My Photo

December 2016

Sun Mon Tue Wed Thu Fri Sat
        1 2 3
4 5 6 7 8 9 10
11 12 13 14 15 16 17
18 19 20 21 22 23 24
25 26 27 28 29 30 31


« Surgery Update | Main | Everything’s Coming Up Roses »

July 17, 2009

Comments

What a beautiful post. You should really try to get this published... I think it would profoundly help others who have babies in the NICU. I couldn't agree more with what you've said!

I've been reading your blog for a while now and wasn't sure if I should post. After reading number 3, I now feel comfortable in doing so. =)

I think of your darling Charlie often and love hearing how he's doing. So glad to hear he was playful... how wonderful! Just a taste of what's to come! =) I also send my heartfelt sympathy over the loss of your beloved Oliver.

That pic has him looking the best yet. Very nice to see him getting healthier. Continued thoughts and good wishes to you, your wife, Charlie and everyone else closely tied to the three of you.

Danny,
You express yourself so well. I get so much out of reading your blog. Charlie is adorable. It looks like he's beefing up!

Love,
Julie

I was watching 60 Minutes a few weeks ago and there was a story about a micro-preemie who is now 11 years old. I say the story is about the micro-preemie, but it was actually about some physically disabled rich dude who decided instead of killing himself, he'd teach disabled kids how to sail on his dime. Anyway, the 11-year-old micro-preemie made me think of Charlie, of course, and that boy had grown into a big ol' boy. Yep, developmentally delayed, but healthy and happy and doing something starboard and aft on some rich dude's yacht. One day you'll show Charlie photos of his 2 lb self and he'll say no way and you'll say way, then it'll be off to dance class or somewhere.

When I pray at night, I ask G-d to heal Charlie's brain, and help him to grow healthy and strong. I have complete faith
that G-d will heal him.
That is a beautiful picture of him you have posted today. Such a sweetie. From the picture he looks like he is gaining some weight.
Thanks for the update.

Absolutely amazing what our children teach us. Never stop learning from that little man of yours and your big girl too. Taking each day as it comes is in no way living in denial. It's the best way to get closer to our Creator. Taking each day as the miracle it is leaves us nothing but faith. Wishing you much nachas from your kinderlach, all three of them.

Yakira

Oy Danny, Charlie is so totally adorable! It is easy to fall in love w/ his little tiny self, of which inside resides a great big wonderful soul that shines through his eyes! He is so darn cute! May he continue to grow in strength and health every day, and I need your snail mail address so I can send you a giant OY sticker to put on your fridge! Luv, your bellingham soul sis susie

Holy shit this post is amazing.

Such a beautiful boy, I could almost hear all those karolniks in heaven kvelling over him. Pu pu pu, he looks great, and very wise. definitely an old soul.
These comments are also wonderful..what more could one say after that last one.
Shalom

Listening to Fred Astaire and gazing at the cuteness of Charlie--nice combo.

Your pizza anecdote made me smile. It sounds like this arduous journey has included some wonderful self-discovery.
My own miscarriages helped me learn #3. I couldn't agree more.

I'm so sorry to hear about Charlie's new roommates' sad beginnings. It always catches me off-guard when a woman dies in childbirth; what an unimaginable grief for her significant other. I hope the babies do well.

Mazel tov on the working toches. He continues to be breathtakingly beautiful.

xo

Danny,

There are many things that I could say about your post because I could relate to much of what you wrote based upon the unexpected and deeply destabilizing events that have occurred in my own life. None of them involved a child of my own, however. Although many of them did involved love ones.

I read this post when it first went up and hesitated with my original comment because I was so tired. Now, reading it again and listening to and watching the video that you posted, I am reminded of "The Singing Detective" and how profoundly my first viewing of the Michael Gambon/BBC version of it was. I still go back and rewatch it from time to time because there is so much power and inspiration in it, if one is of a certain turn of mind.

Which brings me to the thought that struck me as I listened to Fred Astaire sing to Charlie: everything that you are, that you value, that you love, and that you have become, up until today has prepared you uniquely to cope with and transform this frightening and uncertain experience of loss, love, and anticipation regarding your family's present and future. You can be confident of that.

I know it sounds portentous, but the video cracked open the vision of Potter's work and how you are making art out of the hand that your family has been dealt. Peace day by day and continue to transcend the fear and make beauty out of it.

And Charlie looks absolutely chubby and energetic! High five to that!

Dear Danny,

You have learned more and expressed it so beautifully in the past 80 days than most people do in a lifetime. You sre an incredible person as is Kendall and I know your Charlie is absorbing it all .... you can see it in his eyes.

Love,
Marilyn

Dear Danny,

Pu,pu,pu indeed! Also poo,poo,poo. Ain't it grand. He looks great, no tubes blocking the view. I could eat him up.

Love,
Cynthia

Every insight is a gem. Charlie is beautiful and you are wonderfully human. Thank you again and again and again.
Carry on.

Danny - Charlie is so yummy! I know he is still so tiny, but he looks so wonderfully chubby on the video. It is a pleasure to see. He is a sweet, adorable baby who is lucky to have such a loving and devoted father and mother! Love the post. I am so impressed by you. Sending lots of love and good thoughts your way. Love, Julie

He's dreaming...really dreaming! Can you play Fred Astaire for Charlie in the NICU? Love to you Charlie boo! Terry

Yay extubated! Well done Charlie. I love the Fred Astaire. And I agree with the comment above, there is a touch of 'Singing Detective.' One of my very favourites.

I'm sorry you received that comment from the lady in Australia. But if she comments again, or indeed dear lady if you are reading now, please go over to my place. Scary things just happen I'm afraid. There isn't always a simple explanation.

I agree with all your lessons here and that singletons just get shuffled around more. I also kind of like people asking about G. Your writing is amazing, I wish that I could have got my hands on your collected NICU musings before my own NICU days. Which would have had to involve some scary kind of time travel!

What a wonderful post! Your a great man.

Thinking of you and your wife and your baby.

F x

Such a beautiful post Danny! Thank you for sharing your wisdom and your precious son with us. I am just so overjoyed for Charlie, you, and your family that Charlie's surgery was successful and he is on the mend! Bless his little heart (and tushy!)

Blessing too, to you, Kendall and Leah. What a loving and supportive family Charlie will (G-d willing soon!) be coming home to.

I love the part where he lifted both arms up. It looks like he was asking to be picked up. :-)

That's such great news about the poop! I don't know that it will fly as story-worthy when he's thirteen, but at 36 weeks? It's definitely applause worthy!

Wonderful to see Charlie looking so happy and alert. Seems he's getting used to being on camera and was asking for his close-up while waving his arms!

Your "five things" list is something we can all learn from. Wonderful that you could articulate that for us. I've battled the "all or nothing" sort of behavior myself for years. In my case it seems to stem from overly strict parents who freaked over every small transgression. The sort of people who once banished me to my room for an entire day because I made the mistake of missing the school bus just one time in 12 years.

Well, the next time I begin to scream at the computer over a slow download speed or am tempted blow my horn at the car in front of me as soon as the light turns green, I'll re-read your list of "five things" and hopefully calm down.

Best wishes for another good week ahead. Charlie and all of you remain in my thoughts.

Charlie looks wonderful! When I pray for our daughter Annalisa (born at 25 weeks and now 30 weeks) every night and express gratitude for the little forward steps that she takes, I pray for Charlie as well. I hope that they will meet some day in the not so far future. Thank you for sharing your lessons, my husband and I learning the same ones as we advance in our journey in the NICU. You and we are connected in our current NICU universe.
Blessing to all of you.
Helena Seli

The last few seconds of that video are amazing, with him waving those little arms around - so much life and energy! Sounds like you've had a few lifetimes of learning in 80 days (perhaps the title of the book you'll publish with these posts?).

Dear Danny,

Everyone's comments have been so thoughtful and spot on, that there's little left to say. But of course, I will...

Loved the picture of Charlie with his arms outspread. Was he acknowledging all of his fans?

Anyhoo, just stopping in to say hello and let you know that prayers for remembrance continue for Oliver, and good health for Charlie. And strength for you and Leah.

xoxo
Fake Grandma

Dear Danny,

All have already said it, another very beautiful post you are sharing with all of us, and you deserve so many thanks in return for that.

Opening up to the world of your readers is thankfully bringing you back some of the things you need to go on in these challenging times. Opening yourself to self-introspection and gratitude is giving you, I hope, some of the resources you would otherwise be deprived given the turmoil the last events in your life have thrown you all in.

I am very thankful for your talent to do so. I wouldn't miss a post of yours for an empire, because you brought all of us into the tiny window allowed to visit Charlie at the NICU, in a safe way for him.

I was struck at your mention of the off-line commentator that you had to bar from your blog. I approve of your position so much. It is often very difficult for readers and commenters to remember where they are, because sometimes they just see themselves completely in front of their own screens, in their own lives and settings, and entitled to their own thoughts and judgements, whether those are valid or not in the light of the original post they read and comment on.

It surely makes the exercice of publishing personal stories more difficult, and not only for fear of how Charlie might approve at the time of his bar-mitzvah, keyn anorah, of you disclosing some pride over embarrassing details for his privacy - this is what parents are bound to do all the time anyway.

This is often that fear of forgetting that I am not only reflecting on my own thoughts when I am commenting, but also providing the blogger I deliver the comment to with some energy, be it positive or negative, that will prevent me from commenting on a regular basis (the other reason being certainly the time that I can devote to commenting on everyone's blog who would have left me with a strong urge to comment).

Thank you for sharing your five life lessons.
I am procrastinating on writing a post that I wish would be as beautiful as yours with the life lessons I am currently living with. If I ever manage to finally do it, be sure it will also be dedicated to Charlie.

Lots of love to all of you.

Charlie looks GREAT! So CUTE!

Tui tui tui!

Thank you so much for sharing. I just happened upon your blog and it brings back so many memories for me. Our son was intubated for 52 days, had a major surgery, spent his first 78 days in the NICU, and has now been home with us for 7 weeks. (He's doing great, by the way.) I wish I had your advice when we were surviving the NICU! I know our situations are not exactly the same, but I wanted to let you know that your post brought tears to my eyes! You and your wife and Charile will be in our prayers and I'll be reading your blog to keep up with his amazing journey!

Dearest Danny and Kendall:
I can't tell you how wonderful it is to see Charlie looking so big and so present, looking around, waving his hands. I just kept oohing and ahhing as I looked at the welcome video. I know you can't WAIT to take him home. Hope you are having some wonderful kangaroo moments today!

Danny, Around the World in 80 Days will have nothing on you all! I see a book in your future. Charlie will autograph copies of course.

lots of love from NYC,
Susan

I have been following along with Charlie's progress but haven't written until now...I came into your blog via the Wilco connection, but now find myself checking in regularly to see how you, and mostly baby Charlie, are faring.
Thank you for your continued honesty and the bravery it takes to lay your heart open as you've been doing. I've always felt that in any given situation we basically have two choices: to deal, or not to deal. You have found a way to cope with extraordinary loss and stress with grace, humor, and humility. OIiver and Charlie (and of course Leah too) are lucky to have you as their dad.
And I love this last picture of Charlie, where he looks downright chubby. Way to go, baby!

Charlie looks wonderful! Looks like he's dreaming about something fun. Glad to hear he is recovering from the surgery so nicely. As usual your words are inspirational and beautifully written. Thinking of you!

Danny. This comment has nothing to do with the sadness and joy you have had over the last few months, but simply your writing. You have touched so many with the clarity and emotion of your words.

Thank you so much for sharing and keeping us updated.

What a great post! What a great-looking baby!

Reading today for the first time (Neilochka linked on twitter) and I wanted to comment because we also had a long NICU experience. Our kids were born at 25 weeks and our daughter was in for 6 months. You are so right about the NICU lessons. I have mentored some parents whose children are still in the unit and one of the first things I tell them is not to panic at each low number or alarm. It is hard to adjust to the possibly life threatening cacophony but it is usually okay. By the way, one day you may want to mentor other parents in this situation because I have found it a healing experience. Congrats on making it this far and on your beautiful boys. I am sorry you aren't going to bring them home together.

You and Kendall have been through so much these last months, Danny...the Ups and Downs...Hard on the system, I know. Your little Charlie is so very sweet and such a fighter! I know your sadness at losing Oliver cannot be measured....My heart goes out to you all and know, though I haven't commented very much...(My own personal loss has undone me..) I do come and visit and go see the Videos on YouTube...I love how you use such wonderful music on them...
And thanks for your very very dear words about my flowers pictures...It has become my "art" now....! Love to you all, and a Big Hug to Kendall---The Birthday Girl!

Wonderful post - a great read for anyone learning to cope with a NICU stay. And what a beautiful baby! My thoughts are with you and your family.

Dear Danny,
You're a riot. That's why I got addicted to your blog back when I first started reading it.
At first, I thought that the Charlie Experience was your big test in life.

Now, I'm leaning more toward the theory that it's your life lesson. And, from all the very positive things you've shared in this latest installment, I can see that you're really learning a lot.

If you ever get the blues, rummage through an old used book store and locate a book by Louise Hay titled, "You Can Heal Your Life." It's chock full of positive affirmations that will transform you. I promise.

You're a very lucky man...

I get how you feel. I want to tell people i have three kids but really two but not really. then i suddenly blurt out that my baby died on easter and then everyone goes into shut down mode in where i say, "it's alright, well, it's not alright. okay, sorry i said it that way."

pretty much my conversations go like this. i'm a total conversation killer these days.

I just wanted to add my voice to those who are sending positive thoughts your way on behalf of Charlie. It's fantastic the way he is progressing.

Your story sounds quite similar to that of Nicole Conn who documented her own experience with her premature son in "Little Man."

http://www.littlemanthemovie.com/

Great things to have learned, I'd say. Also, very appropriate, I know, since I was vicariously a chaplain in the NICU of a big hospital in Connecticut one summer (the REAL chaplain that summer -- who does not have those natural "doomsday" tendencies I seem to share with you -- has been concerned but not overly worried about Charlie and happy to hear he's growing and doing well, which he's been telling me all along Charlie would). Oh, and I love you. And I love Kendall and Leah and Oliver and Charlie, too (despite never having met them. How can anyone who reads your blog possibly not?). Please tell Charlie he's looking wonderful these days.

Bless your heart. Thank you for the reminders about awareness and presence in our lives.

As my father lay dying ten years ago this month, I too was so grateful for the gentle loving kindness of the professionals in hospital who were trying to ease his days. Sometimes I'd run to the store and come back with a bag of apples and a couple of bags of cookies - they always enjoyed a staffroom treat.

I will think of you today and I certainly wish you all well.

Take care,
Mary

So glad to hear Charlie is doing better. Your post, as always, is amazing! If someone can publish a blog about cook books you certainly should consider publishing a book about babies in the NICU!!
I love the bubbles, by the way!!
Love,
Marci

What a wonderful (as usual) post Danny. All of your "lessons" bring back such memories about when Yoni was born, but what got me the most was when you wrote about wearing a badge that says "Baby Boy #2." Yoni was also baby #2, which was very clearly noted on his isolette and on my wristband. It was very jarring to constantly see, and I know other parents were wondering where baby #1 was (there were so many other multiples.)Wow - 10-1/2 years and it's still so fresh in my mind.

Anyhow, Charlie looks so great every day - I LOVE your music choices - they are really so spot on!

Oh, by the way, I hope 3rd cousins twice removed will be invited to the bar mitzvah - because we're coming anyways....

I have been lurking a lot, but I had to come out of my hiding spot to say 2 things today.

1) Lovely, beautiful, powerful post. You say it all so well.

2) Charlie looks so strong! Amazing what a difference a week (and even a few days!) can make. I wish him continued success and strength.

You, Kendall, Leah, Charlie and Oliver are in my prayers.

Charlie is so damn cute. And the Pizza? I think your concern was valid. Great post.

Danny,

I can't believe how much Charlie has changed! Thanks so much for the video. I can't wait to see your son again.

Oh Charlie, you are just adorable! Sending you lots of prayers, and well wishes from Tennessee.

“It’s the pizza! It’s not coming!” ~ I really can't stop laughing. I can totally relate and I'm gonna have to steal it.

As I've followed your story and ached with you and celebrated with you, I couldn't stop shaking my head and wondering "How do people get through something like this?" Now I see, Charlie is getting you through this. He and Oliver are teaching you what you need to know. And you, in turn, are teaching us. I've tucked everything you've said here into my soul and am already putting it into practice, right here, right now. Thank you.

And I really can't stop laughing about the pizza...

Another great post. And I loved the video - what a check little yawn.
K x

God bless this child !

How precious! As a parent myself, it would break my heart to see my child sick. Much more be confined in the NICU. My heart goes out for the lost twin and the mother who passed. May their souls rest in peace.

The comments to this entry are closed.

Family

Movies