The superhero in all of us

A lot has happened since EJ’s second birthday: We took our first family vacation (to St. Louis), we visited (EJ’s) Grandma in Cleveland for her 60th birthday (though my grandma–going on 90–was there, too!), watched our first Cleveland Indians playoffs chase & playoff game together, took in the races at Keeneland, and watched Batkid save San Francisco Gotham.

Vacations, celebrations, playoff baseball, and world-class Thoroughbred racing are great, but nothing beats the feeling of doing something to make the world a better place. Batkid’s wish and the way I see EJ interact with people shows this is an innate desire. EJ is happy when he makes other people happy–usually with a flash of his infectious, mischievous smile or a game of tag.

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It’s not really something we wanted to learn the hard way, but EJ’s condition has put us face to face with some truly remarkable people and organizations who never grew out of their wanting to be a superhero phase.

And it’s OK if superheros get paid–paid well even. A day did not go by while EJ was at Cincinnati Children’s Hospital Medical Center that I didn’t thank God that the medical staff there answer the call to help children. I always assumed the doctors are fairly paid, but the nurses probably deserve a raise!

Seeing the brilliance and patience (among many other things) it takes to heal (or make comfortable) sick children and their families makes me question what I’m doing with my life. Even attempting to compare marketing horse racing to treating leukemia or a critical newborn would fall as flat as Tom Cruise equating acting to fighting in Afghanistan.

And that’s why Batkid is such an inspiration. You don’t need to be able to split the atom to make the world a better place, you just need the courage to trust that God gave you certain talents for a reason.

I’d like to think one of mine is writing. At least that’s what I told myself this afternoon when crafting a story about a Wliiamsburg, Kentucky, man who bet $210 on some horse races from California and won more than $150,000. It’s a good story, but isn’t EJ’s story good, too, and why haven’t I blogged in three months?

One of my primary inspirations in this regard isn’t a writer but the comedy duo of Jason and Randy Sklar. Back when I was driving between EJ at Cincinnati Children’s and work in Lexington, the Sklar Brothers’ podcast Sklarboro Country made that drive a lot easier. During one episode they talked about meeting someone at a show who thanked them for helping him get through a particularly tough time. His story isn’t unique because I shared it.

The Sklar Brothers aren’t splitting the atom, but they have split my sides a few times, and for the state of mind I was in that was just what the doctor ordered. If the Sklars had become lawyers instead of comedians then who would have made me laugh on those trips to and fro? Bruce Vilanch? No chance.

So, thanks Batkid and Sklar Brothers and everyone else who has helped teach me that EJ doesn’t need a superhero to make his life better but everyone to be themselves.

Happy Birthday My Love

I can’t believe that EJ is officially 2 years old tomorrow. His birthday always brings so many emotions for me; happiness, pride, love, and a little bit of ‘wow…. I can’t believe how much things have changed in 2 short years’. It seems like a lifetime ago that I was going in for a checkup with my doctor, what I considered a pretty routine visit after being put on bed rest 3 days earlier. My sister insisted I shouldn’t drive (I insisted I’d be fine…. the office is only 5 minutes away). Thank heavens she won because it wasn’t long before we were being whisked away to labor and delivery and calling Ed to tell him to get there as quickly as he could. (Thankful that she also made the call because everything went fuzzy after I heard “we’re sending you upstairs to the hospital”.) The paralyzing fear and devastation of the following days is a feeling that I will never forget. Just recalling the details makes my heart literally ache. But move ahead 2 years and that ache has been filled with a love that makes me swear my heart might burst.

Our motto with EJ is that it hasn’t always been easy, but it’s always been worth it. I admit there are still days that are hard. Days I have to step out of my box & brave the big old world because I know that’s what he needs. Days that I have to smile when people stop to stare, (and I mean mouth gaping stares…. from adults who should know better). Days that I have to see ‘typical’ kids his age do things that I can’t imagine him doing. Days when I know that for most parents, this age mean life is getting easier, but for us it’s simply not. But then there are days when I realize that every struggle, every day just trying to do the best we can for him, is all worthwhile. He is growing and happy. He has friends, he’s learning new things, he’s full of love….and did I mention he’s happy? All the things that really matter. That little smile shows me we must be doing something right.

I swore this year’s birthday bash was going to be ‘low-key’. I’ve come to realize that it’s impossible for me to be low-key when it comes to celebrating this little guy. There’s just too much to celebrate.

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I love you buddy. I hope that someday you’ll be as proud to call me Mom as I am to call you my Very Best Boy!

Ladies and Gentlemen…. we have a toddler

Things have been very busy around here lately. Most of our free time is spent chasing an almost 2 year old (how did that happen so fast?!) who is always on the go. I think we’ve officially reached the toddler years.

EJ is very helpful in the kitchen

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and in the laundry room

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and we certainly can’t forget the bathroom.

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He enjoys helping out at the grocery

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and has found the perfect storage place for his toy blocks.

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He’s been a very busy boy this summer, making his first tip to Kiddie Park

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bouncing around at Monkey Joe’s

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and even taking his first dip in the pool. Who says trach babies can’t swim?

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We are enjoying watching him grow & explore….. and running around like crazy trying to keep up. The toddler years…. yeah, they’re definitely going to be an adventure!

Our perfect boy

This video is full of great advice for parents with special needs children–or any parent, really–and none is better than “he’s still going to be your perfect baby.”

It’s a powerful message because there was a time when I’d have told you something was wrong with EJ or try to compare him to other kids. Another one of the slides says, “Your child will teach you far more than you will ever teach her,” and I consider the realization that EJ is my perfect baby my first major lesson.

EJ was born on a Friday night, and by Sunday we knew we were going home without him. The hospital prepares a special meal for parents on their last night in the hospital. It’s supposed to be sort of a last hurrah before the baby takes over the household, but for me it was more like a last supper with the agony in the garden to follow.

I prayed a lot that weekend, and like any human–even Jesus–wondered if maybe God would see to it that this cup may pass. The answer was that there’d be some tough times, but I’d have help, and it’d be worth it: “He’s still going to be your perfect baby.”

When you have that agony in the garden moment when dealing with adversity–and Lorrie had hers too–it’s easy to think, “What did I do to deserve this.” It’s easy to walk down the hall on your way to Intensive Care–past the “healthy” babies and smiling families–and ask, “Why me? Why him? Why isn’t he like other kids?”

But he is like other kids. Maybe what we see is different, but what we feel isn’t. That love is universal. That love is perfect.

So Thankful I Married My Dad

There’s an old saying that women tend to seek out and marry men who are like their fathers. I’m so thankful that for me, that’s true. When I see Ed as a father, I see so many of my favorite things about my own Dad. Their silly sense of humor, their strong and quiet ways, their patience that never seems to run thin. No doubt about it, when it comes to dads I hit the jackpot.

Whether it’s singing to the top of his lungs to a Sesame Street tune, a story before bedtime, or all the little things that go in to caring for EJ throughout the day, Ed gives his heart and soul.

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It’s a beautiful thing to see God’s plan unfold…. and I have no doubt he hand picked these two for each other.

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Happy Father’s Day to an amazing husband, an amazing Dad and the greatest Papaw in all the land!

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22Q at the zoo

Two weeks ago was our annual 22Q at the zoo day. It was great seeing some familiar faces, meeting new friends and promoting awareness for 22q.

This year we felt confident enough to volunteer in the information booth. (EJ was feeling a bit shy….or perhaps sleepy)

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We caught up with some friends from last year

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and made some new friends too.

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EJ made his petting zoo debut, and loved every minute.

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It was so cute the way he knew just what to do, gently petting those little goats.

Such a fun day and a great turnout!!

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We love our 22q family! Even though every child is very different, there’s an instant connection and bond talking to another parent who has faced challenges and obstacles. These are some amazing & supportive parents, and some even more amazing kids!!

By the end of the afternoon, our little man was worn out!

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But a few snuggles from MiMi and he was out like a light!

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Dr. Mom, CEO

From bringing EJ into the world, Imageto helping him discover it

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to sharing a laugh

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a mother’s work is never done.

Spending 5 1/2 months in the hospital following EJ’s birth and countless trips since, you learn the value of what the title “doctor” means. Shepherds quake and virgins round yon when doctors are near. They’re the most important people in the room.

As long as mom’s not around, that is.

If it’s true, is it still a cliche? Always thought “being a parent is the most important job you’ll ever have” was overused, but it’s so true. Whatever power or influence you think you have at your job can’t possibly ever compare to the role a parent plays in the development and success of his/her child.

And that’s why when I look through these pictures and countless others and watch every day as EJ grows I’m filled with wonder at the job Lorrie does. She inspires me to be a better parent and gives me a deeper appreciation for all my own mother has done for me.

Bring a parent certainly changes the way you view your own parent(s), but I had always heard that so it wasn’t a surprise. What caught me off guard is how watching my wife parent would make me appreciate my mother more than me being a parent does.

Of the countless roles moms have, one of the ones I most appreciate Lorrie fulfilling is that of advocate. It goes back to that the-mom-is-the-most-important-person-in-the-room thing, and it was a position Lorrie never took for granted (e.g., one of us was always present for morning rounds), and she continues that approach at home.

Watching her in action making sure EJ Is in good hands has taught me a lot about the battles my mom fought on my behalf as I was growing up. There’s a certain conviction Lorrie has when it comes to EJ that I really admire. It’s not about her being right, but always striving to do right by him while making sure others are on the page as well.

Coming home after work and helping to take care of EJ is never a chore, but it isn’t always easy. I discovered that on my own and can now better relate to when my mom did it all those years (as a single parent, which is how Lorrie must sometimes feel during Kentucky Derby season!), but the “mama bear” mentality isn’t something I have, and I wouldn’t appreciate its true depth without seeing Lorrie’s advocacy in action.

Happy Mother’s Day!

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