When you have a child, this really isn’t a place you think you will ever end up at. This is the sort of place other people have to use. It’s a good thing to have, but you never believe you’ll be here.
From the outside it generally looks no different than the surrounding businesses. It has a driveway, a parking structure, several stories of reflective windows, and, usually, a valet. The only difference is that there might be some statues of cute bears or other animals. Often there is a playground that can be seen from the street.
Inside, the colors are soft and the decorations are geared to the younger visitors, with maybe a path to the front desk made from The Hungry Caterpillar 🐛 The walls might be decorated with drawings made by children or paintings of children.
You can often smell the cafeteria from the front desk. If you stop by for a bite, there is the usual cafeteria setup with pre-made food and food to order. The cashiers wait for payment and, when you hear the price, you might want to check to see if you didn’t accidentally visit Disneyland.
The walls have posters, and if you only focus on the Disney ads, you might forget for a second where you are and why.
If you sit quietly at a table you can watch the parents and families come and go. If they sit nearby, you might find the conversations dull and ordinary. They rarely match the gravity of their situation. They can’t. Society doesn’t permit it. So they talk about work or the other mundane things of life.
Sometimes, though, they don’t talk. They sit quietly in their booth and chew their food slowly and mechanically. They look anywhere but at each other. You will catch their eye for a moment, then they might slowly look down at their plate, just anywhere but at each other.
Outside on the playground, children play and laugh. Some are patients, some are siblings, both unconsciously are trying to achieve a sense of normalcy the interior of the building doesn’t truly allow.
They seem to have adjusted to their IVs and their wheelchairs, there are even people who will admonish the parents that this is their new normal, as if that somehow makes all this OK.
After a short while, maybe just a matter of days, you’ll know what goes on on each floor. Where is the NICU? Level 3. Where is the cancer ward? Level 4. And you will briefly wonder about the stories of the people who enter the elevator with you and maybe even make up scenarios based on the number they press.
Then the doors will slide open to your child’s floor and any pretense of normal, new or not, vanishes.
You can be the most self-confident person in the world, but only the most self-deceived find a way to peace once they step into the harsh reality awaiting them beyond the elevator doors.
Here, the truth of your child’s situation glares cruelly at you under the harsh fluorescent lights. Here, when social conventions rear their ugly head, they are jarring and reveal themselves to be the ugly things they are. Loudness and laughter and diverting conversation at the bedside of your child is now nothing more than what it was downstairs, pretending in the face of reality.
Most parents don’t think they will ever be here. The situations are never discussed in parenting books. Pre-natal books fleetingly mention the NICU or birth defects. Parenting scenarios rarely are made up of how to parent your child in the cancer ward. So-called experts almost never have experience with being given that terrible diagnosis and the shallowness of their ideas about childhood reflect that.
But here you are, nonetheless. Grappling with the situation alongside all the other parents in the ward who are just as confused and terrified as you. There is no manual, no step-by-step instructions, to help you through. In fact, everything you thought you knew about parenting is wiped out by the enormity of reality.
I wonder, maybe, if we stopped trying to tell parents they are simply experiencing a “new normal” it might not lighten the load. I wonder if the adjustment to this harsh reality would be easier if we let them explain it without the diverting conversation. Maybe if we could get over our uncomfortableness with the idea that children often suffer and even die, we might not be more useful to the parents of those children.
It won’t happen. We are a selfish and vain, even animalistic, species. And none of us think that when we have a child we will end up in a place like this.