Charlotte's Journey Home

Just a Regular Kid, Sort Of


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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.


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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!


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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.”

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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?