Jew Eat Yet?

Twenty-Nine

Last Shabbat, Léah led the services at the Manhattan synagogue where they are a rabbinical intern. It was their first time doing it alone and it seemed like the perfect transition to the changes that come with turning 29.

Looking at the birthday posts I’ve written on here since the day Léah turned 10, I can see how almost all of them focus on the past. Let me, for once, touch on what lies ahead. At 29, Léah begins to say good-bye to their twenties, a decade that began when they were a new student at NYU after a long academic break. At 29, Léah is halfway through their rabbinical studies in Philadelphia, a vocation and calling that seems to fit them like a glove. At 29, Léah is living with and planning a life with their wonderful fiancé Rachmiel (Emery’s new chosen name). At 29, Léah continues to explore the intersections of art, service, and humanity in ways that continue to amaze me.

Because Léah is one of the last-remaining letter writers on this planet, I dusted off my favorite fountain pens earlier this year and began writing regularly to my oldest child. Our back-and-forth missives mean the world to me, you can learn so many different things about a person from letters than you can from emails or texts. It’s as is the act of moving your hand across a page and dropping ink produces thoughts and feelings that are very different from expressing yourself in other ways. I hope this kind of communication continues for the rest of our lives.

What a joy it is to know this person who continues to surprise me and fill me with wonder for all their uniqueness. Léah’s favorite poet is Mary Oliver, they even quoted her at the synagogue service on Saturday. Here’s the poem that calls out to me for Léah’s 29th birthday:

You do not have to be good.
You do not have to walk on your knees
for a hundred miles through the desert, repenting.
You only have to let the soft animal of your body 
love what it loves.

Tell me about despair, yours, and I will tell you mine.
Meanwhile the world goes on.
Meanwhile the sun and the clear pebbles of the rain
are moving across the landscapes,
over the prairies and the deep trees,
the mountains and the rivers.

Meanwhile the wild geese, high in the clean blue air,
are heading home again.
Whoever you are, no matter how lonely,
the world offers itself to your imagination,
calls to you like the wild geese, harsh and exciting –
over and over announcing your place
in the family of things.

I love you so much, Léah. Happy Birthday!

Twenty-Eight

Every time I see this photo of Léah sitting on that bench with their Barney and Annie dolls, my heart jumps out of my chest. I have so many memories of Léah at this age, lots of warm, wonderful memories, and lots of guilt since there were some hard times when they were very young where I was all but checked out. I was 35 when Léah was born — I didn’t know up until then if being a parent was in the cards for me, and the immense love I instantly felt for this child both thrilled and scared me. I wanted to “do it right,” to be the “perfect parent,” which I now recognize as an impossible, absurd, and even undesirable folly, and one I obviously didn’t come close to reaching. I made plenty of mistakes, large and small, from the way I tortured Léah’s beautiful red curls by trying to painfully brush through them to trying to fit Léah into a certain box so I could show the world what a good dad I was. Ugh. But the love was always there, thank God, and we survived and thrived through all sorts of challenging periods in both of our lives in our own unique ways.

Now, at 28, I still sometimes see that adorable, vulnerable child on the bench in Léah, along with the unbelievably strong, kind, resourceful, creative, brilliant adult and second-year rabbinical student that they are. While seeing the way Léah’s little hand is clutching that Annie doll moves me to tears, it also takes me to the time years later when Léah starred as Annie in their children’s theater school’s production of that musical. I spent most of Léah’s years as a child actor trying to suppress my inner “Mama Rose” stage mother persona and not grumbling when Léah didn’t get the part I thought they deserved, but I was truly ready to storm the barricades if they weren’t finally cast in the lead role for the musical they were born to play. I mean, come on, they didn’t even need to use a goddamn wig! But Léah did get the role and we often talked about my fantasy of playing Daddy Warbucks to their Annie. I certainly had the scalp and the girth for the part, if not the bank account. We used to sing their big duet together all the time, and every time we did, the slightly dysfunctional lyrics resonated.

Together at last
Together forever
We're tying a knot
They never can sever.

I don't need sunshine now
To turn my skies to blue. 
I don't need anything but you! 

Yesterday was plain awful
You can say that again! 
Yesterday was plain awful 
But that's not now
That's then.

I'm poor as a mouse
I'm richer than Midas.
But nothing on earth 
Could ever divide us.

And if tomorrow
I'm an apple seller, too
I don't need anything, anything, anything
I don't need anything but you! 

Happy Birthday, Léah. I love you so much!

Twenty-Seven

Two rabbinical students studying Talmud at our dining room table. I’m so thrilled that Léah and Emery are here with us on Léah’s birthday. It was obviously not possible for Léah to be in L.A. last year and it was touch and go this year (thanks, Omicron) until their plane touched down on Christmas Eve. It’s depressing that the pandemic still rages but Léah has made the most of it with their Zoom seders and weekly online Havdalah service. My beloved first-born is just beginning this new chapter in their life and it’s so gratifying to me that they are following their bliss towards a vocation that combines all of their strengths, skills, and passions. What more could any parent ask for?

Today we will do our traditional birthday hike up Runyon Canyon in the unusually brisk Los Angeles weather and I will think of that amazing moment 27 years ago tonight when Léah came into this world.

As I’m sure I’ve relayed in several of these posts, their mom and I were at the El Capitan Theater in Hollywood watching The Lion King for the umpteenth time when labor began and I wasn’t sure that Léah wasn’t going to be born right there in our fifth row seats while Rafiki sang “Circle of Life” (a song Léah would later sing in a great production of that musical, as seen here with a slightly terrified baby Charles). And a birth like Esther Blodgett’s in A Star Is Born (“I was born in a trunk in the Princess Theater, in Pocatello, Idaho…”) would have been all too appropriate for the life Léah was destined to live.

When I turned 27, I was three months into my new life in California, away from everyone and everything I knew but following my gut to stay put in this new land even when the job I moved out here for went bust the following month. I’m glad that Léah has always followed their gut, even when their decisions, like the one to leave high school at the beginning of sophomore year, were scary and unpopular. Finding connection and community hasn’t always been easy for my oldest child, but nevertheless, Léah persisted and moved forward despite the challenges, and that movement and trust has borne so much fruit.

Léah, I’m far from the perfect dad, my mistakes are legion, from torturing your beautiful curls when you were young to not always making time for you when you needed it to mangling your pronouns as an adult despite my best efforts, but I love you more than I can possibly say. I can’t begin to express my gratitude that you are such an important part of my life.

Last night when we were doing a jigsaw puzzle together (correction: when Kendall, you, and Emery were working on a complicated jigsaw puzzle and I was looking on in horror), you mentioned that you had recently watched Yentl again and I started spontaneously singing the final song from that film that we both love. It suddenly seemed so perfect for this occasion.

The time had come
To try my wings
And even though it seemed at any moment I could fall
I felt the most
Amazing things
The things you can't imagine
If you've never flown at all.

Though it's safer to stay on the ground
Sometimes where danger lies
There the sweetest of pleasures are found
No matter where I go
There'll be memories that tug at my sleeve
But there will also be
More to question, yet more to believe.

The more I live, the more I learn
The more I learn, the more I realize
The less I know
Each step I take 
(Papa, I've a voice now)
Each page I turn 
(Papa, I've a choice now)
Each mile I travel only means
The more I have to go
What's wrong with wanting more?
If you can fly, then soar
With all there is, why settle for
Just a piece of sky?

I love you, Léah.

Twenty-Six

The above photo was taken a year ago today on the summit of Runyon Canyon during my annual birthday hike with my beloved first born. Léah usually invites some of their cool L.A. friends on the hike as well and I’m always thrilled that I get to accompany them (not to mention relieved that I can make it up the hill at my advanced age). Alas, no hike this year as Léah has been stuck in Brooklyn during this fucking pandemic. I haven’t had a chance to see Léah since I dropped them off at LAX on January 2, 2020 — this is now the longest stretch that I haven’t seen Léah since they were born 26 years ago tonight. I hate it and so many things about this challenging period and yet I’ll also say that it has brought some unexpected gifts. Early on in the quarantine, Léah’s big Passover seder plans in Brooklyn were obviously dashed so they organized a wonderful seder online through Zoom. This was just before Zoom became such a daily fixture in my life so I was a little worried about how it would go but it was wonderful and I was immediately aware that I never would have been able to participate in this ritual gathering if not for this insane experience that we’re all going through. Soon afterwards, Léah began a weekly Havdalah service (the ritual that ends the Sabbath) every Saturday evening that has become a regular fixture in our house and one that we would never miss. Charles, with his new iPad, began regularly texting the “New York Squad,” as he calls Léah and Kirsten, and organizing fun game nights via Zoom that I’m also sure we never would have instigated if not for the pandemic. Freed from all travel and the constant flurry of activity outside of the home, I, in many ways, feel even closer to Léah that I probably would if our lives had been carrying on as normal these past 10 months, despite the fact that I so miss seeing them in person and can’t believe it’s been a full year.

As I think about how Léah has navigated all of the difficult periods in their life, including current ones like the pandemic and four miserable years of you-know-who and his racist administration, I am in awe. Not because Léah is able to sail through these events without a care in the world, quite the contrary. I am in awe at how Léah has always been able to move through adversity with awareness and real feelings while continually adding to their toolbox of skills and coping mechanisms to help stay afloat, many having to do with the arts and creative expression.

For someone who spent a good portion of their childhood longing for community and often being disappointed, I am in awe of the myriad communities Léah has created for themself as an adult — so many diverse and fascinating and often intersecting groups of people that Léah connects with on different levels: their theater community, their Jewish community, their LGBTQ+ community, their camp community, communities related to both unschooling and advanced academia, music and literature, typography and graphic design, family and friends, travel and culture, and so many more. Seeing how Léah has assumed leadership roles in many of these groups fills me with admiration and the awareness that they have become a role model for me in many ways. I am continually inspired as I watch Léah figure things out.

Sitting at home during quarantine and already having a propensity to wallow in nostalgia, I sometimes find myself looking at stacks of old photos from Léah’s childhood and feeling like I have no handle on some of those years. Was I present at the time if some of it seems so foreign and distant to me now? Surely not as much as I could have been, and it’s easy to cue up the Jewish guilt and to make the jokes about the therapy sessions that my frequently imperfect parenting may have necessitated. But today I feel like overriding those tendencies with a big “Fuck that.” Using Léah as my beacon, I will celebrate all the ins and outs, the ups and downs of our relationship over these past 26 years and be grateful for every second as I look forward to getting to be a part of this amazing human’s life for many years to come.

I love you so much, Léah. Have a wonderful birthday!

Twenty-Five

There’s no denying it once your kid turns a quarter of a century. No matter how you want to parse it, they’re a full-fledged adult. Not that Léah hasn’t been one for a while, but denial runs strong, and besides, Léah has been irritated for years that they couldn’t rent a car without a special “youth premium” added and now, as of today, they can finally pay the same daily rate as the rest of us geezers. On the other hand, as I and every parent in history has learned, do you ever really fully see your own children as fully independent adult beings? Not exactly — especially if you come from a long line of neurotic Jews!

It was 25 years ago tonight that my beloved first born came into this world. I’m so glad that I got to witness it for myself — the first miraculous childbirth that I ever saw with my own eyes. From their first moments, aspects of Léah’s lifelong personality were apparent. I remember how our obstetrician had just told us after we had been admitted to a room at Cedars that because Léah’s mom was barely dilated, we were probably at least another eight or nine hours away from anything happening. I had just turned to walk out of the room to the hospital waiting area to tell Sophie’s parents this news when she let out a ferocious and very unexpected wail. The doctor, who had been gathering his own things to leave, took one look at Sophie and leapt into action, yelling for the nurses and nearly knocking over a hospital cart in his dash back to her side. “The baby’s coming!” he shouted in total shock. While Sophie was only two centimeters dilated when he had checked seconds earlier, that one mega-contraction took her all the way to ten. Although as a man I can’t begin to understand what any aspect of childbirth might feel like (with the possible exception of my three kidney stones), hearing the type of scream that emanated from Léah’s mother at that moment, a sound I’ve never heard before or since, I can only say one thing: “Ouch.” But Léah was going to come when and how they pleased, no matter what the dumb doctor said. Maybe it was their sense of punctuality — a trait I always admired. We were less than half an hour away from the end of Léah’s official due date, and damn it, they were going to be on time!

There were many other early traits that, in quarter-of-a-century hindsight, were apparent from the earliest of days. Léah’s inquisitiveness, their love of family togetherness, playing games, thinking about Big Topics, introspection, impatience with others’ dysfunction, their incredible determination when they decide to do something, anxiety about finding the groups they wanted to belong to, ability to discern what they are interested in and to tune out the rest, interest in finding their own personal path through Judaism, passion for all types of theatrical presentations, music, and creativity.

I was not a particularly young first-time parent at the age of 35, but I was certainly naïve about my role, thinking that I had to do everything “right” or I’d completely fuck things up. While I cherish being a parent more than anything else I’ve ever done, I’m also now well aware of the natural limits of the position. As that beautiful Kahlil Gibran poem that we included in Léah’s baby book (long before I really understood it) stated:

Your children are not your children.
They are sons and daughters of Life's longing for itself. 
They come through you but not from you.
And though they are with you yet they belong not to you.

You may give them your love but not your thoughts,
For they have their own thoughts.
You may house their bodies but not their souls,
For their souls dwell in the house of tomorrow, which you cannot visit, not even in your dreams.
You may strive to be like them, but seek not to make them like you.

Ain’t that the truth. I can’t take any “credit” for the amazing, kind person that Léah is today, but if I’m being honest, I still feel responsible for any neuroses I may have passed on. Oy, forgive me, Léah! I still sometimes think about difficult periods where I felt emotionally absent because of various things going on in my life, and I cringe, remembering certain days or moments and how emotionally unavailable I was during those times. But we just have to do the best with what we have and I believe Léah always knew how incredibly loved they were.

Charles Nelson Reilly and Léah

Léah was not home for their birthday last year so I'm thrilled they're here today and we can do our annual birthday hike up Runyon Canyon. But despite the miles that separate us, I never really feel out of touch. I love that Léah and I share a love of musical theater. When composer Jerry Herman died two days ago, I thought of one of my favorite songs of his that was introduced to the world by our friend Charles Nelson Reilly when he played the original Cornelius Hackl in "Hello, Dolly!" over half a century ago. The lyrics of this song represent exactly how I felt the moment I saw Léah emerge onto this planet.

It only,
Takes a moment,
For your eyes to meet, and then...
Your heart knows,
In a moment,
You will never be
Alone again.
I held her,
For an instant,
But my arms felt sure,
And strong...
It only,
Takes a moment
To be loved,
A whole life long.

I love you, Léah.

Twenty-Four

My baby turns 24 today! I’ll skip my usual paragraph about how impossible that is, and just go to the part where I ponder how lucky I am to have a daughter as kind, loving, and brilliant as Léah. I’m glad I still have this old blog, if only to wish them a happy birthday as I’ve been doing here every year since Léah turned 10 on December 28, 2004.

It feels especially moving to be writing this, not from my home in L.A., but in Chicago where I’m helping with my dad who’s been in the hospital for a month. Oh, how he loves his granddaughter. He may be the only person in his mid-80s who’s a regular listener to Léah’s wonderful podcast “Looking/Feeling/Queering.” He tries his best to understand all the phrases that Léah has introduced into his life and while he may never fully grasp concepts such as non-binary or genderqueer, he’s making his best attempt (I should record the conversations we have about those concepts for another podcast!). Staying at my sister’s House of Family Archives, I’m surrounded wherever I turn by happy memories of visits to Chicago over the years including the photo below of my Dad, Léah, and my nephew Sammy. (Note to Léah: we’re recreating every photo in this post so get ready!)

The last time I saw Léah was in this city last summer when, following their graduation from NYU, we met up here before they returned to the east coast to start the next chapter of their life. Léah has always loved my hometown of Chicago and may end up here one day. Frankly, I think the sensibilities of this town fit Léah like a glove.

I’m trying not to turn into my father right now and start listing a series of Léah’s accomplishments (as tempting as it is). Instead, I’ll just reiterate how thrilled I’ve been every single day for the past 24 years to be their dad, how much I cherish our connection, and how grateful I am for everything that Léah has taught me.

I look forward to wherever the winds take us, Léah. I love you so, so much.

Twenty-Three

What? How in the hell is my daughter turning 23 today when I’m only 33? Oh wait — the first line of Léah’s birthday post and it’s already all about me. Ugh. And now it’s still about me, make me stop! Oh, who am I kidding, when you’re a parent and you’re talking about your child, there’s a part of it that is always going to be about you. How did I help to create this amazing human being, you wonder. And then you start worrying about all the things you did that fucked them up, or gave them a skewed perspective on the world, or the stuff you neglected to teach them or prepare them for. And then you try get over your narcissistic bender, realizing you did the best that you knew how to do, and you comfort yourself with the fact that at least you realize how nuts you are, and then you acknowledge that this amazing soul has always been their own person from the moment they were born 23 years ago today, and you are filled with love and gratitude for the incredible human being they are, with all of their unique strengths and issues and interests and challenges and triumphs, and you realize how much they have taught you every single moment that they have been on this planet, not only about what it means to be a parent, but also how to look at the world in completely different ways, and you are filled with emotion about how they enrich your life in every way.

Phew, was that a long sentence? Where’s my editor? That would also be Léah, who’s one of the best writers I know. And one of the most loyal, true, caring, sensitive, responsible people I’ve ever met. A spectacular daughter, sister, and friend.

And now, a full-fledged adult (yeah, it’s hard to wrap my brain around that, I admit) who is about to finish college and continue to make a mark on a world that desperately, fitfully, gratefully needs such people — now more than ever.

I love you, Léah.

Twenty-Two

This is one of the longest stretches that I haven’t seen my daughter Leah since she was born 22 years ago today. She’s been at school in Berlin since August, and because I don’t have any of my own recent photos of her I’m stealing some of her recent Instagram selfies (forgive me, Leah!). Now working in Dublin over winter break, we’ll get a brief visit from her in a few days before she heads off to New York to finish her junior year. Then, who knows what?

Leah has been a traveler since the day she was born — in so many ways including the literal one. I remember our very first separation — when she went to Paris as a baby with her mom to visit family. I waited impatiently at the International Terminal at LAX to pick them up on their return. I remember pacing for what seemed like hours, and constantly checking the security door for any sign of them. When they finally emerged, I couldn’t wait until they walked down the very long path to where visitors could finally greet the passengers, I reached down through the railing of the lower-level incline and Leah’s mom reached up to hand me her wriggling little body. While my memory can be pretty shaky these days, as Leah and others will tell you, as long as I live I will never forget the feeling of my baby’s warm body returning to my arms. I remember what it felt like to kiss the top of her red-haired head and to feel her little arms and legs moving in the cute beige onesie she was wearing. It is a visceral sense memory that is forever imprinted in my brain, and I think of it every single time I welcome her home from her many travels.

I’ve been marking Leah’s birthday on this blog since the day she reached the double digits — and for the past four years, it’s the ONLY thing I’ve marked here. This is the first year that I haven’t read those entries on her birthday before writing a new one but I know I’ve often shared the story of her birth. Earlier that day, on December 28, 1994, Leah’s mom, Sophie, and I were at the El Capitan Theater in Hollywood watching Disney’s The Lion King, a movie we loved and had already seen a few times even though it was still in its first run. The part where Rafiki holds baby Simba up for all the world to see was especially meaningful during that particular viewing. Who knew that Leah would grow up to play Rafiki in a stage production of that story, just after her brother was finally released from the hospital after five long months and she could welcome him into the world.

I always loved the fact that Leah was practically born in the El Capitan considering her passion for theater that would shine through from such an early age and since Leah and I practically made a home out of that building for so many years of her childhood. When we arrived at the hospital later that night, the doctor examined Sophie and had just finished saying it would be many hours until Leah would make her appearance. There was some discussion about whether we should go home and come back the next day when the doctor suddenly looked down and screamed to the nurses. “The baby’s coming!” I remember some kind of crash of medical equipment at that point although I can’t trust my medical TV show-filled brain to accurately say what it was, but I do know that it was just a matter of minutes until Leah was with us, at 11:36 pm, arriving just in the nick of time to make her actual due date. She wasn’t having any of this “many hours from now” business and, as usual throughout her life, was on her own timetable.

Today I am filled with gratitude for Leah’s role in my life. She continues to teach and inspire me every day, including the simple but vitally important lessons on how to move through this very challenging world with dignity, grace, love, and kindness; how to pick yourself up when you’re down; and how to laugh, cry, and sing. I am in awe of her many talents, her compassion for others, and her commitment to making the world a better place, both the world immediately around her as well as the world at large. 

I love you so much, Leah.

Twenty-One

Holy shit, my baby is 21! A full-fledged adult! As of today, Leah can legally drink herself silly, get married without parental consent, adopt a child, buy a house without a co-signer, get a license to fly a helicopter, gamble herself into debt, and finally go to a movie at the freaking Sundance Cinemas on Sunset Boulevard, a theater whose strict 21-or-over policy has been the bane of her existence for the past several years.

I've been marking Leah’s birthday for the past dozen years on this blog (for the past few years that’s ALL I’ve been doing on it). I just reread my posts for ages 10, 11, 12, 13, 14, 15, 16, 17, 18, 19, and 20 and am a bit verklempt at the honor and joy it is to be her father. But, for once, instead of looking back on her birthday, I'm going to try to stick to the present. While having a birthday so close to Christmas can definitely be a drag, the best part of it is that she's home for the holidays. Leah and I are about to go on a 21st birthday hike at Runyon Canyon. Should I bring a bottle of booze for the summit? Nah. Leah is wise enough to know that just because she can now legally drink, it doesn’t mean she has to. On the other hand, I made a comment about her ability to get a tattoo as of her 18th birthday in that year’s post, never thinking that she would, and she had one on her wrist before the ink was dry on my blog! Leah has been very sweet about the few tattoos she’s gotten since, including the largest one that you can see in the above photo. She always calls me beforehand, knowing it’s definitely not my preference, and begins the conversation with such care and seriousness that I end up filled with relief that she’s just planning on getting a tattoo and doesn’t have a life-threatening disease! And I do like her new tattoo, I think it suits her perfectly — and provides a tempting human coloring book page for Charlie! (But that IS the last one you’re getting for a while, right, Leah??)

I’m very moved and grateful that Leah has been the member of our family who most focuses on wanting family time and planning family events. Oh, don’t get me wrong, like most people her age, there are plenty of times when I know we’re driving her nuts and even if she’s too kind and evolved these days to openly roll her eyes, I can sense the internal eye rolls — but the deep love she has for us and the importance she places on family is never in question.

Leah is in her second year at NYU and I am wildly impressed by the level of her scholarly pursuits, her activism on and off campus, and the great circle of friends she has gathered in New York. At Gallatin, her school at NYU, the students create their own “concentrations,” an extended form of what we more boringly called our "majors." Leah has to decide on hers by the end of the year and while she’s explained to me numerous times what she’s planning to do, I can’t say I fully understand it yet (my deficiency, not hers), I only know that I’m grateful that she seems so much more “plugged in” to the world around her than I ever did at the age of 21 and is getting a lot more out of her college experience.

Attempting to stay in the now, I will stifle my desire to start belting “Sunrise, Sunset” from the top of Runyon Canyon (although Leah just saw the new version of "Fiddler on the Roof" in New York starring her Broadway father figure Danny Burstein and loved it!) but I do have to say what an amazing daughter, sister, stepdaughter, niece, granddaughter, cousin, and friend she has been these past 21 years. Yes, she is now officially "of age" and is far more mature than I've ever been, but as her father, will I ever be able to treat her as a full-fledged adult? In a word…no. 

Happy Birthday, Leah. I wish you a fabulous year full of happiness, health, fulfillment, and fun. No rush for the booze, marriage, house, helicopters, or gambling, but if you ever feel the need to roll your eyes at me over the next 21 years or so, go right ahead! I love you so much.

Twenty

I’ve been documenting Leah’s birthday on this blog since the day she hit the double digits in 2004. Back then, in the heyday of blogging, I was writing here every day. Ten years later, this is the only post I’ve written for the entire year. But I had to mark her twentieth birthday.

A year ago today, Leah was getting ready to head to a five-month adventure in France. After leaving high school in 2010 at the beginning of her sophomore year, she was finally ready to return to academia and had started the process of applying to colleges. At that time we didn’t have any idea that she’d soon be realizing her dream of living in New York. Leah got accepted at NYU and is now home on break from her first semester there (where she just received straight As — forgive me, Leah, for finally completing my transformation into my father who spends his life telling people about his children’s “accomplishments”). I visited Leah at NYU last month and had a fantastic five days hanging out with her in HER environment for the first time ever and meeting her new friends and talking about all the things that make her tick as she approaches adulthood. 

I’ll try not to go overboard here, but I’ll just say what an honor and a thrill it has been for the past 20 years to be able to watch Leah grow and mature into the amazing, caring, unique person she is today. Oh, who am I kidding — not go overboard? That’s just not in my DNA. I had to make a little video to mark this day. Music has always been a huge part of Leah’s life. While she decided to stop performing several years ago, her love of theater still abounds and I know she’ll always be connected to this world. I love watching Leah singing her guts out, even though she may kill me for posting this sampling of a few of her musical moments from the past two decades.

  

Leah, thank you for being such great daughter, sister, and human being. I could not be more excited about the next 20 years. When you turned 16 four years ago today, you asked me, with a tremor of fear in your voice, if I’d now spend the entire year warbling the largely offensive song that I’d been singing in your ear since (literally) the day you were born. My answer then was, “Sorry...but YES.” In the end, I don't think I sang it nearly enough during that year, but who said I had to stop? 

You wait, little girl, on an empty stage
For fate to turn the light on
Your life, little girl, is an empty page
That men (women, and other self-identified genders) will want to write on

You are sixteen going on seventeen
Baby, it's time to think
Better beware, be canny and careful
Baby, you're on the brink!

I love you, Leah!

Nineteen

Time is like a freight train — you can’t stop it no matter how much you may want to. My daughter Leah turns 19 today. How is that possible? I first marked her birthday on this blog when she entered the double digits in 2004. Gulp! I love seeing the photos I used to celebrate her birthday over the past nine years. It’s not that I really want to stop time, I just get very teary when I look at old photos and remember when Leah was a little girl. I could write a 2,000-word essay on each of the ten photographs above and talk about those different stages of Leah’s life. But instead I’ll just say that I could not admire the woman Leah has become more than I do and I can’t wait to see what the next year will bring.

After leaving high school early years ago, Leah is now applying to colleges for next fall. She’s had so many amazing experiences during these school-less years but her intrinsic love of learning has never left her. When she prepared for the SAT and ACT tests earlier this year she rediscovered her love of math. I have walked into her room many times late at night and found her on some math website doing problems just for fun, long after the tests were over. Oy, I’m starting to sound like my Dad and his endless kvelling about his children’s accomplishments, God love him.

Leah leaves in a few weeks for Sancerre, France, for a language immersion course and she plans to spend several months in France after that. She’ll probably keep traveling until the point where she leaves for college so who knows how much longer we’ll have the luxury of having her home with us. Waaaaaah!!

Nineteen years ago at this very moment, Leah’s mom and I were sitting in the El Capitan Theater watching the movie version of “The Lion King.” It could not be more perfect that Leah was practically born in that movie palace on Hollywood Boulevard. She’ll be down the street at the Pantages in a few days seeing the musical theater version of “The Lion King” and she played Rafiki in a production of that play a few years ago which made it Charlie's very first musical as well. Leah and I have gone back to the El Capitan countless times over the years, including a multi-year stint of early Saturday morning screenings of classic Disney films. The picture taken on her 13th birthday above is in front of the El Capitan where we had just seen “Enchanted.”

Leah, I love you so much. You are the best daughter, sister, stepdaughter, granddaughter, niece, cousin, and friend that anyone could ever hope for and I’m so honored, thrilled, and humbled to be your dad. I look forward to the many years ahead except I can’t think about that for too long since I’m just as neurotic about the future as I am about the past. Solution? LIVE IN THE MOMENT and be grateful for the wonderful times that we share. Happy 19th Birthday!

The Judy Miller Show: Episode 79

Today would have been my mother’s 79th birthday. She died less than two weeks after her 65th. I remember celebrating with her on that day in 1999—she was in hospice care at my sister’s house—and how awful it was that we all knew it was her last birthday. Such celebrations seem like they're largely about the past and the future and it’s just weird when you know for a fact that there is no future—at least on this plane. I do believe that I’ll “see” my mom again, and that when I do it’ll seem like not much time has passed. But down here, the 14 years that have come and gone since she died seem like an eternity. I channel my grief into great sadness that she never got to watch Leah and my nephew Spencer grow up and that she never even got to see Charlie or my nephew Sammy. Charlie is so lucky to have my dad and Kendall’s mom, Betsy, both grandparents extraordinaire, but, oh my God, how he and my mother would have loved each other. She would have eaten him up with a spoon and I can imagine updating her constantly about his every move.

This weekend we had a visit from someone I used to work who was in town with her mother who was attending her 60th college reunion. We were having dinner with them when Charlie took off his glasses and said he wanted to go “nuzzle” this woman, Audrey. It was so sweet and it tore my heart out to think of him “nuzzling” with my mom. I know if she were alive she’d be visiting us often in Los Angeles and would not be able to keep her hands off of him. And while we have a few photos of Leah and my mom together, with their identical shades of gorgeous red hair, she mostly remembers her from those photos—she was the age Charlie is now when my mother died. Sigh.

Charlie’s 4th birthday was the weekend before last and I can’t believe that I didn’t mark the occasion with a blog post, it’s the first time that I’ve ignored that day on here. My selfish reason is that I was completely wrapped up in the TCM Classic Film Festival that was going on that weekend in Hollywood. I watched more than 12 hours of movies a day that weekend, chatting it up with people like Max von Sydow, Eva Marie Saint, and Jane Withers. Oh, I took some time out Saturday to be with the birthday boy and watch him blow out the candles on the amazing garbage truck cake that Leah made for him but the truth is that this year I was sort of relieved to be distracted with another event. I know that sounds horrible, and I’m thrilled that Charlie had a great time on his birthday, which is and should be a very happy day in our family, but, between you and me, I’m not sure Kendall or I will ever be able to forget the horrific trauma we went through that day four years ago when Charlie and his brother Oliver were born at only 24 weeks. They came into this world via an emergency caesarean at about 9:30 am that day and Oliver died about 12 hours later at 9:30 pm.

Trust me, there’s no need for any lectures on “living in the moment” and appreciating the abundant joys of my life because I do, I really, really do, and I “accept” (whatever that means) the deaths of Oliver, who we never got to know, and my mother, who we wish so badly we had for longer. But there are times when the grief over their absence pinches just a little bit more than usual and I admit that part of me was grateful to be otherwise engaged. I’m about to head to the airport for a quick work trip to Las Vegas and find that I’m also glad to be busy with activities today, too. But, of course, I’ll always think of my mom on May 10th and forever. We love you, mom! 

 

The Eyes Have It

Here’s Charlie the day he got his new Warby Parker glasses earlier this month. I thought it would be a nightmare to get him to keep them on but he hasn’t complained once. Leah got glasses at exactly the same age. Kendall started wearing glasses at 13 but I’ve never had them…until now. I finally had to deal with the fact that I was squinting more than ever sitting in front of my computer all day and Charlie’s opthamologist wrote me a prescription. Why is it easy for me to accept that my three-year-old children need glasses but I'm in denial about my 53-year-old self? Is it vanity? Refusal to accept the aging process?

Charlie’s current eye doctor is the same woman who first saw him in the NICU when he was a few months old. He was born so early that his eyelids were still fused shut—one of the things that freaked me out more than anything. When I first realized that was the case I imagined some ghoulish procedure where they'd have to go at his face with a razor blade but no, that's not how it works. His eyes miraculously opened at about the time they would have if he'd still been in the womb, it was incredible.

Not that we’d get a good look at his eyes for quite some time after that—he had to wear a mask for a while to shield his under-developed retinas. We were dealing with so many possible terrors back then that I barely remember having the energy to panic about his eyes but I do recall that I was scared shitless the first time this opthamologist was called in. Especially since the nurses put the fear of God into us about how horrific the screening process was, saying that we should leave the NICU when she came because it was just too horrible to watch. They told us she had to pry his eyes open with some hideous spider-like device in his eye sockets and if we knew what was good for us we'd make ourselves scarce. Eh. We didn’t leave and after everything we’d already seen, it wasn’t so bad at all. I don't even remember Charlie minding it so much.

Premature babies are at serious risk for something called ROP—Retinopathy of Prematurity. Babies born at less than three pounds and less than 31 weeks are at the greatest risk. Charlie was born at 1 pound at 24 weeks. There are five stages of ROP, with the most severe ones usually meaning loss of vision or total blindness. When Charlie was finally big enough to be screened, we still couldn’t really tell if he could see us. I believed that he could, but that didn’t stop me from doing jarring “tests” every time I got the chance like Helen Keller’s panicked mother did at the beginning of “The Miracle Worker”—clapping and snapping my fingers in his face. Oh wait, Mrs. Keller was probably testing her baby's hearing with those movements. Oops. Except at that point we didn't know if Charlie could hear either. Ah, the memories! So when Charlie’s doctor put the spider-device into his eyes, we had no idea what to expect. Wonder of wonders, miracle of miracles, Charlie’s eyes were just fine, despite all the odds against him. Which is to say, let’s not be too concerned about the light prescription he’s wearing now—who gives a fuck? Besides, if I thought Charlie was a chick magnet before, just try walking around Farmers Market with him wearing his new glasses! (Just kidding, Kendall—is it MY fault that every woman within a six-mile radius falls in love with him on sight?)

I also vow to stop stupidly bemoaning my own need for reading glasses. My father, thanks to a particularly bad case of macular degeneration, has been blind for the past 12 years and that is no fun at all. I so admire his ability to cope and still lead a relatively normal life in his condition, he’s really amazing. He even joined the Board of Directors of the Chicago Lighthouse, a fantastic organization that helps the blind and visually impaired and was written up in the Chicago Tribune.

So let’s hear it for Charlie’s new glasses…and my own! Here we are, reading one of Charlie’s favorite books, “Harry the Dirty Dog” by Gene Zion, for the first time with better sight:

 

 

Chuck and Chuck

 

Throughout Charlie’s time in the hospital, I kept thinking about his triumphant return to Hollywood Boulevard for our Sunday morning Ouija Board-like game in which he picks a star on the Walk of Fame. It became the image I held of Charlie getting out of the hospital and being well again. He was too weak to go last weekend when we were home but we happily made our way to Hollywood this morning. As if in response to my diss of the NRA in yesterday’s post, Charlie made a beeline for Mr. “From My Cold Dead Hands” himself, Charlton Heston!

Despite some political differences, I do admire a lot of Heston’s work—“Ben-Hur,” “Touch of Evil,” “El Cid,” “Planet of the Apes,” “Soylent Green.” I even organize my Passover seder around Heston’s performance as Moses in Cecil B. De Mille’s “The Ten Commandments.” As I was snapping the above photo, two LAPD officers walked by and stopped to watch Charlie posing on the star. “You know,” one of them said, “if he’s on Charlton Heston, he’d look a lot better holding a Glock!” He had his hand on his pistol and he paused for so long as I was laughing that I started to think that he really was planning to hand his Glock 17 over to my three-year-old! At this point, Charlie also started laughing hysterically and I think the cop may have thought we were both a little nuts. In retrospect, I wish I had asked the two officers to pose on the star with Charlie, damn it, I’m sure they would’ve been happy to do so, they couldn’t have been friendlier. And as I think about it, they must have been convinced that I was some kind of fanatical gun advocate, why else would I be snapping photos of my toddler on Charlton Heston’s star?

It was the perfect re-introduction to our Sunday ritual and made me feel like Charlie’s latest health scare was really and truly over (spit three times). Thank you, Chuck! Who knew he’d have such an impact on my family five years after his death? I can’t think of any previous connections to the actor, other than my obsession with "The Ten Commandments" and the fact that it was his sister, Lila Heston, who handed me my diploma during my graduation from Northwestern. 

And to cap off our successful outing, here are a few random shots of Charlie’s previous picks from the Walk of Fame:

Note that after Charlie leaned down in an uncharacteristic way and touched Celeste Holm's star last July (third from the top, above), the first thing I heard on the radio when we got back into the car about an hour later was a report that the actress had died. I'm telling you, Charlie chooses these people for a reason! 

No More Stitches!

Here’s Charlie enjoying an after-doctor’s visit frappuccino (coffee-free, of course!). We went to his neurosurgeon this week to get the stitches removed from his head and although they insisted it wouldn’t be painful, poor Charlie was not pleased to have one of the neuro-dudes who was constantly poking at him in the hospital coming at his skull with a sharp pair of scissors. Oy. He screamed bloody murder for a bit but was all smiles for Dr. Danielpour, the surgeon who’s seen Charlie’s brain up close and personal eight times in the last four years. After a quick examination, the doctor said that everything looked great and then he uttered those five beautiful words that we always long to hear in his office: “See you in a year!” So much sweeter than those heart-stopping five words we’ve heard on several occasions: “I’m admitting Charlie right away.” As you can see, Charlie is now wearing his Cedars-Sinai Department of Neurology-issued knit cap to keep his wounds covered until they are completely healed. I think it’s pretty hip—he almost looks like he could be grinding Kenyan coffee beans at the Silver Lake Intelligentsia.

Charlie still can’t bathe until next week so it will be a full month in which he has not had a proper washing. Is he turning French or something? JUST KIDDING, you all know what a Francophile I am, right? Hey, my daughter is half-French! I’d have to go all the way back to traveling on the metro during the year I went to school in Paris in the late 1970s to add any credence to that offensive stereotype. And, anyway, the French are probably much healthier for not scrubbing themselves as neurotically as we Americans tend to do. 

Here we are this morning at one of our downtown haunts. Those low-angle iPhone selfies make me look more like Jabba the Hutt than I usually do, but I love seeing us out and about together. And Charlie's recuperation continues—beginning yesterday, his walking has dramatically improved, I’m happy to report, and he can walk unassisted for nice long stretches.

It's hard not to think of the other kids Charlie shared the PICU with. Some of them were not in good shape at all and I wonder how they're doing. I feel so, so grateful about where we're at now despite some scary times a few weeks ago. And, starting when we were in the hospital, I find that I'm thinking a lot about not only kids (and their families) who have chronic health problems, but also children and parents who have to go through the worst possible nightmares because of random accidents or worse. I found myself thinking of the parents of the Sandy Hook kids even more when we were at Cedars than I did last December when that unspeakable tragedy occurred. It's one thing to have to deal with the terrors of having a sick child because of various issues with their bodies that you have no control over, but I simply cannot imagine, thank God, what it must be like to watch your perfectly healthy child gunned down out of the blue for no reason whatsoever. And then to have to listen to the resulting bullshit arguments against saner gun control laws in this country, I honestly don't know how those parents can endure it. (Note: If you're an NRA supporter and you want to remind me that better gun control laws wouldn't have stopped the Sandy Hook tragedy, please don't bother, that's not the point I was trying to make.)

Crazy that I've written more in this blog in the past three weeks than I did in all of 2012. I'm very glad I had a place to record those events and I may just continue writing in here even if the absence of such a crisis (yay!) leaves me with far less to report. I guess instead of being self-conscious about recording my thoughts when I don’t have that much to say, I’m thinking of Holocaust survivor Gerda Weissmann Klein’s Oscar speech. To paraphrase, I find that after our recent experience, I’m quite grateful for “the magic of a boring blog post!”

Until then, here’s Charlie’s salute to this week’s World Read Aloud Day which was created several years ago by my friends Pam and Jim Allyn and their amazing organization LitWorld:

 

Cream of Wheat Is So Good to Eat

I can see why doctors often roll their eyes whenever their patients, or, even worse, the parents of their patients start looking at medical sites on the Internet. When Charlie first started showing symptoms of what we later learned was a large pseudocyst caused by his malfunctioning VP shunt, I naturally turned to Google to diagnose him. When you have a child with a ventriculoperitoneal shunt, that’s always the first thing you think about, whether they have a headache, are throwing up, or even sneeze. But when I looked up “shunt malfunction,” he didn’t have a single symptom. Kendall and I were hugely relieved. So what was it? We had an appointment with Charlie’s pediatrician but that didn’t mean I couldn’t figure it out on my own. And voilà! For whatever reason, I became convinced that I had found the answer—Charlie had Celiac Disease! When I look at a list of those symptoms now I don’t even know what I was thinking but at the time I was positive I’d found the problem. I didn’t want to alarm Kendall until the doctor confirmed my expert diagnosis but I was already looking up websites and recipes to start planning for our gluten-free lives.

With all due respect, admiration, and apologies to the many people who suffer from this disease or other forms of gluten intolerance and who I’m sure enjoy perfectly delicious (and much healthier) diets, I admit that one of the thoughts I had when Charlie’s neurosurgeon first told us what was really going on was, “Oh,THANK GOD, we don’t have to go gluten-free!” It’s a thought that now makes me laugh AND go crimson with shame. Was I really saying I’d rather my child go through brain surgery and two weeks in intensive care than give up bread, pasta, and donuts? Oy. I only mention it now because I realized today that while it wasn’t a conscious decision, I’ve been going a little overboard on the gluten since we returned home from the hospital six days ago!

The photo above shows Charlie enjoying the Cream of Wheat I made for him this morning. Mmmm. Do you have to grow up with Cream of Wheat to love it as an adult? Kendall can’t stand the stuff which always shocks me since there are few things I find more comforting or delicious. 

Cream of Wheat is so good to eat  
Yes we have it every day!  
It makes us strong so we sing this song  
And it makes us shout “Hooray!” 

Charlie and I have been known to drive all the way to Glendora (about 45 minutes away) just to get the Stuffed Cream of Wheat Pancakes at a place called Flappy Jack’s on the old Route 66. It’s a pretty outrageous dish but it's heaven on earth. Oh, stop worrying—apart from all the gluten-based products I’ve been showcasing on this blog since we returned home, Charlie also gets plenty of fresh vegetables and fruit and other foods—he’s a great eater and his diet is pretty balanced.

Well, except for Sunday when we made this fantastic homemade apple pancake for breakfast. And Charlie made the batter. I love that Charlie loves to cook as much as his big sister. At three and a half his whisking skills rival Jacques Pepin’s!

Leah and I used to cook a lot when she was very young, too, so I take partial credit today that she's turning into a master chef. Her new thing is making homemade pasta and she's also recently made homemade black-and-white cookies, hamantaschen, and Girl Scout Samoas. Gluten, gluten, gluten! Does our whole family need to join a 12-step group? Following the apple pancake decadence, Charlie, Leah, and I went to Farmers Market where he ate a big portion of Leah’s turkey-brie-avocado crèpe. Yikes, someone call DCFS! I love this photo of Leah and Charlie making faces together while they were eating the crepe. Leah is really the best big sister in the world and Charlie understandably idolizes her. And I have to hand it to Leah for her grace in dealing with the disproportionate amount of attention that is bestowed on Charlie by the world at large, even in non-crisis times! At 18, I’m sure she doesn’t want the kind of attention he gets, much less me discussing her every move on this blog, but she still has such a wonderful attitude about it. I always thought I’d have children much closer in age but there are some very cool aspects to having kids who are separated by 14 years. I can’t wait to see how their relationship develops and I know the time will come (soon enough) when the disparity in years seems to disappear, as it did for both my mom and Kendall’s mom (who, bizarrely, BOTH have brothers who are 14 years younger!).

Charlie is pretty much back to his happy, normal self but physically he’s still recuperating, mostly as a result of being in bed for two weeks—he’s still having trouble walking. We’re jumping through the hoops right now to get some extra physical therapy and my reactions range from total acceptance and patience to anxiety and panic depending entirely on where I'm at on the mood swing scale that’s been very active since we left Cedars. But for those of you who are worried about my recent mention of a late-night Ativan delivery, know that out of the three pills my friend gave me last week, I still have two left. I don’t think I’ll need to visit Betty Ford’s any time soon. Still, I can tell that I’m going through a healing process myself by my wildly different responses to the same events. Remember that first trip back to Farmers Market the other day when I waxed poetic about all the strangers who seemed to care so much about Charlie by the way they looked at the bandages on his head? The exact same thing happened when we were there this morning and my reaction was more along the lines of, “WHAT ARE YOU LOOKING AT, MOTHERFUCKER?” Yes, I’m deranged, but at least I’m evolved enough to know that that this reaction was about ME and not anything that other people were doing! Someone at Cedars told me that Charlie’s recuperation would probably take about one and a half times the amount of time that he was in the hospital. I think the same may apply to me.

 

Small Pleasures (2.0)

This morning Charlie and I went to the Bread Lounge, a really cool cafe in downtown L.A. that makes the most amazing breads and pastries and serves some of the best coffee in town. What we love most about the place is that there’s a gigantic window from the seating area into the bakery so we can watch the bread bakers at work—just like at DuPar’s but the ambiance at the Bread Lounge is decidedly different—more of the downtown hipster crowd but not the insufferable Silver Lake Intelligentsia kind (um…no offense—I love going to that place, too!).

As Charlie sat on my lap eating a delicious ricotta danish with chocolate and cranberries, I sipped my perfect latte and we both watched the talented young bakers making biscotti in the massive kitchen. The calming effect of this simple moment on the stored-up adrenaline levels in my brain was palpable. Charlie started making a sculpture out of the crumbs of our danish and I couldn’t help but think how simple life’s true pleasures really are, despite the crazy machinations we put ourselves through about what we think we “need” to be happy. Being me, I was incapable of having that thought without starting to sing right then and there—and not so softly—the opening verse of “It’s a Fine Life” from the musical “Oliver.” In Nancy’s full-on cockney accent, no less:

Small pleasures, small pleasures 
Who would deny us these? 
Gin toddies—large measures 
No skimping if you please! 
I rough it, I love it 
Life is a game of chance. 
I’ll never tire of it 
Leading this merry dance…

Charlie is too young to be embarrassed by me yet and I didn’t even pay attention to the stares from the other patrons. I still had the feeling that I described yesterday at Farmers Market where it seemed like we were living in a musical and that everyone at the Bread Lounge, from the young skinny supermodel couple picking up a large box of pastries to the three women in expensive running outfits and shoes drinking double espressos to the young Asian family eating granola and fruit to the freshly scrubbed white t-shirted employees and Israeli owner who was carrying his six-month-old baby in his arms were about to join me in song and launch into a perfectly choreographed dance number.

Am I losing it? Quite possibly. I got a better feel for the healing process my shattered nerves are still going through at our next stop, a Lowe’s Home Improvement store near our house. As Charlie and I walked through the parking lot, a woman was screaming at her husband with intense viciousness. “DON’T YOU EVER LISTEN TO ANYTHING I SAY?!” Apparently he was supposed to meet her at a specific location but wasn’t there and she had just found him dawdling in front of the store. It’s never pleasant hearing strangers screaming at each other but this woman’s twisted face and negative energy hit me like an opposing magnetic field. I scooped Charlie up and made a wide arc around the fighting couple to try and steer clear of whatever ugliness was emanating from them, I just couldn’t be around it. Another symptom of post-traumatic stress?

Charlie spent the rest of the day playing with his fleet of garbage trucks. He’s getting stronger every day but we've noticed that he’s exhibiting a few behavioral changes since his last surgery. Not stuff that we’re all that worried about but I did find myself looking up post-VP shunt surgery stories on the Internet—against my better judgment! Charlie has been stuttering quite a bit since last Monday which I’ve read is quite normal for kids his age, especially boys, and especially after going through a stressful episode. It almost always goes away by itself. He also seems to be way more sensitive to sound and temperature. Until he was in the hospital, Charlie never seemed to mind our barking dogs or ever say he was too hot or cold and now he’s complaining of those things. I’m sure it’s all unrelated to his surgery but what the hell, we’ll mention it to his neurosurgeon who we’re seeing next Thursday. Ugh, I don’t want to become one of those parents who sits with my iPhone in hand googling everything my child says or does to see if there’s something to be concerned about.

I suddenly had a memory of using this title in a blog post so I just looked it up and found this entry from August 11, 2009. Ironically, Charlie was going in for his first VP shunt surgery the very next day, now that he had finally reached the 6 lbs. goal:

…despite the challenging and largely unknown journey that still lies ahead, I can’t help but be giddy with excitement at every step forward Charlie takes. We can really see his personality now and it’s such a sweet one. He seems to have a way of interacting with people that I know will serve him well in his life regardless of any other disabilities he may have…This whole experience has been radically changing my perspectives on achievement, intelligence, and success.

Wow. Thank you, NICU dad from 2009 who just reached forward in time to give comfort to post-PICU dad in 2013! I thought that would only go the other way around!

If you don’t mind having to do without things  
It’s a fine life!  
And though it ain’t all jolly ol’ pleasure outings  
It’s a fine life!  
When you’ve got someone to love  
You forget your cares and strife.  
Let the prudes look down on us  
Let the wide world frown on us  
IT'S A FINE, FINE LIFE!

Return to Farmers Market

Charlie and I had our first post-hospital outing this morning—to our favorite place in L.A., the Farmers Market at Third and Fairfax. We started with yummy French Toast at DuPar’s (Charlie’s choice) and then went outside to watch his friends the bakers in the big picture window that opens up into the restaurant’s kitchen. We’ve spent hours watching the two young bakers, a Hispanic man and woman, make DuPar’s fabulous pies, brownies, donuts, bear claws, and other pastries. Charlie is fascinated and could literally stand there all day watching every step of the process.

This photo was taken a few weeks before Charlie went into the hospital when the expert bakers were putting the final touches on a large number of pies before carrying them into the giant walk-in oven. The bakers and some of the other cooks there know Charlie very well and seem to enjoy his utter delight in their every move. They always smile and wave to him even though we’ve only ever seen them behind the glass. The reaction of the bakers this morning when they saw Charlie's bandages on his head caught me so off guard that it made me tear up. As they were rolling out pie crust and cutting apples I could see their initial delight in seeing Charlie for the first time in several weeks (we usually hang out at that window at least three times a week). Their eyes suddenly widened when they saw his bandages, their smiles frozen in place, and then they both looked at me and then back at him with such compassion and concern that it tore me up. I wanted to break through the glass and tell them what happened, to assure them that Charlie is going to be okay.

The same thing happened when we visited one of Charlie’s other regular stops, Magee’s House of Nuts which has been in the same location for over 60 years. There’s a great photo above this vintage peanut butter grinder of President Eisenhower on a visit to Magee’s and gazing at the newfangled machine. Marta, or “the peanut butter lady,” as Charlie often calls her, asked me what happened and I told her the story. She then gave Charlie not one, not two, but three heaping sample spoons of their freshly made peanut butter which he devoured with abandon.

On normal days we would never visit Bob’s Donuts on the same day we had DuPar’s French Toast (I do have some limits!), but since today was special and Charlie wanted to go to Bob’s (the best donuts in L.A.), we sidled up to the counter and experienced the same reaction of compassion from the “donut ladies” who, I have to admit, also know us quite well. Charlie tore through a rainbow sprinkles donut and I noticed concerned looks from the other morning regulars that we see nearly every day but rarely speak to, from the old ladies that are always there with their shopping carts to director Paul Mazursky and his table of writers and actors. Yes, it does take a village, and my village happens to be Farmers Market, an L.A. landmark that opened in July 1934. Who knew?

As Charlie was polishing off his donut, a young Russian family sat down at the table next to us. They carried trays from Moishe’s, the Middle Eastern stand and they had two little boys who were both wearing Superman capes, one silver and one red. The younger boy, who looked about half Charlie’s age and was wearing the red cape, starting running all over the place. Perhaps as part of his superhero fantasy, the tiny kid zoomed at top speed across the area where we were sitting and kept jumping up in the air as high as he could, landing so hard on the cement ground that I worried he might have seriously injured himself. The first few times he did this I stood up in my chair to make sure he was all right, waiting for the tears to start, but he just got up smiling, would run back to his oblivious parents, and then do it again and again. There’s no way Charlie would ever fall flat on his face like that on hard cement and get up smiling. Was this kid superhuman?

Then I started thinking that even before his two bedridden weeks, Charlie could never run as fast as this kid who was so much younger than him. It’s not like I ever forget about Charlie’s physical delays caused by the same intraventricular hemorrhages that led to him needing the VP shunt that was just replaced, but I’m with him all the time, and it sometimes take the contrast of other kids to make me realize the extent of his differences. When Charlie has friends over at our house and I see them bounding up our very steep staircase, not holding on to anyone’s hand or even the banister, it makes me feel sad for Charlie that he still can’t do those things. Not that he seems to mind, and he'll get there eventually, despite his current setback.

Every year we have to get Charlie evaluated at the Regional Center here in Los Angeles because of the physical therapy he still receives, and last time they said he was in the 99th percentile in his cognitive abilities and the 50th percentile physically. “Oh, you mean like every member of my family?” I joked, thinking of the smart but klutzy genes he’s inherited. But for some reason watching this tiny Russian kid careen around Farmers Market like a whirling dervish, it brought it home in a new way.

Still, walking through the market with Charlie and seeing how beloved he is by so many strangers whose heart he’s touched in some way, I felt like we were in an MGM movie where everybody was about to break into song and lift him high in the air. Charlie may or may not ever win a marathon, but he’s got a quality that is far more valuable than Olympic gold. 

Afterglow/Afterburn

In the made-for-TV version of traumatic life experiences, the characters in the final scene are frozen in idyllic bliss and a perfect and permanent resolution to the crisis at hand. Cue the swell of uplifting music over the closing credits. Real life is never that pat since human emotions are way more complex than anything we can see in a two-hour story arc. I hesitate to write about how difficult a day I had yesterday AFTER we got home from the hospital because it goes against the image of my “blog character” who seems to have endless reserves of strength, an awareness of the bigger picture, and the ability to find humor in even the most difficult situations. But, fuck it, I’ve always been very moved and grateful when I’ve heard from people in similar situations who found my NICU posts from 2009 because they were frantically googling key words of their child’s condition (as I've spent so much time doing) looking for other people going through their own specific brand of terror and said they found some comfort in following along with our story—especially Charlie’s amazing success after receiving such dire prognoses.

It WAS amazing to be able to come home from the hospital yesterday, but I wonder if others in that situation have gone through some of the delayed angst that I experienced the rest of the day. I feel a lot better today so I’m not sure that I should or even CAN describe the awful feelings that I was experiencing for much of the day and night or the intense self-judgment I was leveling at myself for daring to be anything but joyful. It felt like now that we were finally home, 15 days of adrenaline was crashing into my fragile, sleep-deprived system and any emotional strength I thought I had while in the hospital was gone. Charlie was happy to be back but also very weak after two weeks in bed and frustrated that he couldn’t do what he wanted to do, what he was used to doing. Sometimes when he gets frustrated he starts hitting himself and he kept trying to slap the tender, healing wounds in his head which naturally scared the crap out of us. Kendall, who hadn’t slept in our bed once since Charlie went into the hospital, crashed at around 3:30 for the rest of the day and Charlie followed suit at around 4:30. Unable to get the rest I also desperately needed, my mind kept replaying movie-like montages of all the worst moments of the past few weeks (with some flashbacks of Charlie’s months in the NICU for added color) and I was filled with angst and terror and found that every sound, from our dogs’ barking to the music playing in the apartments across the street to car horns and even dribbling basketballs filled me with rage and panic.

As happy as I was to be home, part of me missed the comfort of Charlie being attached to all those machines that were expertly monitoring every system in his small body (I can only imagine how those machines would have been beeping yesterday if they had been attached to MY systems!). I missed the team of professionals who were caring for my son every second of the day and I had moments of wondering whether we could do it on our own given his various challenges. It’s a weird thing to try to talk about because whenever you have a child in the hospital your constant goal is to get them the hell out of there, but I have to say there’s a certain camaraderie with the people in such environments that I really “enjoy,” if that’s the right word to use.

Yesterday morning, as we were getting ready to leave, they kept sending new people into our room who would inevitably ask us the same questions about Charlie’s history and situation. There was one sweet, inquisitive medical student who seemed insanely young and made me feel like I had wandered onto an episode of “Grey’s Anatomy” except that I felt like one of the residents who was training HER as I explained all the facets of Charlie’s birth, what happened during his first five months in the NICU, and the specifics of his two new operations.

Charlie’s records from his first days at Cedars will always follow him whenever we’re there, including the fact that he was initially known as “Baby Boy 2.” At one point one of the nurses on the floor who was reviewing his chart, said quite cheerfully, “So where’s his twin brother?” Charlie was sitting right there, about to have his IV removed for the last time, and said “What’s she talking about?” It’s not that we’re hiding the existence of Charlie’s twin Oliver who died 12 hours after their birth at 24 weeks gestation, but he’s far too young to really get it and that was hardly the time or place to get into it. “He died,” I said quietly and firmly, feeling more sorry for the nurse who asked the question than for us. We’re used to that kind of thing at this point, it happens all the time, but now that we were on the regular pediatrics floor which butts up against the NICU, I couldn’t help but flash back to those moments that occurred about 10 yards away when we held Oliver in our arms as he died, lifting him out of his isolette for the first and last time to show him his brother who was still fighting for his own life in the adjacent isolette. Oy.

Honestly, I think it’s too soon for me to fully process all the reasons why I was feeling so scared, depressed, and jumpy yesterday, and I probably shouldn’t even be writing about it, but it did get to the point where I asked a friend to drive over late at night with some Ativan she had offered me weeks earlier. I had never done that before but it definitely helped to smooth the edges of my rising anxiety.

And I feel much, much calmer today and truly thrilled on every level to be home and away from the double-edged comforts of medical equipment! Charlie still has a ways to go to regain his strength but he’s the most resilient person I’ve ever known. We had such fun this morning making breakfast together, going around the neighborhood in his little red car, pulling weeds from our lawn, and getting back to our fun adventures. Tomorrow we may even return to Farmers Market to watch his friends the bakers make some pies! 

HOME!

After two brain surgeries, 4 ultrasounds, 3 CT scans, a series of x-rays, and endless IVs and needle sticks over the past 15 days at the Cedars-Sinai Pediatric Intensive Care Unit, Charlie is finally HOME. Whatever your belief system or thoughts about a Higher Power, you have to concede that the human body is an amazing, awe-inspiring regenerative miracle. When I think of where Charlie was at just 48 hours ago, tethered to a bank of medical equipment and monitors, so weak and in pain after major surgery on his little brain and body, it’s almost hard to reconcile that picture with the one of the little boy who waltzed out of Cedars-Sinai early this afternoon and was plopped back into the car seat he last saw on February 12. He took his first steps in two weeks this morning at the hospital and we’ll need to continue with some extra physical therapy until he’s back up to where he was in terms of strength and balance, but overall he’s in incredible shape considering everything he just went through. I know I’ve said this many times, but I’m beyond grateful for the brilliant minds that created and administer the medical science that has enabled Charlie to live a normal life despite the catastrophic circumstances of his birth. As happy as I am to leave Cedars, and as much as I hope to never spend any extended time there again, I feel such love and gratitude for all the people there who cared for Charlie with such expertise and kindness during these past few weeks.

I can already see Charlie becoming stronger by the second even though it will probably take a few weeks to fully get back up to speed. Will we ever have to deal with his new shunt malfunctioning? There’s no way to know that, of course, there are so many factors at play, but just as we have since he was born, we’ll deal with it if we have to.

And now we all begin to resume our regular lives. I look forward to getting back to work—and also taking care of myself again. Is it possible to gain 30 lbs. in two weeks? Sigh. I realized several days in that the tendency in times of extreme stress to shovel comfort foods in your mouth couldn’t go on much longer, but I was never quite able to focus as I should have on what was best for me. Don’t they tell you to put on your own oxygen mask first for a reason? Oh well, here’s to a spring dedicated to health all around.

This resurrected blog was a lifeline for my own sanity and I so appreciated every expression of concern that people stated here, on Facebook, and elsewhere. The world may be going to hell, but as far as I'm concerned, people are really great. As he grows up, I will always share with Charlie how people all over the planet were rooting for him in so many ways since the day he was born. It takes a village, right? You are all hereby invited to stop by and play garbage trucks with Charlie any time you’re in the neighborhood!

What Goes Up Must Come Down (and Vice Versa)

Here’s a photo of Charlie’s reverse mohawk, courtesy of his longtime brain surgeon. Have you noticed I'm including less pictures of Charlie lately? He's suddenly grown weary of me shoving my iPhone in his face and I don't want to push it. What? You mean you'd also have an issue if you were in the hospital for two weeks recovering from major surgery and YOUR father kept trying to snap photos of you? Selfish, selfish, selfish!

Today was another big transition day. I've noticed during these past weeks that Charlie’s desire, ability, and level of enthusiasm in singing the Blood, Sweat & Tears song “Spinning Wheel” has become the barometer against which I measure his overall health, mood, and brain activity! “What goes up, must come down, spinning wheel, got to go round!” Those words, when spontaneously sung by him, have the most deliciously calming effect on my soul.

Yesterday’s procedure went very well but I was unprepared for the kind of recovery I guess I should have expected from brain and abdominal surgery. He bounced back within a few hours from his first surgery two weeks ago to remove the malfunctioning shunt but that didn’t involve cutting through muscle and tissue. Throughout the day yesterday he was so miserable and unresponsive that I began to worry that perhaps the new shunt wasn’t working properly. They scheduled us for another midnight CT scan which always seems a bit ominous and he had a really difficult night. I finally climbed into his hospital bed at around 2 am and he grabbed tightly to my hand, even in his sleep, moaning in pain every time he woke up.

One of the worst moments of this entire hospital stay happened at about 7 am this morning when two nurses came into the room and told me that the neuro residents had been looking at Charlie’s CT scan “all night” and weren’t sure it was in the right position. They told me not to give Charlie any food or water in case we had to go back to surgery but that they wouldn’t know for sure what was going on until the neurosurgeon arrived at the hospital and checked the scans. My nerves, which were already as raw and bloodied as freshly ground meat immediately plummeted to despair and panic. Another surgery? Take out the shunt that they just put in yesterday? That was the final straw—my mind went to all sorts of places that I’ve been working so hard to keep it from going to while we’re in one-day-at-a-time survival mode. Could his tortured body take another surgery so soon when it was still reeling from the shock of the day before? Would they have to wait another two weeks to put a new shunt back in? What if they could never make the shunt work? And on and on and on. Charlie was awake and staring blankly, occasionally crying out if I tried to release my hand from his grip and Kendall was still sleeping on the cot next to the bed, so I just sat there frozen in utter fear and panic. I stared into the hall for about half an hour, and felt like I was about two minutes away from bursting out of our room and screaming like a lunatic, “DOES ANYONE FUCKING KNOW WHEN DR. DANIELPOUR IS GETTING HERE?” when at that very moment I saw him enter the PICU. After watching his face (which to me seemed grim) at the computer outside of our room reviewing Charlie's chart, he walked in, took one look at me and said, “What’s wrong?” I told him and he said, “What? Who told you that? The shunt is perfect!” Roller coaster leaving the station! I was so incredibly relieved that I burst into tears. Oy. I don't blame the nurses for what happened—they HAD to tell me that to make sure I didn't give Charlie any food. I realize this kind of thing happens in hospitals all the time. But...fuck!

As if dutifully obeying the good doctor’s positive pronouncements, Charlie immediately began to show marked signs of improvement. An hour later I got my first smile and an hour after that he was in my lap in the arm chair. When the nurse came in a few minutes later Charlie launched into the tune that did more to assuage my jittery mood than a bushel of Ativan ever could have: “What goes uuuup…must come dooooown. Spinnin' wheeeel, got to go round…” complete with his patented hand gestures. YES!! I know I JUST posted the video of Charlie singing this song towards the beginning of our hospital stay, but in honor of this milestone, I have to include it again here—I could watch it all day!

  

Charlie’s still not eating that much, is still on pain meds, and hasn’t tried walking yet after two weeks in bed, but at 5 tonight we transferred out of the intensive care unit and onto the regular pediatric floor and have every reason to believe we’ll be blowing this popsicle stand some time tomorrow. To anyone who’s still reading these posts, thank you for caring about Charlie and taking such an interest in our family. We’ve had such an outpouring of love from family, friends, and even complete strangers.

I was so touched when the nurse came in this morning with a big stack of packages for Charlie. Way back in 2001, when I was on staff at Heinemann, I worked with a wonderful author named Helen Frost (also a children’s book author and poet) on a book for teachers called “When I Whisper, Nobody Listens: Helping Young People Write About Difficult Issues” (ironically, the book was released the week of the 9/11 attacks). Helen and I rediscovered each other on Facebook a while ago and hearing about Charlie’s plight she asked a bunch of her children’s author friends to sign copies of their books for Charlie and mail them directly to Cedars. Above is a display of the fabulous books written by Helen, Nathan Clement, Janet Wong, and Joyce Sidman. Helen tells me there are more coming, too.

Thanks to everyone who has been following Charlie’s story for the past two weeks of ups and downs. I can’t even express the gratitude we feel for all of the positive energy being hurled in our direction.

Internal Affairs

Woop-de-doo, Charlie’s VP shunt was re-internalized today and he is no longer tethered to a device that is collecting his cerebrospinal fluid. I wonder if my layperson's attempts at medical descriptions ever make people woozy. I’m so used to this stuff now that I've lost all perspective! I still laugh every time I think of that time last week when a neuro resident spilled some brain fluid on Charlie when he was getting it for the infectious diseases folks and instead of freaking out Charlie giggled loudly and said, “He shpritzed me!” The only time that I felt a little dizzy was when we were downstairs for the emergency midnight CT scan the other night and the bandage on his head came off and I saw the large stitches running across his scalp for the first time. 

The surgery happened earlier than we thought and, according to the doctors, went really well. No complications replacing the shunt and they found a good place near Charlie’s liver for the catheter to deposit the cerebrospinal fluid. It’s been about eight hours since the surgery and unfortunately Charlie is still in a fair amount of pain and on his third dose of morphine. He’s answered some questions from us and the nurses which is reassuring but no matter how normal such post-op discomfort is, it’s still agonizing to see your child in pain, especially after everything he's been through over the past two weeks. There’s a lot of concern about brain activity after this kind of surgery so you can’t just let them sleep it off, you have to make sure they’re okay by waking them up periodically and seeing how they react. We’ll stay by his side through the night and hope that he feels better by morning. The photo above was taken shortly after he came back to the PICU. The little mark on his forehead was where Dr. Danielpour wrote “Yes” with a magic marker to make sure they cut into the right side of his head!

This morning, which now seems like a million years ago, was difficult for Charlie because he was NPO and was begging for food. We promised him he could eat anything he wanted after the surgery but now the doctor has put him on a clear liquid diet until he gets another CT scan at around midnight tonight to see how the shunt is working and how his ventricles look. I was worried about that but eating seems like the last thing he’s interested in at the moment. The surgeon said he was able to remove some “adhesions” from Charlie’s brain while he was in there. Not sure what that means exactly but I’ll find out. After we leave the hospital, we’ll have to see Dr. Danielpour again in around 10 days for him to take out the stitches. It’s amazing what Charlie has been through since he was born (this was his tenth major surgery in less than four years) and a miracle that for most of his life, other than the first five months and the last two weeks, he’s had such a completely normal existence. Better than normal!

Kendall and Charlie are both sleeping right now and I wish I could but I doubt I'll get a wink. I know I'll have a completely different perspective as soon as Charlie begins to seem like his old self. I'm waiting patiently for that first smile! Please keep those prayers and good thoughts coming just a bit longer!

Bring on the Scalpel!

Here's Charlie while we were watching the Oscars tonight just before he got a painful blood draw. Which makes me think of one of my all-time favorite movie lines, said by Doris Day in “Please Don’t Eat the Daisies”—“IS THERE A DIFFERENCE?” I’m not saying that watching the Academy Awards was as agonizing as what poor Charlie had to endure in preparation for tomorrow’s surgery but…at times it seemed almost as uncomfortable. It was hardly an ideal viewing situation, I admit, and I did laugh at a bunch of Seth McFarlane’s jokes, but man, some of them were just awful. The most offensive one for me was the joke about Lincoln—that despite Daniel Day-Lewis’s brilliant performance, there was another actor who succeeded in getting even more into Lincoln's head—John Wilkes Booth. Eww. Maybe it’s because I was sitting in an intensive care unit, but no matter how many years have passed, I don’t see anything funny in fatal gunshots to the head—there were probably several such victims coming into Cedars tonight alone. Yuck. I also hated the tired and offensive joke about Penelope Cruz and Salma Hayek and the one at Adele’s expense. But again, my attentions were really elsewhere tonight, despite the fact that we kept Charlie up late to watch the entire show and I regaled every nurse who walked in with my steady stream of snark about the broadcast.

I guess most parents would be terrified about their child’s imminent brain surgery, and it’s not like I’m not aware of the risks, but I am beyond thrilled that Charlie is going to get his new VP shunt tomorrow and we can finally say good-bye to that external drain that has forced him to stay unmoving in bed for the past 12 days! Yippee! He’s NPO (no food or drink) as of midnight tonight and his surgery won’t happen until noon tomorrow so the morning hours should be interesting since he usually wakes up ravenous in the PICU. But he’s very excited that after the surgery he’ll be able to move about without everyone freaking out and “re-leveling” him—they actually use a huge leveler like you’d find on a construction site to make sure his head is level with the device hanging to his right that is carefully collecting his cerebrospinal fluid. 

I practically held my breath every time a doctor came near us today. There was a new doctor doing rounds this morning and I heard him talking about an infection Charlie had which made me dart into the hall in a panic to talk to him but it turned out he was just referring to that stupid staphylococcus that Charlie’s surgeon had already confirmed was caused by an outside contaminant. Then the weekend neuro team came in and said they they just wanted to have one more look at him before tomorrow’s surgery and I wanted to kiss every of them despite their true-to-form comment that “he looks more awake” now (at 9 am) than he did earlier (at 7 am when he was sound asleep and I basically shooed them out of the room). Yes, neuro-dudes, it’s funny how people look more awake WHEN THEY ARE AWAKE! 

This will be the eighth time that the two brilliant surgeons, Drs. Danielpour and Frykman, will be operating on Charlie’s brain and abdomen—for different reasons. It will be his third ventriculo-peritoneal shunt but before that Dr. Danielpour put in a reservoir that stayed in his head for several months from which they had to manually extract cerebrospinal fluid several times a day with a huge needle. That was fun, let me tell you. Charlie couldn’t get a shunt until I think he was at least 6 lbs. and that took quite a while. Dr. Frykman also operated on Charlie’s necrotizing enterocolitis when he was barely over a pound. He had to cut out part of Charlie’s intestines and the poor kid had a colostomy bag for about three months which was a constant nightmare for the nurses because he was so little and it was hard to deal with. It was even Dr. Frykman who performed Charlie’s circumcision a few months later, on my birthday, September 4, 2009, a week before he was released from the NICU. Kendall was a little traumatized by the circumcision but I remember how we laughed because afterwards we went out to dinner together for the first time in months to celebrate my birthday—to a restaurant called CUT at the Beverly Wilshire. Ha ha! (And if there any “anti-circ” extremists who find this post because they spend their days Googling any mentions of circumcision and want to write a negative comment, please restrain yourself. If you don't, I will gather every foreskin in this hospital and FedEx it to you!)

Although he freaked out a few times this morning out of frustration, Charlie ended up being much calmer today than yesterday, thank God, and seemed to be in good spirits especially when we told him what he’d be able to do after surgery. We’ll have to go back to the PICU for another day and then probably to the regular pediatric floor for a bit until they’re sure everything’s okay with the shunt but if all goes well I’m hoping we might be home by mid-week. YES, I know various things could happen that could prevent that, and we’ll deal with them if they do, but I’m choosing to be positive, as strange as that sometimes is for me! If you have any prayers and good thoughts left, please send them our way tomorrow afternoon for a safe and successful surgery. Thank you all so much for your support and love, I can't tell you what it means to us!

To close, here’s my sweet, brave boy in January when he was playing with an actual Oscar that was won by our friend’s husband 45 years ago. If he ever wins one on his own, Charlie can tell the story about how he watched the 2013 Academy Awards from intensive care as he was getting his blood drawn!

A demain!

Patience, Don't Fail Me Now!

The original Cedars of Lebanon Hospital opened in 1930 in the cool building pictured above on Fountain Avenue (now garishly painted blue and one of the main headquarters for Scientology). It was one of two Jewish hospitals in Los Angeles, the other being the Mount Sinai Home for the Incurables which was founded to treat people during the Great Influenza Epidemic of 1918. The two hospitals merged in 1961 and, with the help of the Max Factor Family Foundation (and others), the complex where I’m currently sitting opened in 1976. Construction has never stopped—Cedars has been spreading its tendrils in the neighborhood for the past 35 years. The building where we’ve been for the past 12 days, the Saperstein Critical Care Tower, opened in 2006 but didn’t house the PICU when we were here in 2009. It’s a beautiful state-of-the-art building and I’m grateful for every Hollywood dollar that was funneled into the place. Among the many buildings on the Cedars-Sinai campus are the Burns and Allen Research Institute and the Steven Spielberg Pediatric Research Center where we’ve gone for all of Charlie’s NICU follow-ups.

It’s fun (for me) to be in a hospital with so many movie connections—the founders, the funders, the movie greats who’ve had stays on these floors and, of course, those who spent their final moments here including Frank Sinatra, Lucille Ball, Elizabeth Taylor, Johnny Carson, Don Knotts, Gilda Radner, Andy Kaufman, Ernest Borgnine, and, since we arrived here almost two weeks ago, Lakers owner Jerry Buss. (You can always tell when a celebrity is in residence by the network news trucks that are camped out front.)

Okay, I’m rambling. Charlie just fell asleep and it was a pretty difficult day, but I feel guilty for even thinking that because the challenges had nothing to do with his medical condition. We’re still on for the surgery on Monday and his CSF cultures are still negative, thank God, but I think the cumulative effect of not being able to get out of bed for so long is finally getting to him (and us!). He lost it a bunch of times today and who can blame him—it’s beyond remarkable how cooperative Charlie is most of the time with everything that’s happening. He has devices connected to every limb and a huge tube coming out of his brain that keeps falling in front of his face no matter how many gauze hats or taping set-ups are attempted and we jump out of our skin every time he so much as reaches upwards with his hand because it would be very bad news if he yanked that EVD out of his head. Oy. After a blissful day yesterday my nerves seem shot again today. Is this the pattern I’ve been following—a simple good, bad, good, bad? That means tomorrow should be smooth sailing which would be great since it’s (please God) the last full day with that device coming out of his head. I dream of that post-op moment on Monday when Charlie can move his head however he wants, sit up in bed, and begin to get back to normal even though he’ll probably still be connected to machines for a few more days.

Am I allowed to kvetch on what I feel I should be calling a good day because it was free of physical trauma? I think I still have a little PTSD from the other night because every time Charlie starts to lose it (which would be completely understandable for ANYONE in his situation), I notice that I’m worrying about what’s going on in his brain—is something off-kilter with his intracranial pressure or the amount of cerebrospinal fluid he’s producing? Breathe.

I’m watching Charlie (finally) sleep right now as “The Harder They Fall” plays on TCM—Humphrey Bogart’s last film. He already had esophageal cancer when he made the movie and died shortly afterwards. I wonder if it was at Cedars of Lebanon. The morning started with “Bye Bye Birdie” which Charlie enjoyed (especially Ann-Margret—he’s no fool!) but the only other film I can even remember from today in my jittery state is “Guess Who’s Coming to Dinner” which is one of my favorites (speaking of actors who were already sick and died right after filming—in that case, Spencer Tracy). Not that Charlie pays too much attention to our silent TCM films (occasionally a musical number will come on that will make me crank up the sound!)—he’s too busy watching his ENDLESS garbage truck videos. I worry a little about weaning him off those when we get home. He never watched TV or videos until this hospital stay and I’m very grateful for that diversion but with the amount of screen time he’s had for the past 12 days, he may need to enter the toddler division of the Betty Ford Clinic.

I may go downstairs and see if the Purim megillah reading is still happening in the chapel in the Swifty Lazar lobby. I want to see a few wheelchair-bound patients in funny costumes, is that wrong? I’ve been going home after Charlie goes to bed (except for our recent Hell Night) and coming back at dawn but Kendall has slept here every night since we got here. Her razor-sharp focus on Charlie is amazing and one of the endless things that makes her such a fantastic mom. Not that I’m not paying attention to him, but my personality-type tends to go for, shall we day, a wider focus. During that miserable night I was on every medical person like white on rice trying to get more information and answers while Kendall never budged from Charlie’s side. And in calmer times, I’m the one who ends up knowing all of the interpersonal dynamics of the PICU. 

I can’t even believe that the Oscars are tomorrow. Today would have been the day that I dragged Charlie to Hollywood & Highland to watch them setting up and I would have been snarking about the awards and my predictions for the past two weeks. This year I just can’t get into it—but don’t worry, I’ll be back!

For now, I just want the next few days to go smoothly and for us to get the hell out of here, as much as I’m grateful for everything that’s being done for Charlie and that we’re in such a world-class hospital. I realize that two weeks is not very long—hell, it sure beats the five months we were here in 2009—but on some days it seems like an eternity. Oh well, here’s to a Sunday that is full of grace, serenity, and embarrassing Oscar speeches!

Hitting the Wall

This is a photo of Charlie from this morning—Day 11 at the Cedars-Sinai PICU. Hope I didn’t scare anyone yesterday by not posting but we were having the obligatory Night from Hell that seems to be a part of any PICU visit (and a much more frequent occurrence in the NICU). I’m operating purely on fumes (from the ubiquitous Cedars-Sinai macaroni and cheese?) and won’t go into all the gruesome details of what happened last night but I’ll say that as of this morning, Charlie has returned to his cheery, smiling, normal self and now we’re just in a waiting game for the shunt surgery that is scheduled for Monday (God-willing—oh, and BITE ME, Evil Eye!).

Even when Charlie was doing well yesterday I was in a foul, irritable mood for some reason. I think the combination of sleep deprivation, worry, and occasional bouts of terror eventually takes it toll. The day was mostly uneventful except when the doctor came to remove the draining tube from Charlie’s abdomen and then gave him several sutures while he was wide awake. That was awful but he got over it fast enough—with the help of a donut as big as his face!

Throughout our visit, they’ve been doing these tests with Charlie’s external ventricular drain to make sure that he still needs the shunt. It would be fantastic, of course, to find out that he no longer needed it, but both tests last week were quite stressful and were deemed a failure. Fine. He’s had the shunt for three and a half years with no incidents, he can have it for many more years. But for some reason, they decided to try that experiment again yesterday where they clamp off his EVD and monitor the pressure in his brain. Following a day of that, he went down for a nap at 4 (which he’s rarely done here) and then woke up at 6 like a completely different person. This is where I’ll skip all the details but let’s just say the next seven hours were the closest I hope I’ll ever come to turning into Shirley MacLaine in “Terms of Endearment.” And while I don’t think I’m an hysteric in these situations—AT ALL—I guess I did make several references to “The Exorcist” over the course of the night, first when Charlie’s ICP (intracranial pressure) numbers went through the roof and he jerked up suddenly out of a deep sleep and vomited what seemed like buckets of Linda Blair-like goop, and then when his increased ICP made him wrench out of bed in pain, again from a sound sleep, and almost seem (to my adrenaline-soaked brain) like he was levitating off the bed. Hey, at least his head didn't rotate 360 degrees. But unlike his normal self, he was inconsolable and just plain bizarre. The neuro resident on call came and woke him up (which took some doing from his sound sleep, God love him) and peppered him with questions that he eventually answered which was very reassuring but he was still acting erratically and after a second vomiting episode, they undid the clamp and we were sent for an emergency midnight CT scan. It’s always a little ghoulish getting procedures done late at night around here because you know they would never schedule those normally and that there’s some scary shit going on with everyone you see. But by then the unclamped EVD seemed to do the trick and by the time we were headed back to the PICU at about 1 am Charlie had returned to his normal, inquisitive self, thank God. The neuro resident finally came back around 4 am with the CT scan results. So Charlie DOES need the shunt, obviously, which is fine by me, and there will be no more tests.  

Before any of that happened and I was already feeling so yucky, I was wondering if I tend to be more “together” in the throes of a real crisis than I am during the down time where things are going well and we’re just waiting for the next step. I think that IS sometimes true and I’m not sure why. Is it because in those truly terrifying moments I HAVE to hold it together but in the down time I have the luxury to let all my negative stuff and fears come to the surface? On the other hand, I was hardly an Ascended Master during those hellish hours last night—I was pacing the room as furiously as a 1950s movie husband waiting for his wife’s delivery and I was cornering every medical professional and asking questions that I knew the answers to but telling them what I needed them to say to reassure me. Is there anything scarier than seeing your child go through all this stuff? And that’s said with the total knowledge that overall he’s doing fantastically well and that everything’s going to be fine. I do have residual feelings of guilt that I’m overdramatizing stuff which I guess is sorta dumb since there’s not a parent on the planet who wouldn’t have been terrified in that situation. I even had those feelings when we were in the NICU which was really ridiculous considering Charlie weighed a pound and we were facing endless traumatic scenarios.

Charlie got to get out of bed for the first time in 10 days yesterday which was great. He couldn’t walk or anything, they just let him sit in Kendall’s lap and then re-leveled his EVD. But now, after everything that happened, he’s back in bed for the duration, which is fine since we’re still scheduled for Monday (cross fingers, spit three dozen times). Infectious Diseases just came in a second ago with the good news that nothing so far has grown on the cultures of the voluminous fluid that was drained out of his peritoneal cavity the other day. Great news which could change, but won’t, right? (I’ve got to figure out my tortured relationship with that damned Evil Eye once and for all!)

Through everything, Turner Classic Movies flickers on our elevated flat-screen. During the worst of Charlie’s episode last night, the tortuous “A Place in the Sun” was on with tragic Montgomery Clift accidentally (or WAS it?) offing his fiancé, frumpy Shelley Winters so that he could be with stunningly beautiful Elizabeth Taylor. That movie gives me a major mood swing every time I see it so it couldn’t have been more appropriate for the late-night freak show. And now, with Kendall still sleeping and Charlie napping peacefully, “You Can’t Take It With You” is on—Frank Capra’s wonderful screwball comedy with Jimmy Stewart, Jean Arthur, and so many great people, and THAT could not be more appropriate for the wildly different and much more fun place we’re at today! After his late-night CT scan (never easy for him), Charlie fell back asleep and woke up at 5:30 completely back to normal, ravenously hungry (always comforting for a Jewish parent!), and wanting to see his garbage truck videos. I was too wired to fall asleep all night with all that was happening but hey…at least I finally got to watch that final episode of “Downtown Abbey.” I’ll avoid any spoilers but just say about the very end, “Fuck! Really, Julian Fellowes?” 

But I take the fact that I’m back to obsessing about TV shows and movies as very good news for my mental state. I was supposed to liveblog the Oscars again on Sunday night for MSN but decided, with great regret and sadness, that I better not risk it with my nerves ranging between those of a meth addict and Christian Slater losing a shitload of weight for a movie role.

It really helps me to write in this blog during this experience but I can’t help but be struck by the me, me, me, obsessive navel-gazing that is certainly not the case (most of the time) in my movie-writing over the past two years. Oh well, what else can I possibly write about on here but MY experience? I'm not forcing anyone to read it! Thanks to everyone for your wishes, prayers, and good thoughts about Charlie!