Jew Eat Yet?

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.