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

What Happens When You Don’t Want to Go Back?

There’s something interesting that happens to the way people respond to situations after we go through stuff. You know, the kind of stuff that no one asks for, but that of which everyone has some version. Stuff that shapes who we are and how we relate to the world around us. If I am talking about all the craziness our family has gone through with Zoey, September is that month for me in a nutshell. I’ve struggled with what to call it because different groups have different names for it, but here’s what I’ve realized this year about my personal relationship with cranio. For our family, and perhaps for other cranio families out there too, September signifies Cranio Awareness Month. It is a month where we hold our purple ribbons high with hundreds of fans behind us in educating the masses about the often hidden world of craniosynostosis. It is an important role, and we take it seriously. (I mean, have you seen our blog?) Additionally, September also signifies Cranio Acceptance Month, which is a harder pill for me to swallow. Should children with cranio be accepted for who they are? Absolutely! Have I accepted the change cranio means for my own family? In all honesty, that depends on the day for me. It is easy to become bitter when I am faced with real-life obstacles every day that many around me don’t have to worry about. It is easy to get angry when I allow myself to think back to the scariest of moments, during those procedures where my child was held unconscious so that her skull could be carefully removed and rearranged like a jigsaw puzzle. And it is easy to get depressed when I remember that, for all that has happened, the scary chapters in the story aren’t over yet. For Zoey we haven’t reached the “other side” of her procedures, because there is always at least one more in the distance. The general window of time we were given for her next cranio surgery is while she is 5 to 6 years old. Zoey was 5 last April…

What happens when September rolls around and you don’t want to go back? When remembering isn’t just remembering, because it is also planning ahead?

Friends, we are half-way through September, and it is Craniosynostosis Awareness Month. Our family is now mid-way through a brand new series of Cranio Vlogs, each of which answers a common question people have about Cranio. There’s a lot of good information in there, please check them out!

In case anyone is wondering why have I not posted about this until now, it is because September is also Craniosynostosis Acceptance Month. I blame not having time to write. But when evening comes, the kids go to sleep, and my laptop comes out, I am constantly faced with the inevitable truth that it’s not over yet. I don’t get to talk freely about cranio as something that happened back when Zoey was a baby. I understand the process in my head, but I am wrestling with it in my heart. It may not be this way for others, but for me it is much easier to accept the unknown and brand new. I love the adventure of new places and new experiences. Even when new things are hard, I still love the challenge. My cranio baby is 5 years old. She is an amazing kid, but cranio as a diagnosis not new anymore for me. It’s more terrifying than exciting, and I know every detail of what is coming. Sometimes knowing what’s happening is 100 times worse. I want it to be over, yet here we are facing it all over again. September is Craniofacial Acceptance Month. My daughter has craniosynostosis.  Every day she gives me reason to live big, love bigger, and be kind always.

Back into Tumbling

This morning was Zoey’s first Tumbling class for the Fall. She was literally leaping with excitement as soon as we got there. It’s funny because it seems to be the cool thing for students to complain about how teachers make them work so hard, and how they can’t do what is being asked of them. Yet there was Zoey, a good head shorter than the rest despite the similarities in ages, and she was ecstatic to be doing her exercises. Her only complaint during that entire hour was that I was looking at my phone instead of watching her perform her handstands. Today I was reminded of how I am so proud of her for many reasons, including her strength inside and out, her amazing ability to keep reaching out to make friends regardless of how they respond, and her infectious zeal for life. Don’t worry about the complainers, Zoey. Keep doing your handstands. I’m putting down the phone next week. Remember to 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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Day 27: A Quote You Try To Live By

Oh this one is too easy. For over a year I have been ending every post with the same quote. It is what we are trying to instill in our children, and the guideposts that we have on our own life. Today, I will dissect it a little bit more than I have in the past.

Live Big

This could mean a multitude of things. It is a matter of perspective. But, as a part of the total quote, and in the eyes of my family, it means something rather specific. For us, it is a total detraction from what many think. This quote does not mean to have the nicest car, largest house, or flashiest bank account. Living big means to make the most of what you have.

In order to live big, you must know where you are. It is difficult not to outlive our means in this world. But there are amazing thing that we can do, to enhance our experience and time on this big blue marble. As the kids grow, there will be hiking, camping, canoeing, and sailing as they expand their horizons. Living big means being able to make it, on your own, and help others along the way.

Love Bigger

Much like living big, loving bigger is about knowing what the baseline should be. The mere fact that the adjective is a greater form than the one used for big, is important. The use of ‘bigger’ means that it should be far more evident, this love that you emit, than the life that you live. It should be ‘bigger’ than yourself.

Love like this cannot come from a place of seclusion. It comes from a raw awareness of the world. Understanding the hearts of those around you lets you amplify the love that you can bring into this world. It is also more demanding than living big. Living requires solace and self-awareness, while loving means letting yourself be open to the harshness that can exist.

Be Kind

If one is living big, and loving bigger, they should be able to be kind. You have to be cognizant of so many things. Being kind requires you to treat others BETTER than you wish to be treated, regardless of what they say or do. It is that aspect of this quote, which makes it the hardest.

All these things we try to do always. It is not meant to be an easy thing to do. It is demanding. Very demanding. But, in teaching these things to our children, and expecting it from them, we are doing something awesome. We are starting the ripples, which this world so desperately needs, to change things, for the better.

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