Building a better home.

    Today is going to be an emotional day. I stood there looking into the room the ruckus of morning breakfast behind me down the hall, and sighed. 

    I built these beds for both of my kids with my own two hands. I found plans online and I modified them to help bring out some characteristics of each child. But today these beds come apart.
    The same hands that built the beds will now unscrew the screws. The wood will be removed from the room leaving a barren and empty. I’m almost certain that a war against the dust bunnies will be waged. In place of my two creations, a store-bought bunk bed will be put in. I have been dreading this day since the moment I clicked the purchase button for the bunk beds. I fretted over if I could just cancel the order and keep everything just the way that it is. But we are growing family in a very small house. We need space for things like a home office, crafts, and homeschooling of course.

    But having the ability to make things work, moving all three kids into one room, does not make this day any easier.

    There maybe someday down the road that my kids remember these beds. I want them to see that this decision to take apart something that I’ve gifted to them was not an easy one. but we often have to do things that are not easy. I’m sure they’ll be some pretty awesome memories about the time they will spend in a room together, all three of them. But for now I’m having a hard time letting go of the memories that we have created with just the two of them.

    Pictures we posted, hell I might even do a YouTube video just to help ease some of the pain that I’m feeling. Regardless, today is going to be an emotional day as I…

    Live big, love bigger, be kind, always.

    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.

    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.

    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 17: It Makes You Anxious When…

    Anxious: experiencing worry, unease, or nervousness, typically about an imminent event of something with an uncertain outcome.

    I would be lying if I said I never felt anxious. However, it is important to note that most of these moments have been in the last six years and 15 days. Why such an exact number? It was 2,207 days ago that my beloved and I found out that we were going to be parents. Since that very moment, after the realization washed away to jubilant praise, my propensity to feel anxious has increased, tenfold.

    Upon numerous occasions my breathing has stopped, my heart as ceased beating, and time has frozen as the anxious waves crashed over me. Fatherhood is not for the weak of heart. Every time that Zoey has gone through surgery, I become anxious. All of the many first steps that David has taken, it is there. Every time that Jacob tries to walk, I can feel it trying to force my hands out to catch him. Every bump, fall, bruise, scrape, it is there. I would love to tell you that, over time, it gets better.

    Anxious Is As It Does

    I really would love to tell you that. Yet, every time that I feel like I am going to get a handle on it… we have a new member of the family going through it. Having three kids five and under means there is always someone learning to climb, walk, run, ride, run, and swim. Perhaps in about 18 years I will be able to breathe again.

    But, here is the cool part, this is also part of what makes fatherhood so awesome. Understanding that these are the things that make one anxious, and powering through them. These moments that make my heart stop mean my celebration over each achievement is genuine. When I clap and cheer, picking up my child, they can see the exaltation on my face. So, I kind of dig it when I feel anxious. It usually means something awesome is happening.

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

    Day 14: An Item That Gives You Confidence

    Let’s go way back. I mean WAY back. My first Christmas. It was 1981 and I lived in Boise Idaho. Understandably, I had no conceivable idea what was going on. To be frank, I do not remember this day. However, there is one thing from this day that I still have. Rather, it belongs to someone who needs it more, but we will get to that in a moment.

    Buffy.

    For 35 years this beloved stuffed dog has been by my side. Almost every trip to the hospital (usually for stitches) she was my bedfellow. Every illness, from the sniffles to croup, she was my comfort. Even as I grew up, she was always there. In fact, much to my own amusement, she deployed with me, every time. Countless hours have been spent talking through problems, dealing with heartbreak, and being my silent journal. The secrets I have spoken to her, will never be told.

    But, she is no longer mine. When my daughter went in for her first Cranio surgery, Buffy and I had a long talk. I told her that she had gotten me this far, and needed to trust I could carry myself from here. The night before we went to the hospital, I was sitting next to Zoey’s crib, tears running down my face. I knew that Buffy did such an awesome job keeping me alive, and being there for me, and that my daughter needed her more. I left Buffy in her crib that night. All of my love, tears, joy, fears, my heart is embodied by this raggedy stuffed dog.

    Buffy was no longer mine.

     

    The next morning, Zoey had Buffy in her arms. When she was taken back to surgery, Buffy was in her arms. While I was writing This Room, feeling empty and void of joy, Buffy was right next to my daughter, because I could not be. Since that day, the bond between Zoey and Buffy regales the one we shared. Every trip to the hospital, Buffy is there. When Zoey is recovering from surgery, or sick and hating the world, Buffy is there.

    It is my hope that long after I am gone, and Zoey has become the amazing and beautiful woman she is destined to become, that when she misses me, Buffy will still be there.

     

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