An open letter to my beloved bride on the event of our seventh wedding anniversary

My beloved,

Well, here we are. Rounding out the seventh year of our marriage. My, oh my, look how far we have come. Last night, as we sat and tried to watch The Crown, while dealing with a very sick baby, there was a moment of pause. The TV volume was low, you were bundled up under a blanket, sleepily transfixed on the story. Salem, our beloved border collie, was asleep at your feet. From down the hall the sounds of our sleeping children filled the air. All stuffed up with the weather changes, the chorus of snoring was… beautiful.

You had your hands cradling your stomach, gently holding our unborn fourth child. Had the propane not run out just the day before, there would have been a fire. That will be fixed today. Sorry about that. But that fire would have brought a warm orange glow under the trove of stocking that we hung yesterday. Who knew that so many socks would look that impressive on such a long mantle? Or that the little ceramic village that you have been collecting over the years would look so amazing? I am sure that you did. You have always had an eye for design.

Perhaps there was something that you saw in me, seven years ago. For I can think of no real reason why I am so lucky to be your husband. I am always in awe of your love, support, compassion, and endearment. Even through the frustrating times that we have seen, you have been amazing. You have been steadfast in your desires for me to do my best. You have been my rock, and allowed me to be yours. Through everything, you have been the earthly embodiment of all things good and perfect for me, and our children.

Yes, our children. The growing brood of independent, smart, witty, funny, laughing, stress-us-out extension of our love. Never before has there been such proof to be careful what one prays for. Regardless, even when you think that you are failing, you are excelling in ways that many others could not even come close too. In the rare time that we find ourselves taking a step back and evaluating our little ones, what do we see? A rambunctious group of defiant protesters? No. We see brilliant minds testing the limits of their existence, and reason, with the purest intentions of figuring out life. We see teamwork unhindered by ability. Above it all, we see compassion and joy. All that is good in them comes from the work, love, and patience that you pour into them. We are all better for it.  I never grow tired of exclaiming your accolades as a mother, teacher, and counselor.

When we started this journey, there was us and a dog. We knew not what mountains or valleys we would have to transit to get here. Heck, we did not even know here was a place. But, it is where we are. It is still us and the dog, but now we have three amazing kids, and one more on the way. Countless seasons behind us,. All of the unknown, untamed, wilderness ahead of us. But that is the thing. No matter what lies ahead, we will tame it together. For seven years we have been side by side, hand-in-hand, walking through this life. Occasionally one of us standing in the gap (mostly me, it is what I do) but always moving forward.

I am so happy that it is you. Over the last 2,557 days, I have found more than 10 times that number of new reasons that I love you. Every day, another reason (or a list of reasons) is added. So, here is to seven amazing years my love. And to an eternity more.

 

Love,

Your husband.

The $2,000 Bunk Beds – Part Four

So, where were we? Oh yeah there was an electrical burning odor in the air, and the light was on but not turning off. What a great place to be! Sigh.

With militaristic precision, I called for my wife to flip the circuit breaker back to off. Knowing what I must do, I asked her to keep the kids out of the room while I ran to my favorite store, Lowes. About 5 minutes, and $5 later, I was walking out with a new light switch in hand.

Asking Kati to, yet again, corral the kids and ensure that the circuit was still off, I got to work. When the power is off, light switches and outlets are quick and easy tasks. This one was no different. I set the switch to the on position and put it into the wall. 

So we found ourselves facing, yet again, another moment of truth. With the kids in the living room anxiously awaiting the outcome I stood in the room. Glaring at the light I asked my beloved to flip the circuit. In a flash, the light came on and was bright! I walked over to the wall, confidently out stretch my hand, and flip the light switch. This time there was an exclamation for my wife as it was a pop at the circuit breaker and she informed me that the panel was now buzzing. Hearkening back to what my dad told me when I was eight, I knew what I had to do. 

Sometimes it takes me a little longer to realize that I am beat.

Begrudgingly I called Woodfin, a local electrician and HVAC company here in Richmond Virginia. They’ve done a lot of work for us in the past, and I’ve always been awesome with what they do. Thanks to the busy time of year, we were told they would be about a week before somebody come out. I explained that I have three children ages 5 and under, 1/3 of my house was without power, and the electrical panel has a horrible buzzing sound whenever power was running through it. Someone was there within an hour.

Electrician that came told me that he has seen it all, and this is actually pretty common here in Richmond. Between the houses built in the 70’s, a bunch of “fixes” and “upgrades” done between the 80’s and 90’s, and just general “craftsmanship”, having electrical issues is pretty common. He diagnosed that there was a long-standing problem with the circuit breaker. Apparently, I don’t know why, but installing a new light pushed the old circuit breaker beyond its breaking point. He helped sort out spaghetti monster like nest that I found when I remove the ceiling fan, it only contained one always live wire. In order to make sure that our house did not burn down he put in a couple of temporary replacement breakers. He also helped me make sure that everything was in working order before he left.

Woodfin descended upon my home two weeks later.

So after 2 weeks, over $2,000 later (beds $500, light $30, new switch and cover $5, replacing the entire electrical panel and breakers $1800), my kids now have an amazing bunk bed without a ceiling fan and light switch that works. I hope that this journey has brought some humor to you, in hindsight it has for me. I think the most important thing that you, my dear readers, can take from the story is the fact that you should always know what you can and cannot do. You need to know who you can call when you reach a point that help is needed. Most importantly, always over budget every single project.

This is my haphazard attempt at giving you guys part four, I had a really good one written the other day. If you look at the post from yesterday you can understand why I’m more than a little frustrated. As a father I’ve always come to expect the unexpected. This little project proved to be no different. I hope that never changes. Even through frustration and angst, it’s still so damn fun to be a dad.

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

Know what’s awesome?

Technology. Know what is not awesome? technology that fails. On the market for a new keyboard for my computer….

Used google drive to do voice to text for today’s post. You know, part four of the $2,000 bunk bed saga. Got home, logged into my computer, opened drive, and then it happened.

EVERY time that my @razer #blackwidow keyboard updates, a random key on my keyboard gets “stuck”. Not physically, just randomly. Causes me to have to restart (just unplugging does not work) my computer. This time, it wiped out the entire post with a long string of letter B’s.

A little too frustrated, going to take it out on some home improvement items that I have on my plate.

What keyboards do you have, and love?

Let me know.

 

Part four will post later tonight.

The $2,000 Bunk Beds – Part Three

After working through the emotional distress of taking apart the beds that I had made, it was time to do something easier, but a little scary, electrical work. After taking exhaustive measurements of all the rooms in the house, we knew that there was no way we could have bunk beds AND a ceiling fan in the same room. Call it what you will, but we saw a trip to the ER as a very real reality if this was left as the décor.

I grabbed a step stool, being tall has some perks, and took to disassembling the fan. This task, in and of itself was easy enough. But, it should be noted that I do NOT like playing with electrical work. Need a wall built or taken down, sure. Want the plumbing rerouted, on it. But electrical is the one thing that I have always been cautious of. I think that my dad put it best, and the fear of God into me about it when he told me; “Of all the things that you can do around the house, electrical is the one that will most surely kill you”.  I was eight.

Regardless, the fan came down easy. As I removed the housing my nightmare began. A spaghetti monster of white encased electrical wires uncoiled like a serpent from the junction box in the ceiling. I was expecting two wires to be there, not six. So, I caught my breath, saying a few words that I most likely should not have, and began sorting it out. I had already turned off the light switch that ran the fan. But, I felt an all too familiar bite of my dear nemesis, 110 volts. With the power off at the switch, there were still live wires!

I quickly had my beloved find and turn off the circuit to the kid’s room. Fun note, the breaker that runs the light and outlets in my kid’s room also runs one hall light, an outlet in the master, the light in the family room and the fan, but not the light portion of the fan, between the family room and the kitchen. Yeah, have fun with that. That allowed me to finish removing the fan, and install the new light. Anxious to get the beds together I stood in anticipation as my wife flipped the breaker for the room.

I squinted my eyes as I was blinded and my ear picked up the electrical hum.

There was light! I let out a sigh of relief as I walked over to the light switch (or should I say slider? Dimmer? sigh, whatever). It was in the off position. I did not think that this was important as I slid the switch to on. Boy was I wrong. There was a loud “POP”, the telltale make you cringe sound of working with electrical, from the light switch. The light stayed on, and there was a faint electrical odor in the air.

Trust me folks, it spirals from here. Come back tomorrow for the conclusion of this saga. Missed part one, or part two? Feel free to read them. Trust me, this ends in a flabbergasted mess.

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

The $2,000 Bunk Beds – Part Two

I did it. I clicked purchase on the beds. It was at that very moment that I started to feel that this was not the right option. Chalking it up to buyer’s remorse, I did my best to shuffle it off. Instead I focused what I long knew what was going to be the hardest part, taking apart the beds that I had built my children.

Hovering around the mediocre level of carpentry, it is a passion more than it is a skill. However, I wanted to do something for my kids as they outgrew their toddler beds. I found plans, modified them to bring out aspects of each child, and I built them. They were not perfect, but they were perfect for them.  The joy and surprise on their faces when I put each one together filled my heart with joy.

But the day had arrived, and I stood there, in the silent room, looking down at the beds. Stripped down to the naked wood that I had built them from. I could hear the kids down the hall, playing with the heavy box that had arrived. I knelt down and began to take the beds apart. Making it even more difficult was that I put these together without the intent of having to take them apart. So, not only did I just have unscrew some screws and bolts, but I had to take a circular saw to my children’s beds to get them out the door. There must have been some extra sawdust in the air.

The beds were apart, and the project was underway.

As the time came to take the beds out of the house Zoey and David walked into their room. They saw that their beds had been taken apart. “Bed not there anymore” are the words that ripped through my soul. Kati did an amazing job and changed the mood. She turned taking the parts of the bed out of the house into a game. The laughter and screams of joyful competition filled the house.

But what would happen next would start the spiral of costs for this project.  Come back tomorrow for more. Missed part one? Read it here.

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

The $2,000 Bunk Beds – Part One

No, this is not some post about how I have gobs of money to spend on my kids. Quite the opposite in fact. This is the story about how trying to be frugal cost us quite a bit more. This is also the first part of this story. It all stemmed from this previous post. To be fair, these bunk beds were only $200. But those bunk beds were only the beginning. Or at least close to the beginning.

To bunk bed, or not to bunk bed, that is the question.

Not that long ago we decided that we needed to create more space. With three kids ages five and under, an amazing border collie, and two adults our home was feeling like a belt at thanksgiving. This is to say suddenly and unexpectedly too small and confining.  For some time my beloved and I have been debating about bunk beds for our older two. We both grew up with them, and we know our kids far too well. Based on the, um, exuberance that Zoey and David both have we knew what this would mean. That their bedroom would devolve into some Orwellian nightmare, with a little Lord of the Flies thrown in for good measure.

Regardless, we decided that it was time to make the move. My beloved bride was in need of a craft space, and I needed some separation in my office. The Dungeons and Dragons party that I have been running was growing, and we were outpacing the space that I had set aside. So, we begun making the many changes that were needed. Boxing up things, moving them around, making space. The plan was to purchase the bunk beds, and then move Jacob into the room with the older two. This would free up the smallest room in the house, the nursery, for my wife to have as a craft room.

We also knew that in order to not have a dire situation on our hands that the ceiling fan in the kid’s room would need to be removed. There is not a single room in the house that is suitable for bunk beds where a ceiling fan would not be at hand, or head, height. Little did I know that the moment that I clicked “purchase” on those bunk beds our bank account would be forever changed.

Come back tomorrow for another installment of the $2,000 Bunk Beds. Also, there are more updates to come. It has been a crazy last month and a half. This story, is only part of it all.

Live big, love bigger, and 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.

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