Well, Charlie’s surgery didn’t happen today after all. He developed some kind of infection yesterday and it’s considered too risky to perform the surgery if there’s already an infection because that ups the chances of further infections that could affect the reservoir being implanted in his head and make them have to do the surgery again. So, he has to go on antibiotics and wait a week or so. We talked to the doctors and they’re not that concerned with the delay. They measure and feel his head every day and they may have to do another manual ventricular tap if necessary which isn’t great but he’s only had two so far. Every meeting we have with the doctors is partly a relief and partly very sobering. There’s still so much they don’t/can’t know about his actual condition but they say he definitely has some brain damage. What that will exactly mean in his life (and ours) is the big, unanswerable question at this point.
Thank you all so much for your prayers today for Charlie’s surgery. Please keep ‘em coming, just expand them out to whenever that takes place! Have I sufficiently expressed my gratitude for every caring comment, note, and email I’ve received about Charlie’s and my whole family’s condition? I truly don’t have the words to say how much your thoughts, prayers, and concern means to me—every single expression helps to give me the strength to face another day. (Which isn’t to guilt trip anyone to write a comment or note if they don’t feel like it—believe me, we pick up the positive vibes in whatever form they come!) This morning I met a little girl who spent months in the Cedars NICU and is now a gorgeous two-year-old. Her mom is a friend of a friend of mine and has helped me out in innumerable ways since this began, but today was the first time I met her daughter. On her own, without prompting from mom, this little girl talks about Charlie every day and prays for him before she goes to bed.
A woman I only know through blogging, a wonderful writer named Jane Devin, wrote this beautiful note to Charlie on Facebook today when she thought he was in surgery. Of course it made me cry:
I heard through the grapevine that you're in surgery right now. I'm not sure what happened between the last bit of good news and now, but my heart fell somewhere deep in my chest and started beating like a war drum in an ancient Western. That made me think about John Wayne, which led me to think about another manly actor, Charlton Heston. . .which led me to think about Anne Baxter. . . and then of course I thought about your father, who could probably name every film and Broadway legend who ever lived, and your mother, who was born to the arts. . .
One day, they'll tell you all about it -- in fact, I'm sure they can't wait to share the thousands of stories that have enriched their lives, and infuse you with their love of all things creative -- but right now they are full of anxiety and worry. They wish they could pull strength from their own bodies and give it to you so you wouldn't have to fight so hard. They wish there was a hero in your life who could charge in on a white horse and save you from danger, or better yet, one who had direct access to one of God's miracles.
As I was imagining the pounding hooves of horses charging across the plains, and the great cracks of thunder in the sky that preceded God's words, something occurred to me. . .
Yes. . .
Of course it makes sense. . .
I see it more clearly now. . .
You are practicing for a life of adventure, drama, and somewhere down the line (you were named after Charles Nelson Reilly after all), comedy.
God himself may have decided that you needed further rehearsal, but Charlie? You have a whole lifetime ahead of you to hone your craft. Right now the callback that awaits you is a crib at home, in a wondrous Victorian setting, with a cast of characters whose love for you knows no bounds. The callback to God's arms can wait 80, 90, or 100 years. You have way too much to do here, and there are too many earthly hearts that you need to touch before you can even consider joining Oliver to entertain those in Heaven.
I am sitting in the audience, holding my breath, cheering you on, and I don't want any more intermissions, Charlie. I want the curtains lifted, the lights turned on, and I want you to hear the thunder of applause that awaits your happy ending. I want you to see your family, standing in the front, with tears of joy, not sorrow, streaming down their faces.
I want to see you smile, Charlie. I want to see your face light up with joy as you skip off the stage and jump into your parent's loving arms. That's the best possible ending for this script, and if I could write it -- if any of us could write it -- we would. Instead, we wait for you to take your cue.
Take your cue, Charlie.
All the Love & Hope in The World,
Wow. Thank you, Jane. I'm speechless. You are definitely one of Charlie’s honorary godmothers. I can’t wait for you to meet him.
I’m also excited about my nephews Spencer and Sammy meeting their new first cousin later this month. My brother-in-law Jeff (with his band Wilco) is playing three shows at the Wiltern in late June. I wish Charlie could go with us to the shows but I thought it high time, following Steve & Eydie, Doris Day, Johnny Mercer, Betty Garrett, and Eddie Cantor, that Charlie gets serenaded by his Uncle Jeff. I took this video of Charlie this morning after holding his hand for a while so you can see him reaching out for more. I thought this song, that Jeff usually dedicates to my sister, particularly appropriate: