I love this “Woe Is Me!” photo of Charlie that I took this morning. I just happened to catch this hand gesture which made me and the nurse who saw it laugh. But I’m not laughing at how much it accurately represents the week we’ve just had. I should now get a penalty every time I utter the term “roller coaster” but that metaphor continues to fit, God damn it. I remember last week’s upswings and kangaroo care and can’t help but catalogue the recent setbacks even though I want to stay positive: at the moment Charlie has meningitis which is being treated with antibiotics, his fragile state has prevented him from leaving the isolette all week, this morning he was running a fever and having labored breathing, his extensive bradying and desatting has continued daily (nearly sending me over the edge on several occasions as I stared at that damn monitor waiting for the numbers to come back up), and most disheartening of all, his head circumference growth is off track compared to his weight gain and other growth. We pray that this will pick up, and it well may, but it could be a sign that the brain damage we know he has is even more severe than we feared. So what can we do but live in the moment, right?
Have I already shared my favorite exchange from the movie “Terms of Endearment” between Shirley MacLaine and Debra Winger’s doctor following Winger’s cancer diagnosis?
Doctor: I always tell my patients to hope for the best and prepare for the worst.
Shirley MacLaine: And they let you get away with that?
MacLaine's perfect and very funny delivery of that line helped win her the Best Actress Oscar that year. I was always equally repulsed by that doctor’s platitude but these days I can see the doctor’s side of it. Except I think what Shirley was saying is there IS no way to “prepare for the worst,” what does that even mean?
Most of our interactions with the doctors and nurses at Cedars have been fantastic—honest but compassionate, hopeful but realistic. In all this time I’ve only had one negative experience. Over a month ago, on Mother’s Day, minutes before I was about to visit Kendall who was still in the mental health facility, I was confronted by a doctor at Charlie’s isolette. I’d never seen this guy before. He wasn’t Charlie’s doctor but was just on call for that Sunday. He had looked at my son’s chart that morning, read the information about his Level III and IV brain bleeds and said to me, “I have a feeling you’re not fully apprised of the severity of your son’s condition.” Really, I thought? How would he know that? Did it say in Charlie’s chart, “Father in denial?” He then proceeded to tell me, as I stood there alone, next to Charlie and other parents in the bay, how many parents in our position might consider authorizing them to stop all treatment based on the possibility of Charlie’s future disabilities. To say that this completely blindsided me is a huge understatement. If I’d been attached to Charlie’s monitors, I’m sure I would have desatted my ass off. I probably turned that dusky color they watch out for in preemies. I noticed the nurse backing up after seeing the expression on my face, trying to overhear our conversation.
This doctor then told me that many parents choose to pull the plug sooner rather than later before they bond too much with their baby. BEFORE THEY BOND TOO MUCH? I wondered if this guy had any kids. Could he possibly believe we hadn’t already bonded with our baby? He then talked about the “window of opportunity” where you can take babies off the ventilator and they will die—there’s little they can do once they pass this stage (which Charlie thankfully has). The following week, at our family meeting, our real doctor brought up the topic but said that it was certainly not something he’d recommend at this time. As always, he talked about the range of issues Charlie could be facing in his future if he survived. The way that Mother’s Day doctor chose to give me this information was appallingly inappropriate, but now, six weeks later, I understand better some of the other stuff he told me that was scary to hear. However, I’ve never had a moment’s doubt that we made the right decision in NOT pulling the plug at that time, no matter what happens.
Often the not knowing what’s going to happen on a day-to-day basis, much less in the future, seems like true torture. Other times it’s a relief. Too much information all at once doesn’t work either, especially when half of it is accompanied by, “but every baby is different and we’re not at all sure what’s going to happen with Charlie.” Without trying to sound too dramatic, I can say that life in the NICU is hell. It also brings many moments of joy and wonder and is constantly interspersed with miracles and interactions with amazing, inspirational people and courageous, brilliant medical personnel. But it’s still hell.
Poor Charlie has had his own share of torture this week. A
plethora of procedures that he needed but was not terribly happy to get. Here’s
a photo taken during his 45-minute electroencephalogram on Wednesday (you can see the EEG monitor on the left, charting his brain waves, along with a video of Charlie with Kendall holding him). Kendall was standing next
to him the whole time as I sat paralyzed in a chair staring at the numbers on
the monitor. When I’m holding Charlie I’ve learned to ignore the beeps and the
alarms and just pay attention to him, his color, and his demeanor to see if
everything’s okay. But watching his reactions to some of these procedures can be agonizing.
Directly after his EEG Charlie had his first eye test for retinopathy which they
advised us not to watch because of the scary way they pry their eyes open. I
heeded that advice but Kendall, braver than me, held his hand through it. The
good news is that while his eyes are obviously premature, the initial results
were good—things are growing as they expect at this stage. He’ll have another
eye test in two weeks.
Driving to the hospital this morning, I thought of the word “surrender.” What can we do when we’re in situations like this but surrender and admit that we do NOT have control over the final outcome and to trust that Charlie’s journey and ours will be what they’re supposed to be in the end. Whenever I come to that conclusion I feel instant relief from my desperate desire to control everything which, of course, I can’t, but then I usually get tangled up in the web of that idea and get all confused. Surrender does not mean standing by passively and doing nothing—or liking what's happening. I am actively talking to Charlie, working through my own fears, asking questions of doctors and nurses, educating myself where appropriate (which does not mean Googling every scary term I hear in passing). I rarely achieve the positive aspects of this kind of “surrender,” but it does flicker in from time to time and I’m always grateful for it.
I have a much harder time with “acceptance” although I can see how some would say that those two concepts are inextricably linked. I had a bit of my own backsliding this week, just like Charlie. Despite my new meds (which I think are working if you can believe it after reading this post), there were times when I once again felt very close to that terrifying wall of despair and blackness. I even started fantasizing again, for the first time in over a month, that perhaps this was all a bad dream and I may still wake up and find Kendall happily 32 weeks pregnant as she would have been this week. But I was able to put the brakes on most of my spins and catastrophizing. There are so many actual terrors we’re dealing with right now, I can't afford to borrow trouble or worry about stuff that isn’t happening yet, such as the unknown issues related to Charlie’s future.
I still have fears about writing such stuff on here—is it inappropriate? An invasion of my family’s privacy? Too much of a downer? But what’s the point of writing at all if I only do it on the “good days?” Have I started using this blog as a form of therapy? (Who am I kidding—I guess I always have, even when I was writing about more benign topics such as Margaret Sullavan and Amy Carter.)
When I think about Charlie, I strive to be positive but not in denial, but in our current state of knowing/unknowingness, that is an awfully tricky line to walk. All I can really do is love our wonderful son, and that I am doing in spades.
Danny, do whatever the hell you want to do with this blog, that's what I say. That and I love you.
Posted by: Maria Sosa | June 19, 2009 at 04:10 PM
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!
Posted by: Heather P. | June 19, 2009 at 04:32 PM
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
Posted by: Lori Kirkland Baker | June 19, 2009 at 04:38 PM
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
Posted by: sweetsalty kate | June 19, 2009 at 04:57 PM
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
Posted by: Jennifer | June 19, 2009 at 04:59 PM
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.
Posted by: Sweeney Agonistes | June 19, 2009 at 05:24 PM
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.
Posted by: Margie | June 19, 2009 at 06:09 PM
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!
Posted by: Jane | June 19, 2009 at 06:18 PM
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.
Posted by: Jeff | June 19, 2009 at 07:56 PM
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.
Posted by: maggie may | June 19, 2009 at 08:17 PM
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.
Posted by: suzanne | June 19, 2009 at 09:04 PM
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
Posted by: Marilyn Molnar | June 19, 2009 at 10:30 PM
Danny,
I am holding you in my thoughts.
Posted by: tamarika | June 20, 2009 at 02:14 AM
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!
Posted by: Pam G | June 20, 2009 at 04:24 AM
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!
Posted by: susie specter | June 20, 2009 at 07:55 AM
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.
Posted by: jackie persson | June 20, 2009 at 09:24 AM
As always, thinking of you and your family. You are a beautiful soul and so are Kendall and Leah and most of all Charlie.
Posted by: Leightongirl | June 20, 2009 at 11:39 AM
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
Posted by: Kurt | June 20, 2009 at 04:24 PM
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.
Posted by: Sarah | June 20, 2009 at 05:49 PM
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.
Posted by: Serena Beltz | June 20, 2009 at 06:01 PM
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.
Posted by: Adriana Bliss | June 20, 2009 at 06:03 PM
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
Posted by: n.b. scott | June 20, 2009 at 07:42 PM
Danny,
Everything I'm thinking has been said already. We're all behind you.
Love,
Julie
Posted by: Julie R. | June 20, 2009 at 08:35 PM
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
Posted by: Jan | June 20, 2009 at 08:52 PM
happy father's day to you! xo,m
Posted by: m.yahn | June 21, 2009 at 09:50 AM
I hope this father's day is a good one for you!
Posted by: K Wild | June 21, 2009 at 10:39 AM
Happy Father's Day, Danny. May both your children bring you much naches.
Love,
Cynthia
Posted by: Cynthia Reich | June 21, 2009 at 02:03 PM
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
Posted by: Julia Adams | June 21, 2009 at 02:08 PM
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.
Posted by: anonymous | June 21, 2009 at 05:29 PM
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
Posted by: Compost Studios | June 21, 2009 at 05:56 PM
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.
Posted by: Richard Lawrence Cohen | June 22, 2009 at 09:15 AM
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 :)
Posted by: Melissa in TN | June 22, 2009 at 01:52 PM
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
Posted by: Tricia Hicks | June 22, 2009 at 03:18 PM
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.
Posted by: amba | June 23, 2009 at 07:34 PM
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!
Posted by: MoDBev | June 24, 2009 at 01:18 PM
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.
Posted by: Kimberley | June 24, 2009 at 03:02 PM
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
Posted by: Claire Sharp | September 10, 2009 at 09:32 PM