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.

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

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 21: A Glimpse At One Future Day

Captain’s Log, date 4/11/2032. Day 1.

During the festivities and celebration of Zoey’s 20th birthday last night, we were able to christen our Catalina 385, now calling her “Wisteria’s Rest”. It was a little bittersweet to end the night with our goodbyes, knowing what today would bring. We have begun. As we moved out of the slip, and put the rising sun to the port side, my beloved and I watched as the wind filled the mainsail. Our journey to the Cayman’s has been long awaited. The months that we have spent preparing have come to fruition.

There is something beautiful about looking out to the endless sea. Standing at the helm, cigar and good scotch, the aromas so pleasingly mixing with those of the sea. God, how I have loved the sea. But, there is something even more perfect from my vantage point. Seeing my beloved bride Kati relaxing on the deck. I am taken aback at how well she has aged over these years, ever the true mark of beauty for me. As the sun rises over the horizon, and the sky’s hue changes into the breathtaking colors, they are dull in comparison to seeing her.

I know not what this day will bring.

I know that this journey is something that she needs, something that I need. The years have been a little rough at times, but this respite is more than deserved. In good times and bad, this day has been on our hearts horizon. We have been charting this course for years, and are ready for what the sea may bring. As long as I have Kati by my side, I know we can weather it all.

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

Day 12: Five things that draw you to a person

Man, like I need more reasons to cascade my adoration for my beloved bride. I mean, I already talked about the “Five Ways to Win My Heart” on day 1. Guess that I would be better off speaking about five more things, right? Sure, I’ll give it a go.

“No legacy is so rich as honesty” – William Shakespeare

Ah, I LOVE this quote. Often said in short, but coming from “All’s Well That Ends Well” there is SO much in this line that Marina speaks. Ever since attending Dad 2.0 in Washington D.C. a few years ago, I have been working on casting legends as my legacy. Most important to this is honesty. Being able to be honest with yourself, and others, will get you much further in life than a trail of lies and tears. Being honest, to me, means that you can be counted on to do what is right, even if it does not make everyone happy.

“Lack of charisma can be fatal” – Jenny Holzer

Charisma can be a beguiling force to be reckoned with. But, as the quote says, lack of it can be a death sentence. “How does one gain charisma” is something I have heard asked time to time. I think that the answer is far simpler than many may think. Find something that you are passionate about, that drives you. Let that thing guide you, and watch as your life changes.

“By all means let’s be open-minded, but not so open-minded that our brains drop out” – Richard Dawkins

Good old common sense, right? Having a standpoint that you believe in is fantastic. However, having the wiliness to hear the other side of the argument will take you far. You do not need to bend the knee to a dissenting belief in order to understand where it is coming from. You merely need to open your eyes, and listen well.

“Be faithful in small things because it in in them that your strength lies” – Mother Teresa

Faith has gotten me through much more than many could bear. Regardless of what the word means to you, having faith in something goes a long way of centering yourself. It gives you common ground with others, and a starting point to solve problems. Faith is the rock upon which you can collapse when the world is coming down on you.

“If I remain true to what’s in my heart, that’s all the success I need” – Steve Val

Yes, I already spoke about being true to self. But this one is different. Being true to heart means being able to listen to your heart, and making the decisions that you must. It is knowing yourself, and staying true to what drives your love of all things great and small. It can, and should, work in tandem with being true to yourself. Being magnanimous is one of the purest ways of showing how true you are to your heart, and to the heart of others.

In each of these things, the others listed in my Day 1 post, and many more sprinkled throughout my writing, my beloved bride has excelled in them all. It is easy to see how she won me over, and still does every day.  But it is wondrous, at least to me, how I was able to do so to her.

Live big, love bigger, and be kind, always

Day 4: Your Favorite Time of Day

There is a moment that I look forward to (almost) every day. After a long day there is a fraction of time that I close a door, take a few steps, pause, take a breath, and open another.  This is the moment that makes every single day worth whatever has been thrown at me.

When I get home, without fail, there is a moment that transpires. As the door opens one or two little voices will YELL from within the house “Daddy’s Home”! There is a cacophony of screams and a thunderous pattering of feet. I am bowled over as two excited children attack me with hugs, kisses, and begin pulling on my arm. As they guide me into the next room a little cherub face will turn and a brilliant smile will come to his face. Then my beloved bride will come and say “Welcome Home”.

No matter the day, no matter what is going on, this moment makes my entire day fade away. It is in these moments that the weight of the world leave me, like a mantel taken off. No matter what was on my mind the moment before I touched the handle, I am in my happy place. I am dad and husband. I am home.

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

Day 1: Five Ways to win your heart

I am strong in many ways, and of many things. My life has made some of the walls that I have built a necessity. When you have moved as much as I have, you learn so much about life.  Not all of it is good. But there is beauty in things all around us. I once was described as a man who has spent his life building walls, and casting stones. Now I strive to break down the walls that I have created, and cast legacies instead. This is purely because of the holder of my heart, my beloved bride. Instead of just telling you five ways to win my heart, I am going to tell you five of the ways that she won mine.

True to self.

“This above all: to thine own self be true

And it must follow, as the night the day

Thou canst not then be false to any man/Farewell, my blessing season is in thee” (Ham. 1.3.84-87)

From the time that I first met her, to this very day, KatiAnn has always been herself. This is not to say that she is not open minded, but that she holds true to her ideals. It has always impressed me the ways that she remains stalwart in being true to herself, in all things.

Grace, beyond measure

“Love is holy because it is like grace – – the worthiness of its object is never what really matters” -Marilynne Robinson, Gilead

Grace does not come easy, for some. However, KatiAnn is always one to extend it. She is the embodiment in looking for the good in all people.  I have seen her wronged, and still be willing to offer a hand in grace to those that have wronged her. This is one of the many things that she does that makes me want to be a better person, and to try every day.

Compassion, without ceasing

“Our task must be to free ourselves by widening our circle of compassion to embrace all living creatures and the whole of nature and its beauty” – Albert Einstein

Nothing is as pure a vision of KatiAnn’s compassion then watching her as a mom. She has the unfretted ability to reach into the moment, and see what each child is going through. There are times that this is exhausting for her, but she excels. Much like her grace, her compassion only adds to her beauty. There was a moment, a few months back, where she had reached a new level of exhaustion. Mind you, we are raising three kids that are five and under, so it is more than understandable. In this moment she pleaded with David (3) to “have some compassion” to which he sweetly, and verbosely, replied “NO! More passion”! It is a mark of greatness that one can teach a three year old that we all need more passion sometimes.

Strength, from deep within

“Great occasions do not make heroes of cowards; they simply unveil them to the eyes of men. Silently and perceptibly, as we wake or sleep, we grow strong or weak; and last some crisis shows us what we have become” – Brooke Foss Westcott

I have experienced the birth of my children, and been humbled in the strength that my beloved holds. Granted, this was personified during contractions when, at one point, the nurses asked ME if I was ok. Regardless, it takes a strong person to be one that I can lean on. And I have. There have been many times when things have been… eventful. We have a synchronicity about us in those times. When one feels like we are falling, the other picks them up. Back and forth, these tides ebb and flow, until we meet on the other side. Though every surgery, birth, death, stress, and change, we have met each other before, during and after, holding hands. She is my rock, as I am hers. We are better for it.

Those eyes

The moment that she first looked at me, I caught my breath. The deep, pure, beauty that capture light from every angle. The way that even the faintest moonlight brings a brilliant sparkle from the deep blue depths. There is a fondness in her gaze that has had me since our eyes met. Furthermore, I see the same eyes in the eyes of the children. Filled with grace, compassion, strength and wonder. I am blessed to see these eyes in the morning, and when I get home.

So, the way that my beloved won my heart is by being herself. I know, sounds a little lackluster. But, in my opinion, her self is very, very awesome.

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