Charlie Dances with Gene Kelly and Cyd Charisse

Charlie just fell asleep in this position (above right) and I was stunned at how closely it resembled a photo from his days here in the NICU (above left). I keep running into people from those days in the halls and it’s like seeing old friends. And I’m remembering things about those five months that I thought I’d completely forgotten. Even going into the various public bathrooms at Cedars-Sinai immediately makes me think of what was going on when I last entered that space three and a half years ago!

We’re on Day 5 in the Pediatric Intensive Care Unit and it’s incredible how Charlie is staying in bed this whole time without too many complaints or attempts to get up. I honestly think that with all his experience in this hospital he just gets that this is what he has to do to get better, even though he clearly doesn’t like it. For the most part he was in a great mood today but the day started out with such a bizarre experience that I laugh every time I think about it. It was about seven in the morning and Charlie was in a deep sleep. A group of young neuro-residents came in, walked up to Charlie’s bed, and all but slapped him awake because they had to do a few tests. He woke up completely startled and naturally started crying. The head neuro guy immediately turned to me and said, “I’m concerned about your son’s behavior. I was in here yesterday and he seemed much happier.” I all but laughed in their faces. How would they respond if a group of white-coated men came into their bedroom and suddenly jostled them out of a sound sleep? “Come back in a few minutes,” I said, “and I promise you he’ll be happy again!” Which he was.

Believe me, I’m in awe of our neurosurgeon and his team—their expertise has saved Charlie’s life on numerous occasions, and I understand that they have to look for behaviorial signs to make sure that Charlie’s external shunt is working properly. But…let’s just say they tend to be a rather literal bunch! Luckily, we had our silent Turner Classic Movies going on the TV and on the screen at that moment was our wonderful friend Betty Garrett in “On the Town” singing with Frank Sinatra. I honestly believe that Betty was really looking down on Charlie and soothing him because he immediately calmed down when he saw her. During the five months we spent at the NICU after Charlie was born, the only time Kendall and I went out to an event together was for Betty Garrett’s 90th birthday celebration (she died at 91 two years ago this week). Here’s the post I wrote that night, the first one in months that wasn’t exclusively about our NICU experience.

I’m not sure why TCM was showing so many Gene Kelly movies today (it’s not his birthday), but Charlie loved them. He sang along with the “I’ve Got Rhythm” number in “An American in Paris” when Kelly entertains the cute French children (I need to get him one of those adorable 1950 French shorts with suspenders!) and was transfixed during most of “Singin’ in the Rain,” especially when he laid eyes on gorgeous Cyd Charisse in the “Broadway Melody” sequence. I caught that moment on video, including Charlie’s attempts to follow Gene and Cyd’s dance moves:

 

Still no infection showing up in Charlie’s cerebrospinal fluid which our neuro guys are still extracting from his head every day. When one of them did it this afternoon, he got some of the fluid on Charlie at which point Charlie laughed and said, “You just shpritzed me!” Where the heck did he ever learn the word “shpritz?”

It was Saturday so the Shabbos elevators at Cedars were stopping on every floor and I witnessed a post-services Kiddush in the Irving “Swifty” Lazar Lobby where I saw a guy in jeans and a t-shirt saying to one of the young Chasidic guys who had been leading the service, “Thanks so much—you guys are AWESOME!” It’s not that the majority of patients or staff at Cedars are Jewish but it’s a Jewish hospital, which I have to admit I like, so there are mezuzahs on every single room and wrapped up kosher food in a refrigerated case in the cafeteria next to the bacon omelets.

It’s very intense to be in a hospital all day long watching your child hooked up to so many different devices. Today I found myself contemplating the notion of “surrender” for the first time during this stint at Cedars, and I remembered what I wrote about it during our time in the NICU:

Driving to the hospital this morning, I thought of the word “surrender.” What can we do when we’re in situations like this but surrender and admit that we do NOT have control over the final outcome and to trust that Charlie’s journey and ours will be what they’re supposed to be in the end. Whenever I come to that conclusion I feel instant relief from my desperate desire to control everything which, of course, I can’t, but then I usually get tangled up in the web of that idea and get all confused. Surrender does not mean standing by passively and doing nothing—or liking what’s happening. I am actively talking to Charlie, working through my own fears, asking questions of doctors and nurses, and educating myself where appropriate (which does not mean googling every scary term I hear in passing). I rarely achieve the positive aspects of this kind of surrender, but it does flicker in from time to time and I’m always grateful for it.

Shabbat Shalom, everybody! 

Comments

[Robin]

Loved this post! Made my laugh out loud , and tear up a bit! I am so happy to hear no infection is showing up! Your little man sure is being a trooper! He seems in such great spirits! I could not believe that neurosurgeons
could lack common since! Oy!

[Neil]

How lucky is Charlie -- he has his family, Chassids, Betty Garrett, and Irving “Swifty” Lazar all looking out for him!

[susie specter]

Good for charlie giving those docs what for! How dare they interrupt a sleeping babe? sending happy sunday wishes to you all!

[Pam G]

I had Charlie added to the prayers at St. Andrew's Episcopal Church in Pittsburgh's Highland Park District last week on Ash Wednesday. The nearly 140-year-old church run by two friends of mine is located right around the corner from the home Gene Kelly lived in when he was Charlie's age. Kelly, who was Catholic, did not attend this church but surely walked by it often. The high school he graduated from is just down the street as well. I like to think of Kelly walking the same streets as I do now whenever I'm up that way for one of their church arts events (mostly music or poety). Everyone there is thinking of Charlie this week and asked me to keep them posted. Everyone in Gene Kelly's old neighborhood!

[Shari]

I'm glad you're documenting Charlie learning all the important things in life - Yiddish terminology and the names of Gene Kelly and Cyd Charisse.

Loving the daily updates.

[Mandy]

Ah to dance like Cyd...actually, no, to just have her legs, yes, THAT would be enough for me!
This post resonated with me deeply Danny. I truly DO believe Betty was there- why ever not? Remind me to tell you a story about a personal experience with such things at a later time.

Also, up until about 3 years ago, I never wanted a tattoo... what on earth could possibly be important or "cool" enough to stamp on my body forever? I just couldn't think of anything except maybe my husband's name, which people tell me is tempting fate and I don't want to do that! Months after Fauna was born, I knew that if I ever got a tattoo, it would be a symbol of or the word, "surrender". It's what our children teach us (if we are willing to listen!) one way or another. The sweetness of letting go of control and trusting that fate will have its way and in the meantime, pray that it will be kind. But really, that release just feels sooo good- it grounds you, molds you, transforms you into a better person and better parent.
There are and have been so many people loving, praying, and setting good intention for your family. We love you deeply and think of you constantly...it's so very kind of you to indulge us by allowing a peek into your days and the clips of our sweet little Charlie on this blog. Thank you.