Charlotte's Journey Home's New Home

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Find Charlotte at Charlottesjourneyhome.com

It's official, Charlotte's Journey Home can now be found in its entirety at Charlottesjourneyhome.com.

We’ve moved. Children’s Hospital has moved. Now it’s time for Charlotte’s Journey Home to move. I’ve decided to move to WordPress so that when I write I only have to use one platform (my other blog, Culture Bean, originated there. Like that blatant plug?).

Blogger has been home for seven years and I'm oddly grateful to the platform. "Oddly" because it seems odd to be grateful to a platform. But, on that fateful day when my mother said, "Why don't you start a blog?" (and, no, she had no idea what a blog was, just that I should have one!), there weren't a lot of choices.  CaringBridge and CarePages were in their infancy and were not available to me, Children's Memorial did not have WiFi, and there were only 3 or 4 computers available to parents.  The blog replaced an email circle, inspired by my late friend Jennifer, her husband Karl, and the courageous way they shared her illness in 2001.

My, how things have changed!  Children's Memorial is now Lurie Children's. The hospital's website has a direct link to CarePages, internet in patient rooms, and, through a generous donation, iPads for use by long-term patients.

I no longer blog by the glow of the streetlight as Charlotte's Kangaroo pump clicks away feeding her. Today, I blog between notes as Charlotte attempts to practice the piano on her electric keyboard (hard to transpose songs when she only has 66 keys, but she gets kudos for trying).

So, it's time for a change. I've imported all previous posts to the new site and hope you'll join us there as Charlotte continues her spectacular journey.

Thank you, from the bottom of our hearts, for being with us throughout all of it.

Charlotte Journeys Home

We've had quite an adventure over that past week or so.  For the third time in about 18 months, we watched movers pack up our household and load it onto a truck. This time, instead of moving closer to Charlotte's school (as we did last summer), we are again relocating. We've moved back to Chicago, lured by a career opportunity that Philippe simply couldn't pass up.

Charlotte spent last week in tennis camp while the movers packed and loaded the truck. Each day, she came home and was a bit disappointed by the progress that had been made. First, she felt a bit discomfited because so much of her room had been packed up. She told me that she would feel uncomfortable not seeing her art table and stuffed animals if she woke up in the middle of the night, that seeing her things comforted her and helped her go back to sleep.  Just like her daddy, Charlotte "likes her furniture."  Since Philippe was in New York that night, I had her sleep with me.

The next day she was simply bored because all her toys were packed up.  I think she was actually tired from 7 hours of tennis camp, to tell you the truth. Since her piano wasn't yet wrapped, I suggested she play, which she happily did until dinner time. After dinner, she collapsed into bed.

Wednesday night I distracted her with an outing to her favorite restaurant, Stone Hearth Pizza, followed by a trip to Rancatore's Ice Cream. By the time we got home, she was too tired to realize that the house was half-empty.

Phil's Knightrider: The Volvo is the last item loaded onto the truck.

Charlotte on a lobby couch at the Hotel Marlowe. Kid was TIRED.

By Thursday night, all of our belongings were on the truck, including the car.  We packed up a rental SUV and all of us (me, Philippe, Charlotte and the kitties) spent the night at the Hotel Marlowe in Cambridge.

While Charlotte had her last morning at tennis camp, we got the house cleaned, Philippe spackled the walls where we'd hung things, and we walked through with our landlady.



Then we hit the road. We split the trip into three five-ish hour legs to assure that the cats wouldn't be in their boxes too long and Charlotte wouldn't get too antsy.

We needn't have worried about Charlotte: As long as she had the iPad and could eat McDonald's or ice cream when we stopped, she was just peachy. I think she watched Bolt three times. She did some word searches and read a few chapters of Dragons of Blueland. Yesterday, I'm pretty sure she played My Horse (thanks, Bamma) all the way from Cleveland to Chicago.

The cats also did better than last time, perhaps because we were all together and each day was a bit shorter than Phil's last cross-country trek with them.

Road trip ice cream en route from Syracuse to Cleveland.

Philippe booked hotels that were cat-friendly and had pools. By the time we go to Cleveland, Charlotte was too tired to go the pool!  She was eager enough to arrive in Chicago that she was happy to skip the pool yesterday morning. Or, maybe she just wanted to get back to the iPad.

As we rounded the bend on the Chicago Skyway and got our first glimpse of the hazy skyline, I asked Charlotte what she thought. She said, "It's beautiful and a bit scary." We asked why it was scary and she said, "Because it's familiar, and not."

Charlotte has been amazing through all of this--from the day we told her we were moving through this very moment. She's got decidedly mixed feelings about this move. She has made some wonderful friends in Boston, real friends with whom she shares secrets, makes up games, and has inside jokes. She'll miss them. And she's afraid they won't remember her or answer letters.  

Charlotte and Esther Williams in Cleveland.

On the other hand, she knows she is returning to a school she remembers (sort of). Walking through the  Lycée Français de Chicago building a few weeks ago, she was heartened that some of her old friends waved at her and her teachers greeted her with nothing short of glee. She'll return to the awesome Fred's Camp next week where she'll spend the summer with a couple of classmates from the Lycée; we're hoping that will ease her transition.

Right now she is as tired as I've ever seen her. It's 9:15 a.m. in Chicago, 10:15 EST (the time zone her body is used to), and she is still asleep. Since our apartment has eastern views, she's had the sun in her room since 5 a.m., but  that hasn't made a difference. 

When she gets up, we'll go to the pool (we love corporate housing for summer) and probably walk by "Charlotte's Hospital." You see, the one thing she knows for sure, the one question she didn't ask this time that she asked last time was "What hospital will I go to? And who will my doctors be?" She knows that Chicago is the land of "Charlotte's Hospital" and her doctors await her. 

We're not quite "home" yet as we need to find a house. But we're here, safe and sound, in Chicago, the place Charlotte was clearly meant to be.

Happy Father's Day!

Then (August 9, 2005)

Now (June 17, 2012)

Some things never change!
Happy Father's Day to Charlotte's Dad!

It's Almost Moving Day! Prepare to be AMAZED.

Not our moving day. That's not for another (gasp) 3 weeks or so. But, Children's Memorial Hospital will be moving to its new home in the Streeterville neighborhood of Chicago on June 9.

On Monday, June 4, the ribbon was cut on the new building and CMH officially became the Ann and Robert H. Lurie Children's Hospital of Chicago.  Though we didn't attend that ribbon-cutting, Charlotte and I did get stuck in the traffic it created while we were in town on a house-hunting trip.

ABCNews Chicago covered the event. Please click here to check out the opening, and even more interesting, the plans to move up to 200 critically ill patients about 3 miles down the road in 20+ ambulances on Saturday. It's extraordinary.

While we are thrilled about the opening of the new hospital, and proud to have played a small role through the Children's Service Board, we recognize how many parents and families mourn the loss of the facility in which they saw their child's last smile or held a beloved baby through a last breath.  As I wrote to Mary Tyler Mom in response to her loving elegy for the old CMH, the hand that her Donna saw as a beacon of hope will now light up Streeterville in a vivid tribute to the families and children whose lives have been touched since Julia Foster Porter opened an 8-bed hospital cottage, the Maurice Porter Memorial, at Halsted and Belden.

What better tribute to the memory of Ms. Porter, and of the children who passed through those hallowed halls, than to celebrate 125 years of pediatric medical excellence with the opening of the Ann and Robert H. Lurie Children's Hospital of Chicago?  I think Ms. Porter would approve.

Thank you, Team Charlotte, for your unflagging support of our family's journey. Charlotte is happy to be "going home" to Chicago and to "her" hospital.

No mention of the hospital can be complete without a pitch. Here's a link to Team Charlotte's page at Give Kids a Hand. To date, you have helped me raise $7,155 for Lurie's. In honor of MTM's Donna and Ms. Porter and all who dared to dream that pediatric medical excellence had a home in Chicago, won't you help me make it an even $10,000?

Keep scrolling for some Children's Memorial Hospital memories:

Where we began. May 10 (0r so) 2005. Before surgery.

May 16, 2005 after surgery. That's Charlotte under all those tubes and wires.

Charlotte (18 months) "poses" for an x-ray. They only way we could get her to stop crying was to have her smile for the camera. (2007)

Nurse Julie with sleepy Charlotte pre-second surgery. (2007) 

The only good thing about Radiology's waiting area...the kinetic sculpture. 

Fascinated by the bandaid over her blood draw poke. Last bandaid Charlotte tolerated, I think.

Waiting (and waiting) for Dr. Backer to come get her for surgery.  Ultimately, we went back the next day. Charlotte was a trooper.

Post-op, 2007.

Uncle Hal just couldn't stay away (2007).

The PICU Guardians. Yes, Bubba used to be a lovely (clean) golden color and sit up straight (2005).

Lung scan with IV (and video to watch). Not fun. (2008)

Certificate of Bravery for above. Charlotte rocks. And CMH staff knows how to help her through it all.

 Charlotte helps Dance Marathon Chicago get psyched (2010). She loves "her" hospital and likes helping raise money for it.

Spring, 2010.

Lurie Children's Hospital Lego(tm) Structure, Children's Service Board Security Desk, 11th floor, Ann and Robert H. Lurie Children's Hospital (2012)

Charlotte's Corner: More on Nature

Thoughts on Earth Week at School

by Charlotte

Editor's note: I've put this into past tense as Earth Week was the week of 4/22. I'm not sure if Charlotte thinks this post is complete, but I wanted to get it up so we can get her to write more!

Earth Week was a few weeks ago and the whole school made a special effort to be good to the Earth. We had Black Out Day--No one used the computer or lights for the whole entire day. The directrice didn't use the computer. Same fro the teachers. For me the rule is "Every Day is Earth Day,"* which means we should treat the Earth well every day!

You know, we live on the earth and if the earth was not there, humans would not be here either. Wouldn't it be different?  At lunch I watched a film about the different places on Earth and who lives in those places? I saw a desert, the ocean, sea turtles, and sea stars! I also saw coral reefs! I have a question...why do playgrounds have woodchips? Did you know that you have to cut down a lot of trees to make woodchips?

When you color it and you don't like your picture, don't throw it out because that's wasting trees. Instead, turn the paper over! What if you already used both sides? Then you put it in the recycling bin! That helps the earth a lot because the paper won't go to a big heap in the earth and add up to the space in the earth that's covered in trash and just sitting there polluting the earth. And that helps the animals especially birds because they need clean air to live!

*Charlotte picked this idea up from one of our favorite Fancy Nancy books, Every Day is Earth Day. Read more about it at Culture Bean. (Yes, that's a blatant plug!)

Happy Birthday, Charlotte!

I must have blinked. Yesterday, Charlotte was a tiny little thing, scrawny, tube-fed and recovering from heart surgery.  Today, she's almost up to my shoulder, weighs 55 lbs., giggles constantly, and has no problem eating her fill. Seven. Today she is seven.

May 9, 2006: Charlotte didn't eat this cupcake. We helped her blow the candle out and then went out to dinner, to celebrate that all of us had survived the first year in a life. Look at those ankles.  (photo credit: Karley Beery)

May 9, 2012: We had to stop her from diving into this cupcake to get the picture!

"Happy birthday to me!"

We started learning about seven a few months ago. Seven is the age of "it's not fair," a growing deep interest and concern with the world around her, and complex emotions.  I'm pretty sure it's going to be a roller coaster ride. One minute she's a little girl, snugly and silly. Another minute, she's nursing hurt feelings or fussing about doing her homework. Then, in a flash, she's off practicing the piano, building homes for her Calico Critters, writing letters to the Garden Fairies, or scooting around the house. Just as easily she's in her room reading or writing. It is endlessly delightful to watch her, though sometimes frustrating to follow her emotions.

Now to the annual birthday letter,

My darling Charlotte,

You started six ready to be the be the "sixiest," and you have been. In the past year you've grown so much (and I'm not just talking about the fact that you are SO tall), that I don't know where to begin. And, once again, you taught me so much.

Finishing kindergarten you were more than prepared for first grade--reading, making friends, open and curious. Camp was an hour away by bus; you came home sweaty, exhausted, and cheerful though at the end of the summer you did tell me that you'd had too many weeks of camp. Duly noted.

Mid-summer we packed up and moved, again. This time it was only six miles. It may as well have been across the country again--now we have a backyard, neighbors your age, and we're only a 5 minute drive from school. You never complained, just set about coloring the moving boxes and making new friends. You proudly live in the "yellow house at the top of the hill," and never (almost never) complain that we haven't hung your curtains.

Your amazing first grade teachers--Isabelle M., Aileen, and Hannah--quickly recognized your strengths and have worked hard to make sure that you stay challenged. Leigh and Sophie deserve special kudos for your reading groups with Aurelia and Sarah. Mohamed inspires the artist in you, teaching you about perspective and volume. Ms. Hammond, Ms. Rosellini, and Karine have kept you busy in, respectively, music, library, and theater. To hear you describe Fantasia last week made my heart leap with joy. And the games you play in theater class have made you a better listener, most of the time.

They've had a bit of a struggle keeping you focused, but we're working on that! The excitement you share with your recap of the end of each day continues to delight me. Sure, you tell me first the number of times you went to the playground, but then you describe in detail the art project, theater class, or science project you're working on.  You love random spelling tests and I'm continually astonished by the addition you can do in your head. I'm not sure you realize how much you're learning, but I am daily in awe of your knowledge of the world, language, and people.

You've finally put your head under water and are swimming on your own. I think this will be the year you learn to ride a two-wheeler and tie your shoes.

So, we're gearing up to turn your world upside down, again, moving back to Chicago. You're much more aware this time of what this move means and how it will change your daily life. Your seven-year old sensitivity shines as you tell me that you're happy and sad at the same time to go to Chicago. I'm sad too that we'll tear you from this wonderful school and the friends who have grown to love and support you.  And, I am glad that this transition will be eased by the familiarity of our destination. You now know that you have friends who are waiting for you excitedly at the other end of the journey.

If there has been a "regular" year in your life--six has been it. No hospital trips (we've never seen the inside of Boston Children's!), and aside from moving to Arlington, no unusual events. You wear your scar proudly, but remember less and less of your feeding tube.  You tell me often that you have a special heart. You do, my dear, and I'm not just talking about the repaired CHD. You are open, kind, empathetic, and loving. You meet each new person with an eagerness to make a new friend; each new challenge with the confidence of success. These traits will serve you well.

My stupendously six girl is now stylishly seven. I'm confident that you will remain strong, sassy, sparkly, and, hopefully, silly. And I know that you will teach me much as we weather another move together. I hope your sensitivity and kindness will continue to keep your heart open to the possibilities that change will bring us. Keep dancing like no one is watching, and keep loving with abandon. May you continue to write letters to fairies, dream of flying on paper wings, change your mind daily about what you'll be when you grow up, and tell me your secrets each night at bedtime.

Daddy and I love you so very much.

May you grow from strength to strength.

A Round Up of Recent Adventures: Newport, Rhode Island

Today, Charlotte is 6 years and 365 days old. Because it's a leap year she has to wait one more day for her birthday. She can barely contain herself! I can hardly believe that seven years have passed since she changed our world forever. More on that tomorrow...

We've had a lot of excellent adventures lately, starting in April when we hosted Marlène, a French student teacher who was doing an internship (stage) at Charlotte's school. Hosting Marlène forced us all to speak more French (though she wanted to be practicing her English!) and to eat our family meals in more leisurely manner.  We learned a lot about Charlotte's school from a teacher's perspective, too. In all it was a wonderful experience which we hope to repeat.

At the end of the internship, we took Marlène and two other interns (Solenne and Fatou) to Newport, Rhode Island for the weekend.

After strolling on the pier and having an excellent lunch, we toured The Breakers. Philippe, Marlène, Solenne, Fatou, and I enjoyed the self-guided audio tour. Charlotte busied herself sketching each room.  She was fascinated, but wanted to see it her way, not understand the history or fabrication of the building. Her drawings are evocative if not representative, especially the bubbly way she captured the crystal and gold chandeliers in the dining room.  I was pretty sure she didn't hear the few details I mentioned to her or that she read, until she commented last week about the Vanderbilts and the leather-covered walls in their library!

Charlotte in front of The Breakers, Newport RI

The next day was a golden summery day so we went for a wonderful breakfast at The Hungry Monkey in Newport and then walked part of the Cliff Walk, with mansions (historic and otherwise) on one side and the sea on the other.

Solenne, Fatou, and Marlène on the Cliffwalk, Newport RI

At the end of the walk, Philippe hoists Charlotte like a sack of potatoes. I try not to notice her head pointing at the concrete.

 Thanks to Marlène we also made it to The Top of The Hub, the restaurant and lounge at the top of the Prudential Tower in downtown Boston. I'm ashamed to say that after more than a year in Boston, I'd not ever heard of this wonder. We met Solenne and her host family for a farewell cocktail and dinner.

The three little girls were fascinated with the view...there was a game on that night! Once again, I got a kick out of seeing Charlotte reject (Kobe beef) hot dogs (on a brioche) in favor of New England clam chowder and spicy calamari.

Charlotte and I have a list of things we want to do in Boston before we move next month. Going to Salem and the Peabody Essex Museum was on the list. We knocked that off the second weekend of Spring break. You can read about that trip in my previous post, Charlotte and Poetry in Motion.

Charlotte (and little bear) at The Top of the Hub

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.

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!