. Not only as a way to say thanks, but to show the baseline of what we are doing.

About the survey results.

So, below, you will find a link that will allow you to download the scrubbed results. We have taken out the identifiable data, and have combined results into fewer entries. We are not sure if this will help, but it is something. I am certain that we will remove this link in the months to come. Assuredly by the end of this year. But, keep your eyes out for a new survey early next year. One that will be easier for those filling it out, and provide better data on the back end.

Thank you, again, to those of you that filled this survey out. You are helping us create something awesome.

Also, for those that took the Craniofacial Acceptance Month Quiz, thank you. Your results will be out early in October.

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

 

Get the data here.

Craniosynostosis: A Response From A Dad

It is no small, strange thing, the feelings that come to the surface this month. We are forced to pause and reflect upon the path that our lives have been lead down over the last five years. All because of one long, scary, word that we did not know before our daughters birth. Craniosynostosis.

We look back and see what we have all endured. Kati and I, as we became parents. As we watched our daughter defy the odds that she was given, and face greater challenges than many of her peers. With every vlog, conversation, tweet, blog, and post, we have relived some of the nightmares that we barely made it through. There have been more solemn nights over this past month, then during the entire year that has lead up to September.

But, it is not all bad. Over the same time we have been able to look back at all of the accomplishments. We look out our window and see our sweet daughter climbing a tree, and hanging upside down. This child for which we were told may not walk. We listen to the laughter ringing through the house, and the stories that she tries to tell us. This child for which we were told may not talk. Granted, it is in a language that only we can understand, but we understand. We reflect on old movies and pictures showing each and every surgery she has been through. Breathing a sigh of relief we see how far she has come. This sigh is hesitant as we know not the road before us.

Though the fires that have hardened us, the mountains that have climbed, we have been made strong. We have found that our greatest strength has lied within our darling daughter. Resilience, repose, defiance, independence, all these and more are her forte. From her we have drawn much into ourselves. We thrive on the tears and laughter, always the laughter. The pain and discomfort that we feel with this time of recollection outmatched and outpaced by the revelry and ballyhoo of where we are.

Craniosynostosis, you are what WE make YOU.

But, in the stillness of the night, there are still the hard moments. The ones that draw out of us the words that no one else is saying. That compel us to write them down, exposing our fears to the world. Posts like this one, by my beloved, that floors me. We scream into the wind out of frustration, begging for others to relinquish their positivity, for just one moment. To be real about this world that we live in. To become better beacons of hope, real hope, for those that are sailing the uncharted seas with us. Especially to those whom have found themselves in the eye of the hurricane that is this world, per manum Dei.

We cannot live in fear of inadequacy. For all of us that are in this world of Craniosynostosis should have realized…

Our children have taught us better.

Live big, love bigger, and be kind, always

Day 31: The Most Reoccurring Setting in your Dreams

Fitting that the last day of this series gets a little weird. You may not think that is the case, until after you read this.  Dream settings are fickle for many. Countless times we speak about what our dreams tell us, and many of those factors are based on the setting of the dreams.  I have listened to scores of people talk about their dreams. It is part of the nature of who I am, you know, the safe guy.  All of these conversations surmise to a simple point that I have always held close.

Why does my constant dream setting have to be so different?

Ever since my accident, when I lost control of a four-wheeler and it ran me over, ripping open the back of my head, my dreams have changed. I have a verbose memory of… things. I know that when I was younger, even just a few days before the accident, things were vastly different when I slept. There was light, darkness, color, faces, trees, and all the things that the rest of you are graced with.

For the first few nights after the accident, I did not dream. I think that this is more than understandable. I was seven, and recovering from a VERY traumatic experience. However, once I started dreaming again, things were different. No longer was there shapes, people, or any of the cool stuff. My dream setting took a dramatic and exhausting change, forever.

My Dream Setting

The setting of every dream since that moment is a chalkboard. Or, at least I assume it is a chalkboard due to what it looks like. I see my dreams written out. Colors depict emotion, my writing style changes based on the age I am in the dream. There are sometimes sounds (thanks PTSD), but that is it. Gone are the movie like spectacles that many of you enjoy. The more that I dream, the more tired I am when I wake up. After all, I am reading ALL NIGHT.

When there are others in the dream, friends, wife, children, and even random people, I am given their name in the narrative that is being written. But, the funny thing is, the writing is often what I ‘think’ the person may write like. I know, I am strange, but at least my love of reading has persisted since childhood. Else, this would be more exhausting.

What is your most common dream setting?

Just like that, the month is over. This was a fun exercise and I may do it again. But not for September. September is Cranio Facial Acceptance Month. This is a big deal for our family. My wife and I will be posting a new video each day on our vlog where we answer a different question that we are often asked about our daughters Craniosynostosis. Most of the blogs this month will follow suit.

I hope that we can teach you a lot about what our life is like, and help you to know more about the world of cranio. We have learned that for as scary as it was to first hear, it has shown us we are stronger than we think.

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

Day 29: Favorite Cookie: Snickerdoodles

Oh the rollercoaster that is this list. But that is the flaw in not looking ahead, and only reading it once before posting it. But the fact that I limit myself to 10 minutes a day for this challenge, in and of itself should get me a cookie. Right? Well, even if it does not, let me tell you a little bit about my favorite one.

Snickerdoodles

There is an amazing fragrance that overtakes the kitchen as these wonderful cookies are being baked. The cinnamon and sugar as they amalgamate under the heat profuse into a scent that I consider heaven.  I can feel the salivation build as they are cooling on the rack. My beloved already knows that I will not mind the burn to take one a little early. Biting into the surgery goodness, feeling the reserved heat sear my mouth, it is awesome.

It is hard to beat a good snickerdoodles, and only the best are homemade. There is something severely lacking from any of the store-bought imitations that I have had in my life. Note, I am not saying that the ones that you can purchase from bakeries are substandard, just that pre-packaged nonsense.  Of course, it is almost always the case that homemade is better.

There is a small joy in sharing good snickerdoodles with my kids. Seeing their eyes light up, and a smile come across their faces is amazing. I know that I am leading them down a great path in only providing the best ones for them. Prior to them, sharing was not an option. However, now, it is a constant. There have been times that I have watched the excitement build as the snickerdoodles are baking in the oven. I share in their exclamations as the oven opens, we gape in pure joy, and we watch as they are transferred onto cooling racks.

I feel somewhere between a kid and a dad when this happens. It is so worth it.

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

A letter to my son, on his first birthday.

My darling son,

Jacob, my sweet little boy, yesterday you turned a year old. In the time that has passed you have grown so much. As have I. It is a strange thing, being a parent. As we scroll through the endless rants and raves on social media, one could arrive at the conclusion that being a dad is chaos. The long, sleepless nights. Endless bumps, scrapes, and falls each day. But, my dear Jacob, that is not how I feel, at all.

While many prostrate themselves as their sails deflate when a child is born. I stand resilient in the tempest winds, and unfurl my headsail. You have been born into a family of strength. We work hard, so we can play harder. Being tough is part of our nature. Because of it, we grow, together, in all that we do. We regale in each other’s successes (even the small ones), and we shoulder the burden each time any of us fall. Individually we are great, but together we are amazing.

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When you joined our family, you came in screaming.

But, as a glimpse into your awesomeness, you cuddled, and looked around. You are a brilliant ray of sunshine. Piercing any darkness that may encroach, you radiate joy. Even when you have been sick, or teething, you bring peace with you. Somehow there was an imperceptible niche in our family, which you exposed and filled. You make our clockwork run smoother.

It is my hope to be the dad that you deserve and need, which may be lightyears beyond what I am capable of. But, between you and your siblings, I have all the reason that I need to stretch myself beyond my limits. The three of you are persistent wind that fills my sails, driving me to greatness. But this greatness is not for myself, it is for each of you.

Happy birthday darling. And thank you for choosing me to be your dad.

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

Day 29: Five Weird Things You Like

We all have things that we do that no one else we know does. But how often do we think about the weird things that we do, and like? This one was a bit more difficult to write. Having this level of introspection is not my norm, publically.

French fries with mayo instead of ketchup

I know that there are scores of people that do not like mayonnaise. Even though you are wrong, I can be understanding. However, there is something amazing about boardwalk fries, salt, pepper, malt vinegar, and dipping it in mayo.

The smell of old books

I know, I know. MANY people like the smell of old books. But I had to put this one on here today. I like to live dangerously and smoke a cigar, while drinking scotch, all while reading an old book. The aged leather not only feels fantastic, but the aroma. Plus, there is the amazing smell that lies in between the pages. Something about the ink, parchment, glue, and time coalesce into something amazing. Don’t get me wrong, I love my Kindle and the 200+ books that I have on it, but I will still be expanding our home library as our children grow with fantastic, old, books.

Walking in the rain without an umbrella

This one provides some strange looks when I am out an about. It takes a downpour before I will pull out an umbrella. I have found that walking in the rain is far more calming without an umbrella than with. Being hands free, feeling the cool water cascading over me is refreshing. Since I run hot (my average body temperature is right around 100.9 °F) it always feels great. Though I am lacking the sound of the rain falling onto the umbrella, hearing the sounds around me more clearly provides solace.

Small, secrete, wins

In all things that we do, there are wins. Some are big, some are small. I love celebrating the small wins. I enjoy this not just for myself, but for others as well. Most notably my children. I think that there is something fundamental in celebrating the little things, which will go a long way in helping their self-esteem. Think about it, if you had someone on the sidelines cheering for you because you tried, what would that do for you. Now, let us amplify that by this person pointing out that this time, even if you failed, you did something better than before. Celebrating small wins requires observation, and investment, on all sides.

Watching the calamity as a Dungeon Master

No listicle of weirdness could be complete for me without a reference to Dungeons and Dragons. I love being a Dungeon Master. But that is not weird. If one is in the role of being the DM, and they do not like it, then they are doing a disservice to the other players. However, I REALLY love watching things unfold, when everything is going wrong. Low dice rolls, saying the wrong things, traps, all coming together and causing chaos. It is beautiful.

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

Day 28: Somewhere you would like to live.

Here is the thing, the answer to this question is miles away from the plans that I have been working towards. Perhaps that is what makes it someplace that I would like to live, instead of where I am aiming to end up.

Whitefish Montana

Look at this beautiful place.

With crisp autumns, cold winters, and mild springs and summers, this is a dream. Nestled between Glacier National Park and Whitefish Lake State Park this place is miles away from ordinary. Being able to look up at the endless sky would make me feel small, and yet accomplished. I have loved the time that I have spent in Montana, and this picturesque town strikes a chord with me.

Great hunting, fishing, hiking, camping, boating, and land are only matched by the solitude that can be found. They say a picture is worth a 1,000 words, so I will leave you with quite a few.

Live big, love bigger and be kind, always.

 

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