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:
Dear Charlie,
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,
Jane
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:
Danny,
I'm not able to play the video, but I know the song and can imagine the video is wonderful. Your friend Jane is an amazing writer. All I can add is, "Yeah--what she said."
Love,
Julie
Posted by: Julie R. | June 03, 2009 at 03:42 PM
I think every one of your blog readers also has tears after reading Jane's wonderful and warm words. I know I do...
Hopefully the infection will pass swiftly and in the meantime, Charlie will gain weight and strength to undergo the necessary surgery.
We're here for you, Danny & Kendall and family...although I think many of us wish we could be there with you in person to help support you guys in every way possible -- from sharing warm hugs to doing the grocery shopping to changing the linens and washing the kitchen floor.
Posted by: Pearl | June 03, 2009 at 03:57 PM
WOW! how can Charlie not make it w/ his cool rock n roll uncle Jeff singing to him????? rock on charlie- we all freakin love you little dude!!!!!!
Posted by: susie specter | June 03, 2009 at 05:55 PM
Dear Charlie,
Listen to Jane! She said it all (along with Uncle Jeff's great song).
Love,
Marilyn
Posted by: Marilyn Molnar | June 03, 2009 at 06:13 PM
That was beautiful, Jane. But I am going to say what Danny is too afraid of saying -- Charlie will never be too much like John Wayne or Charlton Heston. He is a Democrat!
Posted by: Neil | June 03, 2009 at 06:17 PM
Never forget the body wants to heal. It is fighting to heal itself. Life is not fragile. It is impermanent but not fragile. Charlie's spirit along with all the love and hopes and dreams coming to him from all of us creates a powerful force along with that of the body itself. Charlie will not only survive this, he will grow as a person because of it. He will make a difference in the future even as he is making a difference in the present. I sense it just looking at him. He will not only survive but thrive. He has a force.
Posted by: Scott Sheperd | June 03, 2009 at 06:25 PM
I'm a long time reader of your blog, though I rarely comment. Just wanted to let you know I'm pulling for Charlie, too--and that Jane's beautiful words made me weep.
Posted by: patry francis | June 03, 2009 at 06:28 PM
I am speechless. At what Jane has written, and the courage that it takes to be standing strong for Charlie. You will all be in my prayers from this day forward. Good things will come.
Posted by: Dana Austin | June 03, 2009 at 07:15 PM
checking daily to see how things are going and to let you know, I'm rooting for you guys.
Posted by: gorillabuns | June 03, 2009 at 07:23 PM
As I said on FB, it's an honor to write to Charlie...and a blessing to know that he is here and fighting, even if he is extending this particular scene a bit too long.
That is such a perfect song for you & him, Danny. Watching Charlie's hands reaching out for your touch in the video made me cry. And is it the video, or are his hands that big? They are the hands of a fighter, for sure!
Posted by: Jane | June 03, 2009 at 08:05 PM
I couldn't help but think after reading Ms.Devin's note that there's no need for a callback to God's arms - he/she/whatever is reaching out right there with those words and with all the love that's apparent in people's posts.
Posted by: K Wild | June 03, 2009 at 09:05 PM
I will just send Charlie a white light every day... looking forward to hearing he's past his surgery and moving on to the day he comes home!!!
Posted by: Kitty | June 03, 2009 at 09:15 PM
Hi Danny
I have met many babies and children with grade 1-4 IVH who did quite well with reservoirs (and eventually shunts). I hope he feels better soon so that the surgery can proceed safely. In the meantime, I am sure the ventricular taps will do the job.
Best, Dr Judy
Posted by: Dr. Judy | June 03, 2009 at 11:08 PM
You know, Danny, while we can appreciate the benefit of Broadway musicals I can't help but suspect that for a young hip guy like Charlie, you may be doing the right thing moving to rock and roll. I'll be hearing that song and thinking of you all.
Margie
Posted by: Margie | June 04, 2009 at 12:12 AM
From a former Skokie dweller now living in Los Angeles, I just had to finally write, even though I've been reading your blog now for the last two weeks. My heart and prayers go out to you and your family, and most of all to Charlie. May G-d bless him with strength and good health, and may he someday live out every one of the hopes and dreams you have for him. Clearly that little guy is so very loved, and so much positive energy and prayers are being sent his way.
I am so sorry for all you and your wife Kendall have been going through and for the loss of your beloved son Oliver.
May Charlie grow and thrive and bring you and Kendall so much joy, love and laughter. What your friend Jane Devin wrote is so beautiful, and I echo her wishes for Charlie. You guys will remain in my prayers, and I look forward with hope to reading about Charlie's silly antics as he grows from infant into toddler and little boy.
~Elise
Posted by: Elise | June 04, 2009 at 12:45 AM
That was a beautiful comment from Jane. Thanks for sharing and take continued care.
Posted by: Pam G | June 04, 2009 at 04:42 AM
Danny, we've all got our fingers crossed and are thinking good thoughts for Charlie and this surgery. With all the love and support he's getting, I know he will just keep getting stronger and stronger.
Andrew, Rosalinda, Elisa, Sophia, Joseph, and Gina
Posted by: Andrew Forsythe | June 04, 2009 at 06:36 AM
Danny and Kendall,
I am without words--This is Luanna Kendall's friend--I doubt she has the time right now to check her email--Please hold her for me--I love her dearly--and am here if there is anything either of you need. Your boy is beautiful!--What a strong little man! I forwarded your blog Danny to Lynn Ianni.
Your family is on my mind and in my heart.
Luanna
Posted by: Luanna Anders | June 04, 2009 at 07:19 AM
I am de-lurking to say that I am praying for little Charlie and for you and Kendall. My son was in the PICU after he was born (due to different issues from Charlie's) but nonetheless we rode that damned rollercoaster and it sucked. I will continue praying regardless of whether Charlie is having surgery or not.
A funny note about playing music for preemies - while my son was in the PICU hooked up to every machine imaginable, including an oscillating vent, PICC lines, IV's - you name it, we played him some reggae that he had listened to in utero. My mother was bedside that day and was scandalized that we weren't playing BACH or BEETHOVEN or MOZART for the baby. For the love of all that is holy what were we THINKING?
So, to make her happy we put on a Baby Beethoven CD. Thomas immediately started to brady and de-sat. We took out the Beethoven and put the reggae back on - his heartrate and oxygen levels returned to normal. Even the nurse told my mom she wasn't allowed to play any more Beethoven for Thomas.
Posted by: Anna Marie | June 04, 2009 at 07:46 AM
Oh my gosh...what a beautiful note, what beautiful thoughts about Charley's future. It feels so wonderful when someone says out loud what you are too afraid to imagine as a possibility...Charlie's got quite a team pulling for him and so do you and Kendall -- You are all doing a great job keeping strong. It was wonderful to see you yesterday, Mackenna was so pleased to meet you, baby Charley's daddy!!
Posted by: amanda mueller | June 04, 2009 at 08:47 AM
I can only say, very ineloquently, that 14 years ago, I was on the PICU rollercoaster and the doctors were preparing us for everything from death to brain damage. I dismissed their warnings, although now that I look back on it, they were very compassionate and trying to do a very difficult job the best way they knew how.
Anyway, my response to them was: just give her to me breathing. They thought I was retarded and incapable of understanding the severity of the situation.
I didn't care about the brain damage or the shunts or the now-14 years of surgeries, procedures and therapies. I wanted my daughter alive and I wanted her home.
Charlie will come home and in middle school math, he'll use a calculator. That's why they make them. There is no real need for adding two digit numbers in his head when all he'll really want to know is how many iTunes can he download for 10 bucks. He'll figure that out, too. Just like my daughter has.
Our prayers are with you.
Posted by: Erica | June 04, 2009 at 09:47 AM
Danny, I only know you and your family through your blog, and I don't want to overstep, but please know that I check to see how all of you are doing each day even though I don't comment. You are a dear man and I pray for your baby and your whole family to pull through this and once again thrive. Charlie seems to be a pretty tough little guy, and I mean that in the best sense. Best to you all. Debbie
p.s. I love Betty Garrett too, but "On the Town" the best MGM musical ever? Really?
Posted by: DebbieW | June 04, 2009 at 11:24 AM
I've just discovered your blog recently. You are an amazing writer, and from what I read, an even more amazing dad. My thoughts are with you and your family as Charlie is in the hospital. Watching the video brought a smile to my face. Hopefully his Uncle Jeff will get to serenade him, in the flesh, soon :). Much love & peace to you and your wife as you go through this.
Posted by: Emily | June 04, 2009 at 03:17 PM
Sorry to hear about the delay, my dears...I hope Charlie gets through this infection with flying colors....I will go to YouTube to try to find this Video...
Posted by: OldOldLady Of The Hills | June 04, 2009 at 04:40 PM
I know Charlie is going to be okay. My name is Jackie and I have a baby girl who was born at 27weeks. August 2007. The doctors will give you thier knowledge but at the end of the day God has the last say. Munya is almost two and i know the feeling. Driving upto the hospital, going through those doors, washing your hands and wondering what the nurses and looking at the doctors face for anything positive. Charlie is a blessing and let me tell you, each and everyday he wants you to believe he is going to enjoy the day you take him home. Have hope for Charlie he feels you.
Posted by: Jackie Mgido | June 09, 2009 at 10:04 PM