My darling son,
Jacob, my sweet little boy, yesterday you turned a year old. In the time that has passed you have grown so much. As have I. It is a strange thing, being a parent. As we scroll through the endless rants and raves on social media, one could arrive at the conclusion that being a dad is chaos. The long, sleepless nights. Endless bumps, scrapes, and falls each day. But, my dear Jacob, that is not how I feel, at all.
While many prostrate themselves as their sails deflate when a child is born. I stand resilient in the tempest winds, and unfurl my headsail. You have been born into a family of strength. We work hard, so we can play harder. Being tough is part of our nature. Because of it, we grow, together, in all that we do. We regale in each other’s successes (even the small ones), and we shoulder the burden each time any of us fall. Individually we are great, but together we are amazing.
When you joined our family, you came in screaming.
But, as a glimpse into your awesomeness, you cuddled, and looked around. You are a brilliant ray of sunshine. Piercing any darkness that may encroach, you radiate joy. Even when you have been sick, or teething, you bring peace with you. Somehow there was an imperceptible niche in our family, which you exposed and filled. You make our clockwork run smoother.
It is my hope to be the dad that you deserve and need, which may be lightyears beyond what I am capable of. But, between you and your siblings, I have all the reason that I need to stretch myself beyond my limits. The three of you are persistent wind that fills my sails, driving me to greatness. But this greatness is not for myself, it is for each of you.
Happy birthday darling. And thank you for choosing me to be your dad.
Live big, love bigger, and be kind, always.
Travelling. Once a great mainstay, and a measure of a person, seems to come and go with the ages. Every few months a map makes its cycle around my little sphere of social media. You all know the one, with the states where people have visited highlighted. It is funny for me to see some of the reactions, comments, excuses and proclamations that accompany these maps. Perhaps it is because, well, to be frank, my map was completed nearly a decade ago.
Ibn Battuta once said “Travelling. It makes you speechless, then turns you into a storyteller”. I have done my best to become quite the storyteller. I flex my lexicon to paint the beauty of a sunrise over the Atlantic. The sweeping colors pouring into view over an expansive, white capped, sea. I pull on the heartstrings as I capture the stillness of a single tear fall from the cheek of a parent in a waiting room. I bring the undeniable smile when expressing the joy of being smothered in the kisses of my children. All of this in an effort to give you an opportunity to travel. To close your eyes, sit in the stillness, and picture the scene I have laid before you.
A new thought on travelling for me.
But, those silly maps, the ones that cause me to chuckle have sparked an idea. What if, I were to complete the map with my children before they become adults? Would they enjoy travelling? I am sure that they would. More so, they would enjoy the stories that I would tell about some of my favorite places, while we are there. They may be inspired when we stop in a field and lay there on the grass. To look up at the clouds in the sky in wonder. To explain to them that this is but a starting place, and it is about the journey.
So, the days, and years, ahead I will be overjoyed to expand my stories as we travel. However, I feel that the real excitement will be in watching the new generation of storytellers. Watching them take in all that they can from our travelling journeys. Listening as they become speechless, and begin painting pictures with their words.
Live big, love bigger, and be kind, always.
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.
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.
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 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.
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.