There is a strange sort of half life in the hospital. You can see it in the eyes of parents and more so in the eyes of older patients. It's hard to describe. I suppose it looks like exhaustion to most people, but there is something more insidious about how the hospital treats you.
There is a constant desperation underneath the dead eyes and sallow cheeks. With our tousled hair we aren't zombies, but we are definitely living in two worlds. We are filled with hope, it's true, but we also dread the next crisis, beeping monitor, or upset cry. Even sadder to us as time passes is our desensitization to the monitors and beeps and warnings going off around us during the day. This only happens at your most tired and vulnerable moments when you really can't think about much of anything other than the six inches in front of your face.
Usually during this time someone will come to your room and rouse you from this hospital induced stupor and tell you about the result of some test or some other test to come or some medication adjustment or the current status of the doctors on rounds. Very rarely your child will deliver good news herself, through a smile or a happy chortle, or even a boisterous bowel movement (again with the poop!). Rebounding from these truly transcendental, but empty, moments is odd. You see parents and patients alike look around with dreamy expressions, and some reach for a cold hospital drink from one of those universally bland and unappealing opaque ribbed plastic cups with an aluminum foil 'cap.'
Some say a word or two to their partner, others take a step or two from their room or pod, and many turn to their nurse for comfort and support in the form of good news or a silent smile. You recognize all these emotions and feelings in the faces around you and you almost push yourself to ignore them rather than pity them, because if you let pity exert itself for them then you begin to let it feed on your sadness as well.
Sadness here isn't really about tears, so pity doesn't usually take the form of someone hugging you or holding you tight (though that is often what we really need) when they visit the NICU, or CICU, or CCU. Instead people see these babies wired to machines and struggling to breathe or they watch us practice putting tubes down the noses of our babies and they say vague self-insulating platitudes like, 'It will be OK' or 'Don't worry, she's in good hands.'
You register these things in the back of your mind and you smile at the appropriate times and nod at the niceties but you really just feel the strange hospital sadness all the more. Your mind whispers things like, 'She is NOT ok' and 'I KNOW she is in good hands, but what the hell does that have to do with anything?!?' and you dismiss these thoughts quickly because you know that reality is not what most visitors want to see or talk about.
And that's ok, because pity here in these wards is about the depression we feel as parents of a CICU or NICU baby; our days drag out in marathons of emotional and spiritual endurance and we silently pity each other and you almost feel yourself giving whatever will you have left out over to the parents and people around you. Pity here is hoping for others, that if you can will them well, or watch them survive then you know you can survive your own sadness and your own race against whatever is hurting your loved one.
In some ways the pity we feel for ourselves and each other leads to hope that together everyone makes it through. As families pack up and leave the hospital or the Ronald McDonald House you know that some made it and they are leaving with their child and new time together as a family. You know too that some have left their children behind, or that they will meet them again in their hometown or home state for one final goodbye, but you can see them walk out with their heads high and their arms around one another knowing that they gave all they could and used all the willpower we and others gave them, and that in this case their best was simply not enough. And as horrifying a fact that is, it is still enough for families to make it together.
All of that said the life we lead here isn't natural. I don't know what to make of how I spend my time here at CHOP. I'm not a teacher here and I could give a dog's fart about anything outside these walls, but I have to still make sub plans and come up with lessons that I don't teach and don't assess and really don't even think about until 2:35 each day when I wonder how many, if any, students misbehaved.
I have two daughters here, one I see only part of the time and the other exists in a strange world of tubes and wires and pumps and blenders that is undoubtedly foreign to me. Both of my girls are in some ways removed from me as a father. It's hard and a struggle to find a pattern here as a dad, for either girl, and just when I feel like I'm hitting a stride and improving everyone's quality of life I leave and let all that progress slip into the filtered air ducts of CHOP and the CCU.
Or at least, that's what it feels like when the hospital half-life has you in its grips. During moments when you look into your newborn's eyes, or splash in the water with your 19 month old at the Please Touch museum, you know that you always make a difference and that love lingers longer than the pain of separation.
See that's the thing about hospital half-life. And maybe it's what makes it so punishing on everyone here - you don't control your future or the future of your loved ones as much as you can on the outside. Your life goes and stops on the words and machines of other people. It's almost like the tortured half-life you see in people who live in airports, shuffling from city to city, dependent on professionals who move people through the air safely and (hopefully) quickly.
Folks here yearn for an end to living on someone else's schedule and by someone else's words and medications and tests. We trudge through all of this day in and day out to get back home to our friends and loved ones so that we can hold hands outside the hospital and hug each other knowing that what we've made is a family stronger for the struggle and one that still believes in hope and miracles and the power of real human love. It's not a bad thing, this hospital half-life, it's just a quasi state of existence that's hard to understand unless you've lived it yourself. And I think that's a good thing.
I have no words, but my thoughts and prayers are with you.
ReplyDeleteWow Charley. Your post was very moving. The thing I am thinking about is the intensity of emotions you feel and are exposed to when dealing the kind of challenges you are facing. A hospital for sick kids is by no means what I would call a "happy" place, and as you described, the majority of what one feels and sees others feeling is not pleasant. But, and probably because of this fact, seemingly ordinary events and interactions can feel overwhelmingly joyful. It is great that you wrote this post down. For one, it is good to just get this stuff out of your head. Your friends are here reading along and trying to share in your experience. Another reason is that years from now your recollections of this experience will no doubt blur and re-reading this will likely transport you right back to the moment. I am sometimes grateful for the opportunity to remind myself to try to keep some of the urgency and sense of the preciousness of life I felt during those NICU days. A hospital tends to be quite good at doing that. Hang in there.
ReplyDeleteHey Charley. This post brought back a lot for me as well. There's a professor in my department who had a baby with some congenital issues, and she was also in the NICU for a long time before coming home. Being a psychologist himself, he's thought a lot about the toll the physical place takes on your mind and emotions. There are a lot things to think about how the physical space wears you down - as you said, the lighting, the monitors, confusion of day/night, the beeping, the alarm codes, etc. -- then there is your own emotional experience and the experiences of those around you. Another NICU mom and I have shared that after our girls came home, we only started to really realize the toll the experience had taken and the fact that it is just enormously difficult for others to relate to without experiencing it. That doesn't mean the support of others isn't helpful and valid -- just that sometimes even amidst people's best efforts to support you it can still feel really lonely and uphill. And, I think that sometimes the hospital staff themselves can make it hard because they can't put themselves out there fully or they'd never survive their work, so sometimes they can be some of the hardest folks to be around because they offer their own defensive reasoning like, "She won't remember this." "Or, the NG tube doesn't bother babies because they don't have the experience of not having it." Or, whatever other rationalizations they tell themselves to be able to do their jobs, and thank God they do, but it doesn't make them any easier to hear as the parent. My heart really goes out to you and Jillian. As Jason and I said to each other many times -- and honestly still do -- a special needs infant is a marathon, not a sprint, and whatever you can do to support yourselves, each other, and your children, you do. Keep your family unit close and protected -- you all know what is best for yourselves, and getting through this together will become a part of your shared family history. It can feel like you're hardly parenting, but believe me, you are.
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