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.

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.

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.

 

 

I am sick and tired of being sick and tired

It has been a rough couple of months.  For all the reasons that many of us her on the East Coast know all too well, we have been inundated with colds and sicknesses. I have watched as my family has gone from being leveled by an illness, to healthy, back to being sick.  The cycle has been vicious, and none in our house has been spared.

For me, this is where the rubber meets the road when it comes to parenting. Dealing with wave after wave of sickness is a grueling practice.  For the older two we can give Tylenol for a fever, Benadryl for a runny nose or cough, and they get better.  We can give them juice, water, or Gatorade to drink to keep them hydrated.  Though it is painful to watch any child be miserable, we can deal with what we see.

However, this whole process is complicated when it also involves our youngest, Jacob. There is not medication to give him for his stuffy nose, and cough.  There is nothing to do but hold him, cuddle him, keep him upright, and let him know that he is loved. We know, from what we have experienced with Zoey and David that this will help to make him strong. Furthermore, we know when it gets too bad to take him to a doctor.  But that does not make any of this any easier.

Oh the Joy!

Being sick sucks. Being a sick parent, with sick kids… well that sucks even more. I feel like I am going to jinx myself (again) by saying that we are all doing much better than the week before.  However, thanks to this awesome weather (25 degrees Fahrenheit today… it was nearly 80 last week… 50’s by this weekend) I am certain that we are not done with this awesome ride.

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

Something awesome happened to me at a crafts store

I want to take a moment to share some awesomeness from last night. After dinner my beloved bride indulged me and let me take everyone to Michael’s so I could pick up some items for the D&D craft (that I cannot discuss yet). I strapped Jacob in the Baby Bjorn onto myself, while my beloved took the other two in a cart. We did our shopping, and all the kids did an awesome job. When it was time to go, she took the older two out to put them in the van, while I waited in check out. Behind me there was a woman and her grand-daughter. Here is the following conversation:
 
GM: “See that man right there? That is what you need. You need to find you a man that one day will not be afraid to go craft shopping at night and caring a baby! Stop wasting your time with those knuckleheads and look for a man like that. If he won’t carry your baby, you should not carry his.”
 
I looked back, the girl was obviously a little embarrassed and looked not a day over 16
 
Me: “If it helps, I love carrying my kids, and the crafts are for me”
 
GM:” Even better!, See honey, that is a real man”
 
I just wanted to share this because it made me feel awesome. There is something warming about having it pointed out that carrying my son on my chest is what makes me a real man. Further to have this pointed out to a young woman as something to look for.
 
Live big, love bigger, and be kind, always.

Dance in the Storm: A tale of how Fatherhood is changing

I spent the better part of the night before I left to attend Dad 2.0 Summit filled with excitement. My son and daughter gleefully put on music and took my hands so we could dance.  Filling my soul with all the joy and laughter that it could take.  I knew that I needed it to sustain me. How could I justify flying across the country, leaving my wife and three kids (all under the age of five), to go to a conference that talks about being a good dad? My hope was that it would be found in these moments pre-flight.

With a final kiss goodbye, I slid the door closed and walked into the airport. It only took two steps for me to physically feel that my heart was not with me.  Behind me, in that minivan, the one with the three crying children and teary-eyed wife, that is where my heart was.  As excited as I was to be heading to Dad 2, I felt empty and alone as I walked through the airport. Something was lacking. Stressful as it may be to travel with kids, I missed having to chase them down. Usually I would be focused on my kids as we waited in the endless TSA line. Instead, I stood there, alone. I missed it so much, that it angered me. I felt a fiery heat rise in the void that was created when my heart was left in that van.

“Real fatherhood means love and commitment and sacrifice and a willingness to share responsibility and not walking away from one’s children.” – William Bennet

All of it, all the angst and torment, was directed at myself. Angry for getting on this plane. Torment because I missed my kids. But, woefully I moved on.  I thought of the excitement that lay before me. I was going to be surrounded by other dads talking about what they have experienced, and what they are working through, as dads. This summit is a chance to have open, honest, raw and vulnerable conversations about the thing that we all love more than life itself, being a dad. There is much laughter, joking, and even crying about some of the things that we have gone through. There is so much acceptance and support for every single dad there.  It is kind of beautiful actually.

Over the last five years I have discussed the state of fatherhood. I have written about some of the hardest things that I have ever had to do. I have written with raw and visceral emotion about every time that my daughter has had a surgery.  Pouring out the feelings and encapsulating the moments while waiting for a team of surgeons to open her skull, re-shape it, and put it back together like a jigsaw puzzle. I have expressed every question, fear, and worry as many dad’s do not.  Open and exposed for the world to see.

On the other side of things, I have written about the things that have brought so much more joy than I thought possible into my life. Taking every single milestone and event as viewed through the eyes of a proud father. My pride being a banner for the world to see, and a model for my children to learn. Never shy of showing my joy for these things. Yet again, standing on the outside of ‘normal’ fatherhood.  Unashamed of showing my feelings for my amazing kids.

The same amazing kids that I just walked away from.

The void which my heart left in its wake, quivers with sorrow as I board the plane. I miss them. My God do I miss them.  Holding onto the memories of the dance gives me peace.

Why do I do this? Looking at my stats, usually with a stiff drink in hand, I can tell that my prolific writing is not just for solace, or confirmation. My reach is far narrower than many of the people that I will meet at this conference. I wonder how many know of the endless nights that I spend working though self-doubt, and creative enlightenment in ways to expand my reach. Of the countless drafts and plans that I have worked through in an effort to better tell this amazing story of my journey through fatherhood.  Then I wonder that if they did know these things, would it matter?

In my last five years of being a dad I have been fortunate enough to be surrounded by some prolific storytellers, who just happen to have kids. They write and shoot videos, often tongue-in-cheek, about their adventures into this great unknown we call parenting. They do not dance around the difficult topics. Instead, they face them head on.  They have been some of my best teachers, and dearest friends, as I have pushed myself to write more, do more, show more.

As the summit carried on, one thing resounded in the general buzz of the atmosphere.  With all the ideas and accolades, there was the same sorrowful voice about how much we missed out kids. I held fast to those memories of my kids and I dancing, without a care in the world. Those memories that I crammed into my soul before leaving.  In a flash, something begin to happen. Over the crowd I could hear the music wafting through the air, mixing with the distant sounds of my children’s laughter.

It was so surreal.  I could feel the carpet under my feet and the hands of my children in mine.  I could feel my body wanting to dance with them, as though they were there.  In this moment, it hit me. There was something that says more about the current state of fatherhood then I thought real. There is something about this dance that is now screaming as an epic moment of realization. So, I do what I have done for five years and I write.  I glide my lyrical brush across time and space to make sense of it all.  Removing layer after layer of dust to uncover something for all of us to see.

The very moment that someone becomes a dad their lives are changed forever. The act of entering fatherhood means that our lives are sent careening down a torrent path filled with the ominous unknown. The twists, turns, rises and falls are consumed with moments of fear, doubt, joy and often moments so hilarious that we can do nothing but laugh. We have to make decisions very early on that forever alter our children’s lives. Ironically is a decision that most of us make absentmindedly.

Holding onto my children’s hands as we dance in the living room, something was happening. As I replayed the moment over and over again in my head, I began to see.  This moment has something hidden deep in the steps, the motion, the dance itself.  Tightly wound like my son’s hand on a Popsicle stick, or my daughter’s on a piece of chocolate, so tight that you cannot see it, and surely it would break.

In a flash, it becomes clear.  Brilliant like the sun on a summer’s day. Bright like the full moons reflection upon a still pond. This thing buried deep with the dance all centers on a single decision that we all make at that very moment we become dads. A decision that shows the importance of fatherhood as a whole, but also how the idea of fatherhood has changed.  The simple act of dancing with my children exposes a question that many do not even know they answer.

How do we raise our children to be better people then we are?

As dads, we have the obligation, not the choice, of making a decision on how to raise our children. We can raise them in such a way that forces them to fit into a mold that, in-turn, fits into our lifestyle or point of view. We could constrain them to the perfect little thoughts and dreams that we have had for them since we found out that they were on the way. Society, and all of its morals and ideals could crash into our voices, masking reason with what society feels is right and good. Or, we can get uncomfortable with the unknown, and let our children become who they want to be.

Our decision, and my choice.

As for my wife and I, we could raise our children by any of these ideals. Instead we raise our children with the motto: live big, love bigger, and be kind, always. This means that we place value in living with honor, choosing to love, and the importance of being kind. To me it doesn’t matter who my kids might grow up to be. I just want them to grow up, slowly, and be happy with who they become. I have learned that it should not matter who they want to be. What does matter is that I exhaust all efforts for them.  That I let them explore this crazy world around them. Ensuring that they find what makes them happy. Above all else, encouraging them to go after what makes them happy.

What matters is it that I cheer them on in every possible endeavor. To do this not just from the sidelines, but right there with them. That it is more important to cast aside my ideals, and help them explode onto this world, and leave a mark that THEY are happy with, not the mark that I hope they make. To show them that inclusivity STARTS at home, at our dining room table. That love and respect is a requirement, not some gracious thing they should do.

Fatherhood In Practicality…

There’s something awesome about being a dad. You must force yourself to take a step back from it all. Look past the unknown and see the brilliance and beauty behind it. If you let yourself just being your children’s cheerleader, their champion, and their springboard, there’s so much greatness that you have the ability to witness. There will be times when things don’t go their way, and all you have to do is be there for them. They will be things that they want to do that do not even remotely fit your mold.

I’ve been watching my oldest son over the last couple of days and I see something that would terrify most. He would make one damn good ballet dancer. Looking back, not too far, I would find myself doing a plethora of things.  Spend evenings outside with him tossing the football with him in hopes of him becoming a defensive end like his father.  Enrolling him in sports, wood-shop, welding and other things to entice the engineer side that I have seen in him.  Excite him with Lego’s and building sets to have his mind shift to constructive creativity.  However, fatherhood has changed. I have gleaned so much from my dad, as well as the other dads at the Dad 2 summit.

Instead of doing those things, what is it that I do?

I dance with him.

And he loves it.

Perhaps even more than I do.

 

Live big, love bigger, and be kind, always

A new day, a new fear arises.

“Courage is resistance to fear, master of fear, not absence of fear.” – Mark Twain

A new, and great, fear that just came across my inbox, is the potential changes that are being discussed for Medicaid.  Five years ago, I would have paid it no mind, but now I have no choice.

Though nothing is final (let alone 100% confirmed) there has been talk about changing Medicaid to a block grant system.  This would (potentially) reduce the funding that states receive, and heavily effect medical waivers. How can this be? After reading the article in Disability Scoop “With Talk Of Medicaid Changes, Waiver Services May Be At Risk” (Link HERE)  I find myself, yet again, typing in a flurry.

My daughter receives the amazing care that she does thanks to a medical waiver for her Craniosynostosis. There are countless ways (too long to discuss here) that her waiver has helped her, and our family.  It was also no easy task working through the waiver. Not because my daughter does not qualify, but because the system was a little broken when we first tried.

After many months, and moving out of a county which we will most likely never move back to (#grudgeholder), our fighting paid off and a waiver was granted. The sigh of relief has yet to cease from this moment. I broke down in tears over reading the letter letting us know Zoey was now covered. Not figurative tears, full on, fall to my knees, hold my baby, rocking back and fourth tears of joy.

So, what am I going to do about it?

First and foremost, I am going to pray.  My prayer is for clarity and discernment for those having these discussions. This includes myself.

Second is that I will continue to speak.  My journey has been to create a place of light, support, and strengthen.  I am unwavering in that.  I also realize my place as a voice for the voiceless.  Even though my daughter is making leaps and bounds in her ability to speak, my voice has yet to grow tired.

Finally, I will research and fight when needed. As I stated, this is not something that is confirmed will happen.  There is a good deal of, shall we call it, “early information” that seems to be making its way to news desks. More needs to be known.  If, as more is known, it becomes clear that this may happen, I need to make my voice louder.  Exactly how, that remains to be seen.

For nearly five years I have fought too long and very hard for my daughter to have a ‘normal’ life, to have a pen stroke take that away…. armor up, it is going to be a heck of a fight.

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

Trailblazing in the dense woods, watching others leave.

Part of being a trailblazer often means doing something unique, and strange.  But, that is where I find myself. Trailblazing as a dad who openly discusses what it is like when you have a child with cranio. Also, talking about how it has changed your view on fatherhood, and enhanced your skill set for your other kiddos.  Trailblazing is not for the weak of heart.  When it comes to cranio, trailblazing is all I know.

Google News, various medical journal subscriptions, and scholarly articles often fill my inbox letting me know that out there, somewhere, cranio was mentioned. Many times, these are the things that I read first thing in the morning.  Let me tell you, there is not much of a better way to start your day then by kicking back and reading a medical journal where they talk about the statistical skull geometry in pediatrics for the basis of development of anthropomorphic test devises to aid in recovery.  But, then again, I could just be weird.

This article came across my feed this morning, and something about it struck me.  After reading it a few times, I realized, that there is a glaring subtitle that MANY in the cranio community have grown far too accustomed to.

“Doctors had previously told eighteen-month-old Finley’s mom that his condition was nothing to worry about.”

 

Let that sink in.

 

A mother, goes into the doctors, worried about her little one, and is told that there is nothing to worry about.  This happens, not just for cranio, many times. The idea of parental intuition is a WHOLE different topic, for another day.

In many ways our family was extremely lucky when it came to Zoey being born with Bicoronal Craniosynostosis.

The midwife on duty just happened to be the only one on staff that had just happened to have delivered a child with cranio a few months prior in Australia.

We just happened to be at a hospital where one of the top rated craniofacial doctors just happened to be working.

Oh, and just happened to be at the hospital that day, just a few floors up from the NICU, and just happened to be free when the midwife contacted her.

The same midwife who just happened to know of this doctor in the hospital based on a conversation about the baby that she delivered in Australia.

This doctor just happened to be able to get to the NICU (even before I could) to see Zoey, and instantly was able to diagnose her cranio, have it charted, and begin all the things that were needed to get us where we are today.

We also just happen to be followed by a team that has rigorous open communication, briefings, and a lack of rotation.  This means things like for the first five surgeries that Zoey had, we had the SAME anesthesiologist, the SAME nurse, and many of the SAME people in the room. This means that a phone call and an email were sent to our selected (by chance) pediatrician (we love this guy, really) so he had answers to his questions from another doctor before we even saw him. Just so he could focus on her care, and our questions as well.

We have been blessed.  Very blessed.

Many are not granted this scenario.

They spend months looking for answers.  Saying the same things to countless people wearing scrubs and white coats, all with the same look in their eyes.  Until, it just so happens, that they come across the one person who knows. There is a large sigh of relief as they begin to take the steps that many knew were coming, but were just waiting for someone to show them the way.

Regardless of how we started down the path that surrounds Craniosynostosis, and not paying mind to the fact that all of our paths are different (hey, we are all in the same forest at least); there is often a battle cry that arises from our lungs.

We want more people to know about cranio, so countless others do not have to spend months (or years) in the briars blocking the path.  Granted, none of us would choose to be on this path. However, there are some of us out there trailblazing so others have a clearer path.

And then, there is a stark and enraging thing that happens.

For many, they are able to have a single surgery, and they are on the other side.  Their lives go on as though nothing is wrong, and their voices grow silent.  I have seen countless mom-blogs go radio silent within months of their single surgery. Many accounts are deleted or completely re-purposed within 18 months. I am not saying that the mother in the article will cease on her mission.  In fact, I hope that she carries on the banner and makes great strides in raising awareness. I see having her story told in an article in Cosmopolitan as a huge step in that mission.

However, I have been trailblazing for awhile now.  As much as I hope otherwise, I will, instead, suggest that it is far more common for her voice to grow silent over time. Honestly, I get it.  If we were in the position where we only needed a single surgery to repair Zoey’s cranio, we too may have been able to move on with only memories.  We may have been able to move significantly past every tense moment, the times in surgery, the times in recovery, the endless research. For us, and for Zoey, this is not the case. Perhaps that makes us special. Perhaps that is what makes us the trailblazing family that we are.

Too often crowded social spaces are full of the battle cry, only to have the resounding voice grow dimmer and dimmer.  Frequently there are those that find these groups when they need them. They find comfort, they find peace, they find direction. The speak of doing great things to raise awareness, only to grow silent over time. There are a few, like us, that stick around, and answer call after call for help. But the fact remains, that many have left.

This is why I am trailblazing.

Yes, I am still here. My deep, resonant voice has been echoing in a room often not occupied by other men for almost five years. Trust me, I am constantly on the lookout for other dad bloggers openly discussing craniosynostosis. I have yet to grow weary in my attempt to carry the banner of awareness. For me this means helping professionals understand what cranio is, and what it looks like. This is so that when they see it, they know what to do.

This also means exposing what life is like for us, as a family.  Showing  what my daughter has been through, and what she continues to go through. Just so others out there looking for answers can find them here.  I have yet to falter in speaking. I have yet to lose my desire for teaching all those that I come across.  Watching countless others wax and wane in these woods has been, interesting.

But I am not finished.

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

10(ish) days…

Yesterday was a fast one. As far as Mondays go, I guess it was normal. Work wise, I still have not heard from HR about the position of Corporate Trainer… Guess it is a good thing that I chose to not worry too much, and let what happens just be. This does not mean that I am not anxiously awaiting a call.

I put the phone down for the evening when I arrived home. The kids wanted to show me all that they had ‘helped’ my beloved with. We are all in the thralls of this countdown. It is strange, as a dad, to take a step back and look at how this pending bundle of joy is affecting each person.

My beloved, she is tired. Sleep is evading her every attempt. I just pray that she can get some sleep. It is difficult to see her so tired, and not be able to do anything about it. I take on the kids when I get home, I take over the house. But just the act of going to sleep is not what she needs.

Zoey is super excited. She is in full mama bear mode. Last night she did things in three’s. Three plates, three forks, three diapers. Each time I would ask why and she would point at the third and say “baby”. I love this kid.

David is increasingly cuddly. I do not mind as he is now defaulting to me, and I love snuggling the little boy. He is saying more and more, and he talks of the pending baby by showing his tummy. It is the cutest thing and I adore him.

Even our beautiful border collie, Salem, is in tune. She now frequents my beloved side of the bed, and has a bit of an annoying tendency to follow her everywhere. She did the same when both Zoey and David were on the way.

Meanwhile, I stand upon my mountain of anxiousness, seeing all that needs to be done, and trying to breathe. Tomorrow starts my six sigma training… Are we taking bets on my ability to finish it before #3 arrives?

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