A day in the PICU is singularly surreal. The people there are all friendly, and aside from the kid that died the night before, it’s a remarkably calm place. You see mostly the same people and after the second day, you start to say hello and maybe one of the other parents comes to see your kid because hers is in a coma and there’s little to do while you’re waiting for your kid to wake up. And you do your best to stay out of everyone’s way while you thank god that your kid is the one who is going home in a few days, that yours is complaining about the episode of Dora you picked out (already seen) or the tray of clears (I just want some ice cream and milk!) or that you leave the cubicle for a few minutes to grab some lunch. And even though she has a chest tube and iv crammed into her neck and needs a blood transfusion and, oh yeah, the tramadol and morphine, even though she is suddenly scared of every move the nurse makes and tells you every three minutes that she wishes she had done this last week, last month, when she was in pre-K…they can’t throw much at you that comes close to the fear that you felt the day before, when you kissed her cheek as she lay sleeping in the OR and hoped that the guy running the machine that was working for her heart and lungs was as good at his job as he was at telling you how to order and feed praying mantises because clearly he senses a kindred spirit in the kid with the tarantula.
Leaving the hospital with the kid who isn’t lying prone in a bed is surreal. The streets all look different when your kid is in so much pain, when you spend so much time trying to give her space. The sky looks strange. The lobby of your building looks like a spacecraft. You come into your apartment and you try to figure out what you’re supposed to do next. You try to imagine waking up in the morning and doing it all over again and literally can’t fathom hearing and heeding the alarm except for knowing that you will catch hell from your kid if you don’t. You lay out your clothes and you throw some words together and you rub your aching back and wonder how your sicko kid and husband are faring and try to have some energy left for the other kid who just wants to have your undivided attention for the rest of eternity.
I am exhausted. I am running on fumes and muscle soother and lip buttah and port wine cheese. I am so grateful for the people at LIJ who are taking such good care of my baby, and I am so, so sorry for the family and friends who lost their baby last night. I sat there holding my daughter’s hand as the machine signaled that their kid’s battle was lost. I sat in the lounge as a man broke down in the hallway, delivering the news and asking people to keep an ear open about what went down and my heart broke. And I am thankful for these lessons I am getting, the reminders that life is to be treasured and that feeling sorry for myself is a product of the part of me that wants to keep from accepting that suffering is part of life.