A very (very) overdue post

November 23, 2012, by Carolyn

Trust me when I tell you I’ve had a post in the works for the past eleven or so months. Suffice it to say this blog (and heck, this one, too) has been collecting cobwebs (as have our ceiling fans and doorways, but that’s neither here nor there) for the past many months. And for no reason other than the very simple fact that we’re living life. Full on, no holds barred, living, with a rambunctious and feisty toddler towing the line (or rather, taking the helm and leading this ship in whichever direction he so chooses). But it occured to me, when I happened to pull up our blog to find an old photo, that while this space began as a means to update family and friends about Caleb’s health, it became so much more.

I found myself dissecting every post, willing myself to remember the moments and events we captured in words and photos, and the sentiments (fear, relief, joy) that were woven within them. I don’t want to necessarily remember the fearful moments, but I do want to remember that we came out on the other side. Hunkered down, allowed ourselves to be present in the horrific limbo, and celebrated the pull through. I’ve given the fearful memories permission to fade (and most have, into the black hole), but not the appreciation of the pull through and the many wonderful things, both big and small, that followed. To quote our ‘About’ page, this space is a public scrapbook of ins and outs, ups and downs, observations, celebrations and otherwise ordinary miscellany. And so it begins, again, because I want to do a better job at keeping tabs on the meaningful miscellaneous moments. As a favorite blogger writes, the days are long, but the years are short. As we embark on official two-dom (aka tantrumhood) it’s clearer than ever that these years will not slow down and wait for us. We’re doing our best to keep up, walking, jogging, sprinting, and lest the memories slip away like a “Look Who’s Two!” balloon into the clouds, I’m keeping virtual tabs.

I turned 30 recently, and I’ve spent a little time thinking about what I want to do in these next ten years. It began as a 40 before 40 list, but that quickly became overwhelming. It took a little time before I realized those things on that list were just that, things. And while I’m not discrediting the importance of having life goals, I want to spend even more energy on the gray matter. To be more present in the space between lines with checked and unchecked boxes. To feel more intensely the stuff leading up to and following the things. And, more importantly, I want to live the in-between with more purpose. That there’s the secret sauce. Most of us spend way more moments in the in-between, anways. Why not pump up the volume, get a little more bang for our buck. Walk away with some short and long term accomplishments, if we’re so fortunate, and, naturally, setbacks, but meaningful moments woven in and out to really punctuate the “noteworthy”. I guess that’s it. I want to hang on more tightly to the coattails of the thread that carries us from one noteworthy moment to the next.

Last Thursday evening, Kyle was at class, and I was exhausted after a very long workday. I was watching Caleb from the couch where I sat perched with my iphone (guilty mom confession). He was playing with Ducky and Mr. Bear. Caleb placed Ducky face down on his chair, patted his back, and said “Night-night, Ducky. Night-night”. Then he looked at his bear, put a finger to his lips, and said, “Bear, shhhh, night-night”. It took a lot of restraint not to laugh aloud. These moments, they’re the extraordinary ones. The ones you want to pause and rewind a few dozen times. The ones you want to hang on the fridge next to the handprint-turned-turkey art. I would have typically paused and thought, “aw, sweet boy” and we would have carried on. But it occured to me, in the moments that followed, that it’s these little 60-second scenarios that let me know we’re all doing ok. Caleb is learning to be thoughtful and considerate, no doubt from his caring teachers at daycare, but also from us, I like to think. I paused and made that moment more personally purposeful, to connect to it in a deeper, bigger way. I paid closer attention to the way he was playing, to the way he interacted with toys, to what led him from one deliberate action to another. And it triggered the ‘hey, yeah, this is the good stuff’. In the last few days I’ve done more of this. Spent a little more energy creating a special memory pocket for what otherwise might be considered ordinary passing of time. Sunday, while playing in his room, Caleb saddled up to the rocker where I was sitting, Mr. Bear in one hand, a diaper in the other. He handed me both, and I proceeded to put the diaper on Mr. Bear, assuming that was his unspoken ask. It was, and he took the diapered toy to the middle of the room, sat down, looked Mr. Bear in the face and asked, “Toot?” “Poop?”. Of course, this is how things usually go when we suspect Caleb’s left a present. Just a toot, we ask? Or, something more. It seems silly typing this, but the more I recall it, and commit it to text, the more important this whole practice feels. Caleb’s growing, learning, thriving before our eyes. He’s observant and inquisitive. He’s imaginative and curious. His vocabulary is wrought with “mine!” and “no!” and “Elmo!”. He throws tantrums. He loves to give hugs and blow kisses. I mention all this to re-commit to what I vowed back on January 28, 2011 as the three of us made our way out of the NICU, to the car, and Home: I will never take a day, a second, for granted. The small stuff. The big stuff. The ordinary and extraordinary. This hodgepodge life. It’s all important.

We found ourselves back in the hospital this week. Caleb had been battling a pretty mild chest cold for the past couple weeks, and we were sure he was on the mend until daycare called Monday afternoon. He was running a low-grade fever, breathing heavy, and could barely muster enough energy to walk across the playmat. A trip to his pediatrician turned into an ER visit turned into an ambulance ride to the Children’s Hospital. Long story short-ish, Caleb is doing much better. The respiratory airway distress and “happy wheeze” that always seems to accompany his seasonal colds has officially been diagnosed as asthma. His chest cold triggered an asthma attack. We’ll be using inhalers a bit more regularly and keeping an eye out for the belly breathing and an ear out for the wheeze. Thankfully, Caleb now finds the inhaler to be “cool” (except when he doesn’t), and that’s cool with us.

All this to say, this week, this experience, it underscores the tone of every other well-intentioned but unfinished post I’ve had in the works for the better part of 2012. This week, as we’re more mindful of our many blessings, perspective joins the likes of  family, friends and good health. I’m extra grateful for the added perspective the week’s events have bestowed upon me. Monday added just enough pit-in-the-stomach worry and angst to remind us that everyday we spend out of the hospital, healthy, together, is truly a gift. The good stuff.

And finally, a health-y update: Caleb had surgery in January to repair bilateral inguinal hernias. In the proceeding months, he worked with OT, PT and developmental specialists to ensure we were doing everything necessary to keep him on track. We’ve since discontinued those therapies because he no longer qualifies based on his progress. In other words, he is doing everything a little boy his age should be doing. We will continue with abdominal ultrasounds and lab work every three months until he is about eight years old, standard screening protocol for kiddos with Beckwith-Wiedemann syndrome. I should mention, BWS presents very differently for every child. We’re fortunate that while Caleb had/has many of the associated symptoms, he is doing excellent, and truthfully, we don’t see him as a child with a “syndrome”. Caleb is not defined by BWS, and quite honestly, in the months between screenings and check-ups, I hardly have reason to give it a second thought. This is our family, our normal, and I wouldn’t change a thing.



Categories: Caleb

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  1. Stephanie

    November 23, 2012 at 10:44 pm

    What a beautiful wonderful post, Carolyn. Thank you for sharing. We love you all!!

  2. Kyla

    November 23, 2012 at 10:49 pm

    It’s beautiful. We love you all so much. I need a tissue.

  3. Danna

    November 23, 2012 at 11:54 pm

    What an awesome post, Carolyn. It was so inspirational and touching to read your words. Caleb is undoubtedly a very special boy who has already touched so many lives in his young age. You guys are a beautiful family (both inside and out). Love the three of you!

  4. Lauren

    November 24, 2012 at 9:21 am

    So glad to see you back! Mom and I just read this together, and we are so grateful for Caleb’s happiness and health. Love you guys very much! And, may I say, this blog is so well-written. Gretchen Rubin (ha- I knew you quoted her) needs to watch her back! (:

  5. Laurie Miller

    November 25, 2012 at 10:49 am

    Beautiful Caleb, beautiful family….and yes, the time “in between” is where life’s treasure presides. You are so fortunate to have that figured out at such a young age. Your post is exceptional…a summation of pure love for a darling little guy!

  6. angela

    November 26, 2012 at 8:47 am

    Your post brought tears to my eyes. You and Kyle should be very proud of what you have accomplished. Caleb is a beautiful, well cared for, loving, funny, bright and well rounded child and you two deserve to take the spotlight for this. Cherish the little moments as they fly by (Matlyn lost her second baby tooth yesterday). We really must get together more often, as Matlyn is totally “in love” with Mr. Caleb.

  7. ashley janezic

    November 26, 2012 at 6:58 pm

    It was so great to see you and your family over the holiday. I wish we could do it more! Your post is so real, inspirational, and heart-warming. :) I hope to talk again soon. :)

  8. AnnE

    November 27, 2012 at 11:20 pm

    One of the most moving perspectives from a parent I’ve ever read….thank you for reminding me to stop and pocket the little moments..

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