Afterglow/Afterburn

In the made-for-TV version of traumatic life experiences, the characters in the final scene are frozen in idyllic bliss and a perfect and permanent resolution to the crisis at hand. Cue the swell of uplifting music over the closing credits. Real life is never that pat since human emotions are way more complex than anything we can see in a two-hour story arc. I hesitate to write about how difficult a day I had yesterday AFTER we got home from the hospital because it goes against the image of my “blog character” who seems to have endless reserves of strength, an awareness of the bigger picture, and the ability to find humor in even the most difficult situations. But, fuck it, I’ve always been very moved and grateful when I’ve heard from people in similar situations who found my NICU posts from 2009 because they were frantically googling key words of their child’s condition (as I've spent so much time doing) looking for other people going through their own specific brand of terror and said they found some comfort in following along with our story—especially Charlie’s amazing success after receiving such dire prognoses.

It WAS amazing to be able to come home from the hospital yesterday, but I wonder if others in that situation have gone through some of the delayed angst that I experienced the rest of the day. I feel a lot better today so I’m not sure that I should or even CAN describe the awful feelings that I was experiencing for much of the day and night or the intense self-judgment I was leveling at myself for daring to be anything but joyful. It felt like now that we were finally home, 15 days of adrenaline was crashing into my fragile, sleep-deprived system and any emotional strength I thought I had while in the hospital was gone. Charlie was happy to be back but also very weak after two weeks in bed and frustrated that he couldn’t do what he wanted to do, what he was used to doing. Sometimes when he gets frustrated he starts hitting himself and he kept trying to slap the tender, healing wounds in his head which naturally scared the crap out of us. Kendall, who hadn’t slept in our bed once since Charlie went into the hospital, crashed at around 3:30 for the rest of the day and Charlie followed suit at around 4:30. Unable to get the rest I also desperately needed, my mind kept replaying movie-like montages of all the worst moments of the past few weeks (with some flashbacks of Charlie’s months in the NICU for added color) and I was filled with angst and terror and found that every sound, from our dogs’ barking to the music playing in the apartments across the street to car horns and even dribbling basketballs filled me with rage and panic.

As happy as I was to be home, part of me missed the comfort of Charlie being attached to all those machines that were expertly monitoring every system in his small body (I can only imagine how those machines would have been beeping yesterday if they had been attached to MY systems!). I missed the team of professionals who were caring for my son every second of the day and I had moments of wondering whether we could do it on our own given his various challenges. It’s a weird thing to try to talk about because whenever you have a child in the hospital your constant goal is to get them the hell out of there, but I have to say there’s a certain camaraderie with the people in such environments that I really “enjoy,” if that’s the right word to use.

Yesterday morning, as we were getting ready to leave, they kept sending new people into our room who would inevitably ask us the same questions about Charlie’s history and situation. There was one sweet, inquisitive medical student who seemed insanely young and made me feel like I had wandered onto an episode of “Grey’s Anatomy” except that I felt like one of the residents who was training HER as I explained all the facets of Charlie’s birth, what happened during his first five months in the NICU, and the specifics of his two new operations.

Charlie’s records from his first days at Cedars will always follow him whenever we’re there, including the fact that he was initially known as “Baby Boy 2.” At one point one of the nurses on the floor who was reviewing his chart, said quite cheerfully, “So where’s his twin brother?” Charlie was sitting right there, about to have his IV removed for the last time, and said “What’s she talking about?” It’s not that we’re hiding the existence of Charlie’s twin Oliver who died 12 hours after their birth at 24 weeks gestation, but he’s far too young to really get it and that was hardly the time or place to get into it. “He died,” I said quietly and firmly, feeling more sorry for the nurse who asked the question than for us. We’re used to that kind of thing at this point, it happens all the time, but now that we were on the regular pediatrics floor which butts up against the NICU, I couldn’t help but flash back to those moments that occurred about 10 yards away when we held Oliver in our arms as he died, lifting him out of his isolette for the first and last time to show him his brother who was still fighting for his own life in the adjacent isolette. Oy.

Honestly, I think it’s too soon for me to fully process all the reasons why I was feeling so scared, depressed, and jumpy yesterday, and I probably shouldn’t even be writing about it, but it did get to the point where I asked a friend to drive over late at night with some Ativan she had offered me weeks earlier. I had never done that before but it definitely helped to smooth the edges of my rising anxiety.

And I feel much, much calmer today and truly thrilled on every level to be home and away from the double-edged comforts of medical equipment! Charlie still has a ways to go to regain his strength but he’s the most resilient person I’ve ever known. We had such fun this morning making breakfast together, going around the neighborhood in his little red car, pulling weeds from our lawn, and getting back to our fun adventures. Tomorrow we may even return to Farmers Market to watch his friends the bakers make some pies! 

Comments

[Jane]

Danny, I've never even been in a situation close to yours, but this all makes sense to me, especially the fear and anxiety upon returning home, and the intense exhaustion, emotionally and physically.

Charlie is resilient, in part I think because he has such resilient parents. You have all been through so much. My biggest wish for you all is that the years that follow are happy ones, free of crises.

[Peggy Shecket]

So, dear Danny, have a Doctor? Is there someone that you see for yourself? This would be a great time to have a check- and tell this hopefully attentive and caring person that you're having these thoughts and feelings. It may be wise to have meds on hand for just those rare moments when you need them, but to have a competent medical professional "following" you, and caring for you as you care for Charlie. They may advise changes in diet, too, or other ways to cope with what feel like logical reactions to this most recent trauma. Hugs to you, Danny. That might help, too!

[sue katz]

That you held it together so long in the hospital is one miracle, Danny. And that you pulled it all together again so quickly is another. And that you are able to write it all with such candor and depth so that each of us can relate o those feelings of cracks in our armor is a third wonder in this impossibly difficult world. Thanks, Danny.

[margalit (@margalit)]

Peggy Shecket is right, despite her hilarious last name (shecket in Hebrew is Shut Up). Now that Charlie is tucked away at home, it's time for you to take care of yourself, depending upon what your symptoms of anxiety are about. It is OK to be anxious and fearful, quite natural in fact due to the stress you've recently been under. However that doesn't dismiss the damage that anxiety and stress can do to your body and mind when it becomes chronic. As the Queen of chronic stress, I'm praying that you allow yourself some relief before you lean towards neurosis caused by fear. The starting point for help is to know that you and Charlie are both adored. Now get on the phone and make an emergency appy with your primary care physician.

[Beverly Feldt]

Thanks for your beautiful honesty. You create a blessing for everyone through it. Much love to your family, and my prayers for health, joy and ease for you all.

[Wendy Leve-McClevey]

What you are experiencing is perfectly normal. You and Kendall have had to hold it together for so long it is perfectly natural (and probably therapeutic) that you would fall apart after the fact.

I agree that having a check up might be in order. After all you have been taking care of everyone, isn't it time someone took care of you? But I don't agree that meds are the answer.

Taking time for yourself, laughing, crying, going to the farmer's market, with your son, trying to restore some normalcy and definitely writing about it are better answers than popping a pill.

Meanwhile, we are still all here supporting you and your family.

[Pat]

I am so happy you all are home eating eggs and driving around the neighborhood. I can only echo what all the wonderful comments have already said.

If I'm ever in LA, by the way, I'm taking you up on the offer to stop by and play with the garbage trucks!

[amba (Annie Gottlieb)]

Among many other things, like releasing all the stored-up tension and fear now that it was OVER, I think you were probably terrified to be solely responsible for Charlie in his fragile condition, especially having seen what happened when his CSF pressure climbed. Much as you were impatient to get out of there, it was also a safe place to be. I agree with Wendy that your reaction is normal and maybe better to be undergone and confessed (catharsis) than muted by medication, if you can stand it -- and you can: you did! (People used to HOWL with grief; now they're given Prozac.) You will gradually relax as you see that Charlie is really doing fine. And it is so wonderful to hear and see that he is.

[Dunja]

One of the wonders of the human body & soul is that they sometimes hold together as long as they have to, and once the adrenaline levels start to sink, they crash. It's perfectly normal and has happened to me several times. I've been called ice-cold, heartless and someone obviously without any feelings whenever I stayed calm, relaxed and composed during traumatic times (both my grandparents died within 30 hours of each other, my brother died at 38 years of age), but my system did collapse at some point, just that it was pretty invisible to others, went unnoticed, but came at - imho - a more appropriate time.

All the best for you and your precious family from across the big pond.

[Karen]

This all makes so much sense - I'm glad you wrote about it - it only adds depth to your "blog character," and makes him more human. Not to mention, courageous!

[Laurie J]

I can so relate and have so much compassion for everything you said.

[catherine W]

Danny, I haven't been able to comment but I've been thinking of you and your family so much in recent days. I have never been back to the hospital that treated by twins in their early days, I can't imagine how you must have been feeling and perhaps that is why I felt I could not write anything in response to your recent posts. But I've been thinking and hoping so much.

I think I remember writing here that I wish I could have somehow read your NICU posts in 2008 (although I would have needed to travel time in order to do that!) because you just described the experience so well. I still think about that time, most days of my life.

Charlie is looking fabulous, he is amazing. As are you and Kendall. I was asked, on some stupid school form, today whether I thought my child had any particular gifts in music or sport. I thought I about writing down that she is gifted at breathing (an art that she had to work pretty hard at!) and that she is the most resilient person I know. They never cease to amaze me these children of ours.

I'm sorry for that the nurse picked on the Baby Boy 2. My Jess is also Baby 2. and I do sometimes, even now, get asked where Baby 1. is. Oliver is not forgotten.

Cheering you on, albeit usually silent-ly! x