Hospital II

There you are, sitting bedside, after having been through it. And what do you feel? When the fear and panic have passed, when the battles have been fought and apparently won, when you are on the walk home to health and your routine, you sit there, bedside and you feel one thing so crushingly and immediate you cannot fathom how you will be able to stand it: boredom. You are bored to fits.

All the articles have been read in the magazines, you already made your fifth walk of the day to the cafeteria for coffee, you have no more questions to ask of doctors or nurses, your minutes are gone.

I have to come up with something for these times. Something in advance. Because when you are there you are too exhausted, too out of your element, too pale for thinking. Crosswords require the alarms to not sound on the monitor, writing requires leaving her alone in the room, television requires no commercials because I cannot stand the frantic pace of TV in the hushed world of the hospital room.

I don’t sew. I don’t do mathematical equations for fun. I don’t know how to manicure my nails. I wish I could have the presence of mind to listen to language tapes, learn Mayan history, memorize the calls of the North American Songbirds. Cause you have all this time...

But I find myself buying M&M’s from the vending machine, going to the bathroom, again, making a phone call to my husband with absolutely nothing at all whatsoever to say. I reread Us Weekly looking for clues in paparazzi photos that may tell me something larger about our world. I find nothing, I’m getting fat on M&M’s, I’m bored with a shockingly empty bladder. Time to go get some more coffee.

Surprise!

This past week we took Willa to her first orthopedic appointment. My Costello tarot cards have been functioning quite well lately and so I saw scoliosis in our future and was predictably serene when the doctor informed us that Willa does, indeed, have it.

However, I was not prepared to hear that the ball of her left hip was not in the socket, apparently never has been, and she will need to be in a brace for the next six weeks. If that doesn’t work, full body cast, if that doesn’t work, surgery.

Now, this is not a life-threatening situation by any stretch. It’s not ideal obviously, not good even, but most likely we will be able to fix this problem and prevent other much more severe issues from developing. It was good we found it when we did.

As I was trying to cram Biscuits into her infant seat which did not accommodate the new “extras”, with her pleading and disquieted eyes, in a busy parking lot, with her stroller starting to plot its big escape down an incline, I paused to think… I was upset. Actually, pretty significantly upset.

Why? I know all about Costello surprises. I know that they will come, frequently, and with great force. I know my cards are more some kind of ancient riddle, churning out only so much information and barely hinting at the other realities that lay in store. I know that she’s going to be ok with this, that her doctor will be able to help, that it’s six weeks, that it’s going to pass.

But I wasn’t ready. And here I am confronted with a vision of my future, I never will be.

So what now? I think I shall have to toss my cards in the air and watch them come down like feathers, and blow away. I cannot rely on them anyway. They assist in nothing. All my research, my questions, my reading up, my preparation will at many points in this life come to naught. There will be surprises I had not forseen. But this is where I remember the joy of having a child like Willa. Life is like this, for everyone, at all times. I just get more reminders.

And so I look at my girl in this brace and see her future healing. We are all healing…

Hospital

I’ve never been to Las Vegas, Atlantic City, Reno, none of the fabled lands of the casino, gambling, lights. But I have ideas… I imagine great sweeping expanses of noise and machines and tables and comfortable footwear and no windows, no clocks. I imagine casinos are where time stands still.

Hospitals are like this. You enter the doors under duress, altered, attired in whatever you were wearing when things got too bad to stay home any longer. When you are admitted, an interesting word in and of itself, you commit to being a member of the ecosystem, microcosm, parallel universe that is the hospital.

There is no outside air. Vents whir and dispense their own weather. It always feels the same. There may be windows but you soon realize they are an illusion. These are covered in darkness, shrouded to protect the ill. Through them you will get no sense of what is happening outside. Or if you do it only serves as a stark reminder that there is a world functioning out there that you are separated from, held apart behind glass.

The clocks mean nothing. Hours pass as if minutes or days. It changes. Time itself is changeable and unpredictable. You catch yourself at moments standing in a tunnel. You can see the beginning and the end but are never sure where you are in between. All the numbers of minutes and hours start to blend anyway.

You are surrounded by numbers: temperature, blood pressure, dosage, weight. They tumble out of drawers, fall off walls, pour around corners, leap from pages and mouths and forms you are meant to sign. They clutter your mind and disorient you.

You, in your not right clothes, in your not right mind, in this not right place. It is easy to go dead behind the eyes. To let go. To gamble at these tables without any remembrance of your life on the outside. That world seems so far away now. Dramas happen every minute in here. Dramas we hope never to play any part in. There are miracles too and children. Lovely beautiful funny dopey silly children who still run and laugh and cry and scream in equal order. They seem to be the only ones who can maintain themselves; their childness.

Adults are crushed under the weight of this other world. Without our privacy, our things, our rules, our control we spin like insects missing wings, broken, unmoored. So we have to look to children, seek out their eyes. In them we see an antidote to the pressure. We see maps to lightness, the absence of fear.

Children are so rarely in control of their lives they thrive in these environments, they know to become like liquid in these worlds. They find all the cracks in the façade and one way or another they break through.

How I Made the Break

I have read a few stories now of parents dealing with their children’s diagnoses. The same word keeps coming up in the following phrase: “I was devastated.” Yes, I was devastated too. But I look at this word now and think how incredibly nothing it sounds compared to the violence of emotion behind it. It’s almost a dam against comprehension. Cities are devastated by natural disaster and tweens are devastated Joe Jonas will never love them and the word means the same to each.

I was devastated upon confirmation that my daughter had Costello Syndrome. But here is what that really meant:

It was June. Willa was again in the hospital and every day I was riding the commuter train 2 hours down to Philadelphia to spend the day with her then come back in order to sleep. Rinse, Repeat. This had been going on for a week.

One morning while getting dressed and readying myself for another day on the Cardiac Care Unit I paused. I realized I was alone in the house. The neighbors were at work. The air outside was not yet hot with the day, the windows were open and I could see the tender green of the neighboring trees.

I started screaming. Not crying, not wailing, not asking why, no tears. I just screamed with my entire body behind it.

I broke the dam of devastated. I broke capillaries in my face. I screamed for everything we lost in this storm. I screamed for the disappointment. I screamed for the things we would never have. I screamed for the places we would no longer go in life. I screamed because I will never be the mother of the bride. I screamed because my daughter will never share romantic love. I screamed for the grandchildren I will never have. I screamed and screamed and screamed.

And then I finished getting ready and I drove to the train, took it the two hours to Philadelphia, spent the day with my daughter and then came home to sleep.

Rinse, repeat.

And I never went back.

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