Praying for a Boring Day

I’m so grateful for all the people who have expressed concern about our family situation so I wanted to check in with a short update. We’ve had a few setbacks over the past week. I am pretty wasted emotionally and physically and need to figure out how to start taking care of myself. Kendall is back in the hospital for the moment. We had a meeting with Charlie’s doctors yesterday and while he is still very critical, there was some positive news about his condition. They thought the hole in his heart (PDA) may have reopened but they did another echocardiogram and it hasn’t, thank God. He finally pooped which is excellent because otherwise he may have needed surgery which could have been bad news in his fragile state. He’s still intubated but his oxygen levels are way better than they were. His eyes, which were fused shut at birth 10 days ago have opened on their own, at about the time they would have done so in utero. That is such a miracle to me. The biggest concern remains the two brain bleeds he had but there’s no way yet to determine what effects those will have on his development. At this point, of course, I just want him to survive, we can deal with any disabilities later. He’s an adorable baby and he moves around a lot which is a good sign. He’s gained a little weight and is back up to 1 lb. 8 oz. He still can’t eat but hopefully that will change soon. His hair is growing and is reddish/strawberry blond. I’ll try to post more pictures soon.

I spent a few hours with Leah last night which was heavenly. She’s just back from Chicago where she attended my nephew Spencer’s and my dad’s joint Bar Mitzvah last weekend. She showed me all of her photos and it was simultaneously fantastic to see them (“Go slower, go slower,” I kept shouting, wanting to examine every face and moment) and surprisingly painful. Seeing all of our family and friends who came from near and far in the photos, it almost felt like I was dead and I was watching my loved ones from the other side. Oy, does that sound too dramatic? Don’t be scared, I’ll be fine. By all accounts Spencer and my dad were spectacular on the bimah and the party looked like it was a blast. Both Oliver and Charles were mentioned on several occasions. I’m already looking forward to my other nephew Sammy’s Bar Mitzvah in three years.

I crave normalcy, or at least a lightening up of major drama. I think of Holocaust survivor Gerda Weissman Klein’s speech at the 1996 Oscars when she won the award for the documentary about her life. In that speech she urged everyone to value the everyday moments of life and the gifts of “a boring evening at home.” Oh, how I long for boring! I don’t think I’ve even begun grieving my son who died, I guess that will come later. Yikes, I really didn’t mean for this post to sound so depressing and, believe me, I can’t wait to be writing about other topics. I tried to start that other blog I mentioned about Charlie but I think I’ll just keep it all here for now. I’m beyond moved by how friends, family, and strangers have been there for us. People I barely know have met me at the hospital and helped me through difficult moments. Bloggers who recently lost their own children and are in the midst of incredible pain have reached out with comfort in amazing ways. There are definitely gifts to be found in the midst of tragedy.

I’ve barely been aware of anything that’s been happening in the world and I hope to inch back to that, along with my work. I know that normally I would have written a post about the wonderful Dom DeLuise who died on Monday, especially since the DeLuises are friends of Kendall’s family. I met Dom many times and he was hysterically funny in real life but we saw his wife, Carol Arthur, much more often. Carol and I must have similar interests because it seems like wherever I go, whatever play, screening, event, there she is. I worship Carol, she is one of the nicest women on the planet. Dom and Carol had an amazing marriage, lasting over 43 years. Carol is an actress in her own right, and I may be one of the only people who have on my iPod the soundtrack from the London company of “On the Town” from many years ago in which Carol played the man-hungry taxi driver Hildy Esterhazy, the part played by Nancy Walker on Broadway and our pal Betty Garrett (who turns 90 this month) in the MGM film version. Carol was brilliant in the part. She lent me the tapes which I digitized for my iPod. I haven't read any of the obituaries about Dom but I will never forget his appearances on TV, movies, and in Kendall's mother's living room. Oliver has an increasingly interesting group of folks to hang out with up there.

Comments

[tamarika]

Dear Danny,
Be kind to yourself. You don't sound depressing. You are processing so much, so much. Thank you for sharing all these thoughts and feelings with us, and keeping us in the loop of your life.
I am holding you in my thoughts.

[Julie R.]

Danny, thank you for continuing to write in your blog. It's nice to know what's happening. If I were in L.A. I would meet you at the hospital with healthy snacks and hugs. Speaking of hugs, please give one to Kendall for me and tell her I'm sending her a virtual venti hot chocolate with raspberry syrup.

Here's hoping for boring.

Love,
Julie

[Bob Clark]

Dear Danny,

You are being incredibly strong, as you must now. But do be good to yourself. Thanks for this post. I've been thinking 'bout you all and am glad to hear things are going fairly well. (I know the importance of the first poop from when Carmen was born and in a critical state. A real hallelujah moment.) Take care.

[Alan Goldkin]

Danny, thanks for taking the time to update. Why is Kendall back in the hospital...I don't think that you mentioned that above.

Cousin Alan

[someone that cares]

there is something waiting for you at the NICU parent sign in, under your name, Kendall's, and Charlie's patient name. Be sure to ask for it.

[Laurie]

In the latest People magazine (the one with Kristie Alley who gained 83 lbs. on the cover), there is a wonderful article about six different preemies. They were all born at around the same weight as Charlie (between 23-26 weeks) in the mid 1980s and they are doing wonderfully today. I think you would enjoy the article.

[Otir]

Dear Danny,

Thank you so much for your post. I find it extraordinary that you find the fortitude to come and share with strangers about what you are going through. Believe me, it gives a lot, and I am relieved that you see people wanting to support you the way they can. I hope Kendall finds the same and that she is not going through trouble of her own.

Be gentle to yourself, you need not to feel for the others, and I hope we all will let you room and space to grieve when you are ready, it may take time. Remember to celebrate life. Please allow me to mention Charlie's name in our Misheberakh list.

I also use to share with anyone who may find comfort in listening to this version of Misheberakh (Heal us now). Allow me to share with you now too.

[Kitty]

Danny,

I have never run into you in real life, but have regretted for years seeing Kendall at a WGA event and NOT GOING OVER to say hi. I feel I know you both a little from your words; both of you have made strangers care about you and what you're going through. I continue to wish you the best and pull for all three of you.

[Leightongirl]

We are thinking of you.

[Shawn Anderson]

Dearest Danny:

I want you to know that I think you & your wife are wonderful human beings and to take the time to post updates when you are going through so much, grieving and trying to grieve is by no means depressing!!! You have brought tears to my eyes in your sharing of this difficult time in your lives. I look forward to your postings all the time and you never cease to amaze me!!! I will take you with all your laughter and your tears.....because you have moved me to both. I wish the best for you and your lovely wife, may sun shine upon you always from this day forward!!!

[Shannon]

Please take care of yourself Danny! Thanks for letting us know what is going on, you have hundreds, if not thousands of people sending bright light and love Charlie's way. I never thought I could be so happy about a baby's poop. I can't wait to see pictures of his red hair.

[Cynthia Reich]

Dear Danny,
Since Julie is too far away to meet you at the hospital, I would like to stand in for her. I know you're swamped and exhausted, but please let me know if we can arrange such a meeting.

Love,
Cynthia

[Gordon]

Dear Danny,
I'm glad to see that you're writing. It's probably the best thing to get you through this rough period in your life.
Maybe this is a sign that, from now on, you shouldn't sweat the small stuff. Compared to this chapter, isn't everything else small stuff ?
Cheers.

[Wanda]

May you be blessed with boring soon. I am so glad your son is improving and I hope Kendall is back home soon.

Nothing to apologize for here. You are where you are in the process and I am glad you have the support you need.

Hugs all around...again and still.

[Pam G]

Thanks for the update and the interesting insights about Dom Deluise and Carol Arthur as well as news from the bar mitzvah. You remain in my thoughts and I hope for the best.

[Kären]

Danny, I was wondering just yesterday how you, Kendall, and Charlie were doing and was going to write. Thanks so much for the update. It sounds like he is a fighter and I'm so glad you got to see his beautiful eyes. Do make sure you take care of yourself as well. You're so important to us : )

[Heather Moss]

Danny, I got way behind on my Google reader and so only just read about Oliver and Charlie. I am so very sorry that Oliver didn't make it. You and Kendall and baby Charlie will be in my thoughts and prayers; I hope he will continue to fight and thrive. Take care.

[Beatriz Mazoy]

In my experience in a NICU with my daughter Carmen that I´ve told you, I clearly remembered this strange "out of time and space sensation" ;my husband and I lived during this month in a kind of bubble,praying for a "boring evening".
I wrote all my feelings and sensations in a book which I hope to read with her in the future:try to do something like that for Charlie (obviously you will do a wonderful book)I´m sure that will be very helpful for you too.
Again,all my prayers are with you and your family.

[Judy]

Liam Neeson told students that art "builds from pain, from misery, from a deep-seated hurt, a monument to the human heart that shines like a golden dome among roofs rain-glazed and leaden," according to Irish Central. (From Today's Huffington Post re his getting an honorary degree.) For both you and Kendall:Keep writing. May my prayers and thoughts help ease your pain. I know that expressions of sympathy help me as I am grieving my own recent loss.

[Judy]

Liam Neeson told students that art "builds from pain, from misery, from a deep-seated hurt, a monument to the human heart that shines like a golden dome among roofs rain-glazed and leaden," according to Irish Central. (From Today's Huffington Post re his getting an honorary degree.) For both you and Kendall:Keep writing. May my prayers and thoughts help ease your pain. I know that expressions of sympathy help me as I am grieving my own recent loss.

[mimi]

Hi Danny,
I wish I were there with you all. I am so thankful that Alexis is there with you now. I am keeping updated from mom and Lexy and am standing by to do any and everything ya'll may need. I miss Kendall so much, right now, and am anxious to speak to you both, soon( I sent you a text message awhile ago....) and continue our vigil down here in Texas for our California brethren.
love love with ALL my heart,
mimi

[churlita]

I hope things get better and better for you guys and that you get all the boring evenings you can handle as soon as possible.

[Sarah]

SO glad for this update. I thought about you when Dom DeLuise passed away. Remember the days when THAT would dominate your thoughts? Those days will return. Charlie will be running around your house, exploring everything in his new, fascinating world and it'll seem like he's always been that active and full of energy.

Wishing you a boring day. :)

xo,
Sarah

[Danny]

Thank you everyone, and to "someone who cares" mentioned above, I was given your incredible bag of goodies today right at Charlie's incubator. I wish I knew who you were, clearly an angel or angels of the highest order! I am continually stunned and moved these days by the kindness and compassion of friends and strangers.

[OldOldLady Of The Hills]

I've been wondering how things were going, Danny....And I am so glad you updated us on 'the happenings'...Sorry to read that Kendall is in the Hospital...I hope she will come through with flying colors...And I am glad to hear that Charlie is still more than holding his own....You take good care of yourself, my dear....Prayers are coming your way for ALL to go well and be well, too.....(((((((HUGS)))))))) To You All.

[Dave]

Not sounding dramatic at all. You're surviving a devastating blow. If you can take any comfort in the well wishes of friends and strangers I hope that you will. It's great to hear the updates, make them as often or infrequent as you see fit. This is your time. We who have never met you will be here whenever you're ready to share. Or even if you don't. We'll still be here.

You and yours are still in my prayers.

[Jeryl Chico]

Dear Danny,
Thinking of you and your family on this, your first Mother's Day. Wishing you all a peaceful day, enveloped in love and warmth with your beautiful son.
~ jeryl

[Julie Voss]

Thanks for taking the time to update your blog. Considering what you are going through, I think you are coping with all this extremely well. Some days will be terrible and others filled with joy and hope. You will be on a roller coaster and will need to live in the moment with all the ragged emotions that come. Do try to take care of yourself so that you can be a good parent to Leah and Charlie. Love to your whole family, Julie

[Jay]

Take care of yourself. These are tough days, but Charlie isn't the only one who has to do some growing and healing. Nurture yourselves also.

[Ellie]

Blogging is a brand new experience for me. (New technology scares me a bit.)I came across your blog a bit randomly and it struck a chord. A nice Jewish couple with a sick baby. I haven't had time to read very much but I am glad to see that Charlie is doing well. I read a bit of your family history and I intend to read more when I have time.
I am what you would consider an ultra-orthodox (or possibly Chassidic) Jew so our worldview and politics are very likely polar opposites. I am, however, a mother who lost a child after a ten month struggle that was never expected to end well. My Yehoshua Leib was born 10 days late, a double footling breach with a prolapsed cord. We were never able to bring him home. He would have been fourteen this past November and his yahrzeit is two days before Yom Kippur.
There is so much in what you write that touches my heart and I am so happy you have Charlie to bring you joy. I was blessed with a little girl two months after YL's passing and it did much to help us heal. I am writing this to tell you that time really does heal. I would never have chosen this challenge but I can see now that G-d sent me this challenge to help me grow. YL had an older sister and two older brothers and I have had another girl and then a boy since. My appreciation for these gifts and my relationship with them is something I would not have had I not gone through hardship and the introspection that goes with it. Fourteen years later I can honestly say that I would not change anything (although I still cry on his yahrzeit!) Be strong and I hope you only have simchas from now on.