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.