Yesterday I was feeling extremely upbeat about Charlie and his latest improvements and found myself thinking, it’s happened, I’m finally there—Mr. Positive Mental Attitude. Gone forever was that Evil Eye-fearing neurotic who lived and breathed anxiety and worst-case scenarios. In his place was an Ascended Master of Living in the Moment whose calm, meditative, and always cheerful demeanor would get his son through all of the challenges that were ahead. Following this revelation, I practically skipped into the NICU where I found Kendall holding Charlie outside of his incubator. When I glanced at the monitors behind them, I saw that Charlie’s heart and respiratory rates were elevated. Within seconds my newfound positivity hit the skids. I started barraging Kendall with concerns about everything she was doing with our son, from the way she was holding him to the kisses she would occasionally plant on his cheek. Of course nothing Kendall was doing had anything to do with Charlie’s stats. My wife’s blissful moments with Charlie were suddenly subsumed by my dark cloud. Mr. Positive Mental Attitude, meet Dr. Buzzkill.
A few hours later, in a therapy session, I grappled with my own internal roller coaster and realized that my calm, positive nature can be every bit as shaky as my fear-based neuroses. The truth is that those two sides of me often exist simultaneously. I can feel very positive and hopeful about Charlie and his future and at the same time be scared out of my mind. One of my biggest life lessons is understanding that feelings are not always “either/or” but more often “and.” My goal is not to force myself to be positive all the time, but rather to stop being so surprised when the fear stuff creeps back in. And I want to develop coping mechanisms that do NOT involve tormenting my loved ones or myself with my sudden bouts of terror.
I left my therapist’s office after this intense session and walked back to my car on a side street near Robertson and Olympic. It was a pretty block, rather modest for Beverly Hills, and I noticed a small rose garden on my right. There were beautiful roses in vibrant hues, from a deep violet to a two-tone pink and white. I was lost in my thoughts, swinging my arms absent-mindedly at my side in my haste to return to my car and get back to the hospital. All of a sudden I felt a sharp jab of pain in my hand. I had swung my arm right into one of the rose bushes, deep into a labyrinth of piercing thorns. I yelped and pulled my hand from the bush, blood flowing from two wounds. Oh my God, I thought, how can I return to the NICU with blood gushing from my right hand? They’ll never let me touch my son. I had to laugh at the ridiculous dream-like symbolism of the scene. The beauty and life-affirming qualities of the delicate roses, commonly used as expressions of love, butting right up against the ever-present realities of pain, injury, and loss. Aren’t we all rose bushes, our thorny, painful interiors masked by the pretty faces we put on for the world at large? I managed to stem the flow of blood on my hand by the time I got back to Cedars and was able to hold Charlie for several hours, realizing, at least for the moment, that my anxieties and fears sometimes go hand in hand with my feelings of joy and hope and are not mutually exclusive.
I stayed at the hospital holding Charlie until midnight. As I entered the parking garage to head home, I noticed a couple who had just parked next to my car. They looked like they were in their mid-thirties and I was struck by their playful, laughing exchanges. They were busily taking a bunch of posed photos—one of the man pulling a suitcase out of their trunk, one of the very pregnant woman holding onto a post and biting her fingernails in mock fear. I sat in my car watching the couple make their way to the late-night security guard. The woman was clearly in labor and occasionally stopped and held onto her husband, wincing but always smiling broadly. They were so cute I couldn’t stop staring at them as I gripped my steering wheel and felt occasional throbs from the wounds in my hand. How could I fault them for taking this exciting moment for granted? Why shouldn’t they be giggling as they made their way into the hospital to have their baby? I tried to remember the night that Leah was born in 1994, also at Cedars. It was around this time of night but I don’t remember calmly driving into the regular parking lot and doing photo sessions with my then wife. I believe I screeched into the ground floor emergency room lot, and it was a good thing, too, since Leah arrived a little more than an hour later. Watching this couple I couldn’t help but think how this could (should?) be me and Kendall. It was exactly the time when we thought we’d be having our babies. This would have been Kendall’s 37th week of pregnancy and we were aiming our sights on anything past 36 weeks when the twins would be fully cooked and ready to go.
Today I could be writing a post about our brand new sons, Oliver and Charles. Instead, we’re 85 days in and have gone through a lifetime of experiences. Agonizing, terrible ones but also many amazing and beautiful moments. This morning the doctors took Charlie off his nasal cannulas. He is completely breathing on his own now, which is huge since so many of the most serious and long-lasting problems micro-preemies face are respiratory. We can now take Charlie out of the incubator the whole time we’re in the NICU. Another huge milestone today was that he had had his first complete feeding by mouth instead of through his feeding tube. The ability to eat entirely by mouth is one of the main tickets out of the NICU. Yesterday the occupational therapist was able to get Charlie to take a few drops out of a bottle as our son coordinated the difficult process of simultaneous sucking, swallowing, and breathing. I expected some improvement today but was flabbergasted when he was able to down the whole thing. Granted, it was only 10 cc and he has a long way to go, but it was a very encouraging beginning.
So I am back to being an ecstatic dad who also realizes that there will be many challenges ahead. But I refuse to let my old nemesis, the Evil Eye, take away my excitement about the victories at hand. I embrace hope even though I haven’t flushed my system of all fears. True, there’s a certain madness to any kind of hope when so many awful things can and do happen to so many people. For all I know, that fun, attractive couple I saw last night in the parking garage are in the NICU right now, dealing with any number of complications to their baby’s very existence. I hope not, I’m guessing not, but who knows? Their giddy, carefree entry into the hospital certainly didn’t protect them from potential tragedy or pain.
One of the best examples of love intermingling with hope and madness is the character of Rose in the musical “Gypsy.” I saw Patti LuPone’s channeling of this character twice last year, once at the first preview for the show, and again months later when I returned to New York with Kendall. LuPone played the role for all it was worth but brought a vulnerability to the character that I’d never seen. Sure, she was driven and crazy as a loon, but how could I not relate to her urgent pleas to the universe for her child:
You’ll be swell! You’ll be great!
Gonna have the whole world on a plate!
Starting here, starting now,
Honey, everything's coming up roses!
Now’s your inning. Stand the world on its ear!
Set it spinning, that’ll be just the beginning!
Curtain up! Light the lights!
You got nothing to hit but the heights!
You’ll be swell. You’ll be great.
I can tell. Just you wait.
That lucky star I talk about is due!
Honey, everything’s coming up roses for me and for you!
I can’t tell you how many times I’ve already sung this song to Charlie and felt the passion of Rose’s hysterical demands:
Charlie looks so great! I don't think I've ever seen a cuter baby. It's so nice seeing his entire face!
Posted by: Campbell | July 22, 2009 at 01:29 AM
You're doing an amazing job of writing this all down. If I were your editor, I would have begun the post with your final paragraphs to avoid giving everybody a heart attack. :) I didn't know where you were taking us, and I'm glad we landed safely. Yay for intense and productive therapy sessions. Charlie is lookin' good, prayers for Kendall as you're bossing her around in the NICU! :)
Posted by: Erica Mullenix | July 22, 2009 at 02:12 AM
She's no Ethyl Merman...
Posted by: Gordon | July 22, 2009 at 03:33 AM
What a post! What a video clip! What a beautiful son you have there, Danny! Charlie is so fortunate to have been born to Kendall and you. So much love, awareness, understanding, humor, passion, compassion.
Again, thanks so much for sharing with us this amazing journey you are all on together.
Constantly holding you all in my thoughts.
Posted by: tamarika | July 22, 2009 at 03:35 AM
Oh dear, for some reason the wounds on your hands made me think of stigmata....but that's my recurring metaphor for the burdens we have to bear in life so I guess its not so far-fetched. Lovely post.
Posted by: Maria Sosa | July 22, 2009 at 04:47 AM
"One of my biggest life lessons is understanding that feelings are not always “either/or” but more often “and.”
Thanks Danny for that line. It's helpful to all of us. And thanks again for sharing this post and Charlie's progress. But can you switch the roses photo to lively and colorful? I'd enjoy a bit of manic right now.
xoxo
Fake Grandma
Posted by: Elaine Soloway | July 22, 2009 at 05:34 AM
OK...another amazing day and post and another day I start with tears and the realization that when our children are good everything is fine...fine and coming up roses. Love to you and all you're going through with that beautiful family of yours. xoxoxo just a long road to a great ending .....the path was difficult but well worth the journey.
Posted by: esther fox | July 22, 2009 at 06:15 AM
He sure likes his Mama's kisses! So sweet.
Posted by: Tricia Hicks | July 22, 2009 at 06:22 AM
Wonderful post Danny and Charlie looks absolutely adorable! What a treat to finally get a full view of his face.
Posted by: Jeff | July 22, 2009 at 07:33 AM
I love you Danny for all of your honesty, self-knowledge, and eyes-wide-open approach. Be well.
Posted by: Jennifer New | July 22, 2009 at 08:02 AM
Danny:
Your writing is lyrical, powerful and oh, so moving. Glad to know that Charlie is showing some positive progress. Thanks for sharing your observations, insights and innermost thoughts on such a difficult, yet life-affirming experience. Charlie is so fortunate to have a dad as aware, introspective and thoughtful as you. All the best to you, Kendall and Leah.
Posted by: Kevin Davis | July 22, 2009 at 08:12 AM
Wonderful post Danny, yet again! You are so right when you say, "...that feelings are not always 'either/or' but more often 'and'." How true.
I'm so thrilled for you guys that Charlie is progressing nicely (what a cutie!), and my wish for you is that the journey continues to get smoother, bringing more joy and less fear every day!
Posted by: Elise | July 22, 2009 at 08:22 AM
I had not had time to come and read your blog in a while, Danny, and I was so happy to read about Charlie and how well he's been doing lately. He is also such a cutie! You and your wife have been in my thoughts ever since this ordeal began, and I can't wait until Charlie can finally come home.
Posted by: Elisabeth | July 22, 2009 at 09:07 AM
Danny, I'm breathless...you've brought me so close to you and your family through these episodes of emotion, experiences and photos. I was moved to tears in a good way today. Charlie is so beautiful. Everyone else has said what I'm feeling. I think and pray for you and Kendall often. I know Judy (mom)is at your side helping you through this. Bless your family..I can't wait to buy a present.
Posted by: betty | July 22, 2009 at 09:18 AM
Danny, what great news that Charlie is breathing and eating on his own! Another great post and video.
Love,
Julie
Posted by: Julie R. | July 22, 2009 at 10:24 AM
How wonderful that you can smell the roses and translate your feelings to Charlie (along with Patti LuPone belting it out) .... I want to kiss that "punim" .... he is so adorable. Keep smelling the roses (but no thorns please),
Love,
Marilyn
Posted by: Marilyn Molnar | July 22, 2009 at 11:24 AM
Way to beat that Evil eye down. In the end, all it does is sabotage us.
Posted by: churlita | July 22, 2009 at 11:31 AM
yipeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeee! ox,m
Posted by: m.yahn | July 22, 2009 at 12:28 PM
I saw the smile! I also saw how hard he was trying to keep his eyes open. It's an overused word, but Charlie's just amazing to me.
And much love and thanks to you and Kendall for sharing the story of Oliver & Charlie with the rest of us. My faith in the goodness of people and, well, the world, has been greatly tested in the last few years. There are days it would be easy to convince myself that there are few genuine experiences left...then I come here. And I see you and Kendall and Charlie & I think...
Love. Painful, soul-shredding, spirit lifting, and above-all, real.
Posted by: Jane | July 22, 2009 at 01:02 PM
A rose is a rose is a rose.
--Gertrude Stein
(Hey, it's the one rose metaphor that was left unplucked. Wonderful post)
Posted by: Kirk Jusko | July 22, 2009 at 01:07 PM
Those little folds on the back of his neck, the smile on his face when his mom kisses him, sucking on his thumb - Charlie is so precious! Glad to hear he is breathing and eating on his own - major milestones in your journey. Thank you so much for sharing all of it with us - the ups and the downs - I hope it helps you to know we are all here for you and rooting for your happy ending.
Posted by: Sally | July 22, 2009 at 03:16 PM
Bravo! When Kendall lowered her head to kiss Charlie, I leaned towards the computer screen. He's precious.
It sounds like you have a very good therapist. Your honesty is humbling and inspiring.
Posted by: Chris | July 22, 2009 at 03:22 PM
You could not have chosen a more perfect song! Today, for the first time, I think he looks like Kendall!
Breathing and eating - he is embracing life.
Posted by: Shari | July 22, 2009 at 03:43 PM
I have such an urge to kiss that kid...
Posted by: Pam P. | July 22, 2009 at 05:19 PM
Every couple of days I pop in to see how all of you are holding up. I'm so glad to see this -- I really mean it -- and I am completely DELIGHTED by your good news. Still thinking about all of you...
Posted by: Sweeney Agonistes | July 22, 2009 at 06:06 PM
Some people grab a Bible when confronted with the ups and downs of life. Others go to... Broadway.
Posted by: Neil | July 22, 2009 at 06:53 PM
I just have to keep coming back here and looking at him! What a triumph just to have gotten this far!
I commented to someone that he looks so much older, wiser and more alert than the newborn baby he would be just about now. Like you, he's been shocked and stressed and loved into a higher level of awareness. Whatever injury happened to his brain, it's also received an enormous amount of stimulation. Talk about Head Start! And you know how plastic and how packed with reserve power brains are.
Posted by: amba | July 22, 2009 at 07:12 PM
I wish I had adequate words to tell you how blessed I feel to get the know sweet baby Charlie and you so intimately. Your written voice lets me experience a full range of emotions which lets me grow in knowledge and compassion. Thank you.
I need to tell you that I love your little fellow and I love you and Kendall for the depth of your love.
Love to you and yours, Debbie
Posted by: Debbie Voll | July 22, 2009 at 08:54 PM
I'm ready for the feature length version when you have a chance--never ready for it to end these days. He is a fascinating baby already as I'd expect from you two.
Posted by: Margie | July 22, 2009 at 09:13 PM
He looks AMAZING!!! I've been following your blog without commenting, but tonight deserves a comment!!! A WHOLE bottle on his own?!!!
My own daughter was born just 5 weeks premature last year and was in respiratory distress. We spent 3 weeks in the NICU (I know that must seem like pocket change to you after 80+ days, but they were still agonizing), and I can totally relate to all of your feelings . . . the constant euphoria mixed with intense fear (I still have that non-stop over various things with my daughter); the twinge of envy watching the happy-go-lucky parents-to-be go into the hospital . . . I have a friend that just had her baby two weeks late, and each time she complained, I felt so angry with her and thought "what I wouldn't give to have gone PAST my due date."
Anyway, your sweet Charlie is in my thoughts (as is Oliver). When I saw that he had his first feeding completely by mouth, my heart felt so full and I thought, "he's going to get out of there soon!!"
Posted by: Allison | July 22, 2009 at 10:14 PM
I think he looks a bit like Peter.
Posted by: Leslie | July 23, 2009 at 12:48 AM
Wonderful to read of the progress dear little Charlie is making....ALL these wonderful little victory's...and actually, they are not so little...thry are BIG.
For Beauty and inspiration, without thorns...go and be cheered by the second post of "ROSES", my dear Danny....I couldn't help but think of telling you when you wrote about the Hope that Roses bring. And the Love, too....
Sending you and Kendall, huge amounts of both!
Posted by: OldOldLady Of The Hills | July 23, 2009 at 01:43 AM
The coolest thing about practicing present moment mindfulness, is that we get to start over again with each moment! Boy, can I relate to the simultaneous flooding of dual emotional states. I am thrilled to see the little darling boy continuing to grow, and make those small significant steps toward release from NICU! xoxo Susie
Posted by: susie specter | July 23, 2009 at 07:05 AM
What s/he said re: all your kindly commenting crew!
And where should I send the check for the money you just saved me in therapy bills of my own with:
One of my biggest life lessons is understanding that feelings are not always “either/or” but more often “and.” My goal is not to force myself to be positive all the time, but rather to stop being so surprised when the fear stuff creeps back in. And I want to develop coping mechanisms that do NOT involve tormenting my loved ones or myself with my sudden bouts of terror.
I'm speechless and Charlie is chubby and free of tubes, who would thunk?
Congratulations and continued progress to each and every one of you, Danny.
Amitiés,
Posted by: La Framéricaine | July 23, 2009 at 08:54 AM
Gorgeous post, Danny!!!
Posted by: Karen | July 23, 2009 at 09:38 AM
I love those rosebud lips of his! And, the sideways glances. I'm plotzing! Poo poo poo!
Posted by: Sheila Linderman | July 23, 2009 at 11:04 AM
Hope Charlie is okay and will be home soon.
I like all you musings except Stamp Out Santa. In total disagreement over the fat
man in the Red Suit.
Posted by: juliane grosman | July 26, 2009 at 02:55 PM
Just a note to say I was thinking of all of you on this fine Sunday evening.
Posted by: Adriana Bliss | July 26, 2009 at 11:41 PM
Amen.
Posted by: Maggie May | July 26, 2009 at 11:43 PM
i'd like to thank you for your honesty and willingness to expose the terror as well as the hope. life is full of incredible pain and surprise and blows...in addition to the lighter sides of life. your blog helps me to not feel so weird/damaged/alone. So many of those I know are protected or privileged or "make the best of it" by not talking about the darker stuff. It embarrasses me to speak my own slices of darkness into so much light. It's embarrassing to be open and vulnerable and I'm very grateful for your willingness to speak all your truths.
Posted by: open palm | July 27, 2009 at 06:52 AM