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« Larchmont | Main | Father’s Day »

June 19, 2009

Comments

Danny, do whatever the hell you want to do with this blog, that's what I say. That and I love you.

Danny, I am praying for your little Charlie to grow strong and healthy. I know G-d answers prayers, our own family has a beautiful little girl born at 27 weeks, who is now a healthy, happy and thriving eight year old second grader. I expect nothing less from G-d for Charlie. Thank you for sharing his brain condition so I can be more specific with my prayers.
I honestly don't know how you kept from punching that Mother's Day doctor.
I appreciate your honesty in talking about your struggles with depression/anxiety and Kendall's struggles as well.
Hang tough Miller family!

Danny, I cherish your updates and selfishly want to keep reading. But you are going through the worst kind of hell on earth and whatever you decide is what's right.

I'm just devastated to read the latest and I'm praying to G-d that He gives Charlie strength and comfort. And gobs of the same for his dear parents. I feel so utterly powerless and would walk through fire to change this for you.

Much Love,
Lori

This is so, so hard, Danny. I remember being in that place like it was this morning... both literally, the NICU, and in terms of having to hear various takes on doom and hope in your life. It's just an impossible situation.

What to say, other than look at that sweet boy. Just look at that. What a boy.
xo

Man...all I can say is that "I hear you". And, that I've been there. Our circumstances are a little different, but we have had some similiar experiences. I had a baby boy that was stillborn in 2002, a healthy girl in 2004, and in 2006 my daughter was born at 35 weeks, hypotonic, without the ability to swallow. So, we spent 62 days in the NICU, 2.5 years ago. I remember those desats and brady's well. And the docs...and their sometimes very insensitive deliveries.

I'm so sorry you and your wife are going through all this. I think I waffled between acceptance and denial the entire time. How can you not? That is called "coping".

Two and a half years later, I can tell you that we still have a feeding tube and tracheostomy, but life is really good and we are happy. And my little girl is beautiful and brilliant. It is different than I expected, but not nearly as dire as the doctor's predictions. And we made it. And the brady's and desats are a thing of the past (I know it is so hard to think that there will come a time when they will become "unplugged".)

I hold you and your family in my heart and prayers.

Sincerely,
Jennifer

Never commented before, but you guys have been on my mind a LOT since this started. You do whatever you need to in order to stay floating -- you, Kendall, Leah, Charlie, and Oliver have my support and my thoughts and prayers. And I'll be here, regardless of what you write.

I love Charlie's gesture--he IS your son. Already with a sense of drama and humor!
So great that horrible doctor is an exception. Anyway, how can you prepare for the unknown? Easy to imagine 'the best' but "the worst" is actually meaningless.
With all this, the main thing coming through your writing is love.

I think when Scarlet threw her wrist to her forehead she said, "tomorrow's another day."

Like everyone else who is reading, I feel powerless, sad, hopeful while watching your family take this rollercoaster ride. I get excited over every piece of good news...and that's where I'll leave this, because damn it, Charlie deserves some!

You're amazing Danny. First, if I was in your position and that "Mother's Day" doctor said that to me I would have either had a complete breakdown on the spot or cleaned his clock! I can't believe any human being would be callous enough to have said those things to the emotionally fragile parent of a child in the NICU -- and he wasn't your doctor, and you didn't ask for his opinion. Yet here you have the fortitude to stand and listen, then rationally analyze his statements. God bless you!

Then there is your remarkable ability to recognize and enjoy the precious few moments of pleasure you have with Charlie and not dwell on all of the possible tragic outcomes.

You inspire me and thank you for continuing to share.

The way you so honestly and clearly, so humbly and bravely and blindly are walking through this with your heart and mind staying open- that is amazing.

Oh my how heartbreaking this all is and yet so bittersweet with your rollercoaster of love.
We wait, we wait and wait.
I pray for you and your family to quickly make your way towards peace, calm and togetherness.
Love conquers all.
Thank you for letting us know how you are doing.

Dear Danny,

I am not at all religious, but I do believe in a higher power and because of my belief, I pray that this higher power gives Charlie's doctors the wisdom and you and Kendall the strength to carry on for his recovery.

Love,
Marilyn

Danny,
I am holding you in my thoughts.

I appreciate your eloquent expressions of these difficulties. All of your feelings are valid and expected. It is hard to believe sometimes that those in the "caring profession" can be so thoughtless but since an actor acquaintance of mine makes his primary living schooling doctors in their "bed-side" manners through role play at the University of Pittsburgh Medical School this must be very necessary.

Your story reminded me of the doctor on duty one weekend at Pittsburgh's Allegheny General Hospital in July 1976 who casually informed my father that he was dying of cancer and should get his affairs in order even though his "regular" doctor had not yet told him that he even had cancer in the first place.

All of you remain in my thoughts. My mother, whom I'll be seeing later today, asks about Charlie every time I speak with her on the phone.

Stay strong!

Dear Danny, I 'm crying in my coffee again, starting to get used to the salty topping. I so wish I could be there, to take a walk with you, sing some songs, be a support in person. If I were there this morning, I would order you to take the day off and go to the beach, and focus on nothing but your own excellent, massive self-care!

Danny,
You write so eloquent. I'm rereading Elisabth Kubler-Ross's book on Death (mourning my father) and wanted to understand more. She says a person can be 13 or 80 when death occurs, what is most important is taking each day as a gift. We all die at some point and rereading her book reminds me that each minute, each moment while we are alive is so precious. It is amazing how this has helped me daily. We all have each other to help painful parts of life. You are so real and in the moment. Death or writing about painful feelings are taboo which I think the rules should be broken. We are all human and what you are going through (not going around) is what life is about. It takes guts to go through and help Charlie and his challenges and I commend Kendall and you in your strength to stick to your intuitions.

As always, thinking of you and your family. You are a beautiful soul and so are Kendall and Leah and most of all Charlie.

I can only imagine the hundreds of people, like me, who have been coming to your blog, pulling up behind you on the ride, wanting to say something but unable to comment, in fear of failing to find that most perfect composition of words that can bring comfort to you, Kendall, Charlie, and Oliver, wherever he might be right now.

I feel grateful that you've let us into your world, because it is filled with a perspective and shape and depth that many of us may never see but need to know.

We're listening and watching, hoping and thinking, loving and wishing that your days become more up than down, more steady then rocky, and, as one person said, we want no more intermissions, and just for Charlie to come home.

As I write this, the Beatles' Golden Slumbers just came on our Ipod. Amazing how new lives like Charlie's can bring new meaning to an old song:

"Golden Slumbers" by The Beatles

Once there was a way to get back homeward
Once there was a way to get back home
Sleep pretty darling do not cry
And I will sing a lullabye

Golden slumbers fill your eyes
Smiles awake you when you rise
Sleep pretty darling do not cry
And I will sing a lullabye

Once there was a way to get back homeward
Once there was a way to get back home
Sleep pretty darling do not cry
And I will sing a lullabye


And from the Thomas Dekker poem this song is based on comes that perfect composition of words I've been seeking for you and Charlie:

Care is heavy, therefore sleep you,
You are care, and care must keep you.

We love you and are thinking of you always.

Kurt & Sarah

Kurt's by far the more mature one between us. My initial reaction to reading this was to ask you for that %$^*&# doctor's name so I could sign him up for a NAMBLA membership or something equally horrid. :)

But, yeah, Kurt said it all. We love you guys.

Love to Kendall--hope she is hanging in there. This is so unfathomable for any mommy--or daddy to say the least. Our oldest was a NICU baby--full term but complete with the brady's and dsats...he is now 4 and FINE. And, hey, UCLA is right down the street--don't even blink at the idea of getting a second opinion there. (I grew up in the SF area and am familiar with Cedars and UCLA...)

NICU babies are stubborn--watch out...Charlie is going to give you a run for your money in a few years ;).

Love to you all. Stay strong. In our prayers.

You have this amazing way of making me cry and laugh at the same time. While you have your Mother's Day doctor, we had Dr. Death. There's always this one doctor who just has no sense on how to deliver information. I think of you and you family every day. Happy Father's Day, my friend.

danny, you are expressing the almost inexpressible about an incredibly raw human experience, and doing it beautifully and honestly. especially because that is so rare, and there is so much for others to learn, your writing as you are is a true service to humanity. best from nancy

Danny,
Everything I'm thinking has been said already. We're all behind you.

Love,
Julie

I like to think Charlie has some sense of how many people all over the country (world?) are hanging on your every word about him and sending him (and you and Kendall and Leah) their positive thoughts & prayers.

I always feel tongue-tied, trying to think of what I could possibly say...

Your love, your spirit, your courage are humbling, amazing, inspiring.

Jan

happy father's day to you! xo,m

I hope this father's day is a good one for you!

Happy Father's Day, Danny. May both your children bring you much naches.

Love,
Cynthia

Danny,
Happy Father's Day. I have been thinking about you today and finally got a chance to read your post. You continue to amaze me. Love to you all. You are such a great dad. Leah and Charlie are lucky to have you!!
xoxxoo,
Bulia

you're doing great, keeping hanging on and soon you'll get the (new) normalcy you and your wife crave with your son home with you. It WILL happen. Continued thoughts and best wishes for you, your wife and son.

Oh Danny, it is torture, it is hell, that isn't any exagerration.

Surrender. Acceptance. Yes--they're both easy and hard concepts to wrangle in the face of so much pain and stress.

Blessings to you and yours this Father's Day.

V-Grrrl

Danny, God bless you and your whole family. I think all of us who read your blogging can tell how good it is for you.

Hi Danny,

I found your blog from your comments on Shana's blog. I've read bits and pieces and want to read your archives when I have a chance.

First of all, I am so sorry to read about the loss of Oliver. I am saying prayers for your family especially sweet Charlie.

I am so angry for you about the Mother's Day doctor's insensitivity. That is terrible and the very last thing you needed. I am so sorry that you had to deal with someone with so little tact.

Love him, enjoy him and take one day at a time. You are in my thoughts and prayers. I will be looking forward to good news.

Melissa (my maiden name was Miller :)

Danny, please don't even consider not writing about Charlie! You don't know me from a hill of beans (a southern saying), but I have been praying for you and your family and in a strange sort of way, feel like I know you. I think that is how blogger land is! Happy belated Father's day and I am looking forward to hearing about Charlie and the progress that he is making. Tricia Hicks
Hendersonville, TN

Despite my new meds (which I think are working if you can believe it after reading this post)

Danny, you've never sounded LESS neurotic. You sound like a human being going through a terribly hard time with eyes and heart open.

I have just finished reading through months of your blog posts. I was struck by your bravery in not only posting about the roller coaster ride you are on, but also speaking plainly about the joy and pain it brings with it. It is through voices such as yours that other parents will find the strength to persevere. Bravo!

Use the blog for whatever it is that helps you and your family. Don't worry about other people - this is your space. Since finding your blog, I check in each day to see how you and Charlie and your family are doing - I feel like a stalker, but can't help myself! ;) I am a journalist and every day read stories in the paper I work for about death and destruction and loss. But when I read your blog I see a little battle being fought and won in little increments every day. Charlie's is a hopeful story, and we're all rooting for him. I am quite hard on myself sometimes about what a lacklustre mother I can be to my son, how I treat the tasks I have to perform each day as a burden. I let the stress of being a working mum get on top of what is really important, and that is loving my son. When I read your blog, I am reminded that that is the most important thing, so I thank you for your blog. You are a marvellous writer and a wonderful dad. Charlie is a lucky little fella.

Danny and Kendall,
Hugs and big smooches to you both and Charlie.
Bill had another surgery yesterday at Cedars and we finally caught a break. Everything went well and I brought him home. I think of you and Charlie every day with the best thoughts that the Universe can carry. Time for you to catch a break.... no Kanahora... pooh, pooh!
love, claire

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