Up the Roller Coaster with Wilco

Last week was a major challenge on all fronts, stress-filled and terrifying. But I’m thrilled to report that Charlie is doing much better this week. Maybe he’s just a big Wilco fan. His improvements coincided with a very fun visit from my family in Chicago. My sister and her kids are traveling with Jeff on the current Wilco tour. I went to three amazing shows at the beautiful Wiltern Theatre. I also attended a “Tonight Show” taping featuring Wilco and a late-night recording session with a big rock star I’m not sure I’m supposed to mention (but look closely in the video) who invited Jeff and the rest of Wilco along with my nephew Spencer to play on his latest project. After eight weeks of basically going to and from Cedars-Sinai, it was a bit of a shock to be out with massive crowds four nights in a row. Every morning I’d tell Charlie all about the night and sing him my favorite new Wilco songs. He loved them. The new CD comes out next Tuesday and it’s fantastic, if I may say so.

As always, all three shows were completely different, but each one was so great that it brought tears to my eyes to see how much joy the band’s music brings to so many people. On Monday and Tuesday it took some adjusting to suddenly be out in the world after so long. During every word of every single song, I could only think of Charles and Oliver. Jeff’s lyrics took on new meaning for me as I listened with different ears. I had moments where it was almost too much, and I’d look around at the thousands of people and feel resentful that they were all leading such normal lives and probably had passels of perfectly healthy kids at home and not a care in the world. Then I came to my senses. There were probably as many tales of struggle and challenge as there were people in the cavernous Wiltern. Two couples that I know through blogging who well understand the pain of losing a child were there. I was so glad to finally meet Heather and Mike Spohr whose beautiful daughter Madeline is missed by countless people all over the world. Heather wrote a very poignant post about the show on her blog and I talked NICU talk with the couple before the music began. Vicki Forman was also there. I've known Vicki for years but only met her in the flesh when she came to visit Charlie in the NICU shortly after his birth and insisted on organizing a website to facilitate people sending us meals a few times a week during those tough early weeks. Vicki is a brilliant writer whose book “This Lovely Life” chronicles her own experience having micro-preemies. Her daughter Ellie died after four days in the NICU. Ellie’s twin, Evan, came home to Vicki and her husband but tragically and unexpectedly died last year at the age of seven. I’m in the process of reading Vicki’s exquisite and searingly honest book now.

It was so helpful having family around this week and I also felt the warmth and compassion of the rest of the band and all of the people associated with Wilco—some of the nicest people in the world (along with the band members’ wives). As I said in a post a long time ago after touring several California cities with them, how lucky that I happened to be related to my favorite band! They are clearly one of the best live acts in the country, I’m not surprised that so many of Wilco’s fans are so loyal and even fanatical about their music. But, as always, I will refrain from trying to analyze the music except to say that it is soul-stirring in every possible way. 

On Wednesday we spent the day at “The Tonight Show” taping and had a blast. I admit I never watch late night shows these days except when Wilco is on but I do think Conan O’Brien is a thousand times better than Jay Leno. I may even start taping the show (I could never stay up that late during a normal week). Instead of the NBC lot in Burbank (yawn), Conan's new studio is located right in Universal Studios and we got to go there in between the sound check and the taping. The guys wore their super cool Nudie suits on the show and sang one of my favorite songs from the new CD, “You Never Know.”

Among Charlie’s big improvements this week was getting off the cumbersome CPAP (continuous positive airway pressure) machine and on simple nasal cannulas. Woo-hoo! This, along with his better overall condition, facilitated the return of kangaroo care. Yesterday, before the last Wilco show, I was able to do two hours of skin-to-skin contact with Charlie which was heaven on earth. I felt like he was still with me when I went to the show. It was a great night. During one of the encores, Feist came out and sang “You and I” with Jeff, their duet that’s on the new CD. Loved it and she is a great performer. I was sorry to see the tour bus pull away at 2 am (oy, these rocker hours would have killed me if they lasted another day!). I hope my family members return very soon, I miss them so much already. I also look forward to Charlie attending his first Wilco show. Wilco loves you, baby!

And now, in my role as Charlie’s official videographer, here is a compilation of the week’s fun:

Comments

[Jane]

I'm outing myself as terribly behind the music times, but I'd never heard of Wilco before your blog. But if Charlie likes them, they must be pretty good. I'll go pick up some CD's. :-) Janis Ian will probably be grateful I'm giving 1972 a rest.

Charlie looks wonderful! He must be so relieved to be rid of his mechanical hat!

[susie specter]

okay this rates as the most thrilling blog so far danny! I am in heaven! Love love love the new song on the new Cd, great to see your wilco mishpacha and most importantly Mr. charlie himself growing into what promises to be a great musical , literary and theatrical family! xoxo Susie your bellingahmster soul sister

[Danny]

No, Jane, Keep Janis Alive! I still sing her old tunes:

And those of us with ravaged faces,
Lacking in the social graces,
Desperately remained at home,
Inventing lovers on the phone.

Speaking of the 70s, I heard Jeff singing "Cat's in the Cradle" in the dressing room just before going on last night. Just sayin.

Yes, Charlie loves his new freedom! And Susie, I'd love to hear you and your daughter singing some of those new Wilco tunes!

[Adriana Bliss]

I'm so happy to read that you're all on the up side of the roller coaster. The videos are awesome and as always, Charlie brings a tear to my eye.

[maggie may]

It's wonderful you got to meet Vicki, Heather and Mike, all whose stories I'm familiar with. And so glad to hear Charlie is pulling onward.
I send my mother's love his way.

[Shannon]

I must say, The Sasquatch Festival show wasn't Wilco's fault -- the sound was horrible for every band.

I'm glad to see you're in better spirits along with Lil C.

We're heading to see Wilco at the Britt Festival. Can't wait!

[Julie R.]

Danny,
What an amazing week you all had. The video is great, and I love the soundtrack. I got a kick out of Charlie's startle reflex toward the end. The footage of you and Kendall holding Charlie is priceless.

I couldn't see the big rock star whose name you didn't mention. Can you give us initials?

Wishing you continued good times,
Julie

[Heather P.]

Still praying for precious little Charlie. He looks like he has gotten bigger.
So glad that your family was able to bring you some comfort and a distraction.

[Jennifer New]

Re the above, I had the VERY special treat of arriving in LA a few years ago to find out that my 60-something friend who'd lived in Africa for most of the 70s had tix to a political fundraiser at which Janis Ian was singing. "Who's she?" my friend asked. We sat front and center. It was soooooo gooood!

As for Wilco, I remember when I first met you, Danny, and you mumbled something about your bro-in-law being in a band. I practically had to drag it out of you, and when I screamed, you said, "Really? You've heard of them?" So cool to see this behind-the scene shots.

And Nudie is still alive and making suits? Go figure!

Wow, Charlie is going to be so so dang excited to REALLY wake up and open his eyes and get out in the world. Just think of how amazed HE'LL be by all the actiion ouside the NICU. But seriously, I'm so glad to see him doing well and to hear of the awesome, beautiful people you're meeting who are helping to care for you all. Amen for great people.

Take care!

[Dave Max Crawford]

Great post, Danny. Charlie is looking bigger! Much health and happiness is being sent your way.

[Danny]

Jennifer, the real Nudie Cohn died years ago but I believe the fab Wilco suits came from his tailor shop which is still in business.

[Gordon]

Dear Danny,

I know I sound like a grumpy old man, but I find that almost all of today's music sounds like nothing but loud noise. That's why I was so surprised at how much I loved the Wilco music that you provided !

Glad our Charlie's doing well.

BTW, who is the beautiful blonde woman at the very beginning of the video ?

[Jane]

Oh Danny....Janis was always my spiritual mother. I've worn out At Seventeen at least a few dozen times. In the Winter, Lovers Lullabye, Watercolors...and of course the ballad for teenage nerds and geeks, At Seventeen.

I would say that while I love & appreciate Janis, one of my fondest wishes for Charlie - besides continuing to grow so he can come home soon! - is that he never have to stand at the punchbowl at the school dance trying to look like he really doesn't care. I hope instead that he grows up with a million friends, happy music, and rhythm enough to dance like he owns the floor. :-)

[Jane]

p.s. I agree with Gordon. Your sister is gorgeous!

[Danny]

My sister is officially in love with Gordon and Jane...

[Nichole]

What a week! My brother had always been lukewarm about Wilco -- until I finally got him to a show earlier this year. They're definitely the world's best rock band.

[Pam G]

Thanks for the video diary of your Wilco week. Glad to hear Charlie is improved.

[amba]

"Charlie is doing much better this week." You know, Danny, I thought I could see that already in your Father's Day video. Then you were silent for several days (which always scares us, NOT that you should take that as an obligation!!) and I was going, "Hope I saw what I think I saw!!" Wonderful.

[Shari]

That video is a masterpiece! I feel like I was there. Charlie must be vibing on all the great energy generated during the week, that's why he's doing so well.

[Sarah]

1. You should be receiving some paperwork from my lawyers shortly. I'm formally asking to be adopted by the Miller/Tweedy family. Surely you guys are lacking a 35 year old woman with a worrisome Duran Duran obsession who can teach Charlie all about the wonders of Franz Kafka.
2. Please, lord, tell me that there are Nudie suits that would fit, say, a 10 day old baby boy.
3. Charlie is gorgeous, gorgeous, gorgeous. I absolutely loved that video.

xx

[Alan Spector]

Another great Charlie posting. I,unfortunately,missed the Wilco performance on Conan and I NEVER miss Conan. Good to see Sue and your entire family enjoying happy times together. Before you know it,we'll be seeing Charlie at Jeffs induction into the Rock and Roll Hall of Fame!

[Charmaine]

What are beautiful boy & video! Wishing you all anything & everything that will provide you with whatever you need at any given moment on any given day as you live in & through this. What a powerful & beautiful & essential & moving testimony. Came to this blog after a random search for "kids who blog" led our daughters to Spencer & them via Spencer to Rockhawk, who they admire/follow for his Club Penguin wizardry. Now through you we have learned of Wilco, who we're seeing tonight at the Greek. Our girlies will attempt to leave a treat/inside joke for Rockhawk somewhere in the vicinity of the stage ~ keep the eyes peeled for "Puffles" or tiny stuntpeople Wilco.

[gorillabuns]

you had me at "two hours of skin on skin contact." I'm so glad you are able to have this. So very happy for you.

[Ana]

I glad to see Charlie is rocking on. Dale con ganas mijo!!! That's it, I'm just going to have to address Charlie in Spanish he's way to cute not to use a romance language.

[Marilyn Molnar]

Hi Danny and Kendall,

I know it's "mishpucha" and they seemed to impress Charlie who is looking better by the ounce and every day, but try to slip in a little Sinatra on a CD and see how Charlie relates to something mellow; no offense to your brother-in-law who I really enjoyed, but Frank is sooo soothing.

Love,
Marilyn

[Sally]

Danny,
It is wonderful to see you and Kendall looking so happy, and Charlie looking so chubby - he is adorable! So happy to hear he is on the upswing, you can see it just by looking at him. Thank you for sharing all of it with us.

[Leightongirl]

I'm starstruck, by all of you. Charlie most of all. Sending love, as always.

[Sarah]

Aww, sweet video!! I saw some footage of the gigs on youtube and they looked amazing.
I think I would be nervous though if I was the one who was responsible for pressing those suits :)
Charlie has good taste in music!!
And the kangaroo cuddles! Love!

[V-Grrrl at Compost Studios]

So glad Charlie has rallied and that you had such a great week with your family. I know you needed that!

[churlita]

I'm so glad that Charlie is doing better and that you got some much needed family fun time.

[Patsy Regan]

I turned my sister on to your blog a few weeks ago. This one brought back many memories to her. She told me how she remembers being in the nicu and looking out the window seeing all the people and traffic go by and couldn't help thinking the same thoughts you have. Her million dollar baby just graduated from grade school. My other sister is a labor and delivery nurse and has all the other nurses hooked on your blog as well. You and your family are helping many people you never met. More people more prayers
Patsy

[Candi]

Go Charlie, go! I'm glad you were able to enjoy Wilco (the Whirlwind) while they were in town. Sound like you had some much needed family fun!

[Mariam]

Love the video montage. Thanks for sharing. I'm glad to hear that Charlie is having a better week (spit three times!).

[Mim Michelove]

I don't even know how i ended up on this site...God's will maybe. I don't understand more than the fact that you and Kendall had a beautiful baby boy and he is in the hospital struggling for his life.
I want to send my love to you, I want to bring you soup, I want to do something helpful.
Congratulations and love to you all!!!!
Mim

[elizabeth]

I'm new to your blog and looking forward to catching up -- I was told about it from two friends (Vicki and Andrea) -- your son is adorable and his fight awe-inspiring. I am so sorry to hear of Oliver's passing. Beautiful names, by the way (one of my sons is named Oliver Charles!)

Many blessings to you and your family.

[Carrie]

I'll try keep this short and sweet.

My three nieces were born prematurely and spent the first six-to-eight weeks of their life in the NICU. The video of beautiful Charlie struck such a chord with me, and flooded me with many wonderful memories (hope, heartache, but laughter, too).

This is such strange timing, as my nieces will turn 3 this Thursday; and are chatty, opinionated, loving, beautiful... (Of course I couldn't find the pic of one of them flipping the bird at a camera at two weeks of age - echoing Charlie's 'woe is me' pose.)

Thank you for sharing your stories.

[Sarah David]

Hi Danny and Kendall,

I can't believe this is the first time I'm posting on here. Charlie is so BEAUTIFUL! I am always checking to see how he is doing. You guys are in our thoughts and prayers all the time. We love you!

Sarah and Doron

[Danusia]

That is the best video EVER!! Love and miss you guys. When are you moving to Chicago and getting your old job at Wolfy's back?

[liz keyishian]

Danny--you look so at peace with that tiny Beauty on your chest. Big love to you and Kendall. Will open my i-tunes now and buy Wilco. xxxliz