About Culture Bean

I am a mother, a pre-published children's author, and a published academic. I am also a "mommy blogger," though I hate the term. My passions are reading and writing. As a professor, I strive to help my students think critically about the media and culture with which they engage. I've started this blog because it's time I put my money where my mouth is!

Heart Month 2016: How Aware Are You?

While the “Charlotte’s Journey” part of this blog is on a sort of hiatus for the time being, I thought I’d use Heart Month to continue raising awareness of CHD and of the amazing Heart Center team at Ann & Robert H. Lurie Children’s Hospital of Chicago.

This video tells the heart-stopping (literally) and heartwarming story of Kaysen, a brave baby who survived a heart transplant when she was only a few weeks old. Watch it, and try not to cry. I dare you.

Years ago, my friend Francie Paul asked the cardiac-thoracic surgeons at Lurie Children’s what they need most. The answer? More research dollars. The Children’s Heart Foundation notes that for every government dollar spent on cancer research (very important research, and I certainly don’t begrudge them the money), less than a fraction of a penny is spent researching congential heart defects, their origins, and their treatment. Less than a fraction of a penny  for the leading cause of birth defect-related infant illness and death.  Let that sink in a bit. And then if you feel like it, visit Saving tiny Hearts Society to learn about how Francie and her husband Brian decided to combat that imbalance.

I’d love to hear your story about CHD. Please share it in the comments.

mended heart

 

 

Goodbye 2015, Hello Leap Year

I realized tonight that we never did our annual New Year’s post for 2015. Probably because we were in the thick of “countdown to surgery.”

So, let me be the first in my family to wish you a happy and healthy 2016. We will not be sad to put parts of 2015 behind us. But, in truth, we couldn’t have asked for a better year. Yes, Charlotte had her third open-heart surgery. And, yes, it was the first surgery she was old enough to be scared of and the first new scar she was aware enough to be self-conscious about. And yet…she crushed it, as they say. She came through with a smile (after the dilaudid wore off).

And once past it, Charlotte learned to ride a bike; traveled to Washington, D.C., Mexico, Cape Cod, Belgium, Amsterdam, New York and New Jersey; had her first sleepover party; and made me laugh harder than you can imagine. We’re proud of the incredible strength she showed during the first part of the year and hope she’ll realize one day what a warrior she is.

As a Truncus Arteriosus type I patient, we have learned, Charlotte continues to experience best-case scenario outcomes. She has had no emergent issues and suffers no contingent developmental delays (we just learned this year that we probably should have been prepared for severe learning and developmental difficulties). With that in mind, I have one thing to say as 2015 fades into memory: Thank you.

Thank you Dr. Backer and your extraordinary surgical team. Charlotte with Dr. Backer Thank you Dr. Luciana Young, for your friendship and amazing care of our daughter. Thank you Elizabeth Capella, for teaching Charlotte’s friends about her condition to make post-surgery school easier.
C and Doc YoungC and Liz

 

 

 

 

 

 

 

 

Thank you to Lurie Children’s Hospital and the Regenstein Cardiac Care Unit.Flock of DocsThank you to Charlotte’s incomparable teacher Alexandra Mignet and her 4th grade class for throwing Charlotte a party and Skyping with her while she was out. DSCN1235Thank you to Philippe and Team Charlotte for running the Move for the Kids 5K with Charlotte in celebration of Charlotte’s recovery and in support of “Charlotte’s Hospital.”

Team Charlote MFTK

And thank you to each and every one of you who never ever treat her like anything other than a regular kid. All things considered, 2015 was a good year.

Charlotte’s Journey Home began as a way to keep our family and friends informed throughout my pregnancy and in the first critical weeks and months of Charlotte’s life. Little did I dream that it would be a 10+ year endeavor. Nor did we realize that we would touch the lives of other parents of CHD children or of kids with severe reflux. Or find an adult role model for Charlotte, another Truncus Arteriosus patient (Jessica, that’s you). Or be befriended by a tour-de-force crusader for CHD research (Francie, you know who you are). It’s been a pretty good 10 year run.

As we head into the next phase of Charlotte’s life, she wants more privacy about her growth and life changes. And as there aren’t that many medical updates these days, it seems a good time to put Charlotte’s Journey Home on hiatus. We’ll be back when there’s a heart or medical update of import, or when we want your support for our endeavors on behalf of Lurie Children’s, or when we just are so proud we need to kvell loudly.

Until then, dear reader and Team Charlotte, one last THANK YOU for all the support you’ve offered our family for the past decade.

Three in Mexico

 

The Unstressed Stress Test

Charlotte went for her post-surgery exercise stress test yesterday. If you recall, she had a baseline test in January. For the details of the visit itself, check out that blog post–I was pretty specific about the machines, the hook-ups, etc. and how it all worked.

In January she was only able to move (a slow, steep walk into a steeper run) for about 7 minutes. She had to stop because she began to have pain in her chest, or in her heart as she put it.  Her lung capacity was 71%, lower than the average 80% for kids her age.

Yesterday she continued on to 10 minutes. She only stopped because the tube she had to breathe into was terribly uncomfortable–she was drooling around it, but her mouth was dry–and the knee she skinned on a carpet was really bugging her.

Happy Half-Birthday to Charlotte!!! (11/9/2015)

Happy Half-Birthday to Charlotte!!! (11/9/2015)

Unlike the test in January, the cardiologist in the room did not give us the full detail of lung function, etc. He just said that everything looked good and that he wasn’t worried about anything. We’ll expect a more full report from Dr. Young when she has a chance to read the EKG and other data.

We weren’t terribly surprised by what we did hear, though we loved hearing it. Charlotte is training for the Girls on the Run 5K which she and I will run on November 21. She regularly is asked to run for as long as she can in gym and usually gets to at least 12 minutes. She tells me that is longer than some of her other classmates.

She was thrilled to go to school for a half day on her half birthday! I was thrilled that all is as it should be: Her heart surgery in February is a memory, the scar is fading to white (finally), and our daughter is again thriving and keeping up with her friends.  A good day.

May His Memory Forever Be For a Blessing

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Christopher Saucedo’s World Trade Center as a Cloud, No. 4 is part of a papier-mâché series on display at the U.S. District Court in East Brooklyn through mid-November. Learn more by clicking on the photo.

The challah is churning in the breadmaker for a neighborhood Rosh Hashanah celebration this evening and I’m about to light a yarzheidt candle. I can’t help but think of 6 meaningful Shabbats shared with my friend Jeffrey at JFTY Urban Mitzvah Corps, countless High Holidays listening to his dad in our synagogue choir, confirmation class shenanigans, and an adolescent friendship that meant so very much. Thirteen years later, all I can do is repost this and say, Jeffrey, we’ll always miss you. Not just on 9/11, but every day.

Jeffrey B. Gardner died 6 years ago today when the World Trade Towers collapsed. I had known Jeffrey for as long as I can remember, growing up in the same town (Livingston NJ) and attending religious school at B’nai Jeshurun together.
More than a boy I grew up with, Jeffrey was a dear friend throughout my high school and college years. We were both socially conscious teenagers and active in our temple youth group and in JFTY, the Jersey Federation of Temple Youth.
Like all of the people who have signed his guest book, I can attest to Jeffrey’s special qualities–his goodness, kindness, wisdom, and sense of fun. I can also recall his pride as he listened to his father sing in the temple choir on the high holy days, his clear affection for his siblings, and his love for his mother.
Jeffrey and I, along with 20 other Jewish teens, spent a special summer together in 1982. As part of the JFTY Urban Mitzvah Corps, we lived in a fraternity house at Rutgers (later Jeffrey’s alma mater) and volunteered for various organizations in the New Brunswick area. We worked with the elderly, disadvantaged children, and the disabled. In the evenings we studied and played, enriching our Judaism and bonding as a group in a way that is immeasurable. Jeffrey lived his Jewish values and he taught us how much fun (and mischief) we could have within the limits of a moral, thoughtful life.
My father had a special place in his heart for Jeffrey. Not just because they were in the same business, but because Jeffrey was respectful, forthcoming, and friendly. In business, my father could count on Jeffrey, just as I could count on him as a friend.
Since Jeffrey’s death, I’ve learned that he continued to live those values for the rest of his far-too-short life. He read the Christian Bible and the Koran in order to understand other people’s belief systems. He volunteered with Habitat for Humanity throughout the hemisphere. He worked hard at his career and prospered.
In his obituary, his sister Amy noted that he had a sun tatooed on his ankle because “a good day was as bad as it got. ” Jeffrey shone like that sun. Even when we weren’t in touch for a long time (we hadn’t spoken for about 3 years before his death), I felt his presence and the mark that he made on my life.
On that perfect sunny September morning, a day eerily like today in Chicago, hatred hilled Jeffrey. The irony that intolerance killed a soul who embodied tolerance is not lost on me.
I dedicate today to Jeffrey–as sad as I am for his loss, I strive to live a life of which he would have been proud, to be tolerant and kind and strong as a tribute to his memory.
Rest in peace, dear friend. You are indeed Z”L (Zichrono Livracha), of blessed memory.

Please Help Me Make History for Lurie Children’s and Charlotte

In just over two weeks, I’ll walk on stage with my irreplaceable co-chair Tommy Horowitz Sheridan​ to welcome an audience of 1,015 to the 60th Annual Gold Coast Fashion Award Show. As a grateful parent, I couldn’t be more honored to have had the chance to pull together our first evening event. It is going to be a glamorous evening of celebration (yes, that means open bar) that you won’t want to miss—come as a couple or gather a group of friends. We are well on our way to breaking all of our previous fundraising records, and to a sellout event.

GCFAS_Invite Cover_Outlined

As you’ve heard me say, probably ad nauseum, Ann & Robert H. Lurie Children’s Hospital of Chicago​serves all of our children, from all legislative districts in Illinois, all 50 states and 48 countries. And if you don’t have kids, you know the hospital serves your neighbors, nieces/ nephews, students….all the kids you love.

Please join me in making history for Lurie Children’s—buy a ticket at http://www.gcfas.com and we can toast our efforts together. Can’t attend? Go to http://www.gcfas.com and buy a raffle ticket or make a donation!

There are fewer than 215 tickets left and they are going fast. Get yours now!

Thanks for all of your support over the past two years. I couldn’t have done any of it without you!

Sometimes You Look In the Rearview Mirror

Charlotte is off at her first full day of fifth grade. How did that happen? No, really, where did the time go?

I’ve been a negligent blogger, largely because co-chairing the 60th Gold Coast Fashion Award Show has taken more time than anticipated because we’re inventing an entirely new event. We’re in the home stretch and as I did some research to fact check our program book, I came across the following post.  It’s been a long time since I did an A-Z post, but if I had to write a new one, it wouldn’t be much different than what follows. I’m certainly less angry and weary, but the emotional response to Charlotte’s medical complexity still lies below the surface. I don’t think about it often because I’m way too busy hanging with my 5’1″, funny, sweet, happy FIFTH GRADER. How lucky are we?

(Your reward for reading the whole thing? Photos, of course!)

How I Am, From A to Z, On Charlotte’s 5 Month Birthday

Continue reading

Charlotte’s Corner: Happy Father’s Day

Let me just start by saying congratulations to my dad for his 10th Father’s Day. That’s pretty much a way to say both that I just turned 10 and that my dad is old. I’m not saying that that makes him any less awesome. And I’m not going to. After all, my parents have been lecturing talking to me about lying lately and saying that he wasn’t awesome would be much more than just a little fib. It would be HUGE GIANT  GINORMOUS!!!! He is the most awesome dad in the world. Of course, all girls think that their dads are the best. But I have never ever in the world met a dad that was more awesome than mine.

Funny Daddy

My dad is not only awesome, but also funny. I’m not going to talk about every occasion, because that would take all day week month year century. Here’s just one of the times when he was the most humiliating and hilarious person in my life:  At my birthday party, I had a slumber party and I took all my friends bowling. When it was someones turn, he’d sing their names like an opera song. For instance, Charlooooote! And my dad has this big, loud, deep voice so I’m pretty sure everyone from where we were to ten rows down heard him.

Inside Out

Tomorrow, we are going to see Inside Out. It is so popular. There is even an Inside Out Disney… something or rather. I’m really exited to see it. So is Dad. I really have nothing else to say.

The End

I hope everyone got the message of this blog post. If not here: My dad is awesome.

 

 

THE END 

 

10 Years Ago Today

As I made my coffee a few minutes ago, I was struck by the date. Ten years ago today, I clutched my coffee in a paper cup as Philippe and I awaited hourly updates from Julie about our tiny baby daughter’s first open heart surgery.  Goldman-R1-048-22AThe day had begun excruciatingly early for a mom recovering from a C-section. We arrived at dawn at the hospital and, shortly thereafter, handed our bundle of seven-day-old love to a very tall anesthesiology fellow who promised to care for her as if she was his own. We turned to walk down the stark white hall of the surgery suite towards the waiting room and Philippe nearly collapsed in my arms, overwrought with concern and fear.

Today, Philippe was, as usual, up with the sun. I’m savoring my coffee on the front porch in my favorite kitty mug waiting for him to come home from doing some early morning errands. Charlotte is upstairs, sleeping or reading. I don’t know, I haven’t seen her yet. I do know that she is safe, sound, and healthy thanks to the doctors that cared for her on May 16, 2005–Drs. Carl Backer, Gus Mavroudis, and Bob Stewart.DSCN1268

In our deep gratitude, all three of us will participate tomorrow in Move for the Kids 5K in support of Ann & Robert H. Lurie Children’s Hospital of Chicago. Just 3 months after her third open heart surgery, Charlotte–now a 5″ tall 10 year old–will run the race with her Dad, Dr. Luciana Young (her cardiologist), and several of her classmates. I’ll walk with Charlotte’s teacher, Alexandra Mignet, and several other classmates and their parents.

Team Charlotte is halfway to its $5K for 5K fundraising goal. There is still time to support us! You can click the link above or the image below and donate OR you can find us at Tent #10 tomorrow around 8:30 a.m. (full race details on the race site), register on site, and walk/run with us.

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With Dr. Young

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Dr. Backer

Team Charlotte walks as part of the Children’s Service Board. For the 4th or 5th year in a row, the CSB is the leading fundraising group for the walk. We thank you for keeping us in the lead. And, moreover, for helping Lurie Children’s make it 75% of the way to its fundraising goal for tomorrow.

MFTK 2015

Happy Birthday, Charlotte!

On May 9, 2005 darling Charlotte came into the world four weeks early. On May 9, 2006, I started my blog tradition of a letter to Charlotte on her birthday. In a perfect world, the letter would have been written and posted last night. Our world, however, is not perfect, so she’ll have to read it tomorrow!

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My dearest Charlotte,

My mind cannot process the fact that you are ten years old today. What a magical and frustrating age (for you and for us, I’m sure)! You still have one foot firmly grounded in childhood–as easily awed by the wonders of the world as you are amused by my (sometimes lame) jokes, as eager to please as you are quick to anger and frustrate, and as creative, strong, and kind as you ever have been. Your other foot is on the edge of your biggest journey, into adulthood. I can see that it frightens you a bit, the vast future in which you need to figure out who you’ll be and how you’ll get there.

While the road ahead may be frightening, it will hold as many wonders and as much love as you let it. And there will be potholes (the first of which we hit, literally, on the way home tonight).  You have already traveled further than many ten year olds. You have proven again and again that you are a survivor with a healthy sense of humor. Don’t believe me? Just take a look…

First Birthday  On May 9, 2005, we gave you a cupcake, Karley took a photo, and we went out to dinner (without you) to celebrate having survived a year that included premature birth, heart surgery, 49 days in the hospital, g-tube insertion, cardiac catheterization, and a cranio helmet, not to mention countless vomits, physical therapy, feeding therapy, meds, and more. You were thoroughly unimpressed by the cupcake as you were still largely tube-fed and tiny. A few years after this picture was taken, I finally realized just how scrawny your legs were and how huge your eyes looked in your head. You were (and are) our darling, energetic, bright star; we never saw what others saw–that your legs looked like skin-covered toothpicks. Only looking at this photo now can I understand the concern with which people always asked about your health.

Today’s photo says it all, and yet says nothing. You are still our shining star. And now you know it and ham it up as often as you can. We began your special day with a trip to tour Frank Lloyd Wright’s Robie House because you were inspired by Blue Balliet‘s The Wright Three. Then, instead of your regular cod with chipotle mayo birthday dinner, we took you to our favorite upscale casual restaurant, Summer House Santa Monica. DSCN1414

What this picture doesn’t show is how brave and strong you are or how similar and yet how different this past year has been from that first year. Again, you’ve had a cardiac MRI and open heart surgery. (That broken pinky is nearly forgotten). This time, you kind of diagnosed yourself and let us know something was wrong. There was no drama and you had a textbook recovery. You courageously shared your surgery with your classmates, and in turn they showed you unparalleled compassion. That’s the big stuff. On the smaller side, you went to sleep away camp for the first time, mastered long division, and proved that you can learn a hard piano piece if you put your mind to it. You’ve taken your chess game to the next level, played the piano for charity (the week of your surgery), and given your Belgian grandmother one of her best ever Christmases. My heart skipped a beat when you put change in the tzedakah box this morning, saying that you didn’t feel right keeping Jenny’s entire $10 gift for yourself.

Best of all, you greet nearly every day with a smile or a full on giggle. Ever since you were a baby you have seemed to sense how precious a gift each day is.

So, my darling girl, as you step onto this road ahead, know that you will grow back into the comfort you have with your scars. They do not define you–they decorate you much as the medals on the epaulets of a soldier’s uniform do. You have won the battle, with the help of the inestimable Team Charlotte.

This year Team Charlotte is too vast to mention, for fear that I’ll leave out some wonderful nurse or tech at Lurie Children’s Regenstein Cardiac Care Unit. Thank you all, from the bottom of our hearts.

Charlotte, may you ever grow from strength to strength. And as I tell you each day on your way to school, be calm, curious and creative and remember that I love you, all day, every day.

MFTK 2015

On May 17, Charlotte will be RUNNING a 5K, Move for the Kids, to raise money for Ann & Robert H. Lurie Children’s Hospital. Charlotte chose this race, which she’ll run with her dad and her cardiologist, to mark her full recovery. Please click on the icon to support Team Charlotte. And register to walk or run with us!

For the First Time In Forever, A Cardio Check-Up Report

Watching her skip to the car this morning, I struggled to remember that six weeks ago today Charlotte underwent her third open heart surgery. But, it was 7:00 the morning and we were headed to see Dr. Young for Charlotte’s post-op cardiology check up.

After patiently lying still for the shortest EKG in history and watching “Frozen” for 30 minutes during the echo, Charlotte eagerly awaited Dr. Young’s verdict: Could she resume her full activities, and then some? Or not?DSCN1265

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I’m not sure who is happier, Charlotte or Dr. Young.

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Charlotte and another original Team Charlotte member, the excellent Liz Capella, APN extraordinaire.

Dr. Young’s exact words: “I’m really pleased with what I’m seeing on the echo.”  The conduit and valve are working nicely. She is seeing some turbulence in the valve, but nothing that concerns her too much. Turbulence can be heard through the stethoscope, so Charlotte’s “thump-swoosh” may still be her defining sound. (She was concerned about that.)

Charlotte has Dr. Young’s full approval to return to her full activities, such as gym and (drum roll please) carrying her own backpack!

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After school, Charlotte couldn’t wait to get on her scooter, “For the first time in forever.” I have no words, really, for our gratitude.

We know how blessed we are that Charlotte continues to have best-case scenario outcomes. And we are so very grateful to Team Charlotte–the doctors and nurses who make sure that she continues from strength to strength and who clearly love their work. Please join us in our gratitude and Move for the Kids on May 17, in a 5K to support Ann & Robert H. Lurie Children’s Hospital of Chicago. Click below to join Team Charlotte. And if you can’t walk or run, please donate to help us reach our $5,000 goal.

MFTK 2015