Day 12: Five things that draw you to a person

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

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

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

“Lack of charisma can be fatal” – Jenny Holzer

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

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

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

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

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

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

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

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

Live big, love bigger, and be kind, always

Day 4: Your Favorite Time of Day

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

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

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

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

Day 1: Five Ways to win your heart

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

True to self.

“This above all: to thine own self be true

And it must follow, as the night the day

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

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

Grace, beyond measure

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

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

Compassion, without ceasing

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

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

Strength, from deep within

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

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

Those eyes

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

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

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

Lessons of Motherhood in 5 Years

Almost five years ago, I posted 5 lessons I had learned about motherhood in 5 months. Looking back, they were pretty simple lessons and not all that profound. I had a steep learning curve in a child like Zoey. But even then there is only so much about parenthood one can glean within the first 5 months. But these lessons were initial stepping stones in our journey together. I was so grateful for growth in my life-changing experience as a new mom. I still have a lot to learn, but I am now sharing what the past 5 years have taught me about motherhood. Let me know if you can relate to any of them!

My Top Five Lessons I Have Learned in Motherhood

5. Understanding the general timing of major milestones in my child’s life is helpful, but too much comparison can suck the joy out of the experience.  

There will never be another Zoey, or another David, or another Jacob as they each exist in our family. I definitely want to know when I should have cause for concern when it comes to their development and growth. However, if I am constantly comparing them, that information quickly mutates from knowledge to worry.  I become worried over when they crawl, how many words they are speaking, or how well they share with the kid next to them. It then becomes too easy to gloss over each individual’s characteristics that makes each one of them unique. And I worry that they aren’t like those around them.

In response to this lesson, there are many things about Jacob that I’ve stopped counting. I notice every day how much closer he gets to another tooth growing in, but I’ve stopped looking at the numbers. At first I thought I was being a typical mom of three kids, where the third one doesn’t have his baby calendar filled out nearly as much as the first and second kids. Granted, there probably is a bit of truth to that. I’m not as eager to jot down every new word and food this time around. But more than that, I’ve realized that, at least for me, comparing numbers sucks the joy from the experience for me. Yes, it is helpful to remember the general timeline when it comes to baby-proofing the house again. I appreciate having an idea of when to expect certain new skills to develop. But ultimately it doesn’t really matter if Jacob learned to crawl before or after David did. I was just as excited to witness each of them crawling for the first time, when they were each ready for the task on their own. To be in constant comparison mode is to stop appreciating them for who they are individually. Zoey had what I called a face-plant shuffle. Her head was on the ground for the first few months of crawling. I loved that David army-crawled for his first few weeks. I also love that Jacob’s movements looked more like a beached dolphin than a traditional crawl. They probably all crawled within a few weeks of each other, at around six months. But I gained no more joy in pausing those memories to try to calculate which one crawled first. So I’ve stopped doing that lately.      

4. I stress too much and kids are resilient. 

My youngest especially has a recovery time of about 2 seconds when something bad happens. Even my complex 5 year old has finished crying after about 5 minutes, regardless of the severity of the offence. I recognize that not every child has this sort of temperament, but I have learned that I am upset about something far longer than my kids ever are. Some times I need to just get over it. For example, if my son pulls my hair, he has a rough hour ahead of him while I think about how I am ruining my son for the girls in his class, possible girlfriends, and maybe even his potential wife by not getting a handle on his bad habit of pulling hair. However, if he pulls Zoey’s hair, she will scream, push him away, and two minutes later they will be playing together again as best friends. She’s a much better friend than I am.

3. Poop stinks. 

Like really really really badly. I can’t stand the smell of poop. Anyone who has used Miralax or Senna to help regulate digestion issues on a regular basis can feel my pain. I’ve have grown to the point of detecting poop within seconds of entering a room, usually my kids’ bedroom. My tolerance of poop has had to grow as my kids get older. There just isn’t any other option if we are going to keep them under the same roof. As they get bigger, the smells grow too. God forbid that it would all travel directly into the toilet. So lately I have become much more efficient and consistent with cleaning. Just make the poop smell go away.

2. Control is an illusion. My current plan is containment and consistent consequences. 

I can’t control every time that my kids decide running or skipping is their preferred method of travel. For their safety and my sanity, I have consistent boundaries in place around our yard that they are not allowed to run beyond. If boundaries are crossed, consequences are met. This is also reasonable preparation for adult living, where we are permitted to do many things, but there are consequences to every action.

and the number one thing I have learned over the past five years…

1. My time with my kids is most enjoyed when I allow myself space to grow with them.

 Here’s what I mean. It takes a certain level of tenacity and grit as a new mom to walk through pregnancy, labor, and delivery. I think most of us know beforehand that a we need to work to a certain level in order to contain, grow, and release a healthy human. What I have continued to learn is that the work and growth can’t stop at delivery. This includes both baby and mom. If we allow ourselves to flourish as moms in our understanding of, our knowledge of, and our patience with our child(ren) as they grow, our experience is so much more enjoyable because they better equip us for the next phase. My biggest failures and causes of depression have been when I assume that what has worked before is going to work now.

Our kids are constantly growing and changing. We need to allow ourselves the time and space to respond to each phase and decide how we can best meet each of their changing needs. Whether we stay at home all day, or spend spare hours as we can after working, our parenting skills need time and space to grow if we are going to continue enjoying our ever-changing kids. It’s hard to appreciate the strong will of a two-year old when we have a newborn mentality. Likewise, it’s hard to appreciate the independence of a five-year old when we are still reminiscing of how sweet she was when she let us dress her up every day. Moms are born the day their children are born, and I need to grow in my parenting as my children continue to grow. This doesn’t just make me a better mom, it makes me a happier mom.

Let’s Wrap it Up

Most days I love being a mom, and most evenings I can’t wait for bedtime. That’s just the way it is. I have come to terms with the fact that I will never be a perfect mom, as much as I might have wanted it in the beginning. I am content to do the best I can with what I know, to continue learning, and to try to forgive myself as often as my kids forgive me. Life is good when we can remember to 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.

Stories That Honor Dads and Encourage Sons

Let’s talk about our culture’s perspective on dads. It has come to my attention (over and over again) that too often dads are left out of the limelight when we talk about families and parenting in the home. Moreover, most media coverage continues to trend toward painting fathers as clumsy and backward characters in the best of light. It quickly spirals downward from there, with very few diamonds scattered throughout miles and miles of darkened corridors. Not only is this damaging to dads who genuinely care and are rocking (see what I did there? Rocking?) the parenting journey; but it also hinders the potential of our sons to be caring fathers. Did you know there are well-written stories that honor dads? I think we can do better for our families by avoiding stories that degrade dads, and instead highlighting the better examples of fatherhood done right.

Below I’m sharing a few diamonds (or books and movies with inspiring dad characters) that we have stumbled over in our search for positive dad role models. Can you think of a few to add to the list? If you have your own favorite book or movie, for any age group, that honors the role of fatherhood, let us know about it in the comments! In honor of Father’s Day approaching, let’s get intentional about lifting up our dads and future dads. Here are a few titles to get us started.

  1. My Father Knows the Names of Things by Jane Yolen (Juvenile Fiction)
  2. Gifted (new drama release rated PG-13)
  3. Caddy Woodlawn by Carol Ryrie Brink (Juvenile Fiction)
  4. The Yearling by Marjorie Rawlings (Fiction)
  5. To Kill a Mockingbird by Harper Lee (Fiction)
  6. Danny the Champion of the World by Roald Dahl (Juvenile Fiction)
  7. Little House on the Prairie Series by Laura Ingalls Wilder (Juvenile Fiction)
  8. Understood Betsy by Dorothy Canfield Fisher (Juvenile Fiction)
  9. Little Britches: Father and I Were Ranchers by Ralph Moody (Juvenile Fiction)
  10. Lone Pair of Blue Jeans in a Sea of Yoga Pants: The Life of a Stay-at-Home Dad by Brian “Pete” Craig (Parenting Nonfiction)

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.

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.