Charlotte's Journey Home

Just a Regular Kid, Sort Of


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Charlotte and Poetry in Motion ( A Recent Adventure)

We took Charlotte to Salem last weekend. The intent was to spend a day in Marblehead looking at beaches and boats and spend the next day at the Salem Witch Museum and the Peabody Essex.

We went to the Peabody Essex Museum first and were all so enthralled that the witches will just have to wait for another day. If you know Charlotte, you know that missing witches is a big deal, so I was pretty thrilled.

Charlotte wanted most of all to explore the Maritime Art collection. She was mesmerized by paintings of boats on the ocean, pictures of pirates, and questions of attribution.  Charlotte has been learning about perspective and volume in art class this year, and especially the notion of making things look real.  She was particularly impressed by this painting:

Thomas M. Hoyne, New Ways on Banquereau, 1981, Peabody Essex Museum

She talked about how glassy the water looked and we discussed how the artist might have used different colors to get the boaters’ reflection.  We were all tickled that the artist’s name was the same as our old street in Chicago.

While we were in Salem, MassPoetry was sponsoring its fourth festival of poetry in honor of National Poetry Month.  We were mesmerized by the poetry performance of David Zucker.  You can read more about that performance over at Culture Bean.  Here I want to share Charlotte’s enthusiasm for the performance in the pictures Philippe snapped and in her haiku inspired, on the spot, by Zucker’s performance of haikus:

A Haiku by Charlotte
I love summer its
so fun! You get to play out-
side. I see fairies!

It may be the last day of National Poetry Month, but it certainly isn’t the last day to enjoy poetry.  We’ll be reading more and more of it.


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Prepare to Be Amazed

On June 9, 2012 Children’s Memorial Hospital, or “Charlotte’s Hospital” as we call it, will move into its new home and become the Ann and Robert H. Lurie Children’s Hospital of Chicago.

I was fortunate to attend the hospital ground breaking with my mother on April 21, 2008. Charlotte and I attended the “Topping Off” ceremony when the last beam was hoisted to the very top of the tower on December 7, 2009.

To complete the symmetry, Philippe and I joined my fellow Children’s Service Board members and their spouses on Tuesday for a special ribbon cutting ceremony and tour. I simply don’t have the words to describe the emotions we had so I will instead share with a few pictures.

Lurie Children’s has been designed to improve children’s care from myriad perspectives. The building and its furnishings feature the latest in technology and in green design. The designers also considered ways to reduce children’s and their parents’ stress, to make all elements of a hospital stay more palatable and convenient. They enlisted the aid of parents, patients, doctors, and staff to understand how each group uses the hospital and what they need.

Teenage and adolescent girls said they needed to look good in order to feel good: The new hospital has a salon that will be staffed by volunteers from the Neiman Marcus salon. Children of all ages said they needed to get fresh air: The sky lobby features two “pocket gardens” that allow children to safely go outdoors, on the 11th floor, enjoy fresh air and view of Lake Michigan. Doctors needed better teaching spaces and collaboration options: Surgical suites have most equipment on ceiling-mounted swing arms to allow for more fluid movement and there is a conference room that can accomodate 300 or be split into 3 smaller classrooms. It won’t hurt that this room has panoramic views of Chicago and Lake Michigan!

Learn more about the the evidence-based design here.

Ground floor lobby at 225 E. Chicago Avenue, in the heart of Streeterville and strategically placed on the campus of Northwestern Memorial Hospital to foster a even more collaborative learning and care environment with doctors and researchers at NMH, Prentice Women’s Hospital and the Rehab Institute. The whales were donated by the Shedd Aquarium.  . More than twenty cultural organizations contributed to the kid-friendly design of the space. 

My honey at the Siragusa Lobby Elevator ready for the big tour. Thanks Philippe for making possible the work I do for the hospital and for supporting the CSB in many ways! You can’t see it, but his tie is the CMH hand printed on a blue field. He matched our name tags!

Windows around the lobby feature discovery boxes created by the Field Museum

Follow the escalators (or take an elevator) to the second floor reception area where you can access the Emergency Department.

The ED entrance is to the right of this REAL aquarium (Thank You, Shedd!) which is visible from  the ED waiting area as well. The sculptures are meant to be climbed on.

A video collage wall by  Jaume Plensa, the artist who designed the Crown Fountains in Millennium Park.

The ED goes on forever. It is HUGE. It features triage space, urgent care, and trauma rooms. A CT space is designed to look like a yellow
submarine.

 Even the elevators are fun! Each one has a unique design. One even has buttons that when pushed make the sounds of bike bells, car horns, and other city street noises. The elevator bays feature photo art with animals collaged into Chicago landmarks

Mary Hess and I feel 6′ tall in this elevator!

Operating Suites each have a mural designed to entertain (and calm) children. OR prep and recovery will occur in private glass-doored pods. Equipment in ORs is mounted from the ceiling to allow better movement in the room. And there is a robotic surgery capability in one of the suites!

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There’s art EVERYWHERE. Some by kids (we didn’t get photos of that) and some by  famous and generous Chicago artists. This artist did all the photo-collages for the elevator bays.

And, yes, there is a REAL fire truck in the hospital.  You can turn on the lights, steer, and honk the horn. No sirens, of course. Some local set designers built an old-style firehouse around it.  Philippe had a blast! Custom-designed fire truck cab donated by Pierce Manufacturing, 12th floor.

 Space for families to relax, regroup, cry, eat, rest. Including private kitchens, gorgeous views, work spaces, and more.

All private rooms, with day beds for parents, closets, cubbies for stuffed animals, private bathrooms and large flat screen t.v.s
The views. Need I say more?
The Executive Committee cuts the ribbon on the Children’s Service Board Security Desk, 11th floor Sky Lobby.

A Lego model of the hospital. If negotiations go well, kits will be available for purchase in the Gift Store. The colored panel represent the windows whose light design will change periodically, and be designed by critically ill inpatients

Stay tuned for a link to an album of more pictures and more fun facts as we count down to Moving Day!

To learn more about the Ann and Robert H. Lurie Children’s Hospital of Chicago click here.

A hospital this amazing takes a lot of heroes. If you aren’t already, or if you’re inspired to do so again, join the Heroes for Life campaign with a donation of any size that moves you. Be a part of this historic moment in the life of a world class hospital, Charlotte’s Hospital!, and world class city.  Just click on the picture or here to learn even more about this AMAZING hospital and donate!


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Charlotte’s Corner: Charlotte’s Earth Day Thoughts

Editor’s Note: With today’s entry, we introduce a new feature for Charlotte’s Journey Home, “Charlotte’s Corner.” In this periodic column, Charlotte will weigh in with her own words and thoughts about what is important to her. She will regularly discuss books, nature, school, and other things that she wants to share. I’ve been blogging Charlotte’s life since before she was born. She’s decided that it is time for her to help author the story. I’m proud to type her words, but other than correcting some spelling and grammar, I promise to stand by and read along with you. Bravo, Charlotte!

“Nature”
an essay for Earth Day by Charlotte
Water: Water is dirty because of us! We have to save it!!
Trees: Trash is bad for them. We have to stop throwing trash and recycle!
Animals: Animals are extra important. They feed us, so we have to help them! Did you know that animals were made from the first fish, lion, cheetah, hamster, cat , dog, bear, etc? And, that those animals had babies? And, those babies grew up and had babies, etc.? Well, now you do. But, the big question is who made the first animal?
And did you know that if animals didn’t eat other animals we wouldn’t survive because we would only eat half of our healthy diet? And did you know that some animals are disappearing from the world like dinosaurs did? Some fish are. A lot of animals are, but you can help!
Here’s what you do: You buy fish that is responsibly fished and farmed! Fish are at the bottom of the ocean food chain, sort of, and doing that helps every animal that eats fish and that is a good start!It helps almost every animal including sharks, dolphins, and even other fish! And animals that live on land like cats, bears, dogs, sometimes lions, etc.!
And did you know that cheetahs are not only fast runners, but they climb trees, too? And, the baboon runs on land as well as it climbs a tree?
Did you know that paper is made from trees? Did you know that trees make the air clean so it is important not to cut them down even for Christmas trees?
Animals need food and water to survive and some of the food is disappearing so the predator is too because it can’t eat! And trees are getting cut down and that’s bad for animals like giraffes and sloths because they eat leaves! It is really bad for sloths because they can’t hang in the trees and rest! Same for leopards and cheetahs so it’s REALLY IMPORTANT to not cut trees down! If you still can’t understand why…it’s because it makes animals that live in trees and eat leaves not live BECAUSE…they can’t rest or eat! And they probably can’t make other lives BECAUSE they’re already into their first life! And that’s bad because giraffes, sloths, maybe cheetahs and leopards would die!
Why? BECAUSE not only those animals would die, BUT the animals that eat these animals would die. Why? BECAUSE the predators couldn’t eat their food ! Trash is also bad for them BECAUSE plastic bags could go into the ocean and get eaten by the sea turtles who thought they were jellyfish and ate them. OOPS! It was a plastic bag because the sea turtle would die. BECAUSE the plastic bag would poison it.

Bibliographic notes gleaned by editor in an interview with Charlotte: Charlotte learned about nature, the food chain, and the ocean from PBS’s “The Cat in the Hat Knows a Lot About That,” Scholastic News, “Ivy and Bean: What’s the Big Idea?,” her bilingual class at The International School of Boston, Mark Kurlansky’s “World without Fish,” and various dinner table conversations with Mom and Dad.
Photos: At top, Charlotte enjoys a gorgeous day on the Cliffwalk in Newport, RI.
At bottom, Charlotte chats with a gecko at Boston’s Museum of Science.


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But, she doesn’t like hot dogs

Some of the ice cream actually gets in her, too!!

It’s been a long time since I wrote about Charlotte and food. But it recently occurred to me that it has been more than 4 years since we had to connect the tube to her tummy and set up the Kangaroo machine, more than 4 years since we’ve dealt with projectile vomiting, medical supply delivery, and the associated anxiety of not being able to nourish our kiddo. It’s been almost 4 years since we stopped logging calories and about 3 or so since we stopped consciously counting calories.

Charlotte eats. And eats. And eats. Occasionally the sheer quantity of what she eats astounds us: This morning’s breakfast began with a toaster waffle, yogurt, and fruit. Then she had an English muffin. Then another toaster waffle. For lunch, she ate two helpings of butter chicken and half a naan at an Indian buffet, followed by chocolate brownie ice cream. On Saturday, while other children were eating hot dogs (Kobe beef on brioche, it must be said), Charlotte was slurping up New England clam chowder and Rhode Island calamari (spicy). She is adventurous with food, able to find something she’ll eat on just about any restaurant menu.

Among her other favorite foods:

  • Panko-crusted cod with chipotle mayonaise

    • Anything with black beans (burgers; black bean and sweet potato chili; Brazilian-style black beans and rice)
    • Thai red bean chili
    • Lentil and artichoke stew
    • Artichokes with garlic aioli
    • Leek pie (made with Dijon country mustard, from The Greens Cookbook)
    • Pasta Puttanesca (made by her friend Sarah’s dad)
    • Chevre and hard-boiled egg on challah
    • Portabello mushrooms stuffed with spinach and ricotta (though she doesn’t like spinach alone)
    • Avocado, pineapple, strawberries
    • Salmon, cooked about any way I can make it
    • Swordfish grilled with salt and pepper; or with Thai marinade

    And, of course, some old standards like PB&J, nutella sandwiches, mac & cheese (especially from Panera).

    We’re actually surprised she likes these last few things as she ate them pureed and over-loaded when we had to create extra-high calorie food for her.


    Here’s the thing: Charlotte was tube-fed to SAVE her life. She had been diagnosed with “failure to thrive.” Post-heart surgery she didn’t have the strength to eat enough. After five months of an NG-tube, her little baby cheeks were ravaged by the tape we used to hold it on her face. She managed to pull the tube out. And even at five months, she hated that NG-tube so much that she managed to prevent it from being inserted. It was heart-breaking, but necessary. We “decided” to have a G-tube surgically inserted to save her from the trauma of the NG-tube. It was one of the best decisions we’ve ever made.

    So, you can imagine my reaction when I read the New York Times‘s piece, “Bridal Hunger Games” last Sunday. If you didn’t see it, here’s the gist: There are women so obsessed by being thin for their wedding day that they are willing to voluntarily have an NG-tube shoved down their nose into their stomach to provide only liquid nutrition. This “diet” allows them to lose weight fast. One woman lost weight too fast, so she took it out early. My heart does NOT break for her. And, there are doctors who are willing to use this life-saving technology to aid and abet these brides. I’m not sure if this is an extreme form of narcissism or a seriously warped view of beauty norms. Whichever it is, I was beyond appalled.

    As a critic of popular culture, I plan to step back and look at how this reality (and the reality shows about losing weight) line up with/contrast the new fat-as-normal of shows like “Mike and Molly”. What do these cultural phenomena say about beauty norms in the 21st century?

    As a mom, I need to figure out what I can do to help my child grow up with a positive body image?

    Right now, I don’t know the answer to either question. But, I’m fuming a bit less about what that article reports. And, I am still kvelling about all that Charlotte will eat.