No Day But Today

Our boys were born three months ago today. Crazy to think that 12 weeks have passed since that awful day. I’m still having a hard time situating April 27th in my head since it’s our son Charlie’s birthday, a day we’ll be celebrating in future years. But it’s also the day his brother Oliver died. We’ll figure it out.

For all my talk of accepting the roller coaster of life in the NICU, I have to admit that I was a little drunk from the steady progress that Charlie was making over the past few weeks. I’m struggling with this living-in-the-moment business and I don’t regret a single moment kvelling about Charlie’s advances. But I felt unprepared for the very tough weekend he just had. Can you ever really be “prepared” for health problems your kids face? Don’t worry, he’s back on the upswing again. On Saturday, after watching Charlie down a whole bottle in ten minutes (such progress from his first attempt at eating by mouth only a few days earlier!) we went to see my daughter Leah in the musical “Rent.” I guess Charlie was pissed that he wasn’t able to see his big sister blow the roof off the place in her role as Joanne, the uptight lawyer and lover of performance artist Maureen. Just as the curtain was going up at the theatre a few blocks away from Cedars, Charlie had a major brady episode that took about three minutes of intervention from the doctors to resolve.

When Kendall and I returned to the NICU between the afternoon and evening performances, Charlie was still bradying and desatting but was bringing himself back up. Kendall stayed at Cedars and called me with updates during the final show. Charlie had to first go back on nasal cannulas and then back to the CPAP device to help him along. At first they thought Charlie had an infection but eventually ruled it out and attributed the episodes to an increased amount of cerebral spinal fluid they removed from his head that day. They hadn’t tapped his reservoir the day before because they wanted to see if it would stabilize but it was just too much. By morning Charlie was already off the CPAP and doing much better. The doctor had stopped all feedings on Saturday afternoon but by Sunday they were back on and Charlie tolerated them well.  He was able to come back out of the incubator and seemed back on track. But I’m anxious for his final surgery to take place so that they won’t have to keep tapping him. Instead, the neurosurgeon will place a shunt in Charlie's head that will redirect the extra fluid to his stomach. That surgery is tentatively scheduled for a week from today.

What can I say about my beautiful daughter and her amazing performance in “Rent?” For years it’s been her dream to be in this play despite the, shall we say, rather adult content, and she was thrilled to get the part of Joanne. When I exclaimed to her that it was her first lesbian role, her response was “Well, I’m not so sure about those Kit Kat girls, Dad,” referring to her recent stint in “Cabaret.” Leah has done over 30 musicals with this theatre company. Her first part was Officer Krupke in “West Side Story” when she was all of seven years old. I know I sound like Mama Rose, but forgive me if I mention how much Leah has matured and blossomed as an actress. As I watched the play I totally believed that she was Joanne Jefferson. Her scenes with her girlfriend were so real I didn’t even squirm when Maureen sang into Leah’s eyes about being in her bed. Oy. At least Leah was playing one of the only characters in the show who has a job and not one of the junkies or strippers wearing leather and lace. Gulp. On Friday night the cast performed an allegedly “child-friendly” version of the show but I couldn’t even look at the row of kids sitting on the floor right in front of the stage during some of the more suggestive songs. Still, I think (hope?) many of the more adult themes flew over the heads of the youngest audience members.

As Neil Kramer commented on my last post, “Some people grab a Bible when confronted with the ups and downs of life, others go to...Broadway!” So true. Some of the lyrics in “Rent” hit so very close to home and I was moved to tears several times during this play, especially during the final performance when I knew Charlie was having a tough time. The song “No Day But Today” sums it all up so beautifully:

The heart may freeze or it can burn
The pain will ease if I can learn

There is no future
There is no past
Thank God this moment’s not the last.

There’s only us
There’s only this
Forget regret—or life is yours to miss.
No other road
No other way
No day but today.

There’s only now
There’s only here
Give in to love
Or live in fear
No other path
No other way
No day but today.

I was able to record a few minutes from the show to play for Charlie. He can’t wait to see his sister lay ‘em in the aisles:

When Leah woke up Sunday morning, still reeling from her "Rent" experience and the difficult themes the play broached such as loss and death, she found out that a classmate at her small school, a 17-year-old girl who was also in the theatre camp that Leah is currently attending four days a week, was murdered over the weekend. It made the front page of the Sunday L.A. Times and was not how I ever thought I'd be reading about my daughter's beloved school. This beautiful young woman's life was snuffed out in such a senseless, heinous way. She would have been a senior this fall. This morning they caught the guy who did it. He had been arrested in downtown L.A on other charges but they were able to tie him to the murder and found his fingerprints and DNA in the car where the girl's body was found on Saturday. So horrible and tragic. My heart goes out to Lily's family, there is simply nothing worse.

Comments

[siobhan]

So much sadness in the world. That poor young woman.

Leah looks wonderful - young and full of promise. Hoping Charlie has his surgery as scheduled and all goes well.

I don't comment often, but believe me, you every update is anxiously awaited over here in the UK.

[Jane]

I read the story about Lily last night. I'm so glad they caught the murderer; I haven't read about that yet, but there is no reason to her death. I can't imagine being her parents.

Leah looked so vibrant in her part. There's just something about her that shines through and rises above, and it's not just the red hair. She just has that *it* factor. (P.S. Did you tell her to pay her damn rent?)

I think of Charlie everyday, but I'll double-up on my prayers for his upcoming surgery.

[Julie R.]

Danny,
I'm sorry Charlie had such a hard day, but I'm glad he rebounded fairly quickly.

Congratulations to Leah on fulfilling one of her dreams. My niece was at the Saturday-afternoon performance.

The death of Lily B. is shocking and horrifying. I feel so bad for her parents. Sounds like she'll be a great loss to the school, also.

Love,
Julie

[Debbie Voll]

Bravo to Leah!!!

[Heather P.]

Like the other commenter, I anxiously await your Charlie updates. Please know that he is in my prayers nightly, as are you, Kendall and Leah.
G-d Bless.

[Pam G]

What a wonderful video. Leah shows such promise. How awful to hear about her school mate. Hope Charley continues on the good path. Everyone remains in our thoughts.

[V-Grrrl at Compost Studios]

A good reminder--that our emotional states and our lives aren't often either/or but and/and. Better to accept the complexities of our feelings and situations than try and cultivate monovision.

I wasn't able to access the video, but I'm so happy you were able to share Leah's achievement and that the two of share a passion for musical theater.

[Kären York]

Wow, Danny...I LOVED watching Leah in Rent! I know every word of this musical and it was SO COOL seeing her in it! She's amazing! Charlie's got a special big sister : )

[Kimberley]

Once again, a magnificent post. I second what Siobhan says - your posts are eagerly awaited.

[Shari]

Both of your children continue to amaze me. Leah is stupendous - I cried real tears this morning, watching and listening to her. What a roller coaster of emotions she must be experiencing this week. My heart goes out to her, and all of you.

[Marc and Judy Davis]

Dear Danny and Kendall:

Regarding Leah: A star is born! As for what to do when bad news hits -- The Bible, Broadway or bourbon. Sinatra used to say: "I'm for whatever gets you through the night." Hope your long night of bad news breaks with a dawn of glorious sunshine.

[Chris]

So much in this post. The roller coast ride is exhausting. You're all doing amazing. Glad Charlie is on an upswing [I hope he is as I type this three days after you posted]. We'll continue to pray.

Lovely Leah! Neat. I'm partial to red hair [have always had a "thing" for it, even as a kid] so she's a star in my book already. Talented AND stunning. She performs with maturity beyond her years. Just neat.

Tragic news about Lily. I'm sorry.

[Eileen Godfrey]

Danny,

I have read your blog for a couple of years and always enjoyed it so much- your interst in all things Broadway and Hollywood and liberal politics totally gibes with my sensibilites. I also read Kendall's book many years ago and loved it especially her writing style and the moving portraits of her family.

My prayers are with your family. I imagine someday what a wonderful gift it will be to Charlie to read your detailed chronicle of his struggles when he will hopefully be a thriving young man. He certainly has 2 wonderful parents and a special sister.

My best to you all. Eileen Godfrey

[Jane]

Hey! I got my peritoneal shunt at Cedars six years ago. The difference was like I'd been to Lourdes. Hope Charlie finds that as well.

[Marcia]

Watching, praying and sending much love and admiration to you, Kendall, Leah and Charlie. Home soon.

Marcia