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!