Can you imagine not being able to feed your kids?

Can you imagine not being able to buy groceries for a holiday dinner? Or for tonight's dinner, for that matter? How about not having train fare to visit your kid in the hospital? We have struggled for years to get Charlotte to eat, but we have never had to struggle to put food in front of her.

My dad used to call me a bleeding heart liberal. He may have been right, but I can't imagine anything worse than not being able to feed and clothe my family. Charlotte has shared hospital rooms with children whose parents have nothing. One mother told me that her church raised money for her groceries, she lived on her sister's couch, and she'd been looking for a job for a year. Fortunately, her child's health care was covered through Medicare and his many therapies through the state's early intervention program. Even though she was sitting with a 2-year old who had just undergone heart surgery, she didn't feel sorry for herself. She just wanted to find a way to take care of her kid.

So, when I went to Children's Service Board holiday celebration, I gladly brought a grocery store gift card to help out a family at Children's. It was the least I could do. Now, I'm hoping you'll help me do more....

Partners with Parents

Children's Memorial Hospital, Chicago IL is seeking support for the Partners with Parents Program. This program empowers parents who are going through financial difficulties due to their child’s illness to provide a holiday celebration for their families. Your donation of gift certificates to local stores will be distributed this holiday season to families chosen by hospital staff based on their financial need. Monetary donations to this program will also assist patient families who are financially burdened and do not have other means of paying for public transportation, taxi fares, clothing, rent and utilities needed for medical equipment once they leave the hospital. This year, the hospital is especially seeking gift cards to food places such as Jewel, Dominick’s, Walgreens or Target. There are many families this year that are unable to buy food for their families.

If you would like to help out, contact Lauren Pedi (773.880.8106) at the Children's Memorial Foundation. Or email me and I can give you information about where to send a donation.

Topping Off Celebration

Nineteen months ago, I attended the groundbreak ceremony for the new Ann & Robert H. Lurie Children's Hosptial of Chicago. With my mother by my side, I had the privilege to join politicians, philanthropists, doctors, nurses, and patients as the dream of a new hosptial began to become a reality.

Tonight, with Charlotte, I attended the. hosptial's "topping off" ceremony. A topping off ceremony occurs when the last beam of a building is hoisted, usually with an evergreen. The ceremony, like a ship's naming, celebrates a major landmark in the project and thanks the construction workers. The evergreen symbolizes growth and good luck.

Charlotte and I signed the beam, adding our signatures (and my mother's name) to the thousands of other names--construction workers, donors, politicians, medical professionals--who have made this day possible.

After some snacks (Charlotte ate a chocolate-dipped marshmallow, mini-bratworst, 2 gingerbread men, and a hot cocoa); speeches by politicians, including the indomitable first lady of Chicago Maggie Daley; entertainment by ice skaters and a children's choir, we thrilled to watch the beam go up the tower.

Charlotte and I had front row seats. I held her up as tears streamed down my face and Charlotte cheered with glee and joy.

In her remarks Ann Lurie (or was it Maggie Daley?), quoted Christopher Reeve's famous remark, "When you choose hope, anything is possible." Five years ago, after a devastating prenatal diagnosis, we chose hope. We chose Children's Memorial Hospital. And you all chose to come along for the ride, crying and cheering along with us. Along with Charlotte and her doctors, you are our heroes. Thank you.

And now for a blatant plug:

The hospital's bones are up and it's time to add the flesh and blood. Our capital campaign is still underway--in this economy, fundraising can be a bit slow. In this season of giving, if you can give anything to our critical mission, the bricks and mortars, please consider it. Visit Heroesforlife.org and follow the link "How to be a hero."

While you're there, check out the campaign song. Tonight we heard it sung by a famous Chicago gospel singer. Extraordinary!

Sometimes we forget she's not a regular kid

Just another goofy four-year old on a school field trip to the farm (October, 2009).

Sometimes I forget that Charlotte is not a regular kid. Yes, every morning and evening as I help her dress for school or get ready for bed, the scars remind me. In between those moments, it is easy to forget a lot of our struggles and take for granted that she is a healthy kid who happens to also be medically complex.

Philippe is reminded (haunted?) by her past struggles at mealtime. Those days when she gobbles up everything in sight do cause us glee and gratitude that probably is a bit exaggerated. The days when she behaves like a regular 4-year old and refuses to eat make us crazy because we are wired to force-feed. We work really hard on our mantra "just a regular kid," but it can be hard.

What most slaps me across the face, however, are the regular-kid moments that are just a little bit not-so-regular. Let me try to draw the picture for you:



Charlotte loves to play doctor and she loves to pretend that she is the mommy taking her child to the doctor. One day last week the scene went something like this:



"Mommy, I'm going to take my baby to the doctor."
"Okay, sweetie. What is the appointment for?"
"Well, she was just born* and now she needs to go for her surgery."
"What surgery?"
"Her heart surgery."
"Charlotte, sweetie, you know that not every baby has to have surgery when it is born, right?"
"Yes. My baby has to have her surgery because she is very little."
"What kind of surgery?"
"Heart surgery, just like me. Her heart was broken when she was born, so I'm taking her to the doctor for surgery to fix it, like me."


-----------------------------



Charlotte has an imaginary bear named Purple Bubba who figures regularly into her pretend play and creative scenarios. Usually he represents her aspirations and can easily do things that scare her or that she's not quite ready for (like swimming, but that's another story). Sometimes Purple Bubba makes my heart stop:





"Mommy, Purple Bubba is chewing all his big boy food!"
"Wow, that's great. But, I am not surprised because you always tell me that he is a good eater."
"Yes, but you know, when he was little he had a tummy tube. I had to feed him through his stomach."

She's a regular kid, alright, complete with giggle fits and temper tantrums, moments of wonder and profundity, and growth spurts that astound. But, she's never going to be quite regular, is she?

We Are Grateful For...

Another photo from our October staycation. We got too busy to blog daily as we had guests in from France. We took them to the John Hancock Tower for the best views of Chicago. More on that soon!

We are grateful for books that inspire excursions, imagination, and everlasting fascination. Thanks, Andrea! And, thanks David Roberts for drawing one of my favorite Chicago skyline images. Iggy Peck, Architect rules!

(We are also grateful for independent bookstores. The link goes to Women & Children First, a perennial favorite bookstore in Andersonville. If you need to order books for holiday gifts, please shop here!)

StayCation: France

Ah, staycation....First we had a visitor from California, then we hit the highlights of Chicago with Daddy [Chicago Botanic Garden, Museum of Science and Industry]. After that, Charlotte had to go to Kids' Kastle (our wonderful local home daycare) so I could work on a conference paper. Daycare is a treat for Charlotte because she loves the teachers, she gets to play all day in a small group, and she is usually the oldest one there these days. But, it wasn't really worth blogging since I wasn't there.

After daycare, we began the international part of our staycation with visitors from France. When we visited Paris in May, we spent time with my friend Fabrice and his 11-year old daughter. We proposed that she could visit any time. She reminded him. And reminded him. And reminded him. So, we planned a trip. Then her grandmother (who I've known for years and who Philippe met about 7 years ago) heard about it and said she wanted in on the trip, too. Charlotte came with me to meet Odile (left) and Eva at the airport.








We took them to some of Chicago's most special places, like...the Museum of Science and Industry. Yep, Charlotte went there on Monday and on Thursday and she enjoyed (almost) every minute.





Later in the visit, we took them also to the Observatory at the top of the John Hancock Tower. It may not be the tallest building in Chicago, but the view is extraordinary. The four big people listened to the excellent guided tour. Narrated by Chicago's own David Schwimmer, complete with a plug for the theatre company he founded here (Victory Garden), the tour gives excellent information about the buildings contextualized in a wonderful history of Chicago and how the neighborhoods surrounding the tower have evolved. A big plus: You can almost see the new Children's Hospital building from the 95th floor. Charlotte loved finally seeing the view that graces the middle of Iggy Peck, Architect (see Thanksgiving week post for a photo).

Then, Charlotte got bored and cranky and nearly made me lose my mind with her impatience. What saved the day? My SLR digital camera! Charlotte took dozens of pictures of, in her words, "the whole world." She declared that when she grows up she wants to be a photographer. Karley would have been proud!

Some of the pictures were pretty good, too. In fact, she took one of the best pictures of me that I've seen in a long time. Maybe I'll post it one day. Here's a skyline picture by Charlotte:








Here's a picture of Charlotte, Philippe and Eva "cleaning the windows" of the John Hancock Tower. Cheesy, I know. But cute!
After the Hancock Tower, at about 12:10 p.m. on a Saturday, we managed to get into The Cheesecake Factory with a 5 minute wait. When does that happen?! Needless to say, our French guests were thrilled by the decor and opulence, and a bit cowed by the portion sizes. Charlotte was thrilled to be with Odile and Eva. We learned the extent and limits of my menu French as I tried to translate and differentiate between sausage, pepperoni, and other pizza toppings! I can't leave this entry without commending the best waitress, Cheryl. I cannot remember right now why she was so extraordinary, but it was clear that she enjoys her job and we thoroughly enjoyed her.

Just another vacation day in Chicago!

Still on StayCation

Philippe took Monday off to have a stay-cation day with us. We headed out early to the Museum of Science and Industry to beat the crowds. I had "scored" a museum pass from the Chicago Public Library, but it turns out that the MSI is free all weekdays during October. The place was empty.

We started with You! The Experience, the newly reinstalled permanent version of the Body exhibit. According to the website, it celebrates the connection between the human body, mind, and spirit. It's totally interactive and loads of fun.

We started with the Giggle Garden, an installation about the importance of laughter. We learned that laughter is good for the immune system, the heart, and all kinds of things. Charlotte learned that the more she moved, the more the people on the t.v. screens giggled.

Next we learned about the importance of sleep. I liked this exhibit--we got to lie down and watch cartoons about sleep! The interactive display asked questions about our sleep habits and then played different videos about maintaining a steady bedtime, having a dark bedroom, and getting enough sleep. It didn't judge us on our bad habits' answered.

The exhibit stresses the importance of human connections. This installation allowed Charlotte to "build" her support system by answering questions about who she turns to for help in a variety of situations. I'm not sure she quite understood it, but she loved typing in names and touching the computer screen. Here's one iteration of her support system. She chose the names with no (or very little prompting). We had to ask her sometimes if she wanted to choose a friend, family member, teacher just to get the concept across.

On the way to lunch we checked out the trains and planes (sorry, no automobiles).

After lunch we had one last adventure in the Lego room. Philippe enjoyed the Lego architecture Falling Water construction while Charlotte built a tower. Maybe we'll get Philippe back there on January 23 when Adam Reed Tucker, Lego architect in residence, will be building on site.

Charlotte spent Tuesday and Wednesday at Kids' Kastle while I wrote. She had a blast, made another pumpkin, and rode her bike all the way there and back.

We're Still on Vacation, in Chicago!

Today was the perfect day for an outdoor adventure. We headed to the Chicago Botanic Gardens to "tree peep" and check out the haunted railroad garden.

Cloudy with a 30% chance of rain morphed into sunny and too warm for our fall jackets. The gardens were explosively gorgeous, shades of orange, red, yellow, and green. As you can see above, the gardeners have been beyond creative in using natural materials to makes things that haunt, crawl, creep, and wow.

Charlotte, of course, has no idea of how exciting it is to see this exhibit as landmarks of the United States. Philippe and I did not know that the model buildings change every now and then. But, mostly we were excited by the dragon made of leaves, the spiders, the pumpkins, and all the other ghoulie things.

I think Charlotte was excited.

Oh, and she got to make a gift for Miles, a cat mint plant. Miles likes to eat our plants. Our hope is that he'll eat this plant and not the houseplants. If it grows. (It did tip over on the way home.)

Behind my "big" and "little" are obelisks made of red mums. Stunning.

After lunch, we took a scenic car ride (read: let Charlotte nap in the car) and headed to our synagogue for a concert by Dan Nichols. The true highlight was that our friends Mhari and Ava were accompanying Mr. Nichols with their temple choirs. Charlotte could barely contain her excitement and had to be convinced not to interrupt the concert to say hello. She's never been so close to celebrity (the girls, not Mr. Nichols). *I'm not posting a picture because I never post other people's children without explicit permission, in case you're concerned after reading today's New York Times.

After a very early dinner, Charlotte was so excited to go for a walk around the neighborhood. Dad and I got rated "as fun as Karley" because we took her out after dark. Woo hoo! I'm finally as fun as Karley!

p.s. Thanks to Philippe for the great photography!

We're Staying on Vacation!

Fall Break at Charlotte's school began on Thursday afternoon. To quote Charlotte, "We're staying on vacation" this week because "vacation is coming to us."

California, here you come: We began our break with a visit from my friend Kath G. from Palo Alto. Kath, Charlotte, and I went to the Art Institute. It was Charlotte's first visit to an art museum. She enjoyed the Impressionists for about 5 minutes, lingered in front of Seurat's Sunday on the Grand Jatte for another 3 minutes. Her interest in Seurat is courtesy of the wonderful book Feed Matisse's Fish. She's seen the painting dozens of times in the book. Seeing it face-to-face and looking for details that we can't see in the reproduction held her attention for a few minutes.

The Thorne Miniature Rooms really captured her imagination. Sixty-eight tiny reproductions of period rooms from different eras and locales across the United States, like little dollhouse rooms. We made a game of finding items in each room and deciding what rooms were fit for princesses.

I had not seen Kath G. since Charlotte was about 8 months old. She and Charlotte clicked and had a great time. At lunch Charlotte asked if Kath was coming home with us because she wanted to play more with my friend! Visiting with an old friend (ancienne, pas vieille), was delightful, even more so because Charlotte was angelic most of the day.

Stay tuned for more of our "stay-cation". We're planning fun excursions and we'll have exotic visitors by week's end.

And guess what? No doctors' appointments all week. I think that's a first!

Remembering Jeffrey B. Gardner on 9/11

Since 2007, I've taken a break from Charlotte's story to remember my friend Jeffrey who perished in the World Trade Center on 9/11/2001.

This is the first year that President Bush will mourn the victims as a private citizen. As President Obama gets ready to lead a moment of national silence in 45 minutes, I wonder what the passing of the torch will mean in terms of our memories. 9/11 is becoming "history" as have so many excruciating (and exhilarating moments in our nation's history. Right now, Charlotte is obsessesed with a book called Moon over Star, a picture book about a little girl's dreams as she watched the moon landing on television. Though 9/11 cannot make a lovely bedtime tale, I believe it is equally important that our children who were too young to understand, or those born after 9/11, be taught not only the international significance of the date and how these horrible acts have changed our world forever, but also the human cost.

I think I like President Obama's idea of a day of service. In a time of mourning, nothing seems more imporant than tikkun olam, healing the world, and what better way to do it than to help others. I can't participate this year, but will look forward to next year.

My posts about Jeffrey have put me in contact with lost friends and elicited responses from strangers. One of those strangers is Jeannette, who will remember Jeffrey on her blog as part of the 2,996 Project. I'll link to her post when I see it.

In the meantime here's my essay again. Please take the time to read it and remember that while "America [was] under attack," as Andrew Card famously told President Bush 7 years ago, very real people were being injured and murdered. The ripple effect of their loss cannot ever be forgotten.

(Originally written on 9/11/2006)
Jeffrey B. Gardner died [7] 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 guestbook, 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 killed 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.

Finding Bubba (sort of)

We searched, we cried, we despaired. Charlotte moved forward, comforted us, and occasionally broke our hearts by asking about Bubba.

And then...then one sleepless night I saw a comment from my choirmate Jess asking simply, "Have you checked eBay?" to find a replacement. Philippe had checked eBay, but his search turned up nothing.

My frantic, guilt-ridden, midnight search turned up:

A lot of not one, but two Bubba-twins. The eBay auctioner read my story (I emailed to ask if this really was the same bear and would she compare her picture to ours) and did not charge us for shipping.

And, now we sing (with apologies to The Chiffons): "Our Bubba's back and he's better than ever, hey la, hey la, Bubba's back!"

Charlotte knows that he is Bubba's twin brother (she has only seen one of the bears). We've decided, at her prompting, to pretend he's the real Bubba and tell people that he was on a rejuvenating spa vacation. Wish I could have gone to, he looks great.

Just in the nick of time for the first day of school (yesterday).

Charlotte is happy as a lark. I still cringe occasionally when I see that he's not spit and sand colored. But, my heart skips a beat when I see her holding him upside down, rubbing his tag, sucking her thumb, and sleeping soundly. I wonder at our daughter's resilience and how she handled this loss far better than either of us.

Many thanks to Jess for her thoughtful comment. And to Bizziegram at eBay for her compassion.

"All is right in her little world tonight," I think as I kiss them both good night.

Searching for Bubba

Charlotte and Bubba recovering from heart surgery, March, 2007, Children's Memorial Hospital, Chicago

Looking for Bubba became our own version of the t.v. shows Without a Trace and CSI: Chicago. After Philippe’s early morning trip on August 17, I continued to call the Field Museum, Shedd Aquarium, and Adler Planetarium daily. I sent emails to the Lost & Found Department. I chose, however, not to leave a message with the answering service of the Museum Park Café Restaurant. A poor decision, it turns out.

As the week wore on, Charlotte “tried on” different best friends. From her collection of beloved stuffed animals, she napped with Nemo, Pitty Pat, Bubba’s Baby Brother, Mama Kitty, and some others. None of them quite fit the bill. She needed a certain size, a tag that is nice to rub while she sucks her thumb, and a unique ability to sniff. She finally adopted Bubba’s Baby Brother (a smaller, whiter version of the famed Bubba, also give to her by Bamma) though she continued to cuddle at least 4 other animals while sleeping, often piling them on top of each other.

About once a day she would ask me “Mama, why did I lose Bubba?” This has to have been the most heartbreaking question of all. Other questions included, “Where is Bubba?” “When will I get Bubba back?” Mostly, however, our little girl comforted us, telling us that she would be fine.

But, what did happen to Bubba? We can trace his whereabouts to Tuesday, August 19 and then the trail runs cold.

On August 20, I had a job interview on the south side of Chicago. On the way home, I passed the museum campus and decided to look once more. I stopped at the Museum Campus Café and spoke with Yvette, the manager. As I asked, “My daughter lost her lovey on Sunday morning. Has anyone given you a small brown…”, Yvette finished my sentence, “brown bear, about this big. Really dirty and smushed?”

“Yes!” I said, bursting into tears, “You have him?!”

“No,” Yvette responded sadly. “We did have him. Someone found him on the picnic table on Sunday around 3 p.m. We left him there all day, hoping his friends would come back. I could tell he was very well-loved and would be missed. So, I asked my employees to bring him in rather than throw him away. We kept him in the office on Monday [it rained all day that Monday]. On Tuesday, my workers tried to convince the groundskeeper to throw the bear out, but he remembered what I’d said. So, he put the bear back on the tables. We don’t know what happened to him after that.”

Poor Yvette. I burst into hysterical tears. I had come so close. I knew that he had been found and cared for, but then the trail stopped cold.

I tried the museum again. No luck.

Yvette called her groundskeeper to see if he had perhaps kept the bear another night or two. No luck.

I left a message for the Lakefront area Chicago Park District office. Heard back from them on August 25. No luck.

I tried not to feel horribly responsible, for losing Bubba to begin with, for not having left a message for the café earlier, and for not leaving our number with the café on Sunday. I tried not to rethink every decision and search strategy since The Loss. No luck.

I tried not to cry. No luck.

Philippe went back to the museum campus on Friday, August 21 and looked again. No luck.

We came so close. But then the trail went cold.

We ordered a new bear from the Internet. It came in and was all wrong so we kept looking.

I went to yoga class where our teacher suggested we breath in all that we wanted to add to our lives and breath out what we wanted to get rid of. I breathed out "guilt, guilt, guilt." It worked!

We Pause for a Moment (of silence, from our sponsor? You pick)

Caveat: This blog is usually about Charlotte. I try to keep my emotional interventions to a minimum, saving my rants about our various situations for my journal. Of course, I do rave here, as you know. So I hope you'll humor me this one time as I vent the words that have kept me awake since Philippe left an hour ago, in thunder and lightening, to go look for our beloved bear.

How we slept last night, the night we lost Bubba. Charlotte conked out at 7:30, peacefully hugging Bubba’s Baby Brother, Nemo, and Mama Kitty. Philippe and I tossed and turned, he devastated by the loss of a bear that has such symbolism for our family; and I was racked with guilt.

Here’s the thing*: Charlotte handed her most beloved possession to me, her mother. She entrusted me with her best friend. She gave me the one bear that I knew would need rescue in case of an emergency exit (from anywhere). I somehow managed to not secure him in the backpack. He fell out (or never made it in). This is squarely my fault.

Here's the other thing: When is enough enough? Her heart, her feeding tube, her reflux and constant vomiting, her helmet, 3 years of physical and speech therapy, her eyes, her ears, the school's recent concerns about potential development and socialization challenges. So many other daily struggles that we don't share on the blog, our grown up struggles. All these we have born with whatever dignity, strength, and grace we could. I realize, and am grateful, daily that we have fewer troubles than many. That Charlotte's relative health and her exuberant happiness are blessings and our daily reward. But, why did we have lose her Bubba? When is enough enough?

And now, I have images of a poor lost bear, tumbling along the rivulets caused by this morning’s thunderstorm, scared and alone. I see him being tossed into the lake by some callous person. I have waking nightmares about him getting run over by a car, having his eyes pulled out by a nesting bird, his stuffing flowing into the dirt.

Philippe left the house at 6:00 a.m. to go look for him again. In the violent thunderstorm.

Charlotte doesn’t blame me. Yet. I can only imagine how this plays out in adolescence. Philippe doesn’t blame me. But, I blame myself. And, Bubba, if we could find him, wouldn’t blame me. He’d look up with his crooked, smashed smile, streaked with washed out pink marker, give me a sniff, and then let me off the hook.

I wish it were so easy.

*With apologies and great admiration to Lisa Graff's The Thing About Georgie.

For the Love of Bubba

Bubba at his proudest, sitting at the foot of Charlotte's crib in NICU 204, helping her recover shortly after her first heart surgery.

We lost Bubba today. Philippe and I have feared this day for a long time, ever since Charlotte definitively chose Bubba as her favorite friend. First it was Mr. Mouse, then Duckie, then Bubba. Bubba is the beariest bear, the best friend, the one who is always there. And then, somewhere between our parking space and the entrance to the pirate exhibit at the Field Museum, Bubba fell out of our backpack.

Today, we told Charlotte that no bears could come into the Field Museum because Sue the T-Rex is afraid of bears. I told her there was a sign. Smarty-pants said, “Mommy, I didn’t see that sign when I was there with camp.” So, we let her take him in the car, with the intention of leaving him the car (that’s what we usually do). She was kind of whiny, so I let her put him in the backpack. What happened after that is a blur.

We retraced our steps, checked lost and found at three museums three times. We looked under cars, in trash cans, and in trees.

Here’s the thing, if you found a clearly well-loved, dirty, lost-most-of-his-stuffing bear, what would you do with it? I’d set it carefully in a visible spot near where I found it, or I’d take it to a nearby store/museum/restaurant for lost and found collection. Other people, it seems, must think “finder’s keepers.”

Charlotte was hysterical for about 30 minutes. Then off and on sad for another hour. Now she seems rather resigned to the loss. She’s hoping Daddy can find her a twin bear to name Bubba and she’s trying to nap with Bubba’s Baby Brother and her other dozens of friends.

Philippe and I are, on the other hand, beside ourselves. I’m ready to cry.

Why, you ask? It’s just a teddy bear, right? Sort of.

Bubba helped Charlotte not have a meltdown when our trip to NJ took nearly 12 hours.

Bubba held a gift card given to us by my mother when Charlotte was three weeks old. He proudly sat at the end of her hospital bed for the next month. Then he took up residence in her crib.

Once she adopted him as her favorite, he slept close to her head. Bubba survived reflux with the rest of us, only it was much harder to keep him clean when he was in the line of fire. Over time, after several trips through the washing machine, and an accidental fall into the bathtub, we gave up trying to clean him. Lovely golden Bubba became more sandy-colored, stained, even striped with the occasional magic marker. When Charlotte’s GI doc told us this past week that we could put him in a bag and wash him on the delicate cycle, Philippe and I looked at each other and smiled. We’ve done that. Maybe a dozen times. We were sure one more time would be the end of Bubba.

Once Bubba was the clear favorite of Charlotte's menagerie of friends, I made a special trip to Babies-R-Us to get a back-up Bubba. By that time, the design of their gift card bears had already changed. So, no back-up Bubba.

Charlotte’s teachers all knew to check her backpack at the end of the day to make sure he came home with her. The new Executive Director at our synagogue met us by asking to meet Bubba.

When I couldn’t convince Charlotte to leave Bubba at home for field trips at camp this summer, I made him a collar with an id tag. He came home every trip, safe and sound.

Bubba helping Charlotte nap at Ton Ton Ricky and Tante Andre's home in Belgium

Charlotte usually carried Bubba upside down, rubbing his tag while she sucked her thumb. He sniffed her boo-boos to help them feel better. He went to every doctor appointment to help her be brave. Bubba recovered Charlotte from open-heart surgery when she was 21 months old, from ear tube surgery last month, and from every scrape and bruise in between. Sometimes he’s the only thing that can cheer her up when she’s sad or tired.

What I’ve learned today is that Charlotte is quite brave without Bubba, too. She’s bravely trying to nap; announcing that if Daddy can find a twin, she’ll name him Bubba; and telling me that she loves all her stuffed friends and that Nemo is also her best friend.

Sooner or later Charlotte will realize that he’s really gone. Gone forever. Her dad and I are sad because he is a symbol of all she has survived, all she has conquered, how far she’s come, and how strong she is. Charlotte will be devastated by this first permanent loss of a best friend and treasured bear. We’ll all never be the same.


Requiem for Bubba*
Bubba the Bear Ba Ba
Bubba the Bear Ba Ba
Bubba the Bear was always there, was quite a bear.
We had a bear named Bubba
He was like no other
We loved him like a brother
We’ll miss
Bubba the Bear Ba Ba.

*To the tune of the Addam’s Family theme song. Don’t ask.

The "Bear Facts":

• Charlotte has more than a dozen bears. At last count I think the bear-ventory was 26. (We'll get back to you on that.)
• The name "Bubba" derives from Baby Charlotte's earlierst attempt to say "bear." To us it sounded like "buh buh." Her friend has a bear named Ba-Ba. Same derivation.
• Bubba traveled to Virginia; New Jersey; New York; Boston;, Newton MA;, Paris, France; all over Belgium. But Bubba got lost at home in Chicago.
• Bubba survived vicsious ;) attacks by Baxter the dog and other predators.
• Bubba was vomited on more than even Mommy. He didn't care.
• Bubba has a purple imaginary brother. He's not lost.
• Mommy copes with the loss of Bubba by blogging.
• Daddy copes with the loss of Bubba by going to Babies-R-Us. No luck. Now he's online trying to track down the company that makes BRU's private label animals.
• Charlotte is trying to nap, as she promised us. But she is not asleep. Could be the rain. But, probably the bear.
• I'm so sad that I've just left the laundry on the line in the pouring rain.

It's Easy as ABC

Charlotte is teaching herself to read. I have known for sometime that she recognizes certain words (stop, sport, park), particularly words we see on road signs that we pass with regularity. But, I really thought that it was all about pattern recognition and not yet reading.

On Monday, however, she set me straight. Sitting in the lobby of our gym, she asked me why a sign said, "Men" instead of "Women." I explained the two different lockerrooms and then realized, "Charlotte is reading!" Since then she has asked me, "Mommy, why does that say xxxx?" several dozen times.

So, I went to the library and picked up some easy reader books. I got classics like One Fish, Two Fish and The Cat in the Hat (I can't believe we don't own those) and some new Elephant and Piggie favorites by Mo Willems, Watch Me Throw the Ball, Elephants Cannot Dance, and I Love My New Toy. We spent much of Charlotte's post-surgical rest time reading a stack of books. Actually, Charlotte did most of the reading. She's beginning to figure out how to sound out words. One of her favorite games is to take a word and figure out how it sounds if we change the first letter (pig, big, dig, etc.)

As if this new development stage--teaching herself to read--isn't blowing my mind enough, on the way into camp yesterday, Charlotte turned to me and said, "Mommy, two plus two if four, right?"!

Medical Update: Myringotomy and Tympanostomy Tubes

In her quest to become a regular kid, Charlotte has been plagued since the beginning of pre-school with regular kid health concerns. She had so many ear infections during the school year that I truly lost count.

After consulting with her pediatrician, Dr. Newport, and her otolaryngologist, Dr. Billings, we decided to move forward with a myringotomy and the placement of tympanostomy tubes. Lots of fancy words to say that her ENT decided she needed tubes in her ears. Essentially, Dr. Billings planned to ventilate Charlotte's inner ear by making a tiny incision in the ear drum and then make the ventilation "permanent" by placing the tubes.


The original plan had been to do this in August so as not to miss camp. But, Charlotte asked me to move the date up and "get her ears fixed" because she's has a great deal of intermittent discomfort.


Bright and early this morning, we woke Charlotte up and took her to Children's Memorial Hospital. She was delighted to head out in her pajamas, but quite distressed to be skipping breakfast. (Yes, you read that right!)

Our appointment was for 8:45 a.m. Per instructions, we arrived at 7:15 a.m. and waited to be called to the surgical suite. Once we were there, Nurse George heard Charlotte asking for a room with a window--he arranged that. Room number 8, her favorite number.

Nurse George doing Charlotte's pre-op exam. Charlotte's post-op RN was Nurse Tim. Two guys in one day. Wonders never cease!

After all the pre-surgical stuff (temperature, height, weight), the anesthesiologist walked us through his procedures and cautions. Given that this procedure requires about 10 minutes of laughing gas (more or less), we didn't have to hear the dire warnings about possible serious negative outcomes of anesthesia. Nevertheless, having your kid put under general anesthesia--gas or IV, for a heart procedure or tubes or tonsillectomy--is quite nerve-racking.

Dr. Billings answered our questions. Here's Charlotte's question: "Will the tubes feel poky or sharp or like water in my ears?" Dr. Billings answer: "Nope!"


Dr. Billings listened intently to Charlotte's question. The picture was overexposed, so here's a shot of her walking us through post-op instructions.

Charlotte asked me to go with her to the operating room, so I suited up. As she puffed into the orange-scented mask (her choice of scent; I thought it smelled like orange cleaning fluid), the nurse suggested she try to make the balloon attached to the mask pop. Groggy and getting irritated by the medication (normal reaction), Charlotte whipped off her mask and said, "I don't like when balloons pop!"

I sat with her until she was too goofy to know I left, her eyes rolling back in her head for the final sleep. My heart was pounding.

I met Philippe and we went to the waiting room. I need to pause and note that Carol, the waiting room attendant, has been at CMH for at least 4 years. She remembered us and asked how Charlotte was doing. What seriously amazing customer service.

Literally 10 minutes later, Dr. Billings came in to tell us that it was all done, Charlotte was in recovery, and that it had gone well. So well, in fact, that she cut the post-surgery ear drops by one day. I think that most of the lingering fluid (what had sent us to her to begin with) in Charlotte's ear finally cleared up last week, to tell you the truth.

Charlotte woke up gradually, but happily. She was a bit grumpy because she was hungry, but ready to go.

We were on our way home by 9:00.

We were supposed to have her rest this morning. So, we watched about 30 minutes of The Sound of Music and read a stack of books. I've got a great video of more "resting" that I'll try to post tomorrow. Charlotte ate a huge lunch and took a 3 hour nap.

Back to camp tomorrow, just a regular kid!

Travels with Charlotte

In May we took Charlotte to visit her Nenenne, aunts, and uncles in Belgium. We thought the weather would be nice, so we promised her a trip to Ostende, the beach her dad enjoyed as a child. As you can see, Philippe and I always keep our promises!

On the way home we spent a few days in Paris. I have lived in Paris and have visited the city about a dozen times. Both Philippe and I have seen the Paris sights, even visiting some of them together. But, neither of us had ever thought about Paris and children. We were not, however, stumped. We figured we'd scour our own memories and the Internet for ideas. After all, we only had 2 days to fill and since Charlotte still naps, we needed short adventures.

The first thing that came to mind was Niki de St. Phalle's Stravinsky's Fountain just next to the Centre Pompidou. Charlotte still talks about the Chicago exhibit of St. Phalle's sculptures, so it seemed an obvious choice. Charlotte's first Metro ride to Les Halles was a big hit, seconded only be her discovery of the first piece of public art she enjoyed in Paris:

And the St. Phalle--Tinguely fountain was a hit! Charlotte was enchanted. The fountains were turned off because the display was being cleaned, but that did not dim her excitement. We circled the fountain, stopping to talk about each sculpture (and take a bite of her much-needed crepe snack).

In addition our own brainstorming, our Paris preparation included a Google search on the key words "Paris, children" and some other words. This search returned an excellent beginners guide to Paris, "10 Great Things to Do with Kids in Paris." If you do the same search, you'll come up with a full page of travel blogs that have similar titles. I'm guessing they also have similar tips. The bottom line? Paris is studded with playgrounds. And kids love playgrounds.

So, why go there? Seriously, Chicago has tons of playgrounds, too. So what's the big deal? But, we had the tickets and the trip was planned. And Charlotte LOVES playground. Paris playgrounds proved perfect for the whole family. Why?

Well, Philippe would want me to first mention that the playgrounds we visited had coffee stands adjacent to them. A good espresso was available for about 1 Euro.

The playlot in the Jardins due Luxembourg is, as promised, huge. And it is the only place I know of where the entry fee for the children is more than for the adults! We walked in from the north end of the gardens and we all thoroughly enjoyed walking past the Palais du Luxembourg and through the stately gardens. The playlot has several climbing structures and a sandbox. Charlotte quickly found the jungle gym on which she was most comfortable and she had a blast. Philippe found espressos and a park bench for us. And, to top it off, we discovered that the entry fee guaranteed a pristine bathroom.

We did not try the carousel or get to see a puppet show, so there is more to explore for a return visit.

Our next stop was a playground that I remember walking past many times, in the Champs de Mars at the foot of the Tour Eiffel. Yes, Chicago has playgrounds, but where else can the backdrop to the jungle gym look like this?

Once again, we found the espresso and a bench. Charlotte truly had a blast.

And, Philippe and I did discover something of Paris we had never seen, the Wall of Peace in the Champs de Mars, a truly remarkable structure with an even more remarkable raison d'etre and dream.

Finally, every great city has a great children's museum and Paris is no exception. The Cite des Enfants features interactive exhibits designed to be enjoyed in about 90 minutes. Charlotte skipped from exhibit to exhibit, thoroughly enjoying fresh experiences like sound and touch exhibits, and kinetic play structures, as well as more familiar things like a water play room. The camera batteries died so you'll have to imagine it!

We can't report on any kid-friendly restaurants as we mostly ate in the apartment we rented and spent our evenings with friends who live in Paris.

What we can say is that Paris in unequivocally kid-friendly. When we left our bag of crayons in the one cafe we visited, the waiter happily held them until my return.

And what did Charlotte think of Paris? Did she realize where we were? Well...As we entered the Champs de Mars from the Ecole Militaire, I pointed at the Eiffel Tower (at the far end of the park) and asked Charlotte if she knew what the structure was. She said, "Mommy, that's Paris!" Indeed. We'd been in Paris for two days and she figured it out when she saw the Eiffel Tower!

Happy Birthday to Charlotte!

For Charlotte's first three birthdays I wrote a blog entry, a letter to Charlotte or a poem, describing her year, what she had achieved, and a list of things we wished for the coming year. Charlotte wanted to do it herself this year. So, here it is, a bit late, but none-the-less, Charlotte's third year in Charlotte's own words:

Countdown to Four!

"Look at me, Mommy. I'm in the toy box." Hmmm...maybe I should stop call her my dollbaby?

Charlotte is so excited about turning four this weekend that she can hardly sit still. Every day she asks, "What day is it?" And, as I do every morning, I tell her the day of the week, the month, and the date. We talk about what day yesterday was (that Monday follows Sunday and the 4th follows the 3rd, etc.) And then she asks, "Is it my birthday?" "No," I say, "What day is your birthday?" "May 9th," she screams gleefully.


And so began the "countdown to four." On Saturday we celebrated Charlotte's last Saturday of three by attending our buddy Max's first communion and celebrating with his family. Then we visited with a baby friend, Ainsley, who we hadn't seen in way too long (and her parents and sisters, of course. The baby, however, sticks with Charlotte who has renamed her baby doll "Ainsley.")

The last Sunday of three was spent at a new playground with more friends.


And the last Monday of three was spent at school.

But, dear reader, you're hoping for some kind of real update, aren't you?


Here it is: As Charlotte winds up her third year on earth she has started babbling. Yeah, I know, she did that years ago and has been speaking in full sentences for as long as we can remember. But now, she's babbling in French.


At first (last Friday), we heard just the vowel sounds, but the words were nonsense. Saturday night, at Ainsley's house, she was saying things like, "E fou fou e jardin." Ah. A word I recognized. "You want to go to the garden?" "Oui!" Then, "foo foo foo au cours du photo foo foo ebe." Ah ha! "The baby is in the middle of the photograph?" "Oui, oui!"

Today, on the last Monday of three, she babbled in French for an hour before school. At bedtime, she told me all about the books I was reading in English: Pinkalicious turned "une jolie rose." In Stone Soup there was "un petit chat" and "une petite fille en jaune." Then she asked me for "d'eau" and when I handed her the water said, quite clearly, "une verre d'eau." She handed it back to me and said she was ready to "fait dodo," grabbed her "doudou" Bubby, rolled over and ended her last Monday of three.

For IL Residents--Please Support Charlotte's Hospital!

We need your help. Please take five minutes to contact the Governor and your state legislators regarding the Children's Memorial Hospital State Capital request by April 30th.

Governor Quinn and the Illinois General Assembly are in the process of developing a capital bill. As you may know, Children's Memorial has asked the State to contribute $14.4 million to funding the construction of a neonatal intensive care unit in its new hospital, the Ann & Robert H. Lurie Children's Hospital of Chicago. We respectfully request you to contact your State Representative, your State Senator and the Governor to urge them to include Children's Memorial's $14.4 million request in the final capital bill before Thursday, April 30.

Please note that we request you click on each link in order to reach both of your representatives and the Governor.

To email your Representative and Senator, please click on the following link - http://capwiz.com/childrensmemorial/issues/alert/?alertid=13227351&type=TA.

To email Governor Quinn click on the following link - http://capwiz.com/childrensmemorial/issues/alert/?alertid=13227491&type=SW.

This will only take 5 minutes of your time. The wondeful folks at the Children's Memorial Foundation have prepared draft letters and ask you to personalize your message if possible.

CMH Cath Lab, Or the Importance of Philanthropy

In early April, I had the distinct honor of attending the dedication of the new cardiac catheterizion lab at Children's Memorial Hospital. Funds for the new lab were raised by the Children's Service Board just before I joined the board. If I'm not mistaken, it took about $3 million. While I was not on the board when this gift was made, I was eager to see the new lab as Charlotte has had two cardiac catheterizations.

The new lab is inside the operating theater suite, allowing the cardiac interventionists to work even more closely with the surgeons. Because the lab is within the sterile suite, children can move from the lab directly to surgery if necessary and, if a condition proves truly emergent, surgery can occur in the lab.

Catheterizations are guided by sonogram and the camera now installed has 360 degree mobility, allowing for much more detailed views of the heart and better diagnosis as well as more precision in determining the success of a procedure.

We got to play with the IVs and other tools used for procedures such as closing VSDs, various stents, etc. (We only played with demonstration items--nothing that would be used on a kid!) Closing a VSD used to require open heart surgery; now the doctors can insert the patch via an IV, reducing the invasion into a child's heart.

Dr. Jeffery Gossett, pictured here, delivered a wonderful presentation, then gave us a tour, and guided us through the different tools (or "toys" as he called them), showing us videos of each utensil at work. It was astounding. When we talk about the miracle of modern medicine, I think we really only know part of the story. What Dr. Gossett and his colleagues do on a daily basis takes a steady hand, intense focus, and dedication. It was a privilege to see even a little bit of his world.

Since we were all suited up in sterile gear, the nurse who coordinates the operating theaters, gave us the grand tour. I can't tell you how moving it was to enter the operating room in which my darling girl's heart has been repaired twice.

In case you're wondering, the new equipment will be moved to the new hospital.

To see more and better images of our excellent catheter adventure, click here.

To learn more about the Children's Service Board, please visit Childrensserviceboard.org.

SHAMELESS PLUG: To learn more about the new hospital and become a Hero for Life, please visit Heroesforlife.org.

Make Way for Charlotte

Charlotte and me with Aunt Bobbie. Charlotte said, "Now Aunt Bobbie isn't a picture."

It's Spring break for Charlotte. We packed up and headed to Boston on Friday. Charlotte declared her excitement and anticipation, "Know why I'm excited to go to Boston? Two reasons. One, because Aunt Bobbie won't be a picture any more. And two because I get to see the duckling."

First, Aunt Bobbie: Friday night we had Shabbat dinner with Aunt Bobbie, her son (and my cousin) Mark, and our cousin Eric. Charlotte was clearly thrilled to meet her cousins and aunt. I was just delighted to see my family. It had been way to long. We thought Charlotte might be shy with Mark and Eric as she'd only seen one or two pictures and not heard as many stories. She'd spoken to Aunt Bobbie on the phone a few times, so I wasn't as worried about that.

And the verdict? No shyness at all:

Mark teaches at Boston University in the theatre department and is a founder and the artistic director of TheaterBridge at Brown University. So, we tested his cold-reading skills with Skippyjon Jones in the Doghouse. I'll be honest, the Skippyjon Jones are tough reads on the first run through, and "in the Doghouse" doesn't flow as easily as the original. While they are cute, fun, and engaging, this is no Iggy Peck, Architect and it is not for the shy reader. And, after no nap and much excited, his audience was not her usual sit-still for reading listener. I'm proud (and none-too-surprised) to announce that Mark hit all the high points, even making up a melody when the text suggested a song!

On Saturday we met Aunt Bobbie at the Public Garden in Boston to ride the swan boats and visit the ducklings. What ducklings, you ask? Jack, Kack, Lack, Mack, Nack, Oack and Quack from Robert McCloskey's Make Way for Ducklings. Now, the aficionados amongst you are counting and shaking your heads. "Eight ducklings, Ilene, eight. You've forgotten Pack," you might be sighing. No, I haven't forgotten him. He was stolen. While he's been recovered, he has not yet returned to the gardens.

Charlotte acted as a willing stand-in, quacking all the way.

After a wonderful morning and lunch with Aunt Bobbie, Charlotte decided not to nap again. We headed to Newton to spend the evening with fellow Brunonians Lisa and Dan Davis and their children Zoey and Marc. Charlotte took to the two big kids immediately and the grown-ups were able to have a lovely visit. So lovely, in fact, that we lost track of time and Charlotte went to bed at 10 p.m. for the second night in a row!

My Mommy Made It

And what I mean is, my mommy made it, this adorable skirt, nearly 40 years ago. I don't think hand-me-downs get better than this! Thanks, Mom!

Chocomolic

Several weeks ago Philippe and I were invited to friends' for dinner. I volunteered Philippe to make his famous chocolate mousse for dessert. Charlotte was delighted to help. I think the pictures speak for themselves.



While cleaning up, Charlotte had a chat with Bamma. Bamma asked Charlotte if she was, like Bamma, a "chocoholic." Charlotte said, "Yes, I'm a chocomolic."

I can't make this stuff up. Really.

A Role Model?

"You're my friend, Taylor." Clearly! And, no, Taylor is not a shrimp; Charlotte is a giant.

Last night Charlotte's good buddy Taylor came over for a playdate and dinner (with her parents, of course). She quickly declared my chicken chili delicious (it was) and ate about 3 bites.

Then, Taylor's dad was trying to get Taylor to eat a bit more. [Aside: This always makes us feel good because it means we're not the only ones who have to push our kid to eat.] So, I said, "Hey Charlotte, show Taylor how you can take a big bite of soup." She said, "Sure. It's yummy." And, damned if she didn't shovel another spoonful, chock full of chicken and veggies, into her mouth.

In the end, Andy definitely got Taylor to eat a lot more than Charlotte, but I was stunned.

Charlotte's Homage to Heath Ledger

Since 1988, I have religiously watched the Academy Award ceremonies. From 1990 until 2001, I hosted a big party. Not Vanity Fair big, but big enough that friends I hadn't seen in a year knew to just stop by. Until 2006, I had seen a lot of the movies. You all know why we haven't seen so many movies in the past few years. I used to be able to predict many of the awards, based on my opinion and my actual knowledge of the films. Now I guess and have a lot of fun doing it.

Heath Ledger's win was no guess and no surprise. And Dark Knight is one of a handful of nominated films I saw this year. I also saw the set being built in Philippe's office building. So...

In honor of Heath Ledger's posthumous win this evening, I wanted to share this picture of Charlotte, our little joker (not evil in the slightest, by the way). She is honoring a man she's never heard of who was brilliant in a movie she never saw. But, it gives me an excuse to post this classic photo!