Fifteen? How’d That Happen?

We often joke about your first birthday, Charlotte. How we got a babysitter, posed you with a cupcake, and then went out for dinner. We needed to celebrate surviving your first year.

In that photo, you sit in your Stokke chair, looking somewhat skeptically at the cupcake and candle in front of you, surrounded by the two people who love you best in the world. We are grinning like the silly people we were. A lovely tableau of our little family, celebrating you.

***

If you look closely the picture tells a different story. It’s our baby’s first birthday and there is no party. We decided there would be nothing like the parties our friends and family had planned for first birthdays. It wasn’t that we didn’t love Charlotte. We were just so very tired. And, I knew I’d be devastated when the other babies dove into their cupcakes face-first while she ignored hers. Or when we had to stop the festivities to clean up an epic vomit or give her medication. Or when an aunt glanced over with the look of pity and helplessness that she couldn’t hide, or a teenage cousin tried to get her to eat. No way I was inviting an audience to one of our daily heartbreak sessions.

Look again at the photo: Charlotte’s dinner, on the table next to her, looks partially eaten. There are two glasses, one Pediasure and one water as Charlotte had recently begun sipping from an open cup. Plastic keys and a teething ring to jingle in order to tease and coax her.

Our isolation and my loneliness just about leak out of my eyes as Philippe and I hold hands around her, forming the protective circle we’d kept her in for a year. We thought we were so strong. We were, in fact, like the most glorious winter tree after an ice storm, sparkling yet fragile, with no telling whether the branches would break off in the wind or emerge stronger and more beautiful come spring.

It was years before I actually saw the story this photo tells. I could never understand why friends and acquaintances asked after Charlotte’s health in the quiet tones one uses near the very ill. The picture forced me to see that I’d failed my daughter, that well-meaning friends and family saw what I couldn’t—her spindly Sharpei legs, like toothpicks covered in loose skin. Healthy babies don’t have skinny legs. Or heads that look too big on their bodies. Or eyes that look tired and sunken. Holding this picture, I knew I’d gotten it all wrong—my parenting, Charlotte’s birthday, all of it. It was CHARLOTTE, not us who had survived an incredibly long, exhausting, and difficult year. Charlotte who would, I later learned, suffer post-traumatic stress disorder from this year. Not me. This photo still makes me cry.

***

On your second birthday, I dared to believe you might try a cupcake. We went to a bakery with Sheri, your favorite grownup friend, and ordered three, all different flavors. You watched while Sheri and I each ate half a cupcake. Sheri made happy small talk to distract me as you ignored your treat. I tossed the evidence in the trash. In the photo from that birthday, you’re leaning against Sheri, laughing as she holds your hands out to embrace the world. If your legs were still skinny, I can’t tell—your pink and yellow plaid dress comes down just past your knees and the photo crops at mid-calf. Other pictures show your glee at opening the pile of presents that arrived from around the country to celebrate you.

There are no pictures, however, of the cupcakes.

That same day, you picked up the Gerber sippy cup, pointed at the brand name and said, “B.” You had begun to teach yourself the alphabet. Your feeding therapist gifted you with a Leapfrog Word Whammer and you were off and reading three-letter words. So what if you didn’t care about cake? You were going to be a reader, like me.

***

For your third birthday, you asked for a chocolate and “pink” birthday cake. After the “birthday cake miracle” two months earlier, when you’d asked for a second piece of cake at Sarah’s party, I’d determined to make it from scratch. One of the layers broke as I lifted it from the pan, so I “glued” it with some icing. My decorations were less than expert. To be frank, the cake was kind of ugly. You watched me salvage the wreck. After I muttered for five straight minutes about how ugly it was, you said, “Mommy, forgive yourself.” You brought me to tears with your kindness and empathy.

We gathered a gaggle of neighborhood toddlers to celebrate. Someone snapped a picture of us as I held you toward the cake and you proudly scrunched your face to blow out the candle. Then you dug in.

I look at the photos from these days and see the person you would become: open, cheerful, kind, bright and empathetic. You thrived despite our early foibles and failures. You soldiered on to fight every medical calamity that came your way. If you had been fighting actually battles, you’d be a decorated veteran.

***

Today, on your fifteenth birthday, the cake was, quite frankly, ugly again. But you, you were magnificent. In the middle of a quarantine, you pivoted gracefully from months of planning your special day to create special moments with your friends—both virtual gaming and a socially distanced mocktail party. You were gleeful and grateful.

I am relieved that when I look at the photos from today, there is only one story, that of a young woman who came into the world with the chips stacked against her and said, “That’s not my story. My story is one of triumph.” You make my heart sing every day, helping the memories of what felt like failure 15 years ago fade into just another story that we tell.

Happy birthday, my sweet girl. May you grow from strength to strength.

Happy Heart-a-versary to My Heart Warrior

Charlotte’s eleventh birthday was last Monday, though the celebrations began on April 30. By the actual birthday, Charlotte had had a slumber party (with cupcakes), a special date with Dad to see her Red Sox beat the White Sox (with ice cream), and fancy sushi with both of us (with ice cream x 2). On Monday, she had, as she has for at least 6 years, fried cod with chipotle mayonnaise and a homemade chocolate cake. The only thing she didn’t get was her annual birthday letter on the blog and a present from me.Today was a regular Monday. So regular, in fact, that I nearly forgot that it was Charlotte’s heart-aversary.

 

Eleven years ago today, Charlotte had her first open-heart surgery.  As I wrote in 2011:

“Today, we pause to celebrate–a bit more somberly perhaps, but with equal amounts of joy–Charlotte’s heart-a-versary.

 Six years ago today, we handed our teeny-tiny baby to the anesthesiologist. I remember him as being quite tall and having an Australian accent, but I was post-surgery myself so am an unreliable witness. He cradled her in his arms and we all walked to the operating suite. There we gave our baby, our hopes, and our trust to the great good team of Drs. Mavroudis, Backer, and Stewart. On the way to the waiting room, Philippe collapsed in my arms.
We waited. And waited. And then Dr. Mavroudis came to us smiling, telling us that Charlotte was back in her room and the nurses were setting up her meds. I think that was the first time we breathed all day.”
Last year, just three months after her third open-heart surgery, the significance of her heart-a-versary was not lost on me:

“As I made my coffee a few minutes ago, I was struck by the date. Ten years ago today, I clutched my coffee in a paper cup as Philippe and I awaited hourly updates from Julie about our tiny baby daughter’s first open heart surgery.  Goldman-R1-048-22AThe day had begun excruciatingly early for a mom recovering from a C-section. We arrived at dawn at the hospital and, shortly thereafter, handed our bundle of seven-day-old love to a very tall anesthesiology fellow who promised to care for her as if she was his own. We turned to walk down the stark white hall of the surgery suite towards the waiting room and Philippe nearly collapsed in my arms, overwrought with concern and fear.

Today, Philippe was, as usual, up with the sun. I’m savoring my coffee on the front porch in my favorite kitty mug waiting for him to come home from doing some early morning errands. Charlotte is upstairs, sleeping or reading. I don’t know, I haven’t seen her yet. I do know that she is safe, sound, and healthy thanks to the doctors that cared for her on May 16, 2005–Drs. Carl Backer, Gus Mavroudis, and Bob Stewart.”

We will never stop being grateful to the doctors and staff at Lurie Children’s. And we’ll never cease to be amazed when we hear another parent’s gratitude–as we did tonight when an acquaintance told us that her son (who has an 18-year old daughter) had his CHD repaired at Lurie Children’s. Every now and then, the enormity of what might have been washes over me. More than once I have been reduced to sobs–the tears that never came on May 16, 2005. The tears I couldn’t cry because I wouldn’t let myself think about what was really happening in that surgical suite. The tears Philippe shed, in full knowledge that the outcome might have been completely other.

We are so blessed to have this magnificent facility in our backyard. It was with this gratitude that Philippe, Charlotte and I, along with Charlotte’s first babysitter, Karley, and her Chicago grandmother, Jenny, and a host of other friends and friends of friends participated yesterday in Move for the Kids. Team Charlotte has raised $2,787 towards our $5,000 goal. In honor of Charlotte’s 11th heart-a-versary, please join us in supporting Lurie Children’s by supporting our walk. You can still donate to Team Charlotte (just click the link).

No birthday letter this year, but as always, we love you, Charlotte. May you continue to grow from strength to strength.

 

 

Happy Birthday, Charlotte!

On May 9, 2005 darling Charlotte came into the world four weeks early. On May 9, 2006, I started my blog tradition of a letter to Charlotte on her birthday. In a perfect world, the letter would have been written and posted last night. Our world, however, is not perfect, so she’ll have to read it tomorrow!

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My dearest Charlotte,

My mind cannot process the fact that you are ten years old today. What a magical and frustrating age (for you and for us, I’m sure)! You still have one foot firmly grounded in childhood–as easily awed by the wonders of the world as you are amused by my (sometimes lame) jokes, as eager to please as you are quick to anger and frustrate, and as creative, strong, and kind as you ever have been. Your other foot is on the edge of your biggest journey, into adulthood. I can see that it frightens you a bit, the vast future in which you need to figure out who you’ll be and how you’ll get there.

While the road ahead may be frightening, it will hold as many wonders and as much love as you let it. And there will be potholes (the first of which we hit, literally, on the way home tonight).  You have already traveled further than many ten year olds. You have proven again and again that you are a survivor with a healthy sense of humor. Don’t believe me? Just take a look…

First Birthday  On May 9, 2005, we gave you a cupcake, Karley took a photo, and we went out to dinner (without you) to celebrate having survived a year that included premature birth, heart surgery, 49 days in the hospital, g-tube insertion, cardiac catheterization, and a cranio helmet, not to mention countless vomits, physical therapy, feeding therapy, meds, and more. You were thoroughly unimpressed by the cupcake as you were still largely tube-fed and tiny. A few years after this picture was taken, I finally realized just how scrawny your legs were and how huge your eyes looked in your head. You were (and are) our darling, energetic, bright star; we never saw what others saw–that your legs looked like skin-covered toothpicks. Only looking at this photo now can I understand the concern with which people always asked about your health.

Today’s photo says it all, and yet says nothing. You are still our shining star. And now you know it and ham it up as often as you can. We began your special day with a trip to tour Frank Lloyd Wright’s Robie House because you were inspired by Blue Balliet‘s The Wright Three. Then, instead of your regular cod with chipotle mayo birthday dinner, we took you to our favorite upscale casual restaurant, Summer House Santa Monica. DSCN1414

What this picture doesn’t show is how brave and strong you are or how similar and yet how different this past year has been from that first year. Again, you’ve had a cardiac MRI and open heart surgery. (That broken pinky is nearly forgotten). This time, you kind of diagnosed yourself and let us know something was wrong. There was no drama and you had a textbook recovery. You courageously shared your surgery with your classmates, and in turn they showed you unparalleled compassion. That’s the big stuff. On the smaller side, you went to sleep away camp for the first time, mastered long division, and proved that you can learn a hard piano piece if you put your mind to it. You’ve taken your chess game to the next level, played the piano for charity (the week of your surgery), and given your Belgian grandmother one of her best ever Christmases. My heart skipped a beat when you put change in the tzedakah box this morning, saying that you didn’t feel right keeping Jenny’s entire $10 gift for yourself.

Best of all, you greet nearly every day with a smile or a full on giggle. Ever since you were a baby you have seemed to sense how precious a gift each day is.

So, my darling girl, as you step onto this road ahead, know that you will grow back into the comfort you have with your scars. They do not define you–they decorate you much as the medals on the epaulets of a soldier’s uniform do. You have won the battle, with the help of the inestimable Team Charlotte.

This year Team Charlotte is too vast to mention, for fear that I’ll leave out some wonderful nurse or tech at Lurie Children’s Regenstein Cardiac Care Unit. Thank you all, from the bottom of our hearts.

Charlotte, may you ever grow from strength to strength. And as I tell you each day on your way to school, be calm, curious and creative and remember that I love you, all day, every day.

MFTK 2015

On May 17, Charlotte will be RUNNING a 5K, Move for the Kids, to raise money for Ann & Robert H. Lurie Children’s Hospital. Charlotte chose this race, which she’ll run with her dad and her cardiologist, to mark her full recovery. Please click on the icon to support Team Charlotte. And register to walk or run with us!

Happy Belated Birthday to Baby Sprout

Dear Charlotte,

Nine years ago, Baby Sprout made an early entrance into this world on the morning after Mother’s Day. We knew a lot about you that morning–that you’d be rushed to Children’s Memorial Hospital and that  have open heart surgery. There was so much more that we didn’t know, starting with whether Sprout was a boy or a girl. Mostly, we didn’t know what we didn’t know. We’re quick studies, however, and we still refer to ourselves as The PITS (Parents-in-Training) to acknowledge how much we have to learn.

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While what we still don’t know about parenting may be legion, what we know about you could fill reams of paper (and has, virtually speaking). You survived that first surgery and has had best-case health outcomes for nine years. As you complete your first decade we know that you are a smart, funny, sensitive (in good and bad ways), generous, kind child. You are quick to laugh, though also quick to cry. You have  a lovely disposition, though you can also have a terrible temper.  You love to read, play piano, horseback ride, color, and play with your friends. You are imaginative and creative.

Your deep grief at the death of our beloved cat Esther has touched me–to know that you love and grieve with such ardor is at the same time difficult (because I cannot help you through the pain) and heart-warming (because you are such a passionate soul).

You have become increasingly self-conscious of you scar and yet, at the same time, quite proud of it. This somehow seems to me an indication of the fine, thoughtful young woman I am sure you will become–conscious of the world around you, aware of your own strengths, and concerned about your limitations.

And what, above all else, have you done to make us proud lately?  You asked that in lieu of birthday gifts, anyone attending your party make a donation to the 2014 Move for the Kids in honor of “her hospital,” the Ann & Robert H. Lurie Children’s Hospital of Chicago.  [No, folks, I don’t make this stuff up. (Okay, she also wanted “fairy stuff or Monster High stuff” and “can cousin Brandi come to my party?’]

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Click the image to support Team Charlotte!

My poetry muse seems to have gone fishing this birthday and I’ve only gotten as far as “nine is fine.” And I’m sure it will be.  Darling Sprout, my sweet princess–may you grow from strength to strength.

And to Team Charlotte and my dear readers, As I feel I must do each year at this time, I thank you all for being with us on this journey, and for reading along whether I write daily or sporadically. Charlotte’s journey has been incredible so far, and we are privileged to be along for her ride. We’re even more privileged to know that her story has helped and inspired others, and connected us with families and parents who have similar paths to walk.

Thank you for sharing it  all with us.

Heart-a-versary

Charlotte sometime before her surgery. (May, 2005)

Last Monday we celebrated Charlotte’s sixth birthday. Of course, she “celebrated” with her second bout of strep throat in 3 weeks (who knew I was supposed to change her toothbrush?! We’re still P.I.T.s*). Just as I finished icing the cake for school, I got a call to pick her up because of a high fever. Not to worry, she had cake that night at home, cupcakes at school on Thursday, and yesterday she had a magnificent puppet party.

Today, we pause to celebrate–a bit more somberly perhaps, but with equal amounts of joy–Charlotte’s heart-a-versary.

Six years ago today, we handed our teeny-tiny baby to the anesthesiologist. I remember him as being quite tall and having an Australian accent, but I was post-surgery myself so am an unreliable witness. He cradled her in his arms and we all walked to the operating suite. There we gave our baby, our hopes, and our trust to the great good team of Drs. Mavroudis, Backer, and Stewart. On the way to the waiting room, Philippe collapsed in my arms.

We waited. And waited. And then Dr. Mavroudis came to us smiling, telling us that Charlotte was back in her room and the nurses were setting up her meds. I think that was the first time we breathed that day.
Charlotte immediately post-surgery (May 16, 2005). So little amidst all those tubes, medicines, and equipment.

So today, as every May 16, we think of those wonderful doctors, as well as Charlotte’s formidable cardiologist Luciana Young; her lead nurses Nancy Smith and Samantha McCoy; and all the staff and nursers who gave our daughter back to us.

She may have been born on May 9, but it was on May 16 that Charlotte was given a fighting chance at life. We will be forever deeply grateful to all of you who helped make that happened and who supported us through the long days and nights that followed.

Charlotte last Monday. Feeling terrible with strep and exhausted after a 2-hour doctor appointment, but ready for her birthday cake.

Half a Decade of Charlotte!

Then (May, 2005)

Today we celebrated Mother’s Day by celebrating Charlotte’s birthday. Last year I let Charlotte write her birthday blog. This year, I want to take that job back and wish my beautiful daughter happy birthday and thank her for being my reason to celebrate Mother’s Day.
For Charlotte the birthday is all about the cake. I made cake for school on Tuesday and made another cake today. Today, we made the cake from scratch. All went well until I took the layers from the pans. One layer completely (or nearly) crumbled. The other almost split in half. The icing wasn’t quite spreadable enough. I did my best to “glue” the cake together with the icing, giggling and commenting about the pathetic-looking thing the whole time. Finally, my wiser-than-her-age daughter said, “Mommy, you really need to forgive yourself. It doesn’t matter what it looks like. It matters what it tastes like.”

———-

It’s hard to believe that at at this time five years ago I was recovering from a c-section and a tiny little Charlotte was in the special nursery at Prentice Hospital. I had not yet held her. Since we knew about her heart, she was closely monitored and by the time she was fourteen hours old she had been transferred to Children’s Memorial Hospital.

On May 16, 2005, the anesthesiologist carried our tiny love to the operating room. My husband collapsed in my arms and I, seven days post-surgery myself, held him up. I realize now that I had no idea what we stood to lose. My own surgery and my dogged focus on the “here and now” prevented me from imagining anything past that moment. As I look back, I think that I had not yet truly bonded with Charlotte despite having sat by her side for as many hours a day as the nurses would let me.

Last week I randomly flashed on that moment. I had to pull the car over and give in to uncontrollable, inconsolable sobbing. Clearly, we had a wonderful outcome in 2005. And now I fully understand what we might have lost. The thought is paralyzing despite the fact that Charlotte is happily asleep in her bed.

On May 16, 2010, we will celebrate Charlotte’s birthday with her classmates, her closest friends, her babysitters, and one of her grandmothers. I can think of no more fitting day to celebrate than the anniversary of the day that Charlotte was really given to us, full of potential and hope.

Now (May, 9, 2010, Cafe 28)

Charlotte, as you enter your sixth year, I wish you the evolution of your unbounded curiosity, the continued growth of your unrelenting optimism, and the full blossoming of your potential. You have taught me how important it is to slow down, reminded me how joyful it is to discover a new book or acquire a new skill, and shared with me more love than I ever knew was possible.

And, in case you were wondering–that pathetic-looking cake was absolutely DELICIOUS!

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: