Charlotte's Journey Home

Just a Regular Kid, Sort Of


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Happy Heart-a-versary to My Heart Warrior

Charlotte’s eleventh birthday was last Monday, though the celebrations began on April 30. By the actual birthday, Charlotte had had a slumber party (with cupcakes), a special date with Dad to see her Red Sox beat the White Sox (with ice cream), and fancy sushi with both of us (with ice cream x 2). On Monday, she had, as she has for at least 6 years, fried cod with chipotle mayonnaise and a homemade chocolate cake. The only thing she didn’t get was her annual birthday letter on the blog and a present from me.Today was a regular Monday. So regular, in fact, that I nearly forgot that it was Charlotte’s heart-aversary.

 

Eleven years ago today, Charlotte had her first open-heart surgery.  As I wrote in 2011:

“Today, we pause to celebrate–a bit more somberly perhaps, but with equal amounts of joy–Charlotte’s heart-a-versary.

 Six years ago today, we handed our teeny-tiny baby to the anesthesiologist. I remember him as being quite tall and having an Australian accent, but I was post-surgery myself so am an unreliable witness. He cradled her in his arms and we all walked to the operating suite. There we gave our baby, our hopes, and our trust to the great good team of Drs. Mavroudis, Backer, and Stewart. On the way to the waiting room, Philippe collapsed in my arms.
We waited. And waited. And then Dr. Mavroudis came to us smiling, telling us that Charlotte was back in her room and the nurses were setting up her meds. I think that was the first time we breathed all day.”
Last year, just three months after her third open-heart surgery, the significance of her heart-a-versary was not lost on me:

“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.”

We will never stop being grateful to the doctors and staff at Lurie Children’s. And we’ll never cease to be amazed when we hear another parent’s gratitude–as we did tonight when an acquaintance told us that her son (who has an 18-year old daughter) had his CHD repaired at Lurie Children’s. Every now and then, the enormity of what might have been washes over me. More than once I have been reduced to sobs–the tears that never came on May 16, 2005. The tears I couldn’t cry because I wouldn’t let myself think about what was really happening in that surgical suite. The tears Philippe shed, in full knowledge that the outcome might have been completely other.

We are so blessed to have this magnificent facility in our backyard. It was with this gratitude that Philippe, Charlotte and I, along with Charlotte’s first babysitter, Karley, and her Chicago grandmother, Jenny, and a host of other friends and friends of friends participated yesterday in Move for the Kids. Team Charlotte has raised $2,787 towards our $5,000 goal. In honor of Charlotte’s 11th heart-a-versary, please join us in supporting Lurie Children’s by supporting our walk. You can still donate to Team Charlotte (just click the link).

No birthday letter this year, but as always, we love you, Charlotte. May you continue to grow from strength to strength.

 

 


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Won’t You Join Team Charlotte on May 15, 2016 and MOVE FOR THE KIDS?

You’ve been with us from the beginning, from the first emails we sent in early 2005. So, you’ve heard me ask this a lot—please help us support Lurie Children’s. Specifically: Philippe, Charlotte and I would like to invite local Team Charlotte members to join us at Soldiers Field on Sunday, May 15 for Move for the Kids 5K, a fun family outing that supports Lurie Children’s  and long-distance team members to support us as “virtual participants” (yes, that’s a thing!)MFTK 2015

We know that we are not the only family on this list who has experienced first hand the extraordinary care given by the doctors and staff at Lurie Children’s or had their child comforted by the patient-friendly surroundings of the new hospital. In fact, some of you have probably spent more time there than we have. Whether it has been a visit to the ER for an injury or illness, a tonsillectomy, asthma, allergies, or surgery, if your child has been a patient at Lurie Children’s, we’re pretty sure you understand why we are so committed to the hospital.

We have never been more aware of the power and importance of philanthropy than during our 5-night stay in the Regenstein Cardiac Critical Care Unit last year. The doctors and staff rely on philanthropic dollars to ensure that they can continue to care for any child, regardless of their ability to pay; to do cutting-edge research; and to recruit the finest minds in pediatric medicine. The hospital is truly a gift to our children, and to the 174,000 children from 50 states and 40 countries that it treats each year.

So…join Team Charlotte (click on the link) and walk or run with us! Strollers are welcome, but pets aren’t.

Team Charlote MFTK

Team Charlotte 2015

If you can’t walk or run on May 15, perhaps you’ll consider a donation to help us meet our Team Charlotte goal of $5,000?


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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.

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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!


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I Promise to Blog Again…In the Meantime, Can You Help “Charlotte’s” Hospital?

A message from this once and future blogger. Not exactly a word from our sponsor, but a word about what we sponsor and what we are most grateful for.

As most of you know, when Charlotte was 6 months old I joined the Children’s Service Board of the Ann and Robert H. Lurie Children’s Hospital of Chicago. In helping the CSB raise millions of dollars over the past 7+ years, I have been fulfilling our commitment to give back to the hospital and doctors that saved Charlotte’s life. When you see pictures of Charlotte today, or have the chance to visit with her, it is hard to remember that she was gravely ill and that in her 49-day hospital stay there were several times that we were not sure she’d see her first birthday, let alone be planning for her ninth.

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As a member of the Ann & Robert H. Lurie Children’s Service Board, I am committed to ensuring that the hospital is a caring “second home” for kids during a hospital stay. Thanks to fundraising events such as the Gold Coast Fashion Award Show, the Children’s Service Board is only $50,000 away from reaching our $3 million commitment to pediatric surgery.  Your generous support and partnership help make it possible for Lurie Children’s Pediatric Surgery Specialists to focus exclusively on healing the smallest members of our community—our funds have enabled recruiting, retention of a dedicated interpreter, and much more.  

I hope that as the year ends you will consider giving a meaningful gift to Lurie Children’s and help the Children’s Service Board meet its goal.  No amount is too small. This year, it’s doubly important for me—I’ll be chairing our signature event for the next two years and want to be able to focus on whatever our new mission will be.  I’m a bit nervous about this new endeavor and promise to blog about it as part of Charlotte’s journey–she’ll be in attendance on September 19 (and you can be, too!).

The Children’s Service Board and Lurie Children’s strive to make Chicago the healthiest place in the nation for kids. Our specialists are capitalizing on their proximity to Northwestern Memorial Hospital, the Rehab Institute of Chicago, and Prentice Women’s Hospital to advance research to keep our kids healthy–research into congenital heart defects, pediatric cancer, simulated surgery, and much, much more. The more learn about the hospital, the more passionate I am. And if you’d like to learn more, or tour our amazing facility, just let me know.

Philippe and I thank you for your support throughout Charlotte’s journey—it has meant so much and will continue to mean a lot as she faces the inevitable challenges and further surgeries in her life. And I thank you for considering my request.

To donate, simply click on the image above or copy the URL into your browser.