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.

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

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 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.

Day 6: A Song That Fits Right Now

I did not think that this was going to be an easy one. My love of music is as broad and deep as my love for reading.  There were some staple songs that always seem to reach deep:

  • “Counting Stars” – OneRepublic
  • “Heathens” – Twenty One Pilots
  • “Wake Me Up” – Avicii
  • “On Top of the World” – Imagine Dragons

And a LONG, LONG list of others.

However, this one wound up being more about a moment today than I thought. It is funny how things work out.

Today was an awesome day, on the end of a busy week. But there was something going on that the sheer enormity of the meaning was getting lost in the shuffle.  Until we walked into church. This year was Zoey’s first year attending VBS.  I know, for some of you there is the resounding, “So What?” and your reasoning is sound.

However, there are many things about Zoey that make things harder than your ‘average’ (almost) 6-year-old. She is adjusting to glasses, hearing aids, and becoming aware. Our little social butterfly is finding there are still times that she is on the outskirts of the groups of kids her own age. It could be her looks, the fact that due to medical issues she is still in diapers, because she is so much smaller than her peers, or for any reason. Kids, are kids. We had to work hard this year to get her to a place where she could attend VBS this year, so damn hard.

She did it! She had a blast. There was not a day that she did not wake up excited, and a night that she did not talk my ear off when I came home. We love our church, and so many of the people in it. They have made all the things that make Zoey different evermore the reason for inclusion. As a community they have showered us with love, deep and honest love. Many have asked questions that no others seem to care too, all to get to know her better.

And today a new song.

Today, something awesome happened. Our little girl joined all her friends from VBS… on the stage… in church… and they sang! I was able to sit and watch my daughter, center stage, sing and dance with so many other kids. It was hard not to cry tears of joy, but they were beaten ceaselessly by my broad smile. Not only is the song that my daughter sang today one that fits right now because of the journey that she has been on, but the lyrics as well.

“I was made for this, I live for this

God has a reason, reason for my life

I’m gonna shout it out, without a doubt

I was born for this, built a for purpose

Built for a purpose

Built for a purpose” (‘Made For This”, GroupMusic,2017 Maker Fun Factory)

My daughter was made for something bigger than I could have ever dreamed of for her. I have been coming to terms with this for the last five years. The interesting thing, that I have hit on at various times, is that I was made to be her dad. The one that she needs. There is something heartwarming and humbling about that fact.

So, for today, at this moment, my daughter singing ‘Made for this’ fits right now, in so many ways.

In fact,  here is a video of her singing for you to enjoy. Perhaps you will see that you were made for this, whatever that ‘this’ is for you.

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.

5 New Things Zoey Has Been Hearing

We have been hearing a lot of new things in our home lately. Many of these are in direct response to Zoey’s most recent appointment about her hearing. A little over a week ago, Michael and I took Zoey to pick up her hearing aids for the first time. We had a few quick lessons in cleaning, caring, and placing them. The audiologist then handed me a ringing, bright pink bundle of tubing and casing to place on Zoey myself. Sidenote: sometimes I build myself up for the responses of my kids throughout the day. Often they aren’t nearly as excited about something as I am. This was not one of those times. I was truly not prepared for that first week at home with Zoey and her new hearing aids. Here are my favorite 5 things that I heard from her for the first time in those seven days.

5. I am now hearing noticeable distinction in her phonics. This month we are reviewing single-letter sounds with a new curriculum. Zoey has been able to recognize the differences between the letters for awhile. However, her version of many letters and short vowel sounds had been very similar. More recently, she is learning phonograms fabulously now that she is able to clearly hear them. For those interested, I will have much more to say about the language arts program we are using once we have made some more progress through the first book. Today we completed Lesson 10, and thus far it has been a huge success.

4. We have heard a much easier attempt at every letter in the alphabet. Twenty-five out of twenty-six letters are completely clear now, albeit after a bit of repetition.

3. I am usually hard-pressed to think of a time when she has used more than three intelligible words together in a sentence. While at the clinic, the audiologist gave Zoey a teddy bear with a cape and felt hearing aids at the same time as her own. Later that weekend, one evening she explained to me that it was, “Super Bear with Super ears, like my Super ears.”

2. She has discovered a new layer in real animal sounds (as opposed to imitated voices from story books).  My awareness of this new development first came when we were outside in our yard. The older two kids were climbing a tree in our front yard while the baby napped, and our border collie was keeping guard in the fenced-in backyard. This is a common arrangement of late, and even in her older age, our dog remains ever vigilant and loyal to her territory. We live in a dog-filled neighborhood, which means inevitably there is some sort of interaction going on every day, yet somehow the noise must have continually escaped Zoey until this moment. She stopped mid-climb to exclaim, “I hear Salem barking!”

and my #1 memory of Zoey’s first week with hearing aids…

1. Immediately after I placed a hearing aid for the first time, still in the audiologist’s office, I looked at Zoey once the little battery light started blinking. I asked if she could hear me better. She looked straight into my eyes (which rarely happens) and with genuine excitement exclaimed, “Mama! I hear you talking!” I think we were all a little teary-eyed for that one.

Cranio Dad says #ThanksBaby for making me a dad.

Disclosure: I have partnered with Life of Dad and Pampers for this promotion.

This weekend is an amazing one. Father’s Day is a chance to celebrate dads, and all that they do in our lives. But this year I am looking at this day a little differently. Yes, there will still be the accolades for my amazing dad.  But Pampers is giving thanks to babies for making Dad feel exceptionally special; for empowering dads to discover new roles in life through fatherhood.  While I am forever thankful for each of our growing children (Zoey, David, and Jacob), my role as ‘Dad’ started when Zoey was born.

After a crazy labor and delivery, there was a ton of worry. Zoey was rushed to the NICU. The picture-perfect story about entering fatherhood was squelched with worried whispers from the staff. “What are we going to tell the parents?” is something one NEVER wants to overhear.

I remember, and still hold close, the very first time that I saw my daughter in the NICU. As I quietly pulled back the curtain, I saw before me a dark room and a little tiny bed. That bed had a light that shined with a radiance that hurt my eyes. Bathed in the warm, glowing light was my little girl, my Zoey. The one of whom I had prayed for, sung to, and talked with through my beloved bride’s growing belly. On shaking legs, I walked over to her bedside; tears streaming down my face. A quite voice from the corner of the room said “Dad, you can touch her, she is ok.” With tear-filled eyes I looked at the nurse that I had not noticed before. Her calm, penitent smile met me as her hands beckoned to the bed.

My hands were trembling as I reached out and placed my hand next to her. Choking back the tears, I said the words that I had been waiting nine months to say. “Hey Zoey, it’s me, Daddy.” At the sound of my voice, she stirred. I watched as her little body moved, and her tiny, tiny hand reached up. Her hand found my finger, and she grabbed on.

Dad and Zoey

This was the moment that I realized my entrance into the role of fatherhood. I knew that I would climb mountains for her. As her little hand grasped tightly onto my finger, I knew that just as she was born, this dad was born as well.

How Cranio Dad feels about Pampers.

For more than 50 years, moms and dads have trusted Pampers to care for their babies. Meanwhile, over the last five years, our family has come to understand Craniosynostosis. We have also learned about the challenges for a child with an imperforate anus. On Day One Zoey was in Pampers. We have tried others, but, honestly, no others work for her. Weather it be dealing with blow-outs, or looking for some comfort after a surgery, Pampers have always been there. Because of how well they worked for Zoey, we knew they were our choice. They are a staple in our home as all three kids wear them.

Pampers has released a new #ThanksBaby video that captures the amazing relationship that is created between a dad and his baby when a baby is born.  I love how this video makes me smile.

I am so happy that Pampers is helping to make this Father’s Day, and every day, special by honoring dads; for thanking dads for all the amazing things that we do, big and small, to help our little ones.

Please join me by tweeting why you are most thankful for baby with the hashtag #ThanksBaby

This Father’s Day let’s do our best to live big, love bigger, and be kind, always.

The Little Moment: A tale of realization as a dad.

My life, as of late, has been measured by the moment. To some this may be a dad thing, in this case it is amazing. This weekend I took some time and headed to a park with Zoey and David. I have been working with the  City Dads Group and finally was able to get a chapter started here in Richmond, VA. While this has added to the never-ending list of things that I am working on, it is extremely important. I have benefitted through my current journey from countless other dads. This has empowered me to do something to help others. I have watched a community building itself out of awesomeness.  City Dads is a community of fathers that work hard to redefine fatherhood in the 21st century. I am so happy to be bringing this to Richmond, leading the charge, but that is a story for later.

There was a moment while we were walking on the trail that struck me.

moment of joy

The recent rain brought forth a bouquet of fresh aromas under the canopy of the trees. The deep, earthen soil mulling with sweet pine being baked in the humid spring heat brought memories of my childhood forward. I watched as their little bodies would lean and run around the winding path. The joy and excitement of each and every step reverberated through the deep woods.  The rapid scraping sound of little shoes running across fine gravel echoed with a cacophonous tumult, pushed further with the sound of laughter.

“There are only two lasting bequests we can hope to give our children. One of these is roots, the other, wings.” -Johann Wolfgang von Goethe

Taking this time with my kids means the world to me. It is my honor and duty to raise them up to be better than myself. It was in this moment, far from the sounds of suburban life, that the juxtaposition of the quote struck me.  As I glanced through the trees, over the standing water, and watched the blur of my son and daughter, I smiled. This moment was the embodiment of the quote from Goethe. My children were simultaneously showing their roots and wings. It was beautiful, and inspiring.

This is not a mark of completion, but a trail marker on the way. It is a sign that I am doing something right, that amidst the trials and failures, there is something beginning to grow.

 

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