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.

Sleep, where we are going we don’t need sleep…

For far too long we have been off the radar. We have been working hard at creating a new format for our vlogs, and those should be starting again soon. Kati has been doing an awesome job juggling all that there is to do taking care of a house full of children.  I have been working towards launching a dad’s group here in Richmond, more preparation on a book that I am writing, projects, and more projects. Sleep has long since been a common thing for either of us.

Averaging, still, three hours of interrupted sleep has been my thing so long that I think I am going to make business cards that state it. At current, it is not due to the (almost) eight month old Jacob, or the potty-training three year old David, or even the amazing and full of life five year old Zoey. Life. It is the time of year where projects are the thing to do. Also, scraping every moment of family time that we can. Sure, there is the awesomeness of the days lasting longer.  That SO helps when you tell your kids that it is time to go to sleep.  David, in particular, has gotten great about pointing out that the sun is still up.  This means that it is not bed time, right?

“Every mountain top is within reach is you just keep climbing”. Barry Finlay, Kilimanjaro and Beyond

But, there is a ray of hope. There is a glimmer of light cresting over the pinnacle of this phase of life. We can see the cairn that we have been building in this place, as we face the light. The work that we have done, the nights that we have spent working, are coming to an end. Soon, we will be at the peak, facing a new dawn, and a slope that we can coast down.

There is more to come. Hopefully it is all awesomeness. There will, undoubtedly, be many more summits ahead of us. But, and this may be the lack of sleep speaking, I think that we can take them on. Thanks for hanging in there with us.

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

Exhaustion deep in the marrow of my bones

I am tired. I can feel the exhaustion deep in the marrow of my bones. With a heaviness I move through each step, continuing to drive on.  I watch the time pass by, like the flutter of a dragonfly’s wings. With the rising sun I draw in a breath. I open my eyes as the warm summer morning light bathes me. Forward, I continue. My drive is ceaseless and resilient. One more day has ended, and another one is here.  Just another day beginning in my life. What will I uncover, achieve, learn, or find today? That question is the one that greets me, and I always strive to answer.

For years it has kind of been my thing; burning the candle on all ends. I seem to have an innate talent for finding more ends of said candle that many did not even know existed. Normally I can find some respite in completing a project, or finding some down time with the family. As of late, that has not been the case. I see an endless list of things to do, looming deadlines, and the intense desire to ‘find time’ with my family.

You know it is bad when your Fitbit tells you that you need to get sleep. I guess that a declining average that hovers around three hours and fifteen minutes of interrupted sleep starts to wear on you. The excuse that I keep giving myself is that “This is fatherhood”. This is the marrow, the meat, of all that we do as dads.  In a seemingly thankless spiral of activity we fix things, we clean things, we do yard work, we spend time, we make time, we give up time. All for the chance of a smile from a child. For the late night, sleepy “I love you daddy” that calls to us from a sea of pillows and blankets. For the tight, reassuring squeezes when we rush into a room to fend off the nightmare monsters. We expend ourselves to the fullest, for those that matter the most.

Today, as I settled in for a long day of meetings, something different occurred. I pulled out my wallet, and saw a piece of paper sticking out. I am not a keeper of receipts, so this struck me as odd. As I pulled it out of my wallet, I could tell that it was the paper that we usually use for our shopping list. However, I could not remember leaving one in my wallet. What I did not know, what I could not know, was what this piece of paper was going to do to me. On this piece of paper was a note from my beloved bride.

The words reached deep into the marrow of my aching bones.

My wife has been my best friend from almost the moment that we met. It has been an honor to be the one that she can lean on when needed. It is also a show of her force as a person that she can be the one that I lean on when I need to. But, this little note, her love filled words, reached deep into the marrow of those same aching bones. She wanted to let me know that she sees me. That she sees all that I am doing, and that she loves me for it.

Marrow warming note

 

I read the note two or three times, reached into my desk, pulled out a pin, and pinned it to my wall. I want it to serve as a constant reminder, each day. A reminder that the woman that I love more than anyone on this planet is always there. That she loves me. That she wants me to stop and smell the roses from time to time. A reminder, above all others, of something that I seemed to have forgotten.  That when the marrow screams for relief, I should provide it. Just because I believe that this is the only way to live, does not mean that it truly is.

So, today, as I awoke and asked myself that question, I thought of a new answer. What will I uncover, achieve, learn or find today? To paraphrase Thoreau in “Walden”, today, I will learn to live deep, and suck the marrow out of life. I will find a way to remove the exhaustion, and allow my steps to be lighter.

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

P.S. I found another note in my wallet today. I am forever reminded how lucky that I am. My beloved is amazing, and I could not do all that I do without her.

Putting Fear in the Fearless: Tales of Failure as a Father

Yesterday, my world stopped, and a fear arose. I am still shaking off the ghost of what happened. Sleep has not gone well.

This weekend was a long and busy one. On the list of activities was getting together with my Dad, stepmom, and family.  We wanted to hang out, and have the kiddos go swimming at the hotel. So, we packed up and headed to the other side of town. The overcast, rain-laden clouds hung heavily in the sky, however, this did not affect the interior of our minivan as we traversed through the city. The littles knew we were on our way to see Grandpa and Grandma.  Their conversation was peppered with comments about pizza and even the word “pool.” As for Kati and I, our conversation was more softened about the busy times we have found ourselves in.

We arrived. Like a heard of animals we descended upon the hotel’s atrium. There, family and pizza boxes awaited. The boys took over a table to snack, juggle children, and play cribbage. Some of the children wandered over asking what we were playing. Smiles flippantly appeared upon all of the dad’s faces, it was about time to pass this game on to the next generation. Such a stoic torch, one that has been passed throughout our family for longer than many of us know.

After some pizza, and cribbage, the locals were getting restless. It was also at that time that some of the other children needed to go home for naps.  So, the gaggle was reduced to our three and one of my nieces.  My brother stayed to hang out with us, and to see if his daughter wanted to swim. So, a quick change into swimsuits was had. There is something amazing about the sound of little feat running down long halls. The heavy padded carpet making a thud, thud, thud that reverberates as the base, below the trill of their voices. The anticipation and excitement crescendos with each and every spoken word. I am thankful that it was mid-afternoon. This lessened my fear that anyone could be sleeping. We opened the door to the small indoor pool and all worked to contain the excitement of the children.

I hopped in the pool.  Like children looking at a puppy both Zoey and David circled around the pool, they wanted to jump in. They listened. Many of the methods that I have learned, and those that were added by family swim lessons at the Y took hold. I watched as they both sat down, feet dangling in the warm water.  My children don’t fear the water.  Heck, they do not really fear anything. They know that they are strong, I know that they are resourceful, and my fear is that they are fearless.

When it comes to water, I have a long history. I have been on swim teams since I was a teenager.  Though not the fastest, there was a passion. This passion still exists today. I would rather be in a pool swimming endless laps over a short sprint on a track, any day. I took scuba diving for credit in college… because I wanted to. Since then I have used my certification speeding time floating in the endless abyss. As a result, I have learned not to completely fear, but to respect the water. Most of all, I have learned that things can happen in a second that can change your life, or even end it.

Much like looking to the stars and running barefoot in the grass, I have been working with my kids on learning how to swim. Teaching them that some fear is good, and a ton of respect is better. We have taken family swim lessons, and have plans for more. My comfortable relationship with water is something that I want to pass on. For both its power and its beauty are mesmerizing.

I pointed to Zoey. She stood, hands exactly wringing themselves. I counted, using my fingers, to three, and with a high-pitched, gleeful scream, she jumped to me. We laughed, and giggled. I moved her back to the side to hold on. As she was climbing out, I pointed to David.  He stood, and I could not see any fear, just the contained excitement shivering through his little body.  I counted, using my fingers, to three, and he leaped into my arms with a scream of joy.  For what seems like forever, this rotation continued.

Eventually we ended up in the shallows. 3 feet deep, stairs with a rail. I looked and there was the rest of the family. My niece was playing in the shallows, showing me how tall she was. My dad and brother were playing a game, while Kati and my step-mom were chatting (Jacob in tow). Meanwhile, my two wanted rides.  So, I started with Zoey. David sat down on the steps, holding onto the rail, as we had practiced. With a whoosh I was off with Zoey. As I made it to the middle of the deep end, I turned to look… and my heart stopped.

David had decided to stand up, his foot slipped, as did his hand. He was in water over his head. His arms began to flail, he tried to call out for help. My son was drowning.

 

fear has come

 

Fear gripped me like a vice, and my heart stopped.

In a flash I jerked towards him, arm stretched. I needed to get to my boy. Zoey was on my back, arms around my neck. As I made this move she tightened. My scream for help, for anyone on the side to help my boy, it was cut off as her little arms held on for dear life.

He just kept flailing, and bobbing, struggling to float, trying to breath. I tried to lunge towards him again. Fear riddled me as I tried to reach my drowning son. One arm outstretched, with every tendon and fiber reaching for him in vain. I tried to scream again. My chest pounding against my daughters little arms wrapped tightly around my neck. I reached up to pull Zoey’s arms off my throat as a blur came from the right of the pool.

In the wake of it all, by pure chance, my brother happened to look at me. He saw the look of horror and fear on my face. Following my gaze, he saw David. He leapt to action, and leapt into the pool.  He pulled David up and held him close as I finally reached them.

In that moment, all were on their feet. My brother placed David on the side of the pool, he sat there coughing and crying as we flocked to him. I have never been so happy to see a coughing little boy in my whole life. I reached out for him as tears filled my eyes.

My heart began to beat, slowly. But the fear remained.

I hugged him, looked in his eyes, asking over and over again if he was ok.

“Oh-tay daddy” he replied, over and over again.

Finally, after a few minutes, many tears, and some towels, we continued our play, though a bit more restrained than before.

Now we watch and make sure that there are no signs of Dry Drowning. This is something that all parents should be aware of, and never experience. It will add a whole new level of fear regarding the pool for your kids. Long and short of Dry Drowning is where some water enters the lungs. It causes some swelling that limits the oxygen exchange, and has the same result (and effects) of drowning. It can happen with a delay up to 24 hours before the person shows any signs that it is going on. Though rare, it happens. We, as parents, should know about it, and fear it. This is especially relevant as summer is near. The time of pool parties, and swimsuits eagerly is ahead of us.

Fear be damned, today is another day.

But, as I said, I cannot shake the ghost. As a result, I fight to get sleep. While I lay there, exhausted, I see those moments over and over. Almost as soon as I close my eyes, I am taken back. I watch it playing from a birds eye view. I consequently rip myself apart. How did I let myself get so far away? It does not seem like it was that far. It is because of this that I will fight to be a better dad. But, since I know myself well enough, I will also never cease chastising myself for not getting there sooner.

Most of all, I will never cease being thankful for my brother jumping in. My brother is a hero. Seconds matter, and in those seconds, he jumped in.  Nicholas, if you read this, know that I love you, and that I owe you. I will never thank you enough for jumping in to help my little boy. You said it was no big deal because I would have done the same, and I agree with you. But it is a big deal, to me. Thank you Nicholas, a thousand times, thank you.

Later that day, when I was talking to David about what had happened, and that I was scared, I could see that he was too. When I told him that I loved him, he looked at me. His beautiful eyes filled with love and he replied,

“I love pizza”.

Finally, all was right with the world.

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

Still Frequent Customers

It’s funny how time and experiences change our perspectives. I remember the times when I used to post about every doctor’s appointment for Zoey. I posted about our questions, every medical procedure, many of the tests and treatments, and every so often, a few solid answers. My way of processing this sudden upheaval of Cranio to my organized and planned little world was to document all of it. List it, capture it, question it, follow prescribed treatment, and return for follow-up as needed. Lather, rinse, repeat. Move toward the bigger corrective surgeries, pass through the long days of waiting in a foggy haze, and continue with recovery. More tests, more questions, more plans. At some point it became our new normal. I was able to continue on with less hoop-la and without the intentional driving of a new Cranio Parent, at least most of the time.

The calmer season that follows the initial year or two of constant upheaval is very common for Cranio families. Many speak of it as being “on the other side,” particularly when they are fully treated for the remainder of their child’s life after a single, albeit heartbreaking procedure. I think this concept is a big reason why many personal blogs and pages devoted to craniosynostosis fall by the wayside once a Cranio baby reaches her 2nd birthday. The craziness has subsided and everyone just wants to move on with life as normally as possible. I get it, really I do! I am so thankful that regular life continues and the daily stress of this diagnosis doesn’t usually last very long. Granted, not all Cranio cases are quite as simple, with their medical folders gathering dust as children collect pencils and notebooks for school. We are among those who, even after 5 years, still have many questions concerning what our Cranio baby will be able to accomplish in her life time. We are learning that our answers will largely come only as Zoey tells us what she is able to do, and as we slowly stretch her limits and encourage her to reach higher. There are simply not enough others like her who have already been documented to set forth a regular pattern, so she is forging her own path in every area of life. Really, everyone must do this to some extent, but I find it interesting when even medical professionals refuse to lay any claims on a predictable path for her.

I am very grateful that the circus of appointments are less frequent these days. They still continue in spurts though, regardless of how little attention I bring to them. We have already faced Zoey’s 4th appointment of 2017 with her Pediatric GI surgeon. The novelty has long worn off, and the struggle is real to cart 3 kiddos under 5 through a hospital for an appointment and routine KUB X-ray. Zoey has some differences in her digestive tract that need monitoring occasionally, which may or may not be related to her Cranio diagnosis. When we do go, there is still a feeling a familiarity. Some nurses think Jacob is David because there is no way my second little baby is already 3 years old.  Others have crayons and paper on standby for Zoey.  I now force a big smile every one of the 3-4 times someone in our path comments on how I have “my hands full.” When I’m not stressed out, I really do love having a loaded up double stroller, complete with sticky fruit snacks in the cup holders and sweatshirts piled in the basket. It’s exhausting and demanding. Every so often I get it right, and I am so proud of myself for the tiny battle I have won. This includes a previous visit to the outpatient waiting room when Jacob pooped through two layers of clothing onto his carrier car seat while waiting in the stroller. It was an unexpected blow, but thank God I was ready for it. I had a complete extra outfit, a good supply of wipes, and even an extra burp cloth to lay on the clean, damp seat for him. I was just buckling him back in when the technician called Zoey’s name for her x-ray. You know, no big deal.

I have many more failed attempts than successes, but let’s face it: I want to scroll back through these days and remember that I got it right a few times too. So here is proof to Future Me: you know that one day at St Mary’s Hospital in the outpatient waiting room? Not all of them, but that one day? You rocked the 3 under 5 years old thing with the double stroller going solo that day. #focusonthegood

In light of all this, I’d like to revisit the bigger question of why it is that we are still actively blogging as a Cranio Family. First of all, my husband is thus far the only published Cranio Dad on social media. Go ahead and Google “#craniodad” and let me know if you find someone else. We would love to connect with him! I am among a few other moms who publically write about their experiences with Cranio, and a much smaller number who are still actively writing on their own pages after 2 years.  No one else is writing as a married couple that I have found, especially in regards to family living. We write together because we want to provide a more holistic view of family life when it is affected by Cranio, for the short-term and longer-term.

After 5 years, I continue to write about Cranio primarily because Zoey continues to surprise me, to encourage me, and to shine in new ways. Her story is unique and deserves to be told on a scale as large as I can offer to as many people as will listen. Her life speaks hope in a way that very little else can. I also write because our world needs to recognize more Cranio babies thriving as toddlers and students, and even into adulthood. So many social media stories stop after the scary skull surgeries. Yet most often there is an amazing collection of lives that continue on in an affected family. These families are forever softened to the once foreign diagnosis of craniosynostosis, and often to every other child with a complicated medical history as well. There is more to tell about how Cranio affects us, and I want to offer our family’s continuing story. Lastly, I write because others need to hear the positive stories lived in the aftermath of Cranio. Too many families are terrified of the vague unknown. Too many parents allow fear to change their family decisions so that they change jobs or don’t have any more children, regardless of what they wanted before their Cranio child entered their lives. I recognize that fear. I lived in that same fear for about 8 months after Zoey was born. I feared that I would never have the large family that I had always dreamed of. I feared that I didn’t have it in me to function as a parent beyond the demanding needs of Cranio. How could I handle it physically, emotionally, mentally? What if my second child had Cranio as well? I had so many questions, and the unknown was paralyzing. One of the most reassuring responses I received at that time came from a sweet daughter who is one of five children in her family. I think it was the second child who was born with Cranio, and their mom continued to have three more children afterward. This daughter’s response was so confident in speaking to my desires and fears as she commented, “Don’t worry, you will have more. It will be amazing.” I can’t really explain it, but I refused to let my fear of inadequacy cripple my dream of having more children once I was able to read such an affirming comment from this perfect stranger. I want to offer that same hope to others. I want to remind Cranio families that there is life after the diagnosis. There is family after the procedures. Despite how much our perspectives may change, the world continues to turn after the Cranio hurricane hits. Don’t let it crush you, but allow it to shape you into the next phase of who you become as individuals, and as a family. Don’t worry, it will be amazing.

 

 

Find Solid Ground: Why it is important to keep looking up.

“Keep your eyes on the stars, and your feet on the ground.” – Theodore Roosevelt

In my short time parenting and even longer time on earth these words have a complex meaning. They are so complex that we can either draw power from it, or be broken by them. Ultimately the decision is ours, but deep in the ground, the foundation for this decision has been laid by the generations that have come before us.

We have had the joy of experiencing life with a five year old for just over a week now. It is interesting how, almost overnight, she has grown so much more independent. Zoey has long been a little helper. Ever since her feet hit the ground she has been helping load the dishwasher. That is, when she is not running, climbing, dancing, or doing summersaults. But there is something magical about turning five, and we are experiencing more and more of it each day.

When Zoey was born, we did not even know what five would look like. We heard the word Craniosynostosis, and our idea of time, and its general movement was wrenched to a stop. Like a Hollywood movie the film on the reel that we had planned snapped, and spun around. Facing countless surgeries, time in the hospital, and therapists, I just felt my heart break.

Ground and feet

All that I have ever wanted for my children, is for them to be kids. To experience life running barefoot in the grass in the summertime. Dancing in sprinklers while eating homemade ice-cream. Building snow forts and having epic wars. The more time that we spent in the NICU, the more that all of this felt like a dream.  Much like a dream, I felt it slipping through my fingers as I fought to wake up. Then, a moment came that would change everything.

After spending 12 mornings and 11 long nights in the NICU, surround by amazing doctors and nurses, we were finally getting ready to go home. We had been trained on the things that we needed to know in order to take care of Zoey.  Most notably how to insert the 12 inch long nasogastric tube into the nostril of our wriggly and strong newborn, push it down into her stomach, and tape it to her. All so she could eat. I did not sleep that night.  I spent the whole night scared out of my mind, and packing what things I could.

Ground view of Zoey's feet

After many, many trips to our tiny car, taking all that could be spared, it was time. We stood in the doorway, waiting for rounds. This wait felt like it took forever. Suddenly, the curtain was pulled back, and we saw so many familiar faces. Those whom had helped us get started on this journey.  But, there was one that I did not recognize, a new attending. We listened to the briefing, most of which we were all too accustomed too by now. Our hearts began beating faster, and then came to a stop.  The new doctor commented, that “It looks like Zoey did not gain any weight as expected, let’s give it another day”.

In that very moment, such a level of brokenness filled me that I could feel my heart ache. But, there was something deep inside of me that rushed against the tide, aching to burst forth.  As the doctor turned to walk away, my wife began to sob next to me.

I stepped forward, my shoes resonating with military precision upon the ground.

“No.”

This little word shuttered through the crowed of trained professionals like a lightning bolt. They abruptly stopped, straighten up, and turned, wide-eyed. Fumbling though the chart in his hand the doctor looked up in astonishment.  “Mr., um, Von Bank, is there a problem”?

The pompous, indecisive tone that the doctor had brought whatever was inside out, full force. In a deep, calm, resonate tone I replied.

“Sir, I do not know you, and you have never even met my daughter. However, for the last 11 nights I have been here. There are nurses standing all around you that can attest that I have been here and helped with every feeding, and diaper change, that has taken place. My wife and I have been trained by some of these amazing nurses in the extra care that our daughter will need to go home. However, I think that you missed something. Last night, for the first time, there was a change in plans. Something happened and the nurse was called away. Upon her arrival Zoey had already filled her diaper, and was miserable. We elected to change and weigh her before feeding her as we have every night before. Zoey was so happy that she ate more than ever after being weighed. I ask that you take another look at her chart, then look at her.  We will not be staying another day”.

Defiantly, I stood my ground and awaited his reply.

I watched as he fumbled some more with her chart. I could see that he was containing rage, and embarrassment. After a short few seconds, I could see that he found the notes. Defeated, he looked up and said “Mr. Von Bank, you are correct. My apologies. Nurses, please prep Zoey for discharge this afternoon”. He hurriedly turned to walk ways, as I stood there vindicated. Zoey’s chief nurse, the one that had been with her almost the entire time, winked at me with tear filled eyes. She mouthed the words “Good Job” as the troupe walked away to the next room.

That was the moment that it all changed.  I embraced the title of Cranio Dad, but more importantly Zoey’s Dad. I became a voice for the voiceless.

Five years ago today, at this very moment, I stood firmly on the ground. I spoke for the dreams that I had for my daughter, and the hopes that I had for myself as a dad. With my feet planted, holding my daughter, I looked to the stars, and found a way to steal them from the sky. To this day, five long years later, I have never stopped.

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

Dear Zoey: A Long Overdue Letter For Your Birthday

My Darling Zoey,

This is a long overdue letter for you about the event of you turning five.  Please look past the few days that have past. You know, all too well, that things have been busy at home.

My little bit, I cannot believe that this day is here.

Time has flown faster than the speed of light since the moment you were born. There is a strangeness in this time.  For as fast as it has gone, I remember so much. Going back to the moment that you were born. Seeing you, this little, beautiful bundle of joy, and hearing your first cry. There was the long walk down to the NICU which felt like a lifetime in the moment, and a lifetime ago all at once. I often look back at this photo and feel my eyes begin to fill with tears.

Zoey in the NICU

I see you, my beautiful princess. Your smile, your little hand wrapped tightly around my finger. You had every reason to be angry in those days, hooked up to machines, getting poked, prodded, scanned and tested. Instead, you were happy. On your very first day with us you showed us how strong you are, and how joy can conquer every situation. We bonded. Instantly. Like a brilliant supernova cascading a radiant glow across the universe, you brought love forward.

Over the last five years we have sat through countless surgeries. I have seen this room more times than any should, knowing that once is more than enough for most. But each and every time, when you are done and back in my arms, you are at peace. We have laughed and watched countless movies while in in the PICU. I have told you fantastic stories to help you take your mind off the pain that you have felt.  All in some effort to cry out and take the pain from you, onto me.  You know that I would do this for you, if I could. But I know that you do not need me to. It is humbling to be your dad. To know that you can handle all that you are facing, with joyous grace.

Zoey and Jacob

As these years have passed you have become the ever doting big sister to two little brothers. The love and compassion that you have for them is visible to all who meet you. Just like the love that they have for you can be seen in their smiles.  You have loved the idea of being a big sister, and you take this title seriously. Far more so than I thought you would, and it makes me so proud.

Zoey and David

That is the thing that is the most important for you to know Zoey.

You make me so damn proud. In all that you do, with all that you have been through, and all that you are going through, you are resilient. You are one to follow your heart, but you listen to your brilliant mind along the way. You are beautiful. My sweet daughter, I will never grow tired of reminding you of how beautiful you are.

It is going to be an amazing adventure to watch you as you continue to grow, to see the woman that you will become. I do think that we get glimpses into this future you from time to time. But today, you are five. An age filled with exploration, learning, and fun. Just do not grow up so fast my little one. I will continue to do all I can to let you be a kid. To fight on your behalf. Using my deep and resounding voice to speak up for you. All while you hold onto my finger the same way you did when you were but a day old.

Zoey and her nails

Happy Birthday my sweet Zoey. May you continue to live big, love bigger and be kind, always.

Love,

Dad

Parenting has turned me into a Machiavellian Masochist.

As dawn broke over the cool spring morning the sound of my alarm resounded with its sharp, trill, beeping. I looked at the clock.  Why? Because, it is what we all do. We set alarms for a specific time. When they go off we still look at the clock, mostly in disbelief that this moment has arrived. As I prepared for the day, reflecting on the night before, as well as the weeks that have passed, this deep realization came to me.  Parenting has turned me into a Machiavellian Masochist. I had not even had my first cup of coffee yet.

Right out to the gate, you should know better by now that I am looking at rather obscure meanings for those words. As a story teller, I also find it better not to merely define these words. To proof the statement based on definition alone ruins the ride. But, those are heavy words. Machiavellian Masochist. What in the world was my brain trying to tell me this morning?

For the last couple of weeks I have been going non-stop.  Perhaps there is the part of me that compensates for what I see as a failure.  Getting sick… for me (not for others) that is a failure. Being sick for three months, we are near the pinnacle of epic here. Regardless, I have been busy.  Tackling projects like making a bed for my daughter birthday (how do we have a five year old already?), preparing the garden, editing vlogs, and working on a book (yep, it is happening) have kept me going at a breakneck pace. According to my Fitbit, and a little math, I am averaging less than four hours of sleep a night. And I am feeling it. Every day.

But I am not doing these things for me. Sure, there is the creative and cathartic experience of taking wood, shaping it, putting it together, and seeing your creation come to fruition. This cannot be denied. But, that is not (purely) how I work. Since my daughter was born (HOW DO WE HAVE A FIVE YEAR OLD ALREADY?) I have pushed myself. I have pushed to be the dad that she deserves and needs, not the one that I was prepared to be.

A  Machiavellian Masochist Tackles All The Things.

Zoey's Bed

This bed, it was for her, for her birthday. I knew that it would be something that I could do for her. Something that would bring immense joy.  Seeing that joy would bring happiness to me, satisfaction in the work that I had done. And it did.

The garden. This is for my family. It is to help provide as well as to teach my kids how to grow their own food. After all, who does not like a little dirt and sunshine once in a while?  I know that as this year passes by that there will be a ton of teaching moments for my kids. Some will stick, others will not.

The vlog, and the book. These projects fall in the same vein. They are both for legacy. They are for people to see now, and for my children to have long after I am gone.

All of these things point to the kind of masochist that fatherhood has turned me into.  I enjoy doing all these things. Again, cathartic, joy, and legacy. But, they are exhausting. They are breaking me down, bit by bit. I can feel it most mornings, and think of more to do long into the night. Because of the joy that I feel.

This, my dear readers, is also what makes it so Machiavellian.

I know that these things are wearing me out. Heck, I am writing about it as we speak. Meanwhile, I think of more and more things that I can take on to achieve the same results. Therein lies the cunning that exists for me. As well as the duplicity. I mean, who would do such things to themselves? When given freedom, cannot one not take a break, rest, kick back and enjoy life a little?

I know that I am doing this to myself, to bring joy to others, to have joy because of their happiness, at the expense of myself. However I discount my own knowledge of this, refusing to accept it, because I know that one would not do something like this to themselves.

Parenting has turned me into a Machiavellian Masochist. Something tells me, I am not alone in this.

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