Charlotte's Journey Home

Just a Regular Kid, Sort Of


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Happy Birthday Charlotte! Or, who said you could turn eight?

My beautiful birthday girl lies asleep upstairs, probably dreaming of fairies. I think she had a wonderful birthday, starting with a pre-dawn (well, not really) call from her uncle and ending with a playdate and dinner with a friend, complete with her favorite meal (cod with chipotle mayonnaise adapted from an Emeril recipe) and her favorite homemade cake. When I put her to bed, she told me again how perfect a day it had been. She didn’t mean, however, the gifts or the cake or the phone calls. She elaborated that she was grateful for the beautiful spring weather, the blooming flowers, the greenery, and the rain that held off until dinnertime.

As her former babysitter Eve wrote on Facebook today, I struggle to believe that Charlotte is eight. Where have the past 8 years gone? In the same way that I find it unfathomable that I have two nieces graduating from college and one from high school, I find it difficult to imagine how it’s possible that we blinked again.

And, with that in mind, I’m going to attempt to write Charlotte’s annual birthday letter. Having reread the previous seven letters, I’m not sure there’s much I can add. Charlotte is still sweet, sassy, sparkly, and strong. She is still sensitive and kind. And, she’s just hit the “it’s not fairs” of age seven HARD.  But, enough about that….

Dear Charlotte,

We woke you up with a birthday song this morning and marveled at how tall and grown up you are. You even managed to brush all the knots out of your hair and stood patiently for special birthday braids. You risked being late to school to have an extended snuggle on my lap. Predictably. you wanted to listen to Radio Disney on the way to school, but you chatted all the way there about various things, mostly fairies and the concept of turning eight but being in your ninth year (you can thank my dad for that mind-bender).

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As I think back on your eighth year, I can’t help but be astounded, again, by what you have to teach us about resilience. Just before you turned seven, Daddy moved back to Chicago and you knew that your birthday party was the last you’d spend with the wonderful friends you’d made at the International School of Boston. You took it all in stride, though like me and Daddy you were sad to leave our yellow house on the hill. Still, you made new friends right up until the end, staying overnight with Beth Ann and her family while Daddy and I were away, and charming Marlène, the French student teacher who stayed with us for two weeks. You enjoyed your last Red Sox and Pawtucket Sox games, had one last brunch with Aunt Bobbie, and cousins Nancy and Eric, and then helped us get the kitties in the van for our ride west.

As we rounded the Sky Way to Chicago, you realized and confessed that while you were excited to be back in Chicago, you remembered the idea of Chicago more than the actual city. Yesterday, you confirmed that, noting that you really don’t remember the backyard of our house on Hoyne Avenue, though you remember that your room was green.

We arrived in Chicago and moved into corporate housing, our aerie on the 48th floor, smack downtown at Grand and State. What an arrival! We were able to walk on Michigan Avenue, visit museums, see movies at the Gene Siskel Film Center, and go to restaurants simply by walking out of the front door. You adapted to highrise living as quickly as you’d adapted to Arlington. Returning to Fred’s Camp allowed you to make a soft landing in Chicago as you reunited with a couple of Lycée friends and delved into the nearly-familiar. Hosting swimming Sundays was a fun way to see old friends, too.

Returning to the Lycée reunited you with old friends which made missing Audrey, your best gal pal in Boston, easier. Within months you’d made two great new girlfriends and seem to have settled in socially. You also reunited with your magical piano teacher, Mme. Julie, and your progress and commitment have been astonishing.

As if we hadn’t moved enough, we brought you to a new home in October. As we unlocked the door on the day we took ownership, you were greeted by a gaggle of girls who live on our block. What a wonderful treat to be in a neighborhood where you have friends to come home to, who knock on their kitchen window to say hello or goodbye, and who can’t wait for you to get out of the car so you can come play with them.

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Charlotte and Philippe on a playground near Leuven.

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Stopping to look at lizards on a hike in Tenerife.

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You traveled well–driving with us back to NJ, NY and MA for December break and enjoying a long visit with Audrey, New Year’s Eve with Henry and Emile, and lunch with Auntie B. You have been inspired by museums, fascinated by Lemony Snicket and Bob et Bobette, and intrigued by electricity. Visits to New Orleans, Belgium, and Tenerife rounded out your holidays.

Rather than trace the rest the rest of the year minute by minute, I want to highlight three moments that, I think, demonstrate the thoughtful, sweet girl you’ve always been and foreshadow the incredible, strong woman you’re likely to grow into:

First, your cardiac catheterization: After living a fairly regular (medically-speaking) existence since you were 20 months old, we were all stunned to learn that you needed angioplasty. We soldiered through your stay at the new Lurie Children’s Hospital and, true to form,  you came through with flying colors and a big smile on your face. IMGP4448

As always, I am inspired by your bravery. Being a heart patient is part of who you are and you are proud of who you are. You may not want people to point at your scar and ask questions, but you’re happy to talk about what Lurie Children’s Hospital means to you and about how special your heart is. You take your health seriously, ask a lot of questions, and let me and Daddy deal with whatever is too serious or scary.

Second, you experienced your first serious loss this year with the death of our beloved Bob the Betta.  You mourned him thoughtfully and passionately. Death is not an easy lesson. I think it is even part of the reason we have pets. And you handled it as well as any seven-year old could have been expected to do. The fact that you asked to see the school counselor because you were so sad demonstrated such maturity to me, and made me terribly sad for your loss.  And, you delved into research about how we could better care for a new fish. When we finally got a new fish, you listened carefully to what we needed to do and reminded me that we had to condition his water. Tommy is a much healthier fish than Bob ever was. He responds to our voices an is very fluttery. I hope he’ll be with us a long time. You took your loss and sadness and made your own teachable moment.

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Tommy, our super delta Betta

Third, the truth about the garden fairies: (Clementine and Sarah, stop reading here). You asked me a few nights ago whether I had written the fairy letters. You’ve been asking me for several weeks and I hesitated telling you. I didn’t want you to be mad at me and I didn’t want to spoil your belief in something magical and kind. You said, “Mommy, don’t tell me you wrote the fairy letters.” I responded, “I won’t tell you.” Eyebrow arched, you asked. And I couldn’t lie to you. So I made you promise not to be mad at me and I confessed that yes, for a year I’ve been writing letters and signing them from fairies. At first you didn’t believe me, but then it all fell into place–I could see the pieces organizing as in the penultimate scene from The Usual Suspects–how the fairies got a doll for your birthday, knew you’d moved, knew you’d been in the hospital, knew Bob had died. How come there had been no fairies in the corporate apartment (we didn’t have a printer). And you weren’t mad. You cracked up, smiling broadly when I told you that I had all of your original letters and that we could compile a notebook with the letters and the responses. And then you proceeded to dream up your own imaginary fairies to populate your room and your garden.  I was worried about exploding your myth. You took the truth and wove a new dream.

You didn’t quite achieve your goal of riding a two-wheeler before your birthday, but you are tying your shoes. We’ll get that bike rolling soon. Meantime, you’re developing a tennis game and your piano-playing makes my heart swell. Your vocabulary puts many adults to shame and I’ll take your French pronunciation corrections any time.

Charlotte, I could go on and on. Your strength, your jokes, your wisdom, and your love continue to impress me and make me proud. Seven has been challenging–as you developed a sense of justice, you felt the world (or at least your parents) was often unfair to you simply because you were seven. Well, you’re still not in charge, not yet. But the more you grow, the more you’ll move away from us and I’m not quite ready for that. So, please stay little for a while longer.

I see great things for you in your ninth year, and predict that while you are eight you will be eager, enthusiastic, energetic, eloquent, and at times euphoric. And no doubt you’ll stay sassy and sweet. Daddy and I look forward to watching you grow and learn and explore.

Daddy and I love you most.

May you grow from strength to strength.

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Move for the Kids 5K Benefiting Lurie Children’s Hospital

Charlotte ate an oyster and she liked it.

Charlotte ate an oyster and she liked it.

Just a reminder–it’s not too late to participate—in person or virtually—in this year’s Move for the Kids 5K benefitting Lurie Children’s Hospital (or Charlotte’s Hospital, as we call it).  Even the smallest donation will help the Children’s Service Board raise its stated goal of $40,000 for this year’s walk.  Last year the CSB raised nearly $120,000 and was the leading team and the leading affiliated organization on the walk. All proceeds donated through the following link will go directly to the hospital and be credited to the Children’s Service Board, benefiting our commitment to pediatric surgery.

So far our team has raised $636. With matching funds we’ll be at $966. Our team goal is $1000. Won’t you help us meet or beat it?

Everyone in Chicago has a Children’s story. And many of you have pediatric surgery stories at other wonderful pediatric hospital. I hope you’ll consider helping write the next chapter of Lurie Children’s with a donation. No donation is too small—I mean that.

Full disclosure–we’ll be participating virtually as we’ll be in NJ for my 30th high school reunion (I know…none of my dear readers every thought I could be that old!).  Team Charlotte’s goal is $1,000. Like the Children’s Service Board, we far exceeded our goal last year and topped out at $7,500. Now. Can we please see if we can meet the goal without the extra pus from Bamma.

Click here to join Team Charlotte and the Children’s Service Board as we Move for the Kids!


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Move for the Kids 5K Benefiting Lurie Children’s Hospital

Charlotte ate an oyster and she liked it.

Charlotte ate an oyster and she liked it.

I’ll be updating the blog this weekend; nothing major going on, just regular kids stuff like eye doctor visits and strep tests.

In the meantime, I want to invite you to participate—in person or virtually—in this year’s Move for the Kids 5K benefitting Lurie Children’s Hospital (or Charlotte’s Hospital, as we call it).  Even the smallest donation will help the Children’s Service Board raise its stated goal of $40,000 for this year’s walk.  Last year the CSB raised nearly $120,000 and was the leading team and the leading affiliated organization on the walk. All proceeds donated through the following link will go directly to the hospital and be credited to the Children’s Service Board, benefiting our commitment to pediatric surgery.

Everyone in Chicago has a Children’s story. And many of you have pediatric surgery stories at other wonderful pediatric hospital. I hope you’ll consider helping write the next chapter of Lurie Children’s with a donation. No donation is too small—I mean that.

Full disclosure–we’ll be participating virtually as we’ll be in NJ for my 30th high school reunion (I know…none of my dear readers every thought I could be that old!).  Team Charlotte’s goal is $1,000. Like the Children’s Service Board, we far exceeded our goal last year and topped out at $7,500. Now. Can we please see if we can meet the goal without the extra pus from Bamma.

Click here to join Team Charlotte and the Children’s Service Board as we Move for the Kids!


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Requiem for a Fish

This is Bob.

This is Bob.

In Memory of Bob the Betta

?? to March 20, 2013

 I was going to call this entry “Death Before Breakfast,” but I didn’t want to startle anyone.

We found our beloved Betta fish Bob lying on his side on the bottom of his bowl yesterday morning. I choked back tears as I quickly carried the bowl into the kitchen so that Charlotte wouldn’t see the body. Charlotte’s first reaction was, “Can we go to the store today and get a new fish?” Then, realizing that while a new fish would be nice (and she still wants one) it wouldn’t be Bob, she burst into hysterical tears and was nearly inconsolable. She told me that at recess she told her friends she wasn’t in the mood to play. Instead, she sat in the corner talking to her imaginary friend Purple Bubba and crying a little bit.

Today, though she seemed a lot better at breakfast, she went to the school counselor to discuss her sadness. We got the following report from the counselor: “Charlotte’s English teacher referred Charlotte to my office today for support around the loss of your family’s pet fish. We drew some pictures, wrote a letter to Bob, and brainstormed some ideas of what to do about her sad feelings and if she missed him.”

As Philippe wrote to me later in the day, this is both sad and awesome. Sad that our little girl is so distraught, awesome that she sought support, and beautiful that her school is such a caring environment.

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I loved Bob because he was cute and he was my first fish.

It had been clear to me and Philippe that Bob had not been well for a month or so. He’d gotten lethargic, wasn’t eating, and occasionally had something dangling from his belly. On Saturday he started nosing around in his gravel. That behavior was odd and concerning enough that I had Philippe research what I meant.  He found several articles stating that I meant the fish was trying to hide. We must not have read far enough because I now believe that Bob was looking for a place to hide so that he could die in peace.

Bob was our compromise pet. We had discussed getting a tadpole for about a year, with the idea of releasing a bullfrog at the pond near our house in Arlington. Once it was clear that we were moving, I had reservations. First, I didn’t really want to move an aquarium cross-country (two cats was hard enough). Second, I was unable to quickly find out if bullfrogs are native or invasive in Illinois and we didn’t want to harm the ecosystem.  We lit on the idea of a fish and Charlotte picked out Bob on her first day back to the Lycée.

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Dear Bob, I already miss you. Do you remember how you used to scare me when you slept on your side? And the bubble nest? It was all so funny!….

Philippe realized more than I did that in some way the fish was instrumental in her transition back to Chicago. He lived on her dresser in our corporate apartment and she talked to him daily. Looking back I wonder if he gave some kind of stability to that uncertain time (“Where will we live when we leave this apartment? Will our next home be?”) and made the plain, white room really hers. As we moved to our new house and lived (and continue to live) out of boxes, Bob offered Chicago continuity. And, perhaps, a feeling of control.

She tried to be responsible for feeding him, but the beginning of the school year, with its increasingly heavy homework load, threw her off. In the past few weeks, she’d gotten better about remembering to do it.

More than anything, Bob was Charlotte’s first pet. Sure, she has Miles and Esther, but they’ve been in the family longer than she has. Bob was hers—she chose him, she picked out his gravel colors and tank toys, and she was very proud of him. Often, she would leave Bubba sitting by his tank so they could keep each other company while she was at school. She was looking forward to celebrating her birthday with Bob looking on from the sideboard.

Bob and Bubba share a moment.

Bob and Bubba share a moment.

We were hoping Bob would have an average Betta lifespan and be with us for a year or three, and we’re all a little stunned. Phil and I feel helpless—we can take a sick cat to the vet, but what do you do for a sick fish?

In some small way, this loss will have a silver lining eventually. Last month I accidentally killed Charlotte’s spinach plant (don’t ask!). Now she’s lost Bob.  When our dear Esther-kitty leaves us, Charlotte will have had a taste of how hard it is to lose someone you love. And as much as we have our pets for their companionship and cuteness, as parents we agree that they are also instrumental in teaching responsibility and, sadly, loss.

So, Bob, I hope you’ve swum on to deeper seas and are in some beautiful reef somewhere knowing that a little family in Chicago mourns you. And I thank you for all that you gave us, even briefly. As Charlotte knowingly said (paraphrased), the depth of her sadness is directly related to how much you put into her life. May your memory be for a blessing.


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Raising Awareness and Fighting Congenital Heart Defects

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In January 2005, our world was rocked and we thought it might come to an end. That was when Dr. Rudy Sabbagha informed us that our unborn child had a congenital heart defect. He was pretty sure that the specific defect was tetralogy of Fallot. As my high school friend’s daughter, then 13-years-old, had survived a one-time repair for that defect and was thriving, I was relieved.  We later learned that the defect was Truncus Arteriosus, a far less common heart defect.  We also learned that only 50% of babies are diagnosed in utero with TA, so we felt lucky, in an odd way.

Our first online searches for support and information were unsuccessful.  Eventually I gave up looking. I started this blog, putting our emails online at first and then updating as we went for prenatal visits, when Charlotte was born, and throughout her surgery.

And then people began finding me and Charlotte. The first time a family posted a comment about TA, I got chills. Over the years we’ve collected about a dozen comments from parents who have found comfort in Charlotte’s story. Some of them have their own blogs and I try to keep up. Some of them stopped writing their blogs, and I feared the worst.

Today I want to highlight two people we have met through this blog, people whose CHD stories have changed my outlook:

Francie Paul gave birth to a healthy baby boy in August 2005. Or so she and her husband Brian thought. A few hours later, Joshua began turning gray, his oxygen levels plummeted, and he was rushed to Children’s Memorial Hospital.  The doctors determined that he suffered from severe complex congenital heart disease, which is a combination of several CHDs, and at four-days old, Joshua had open heart surgery. He had another surgery at about three months, and another near his third birthday.

Francie and Brian found themselves shaken and changed. They could have retreated to their home and become insular, handling Joshua’s medical issues privately. But they did not. Instead, they asked the doctors, “What can we do for other children with CHD?” They were told that the greatest need was research funding. So they began raising funds and in 2007 founded the Saving Tiny Hearts Society.  Each year, Saving Tiny Hearts donates its funds to a particular research project that is chosen by the medical professionals who received the previous years funds. In that way, the medical researchers choose the most important and promising research, and the philanthropists do what they do best, raise awareness and funds.

Francie somehow found our blog and called me. She has been not only a shining example, but a steadfast friend, touching base when she knows Charlotte has a surgery or procedure. She’s a pretty intense mom and person, and I admire her tenacity and drive.

As Brian notes in the Parade interview linked below, very few 35-year-olds have severe complex congenital heart disease, and very few 45-year-olds have Truncus Arteriosus.  We don’t know what the future holds for our children. We do know that there is a chance that either Charlotte or Joshua might need a heart transplant in their twenties or thirties. (I don’t like to think about that and don’t talk or write about it very often. I keep faith in the fact that her heart suffered no damage prior to surgery and we’ve had no complications between surgery. Joshua has been similarly healthy, thank goodness.) Brian and Francie have decided to aid the future by funding promising research and I applaud them.

Jessica Renshaw Harris: Jessica is a young woman in her mid-twenties who was born with Truncus Arteriosus. Like Joshua, she was born seemingly healthy and was rushed to the hospital when she turned blue. She had her first repair at three weeks old and her second at three years old. After that she had few complications that I know about. Jessica found us when she was about 23-years-old. She was getting ready for her third repair (a valve and conduit replacement, or what we call a “tune up”) and was just beginning to wrap her head around managing her own health care. She was, in fact, having elective surgery so that she could do it while still well-insured.  Jessica had some post-surgical complications after that surgery (in 2009), but is largely doing very well. We had the pleasure to meet her in August 2009 and it warmed my heart to see Charlotte talking to a grown woman who shares her experience. While Charlotte and Jessica are as different as can be, they share something that we can never share–the understanding of what it is to live with a mended heart. We treasure our relationship with Jessica and her mother, and the friendship they reached out to give us.

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Congenital Heart Defect Awareness Week

Congenital heart defects are the leading cause of infant mortality in the United States. CHD affects 1% of all newborns in the U.S. and are responsible for more deaths in the first year of life than any other birth defect.

Truncus arteriosus is rare among these–according to CDC statistics, 0.72 live births in 10,000 have TA. That’s around 300 children each year. Consider that Prentice Women’s Hospital, the hospital where Charlotte was born, delivers more than 10,000 children each year. and you can begin to get a sense of how few children are born with this defect.*

A recent-ish study demonstrated that truncus arteriosus is one of the most expensive hospitalizations of any defect. An average neonatal stay is $192,781. Average hospital stay is around 21 days.* (Recall that Charlotte’s first stay was 49 days; she was above average even then!) Charlotte’s most recent hospital stay, an angioplasty that required only one overnight stay, came in at more than $66,000, so I’m guessing that her neonate stay was much higher than average.

On the left, a normal heart. On the right, a TA heart. note that there is no definition between pulmonary and aortic trunks (what is purple on the right is blue or red on the left, indicating oxygenated/de-oxygenated blood mixing.)

90% of newborns survive their first repair. The degree of complications after that surgery is hard to track, I think. It depends on how much damage the heart suffered prior to repair (for Charlotte, minimal, thank goodness), what other underlying medical issues are there, and (I think) each child’s individual constitution.

Those are the CDC stats, the numbers that parents seek out when they first hear those life-changing word, “The ultrasound shows…” After that other numbers take over, ventricular performance, pulse ox, weight, medicine dosages, food intake, months to next surgery, etc.

Parents seek out other parents, and in 2005 that was hard to do.  While I try to avoid medical advice and information on the internet, I have relied on it for reflux support and I am proud that this blog has given it to other parents facing Truncus Arterisus and other CHDs.

To celebrate and raise awareness, I’ll spend the rest of the week writing about CHD, community and support. I’ll talk about two of my favorite CHD parents–Tommy Riles and Francie Paul–who have taken inspiration from their children’s medical difficulties to raise awareness and money for children born with congenital heart defects. I’ll talk about how the new Ann and Robert H. Lurie Children’s Hospital of Chicago makes a difference every day for parents and kids facing CHD, both the facility and the US News & World Report-rated Cardiology team. And I’ll end with Charlotte’s post-catheterization check-up, serendipitously scheduled for Valentine’s day.

If you are a parent of a CHD child, or have a CHD yourself, I invite you to tell your story in a comment, and/or add a link to your own blog.

mended heart

*CDC.gov, National Institutes of Health

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