Rose & Thorn ― a.k.a. The Hospital Fantasy

“We can complain because rose bushes have thorns, or rejoice because thorn bushes have roses.”  

― Abraham Lincoln

and ... was it Twain who said "If I'd had more time, I'd have written a shorter letter"?  The attribution experts differ.  tldr; all is well, and we are lucky...this is just really, really, really hard.

There's an executive women's leadership course I teach at Google where we reference the "hospital fantasy." Nothing salacious, sorry folks, but apparently up to 78% of working mothers or some absurdly high statistic like that (which I can't recall at the moment, brain=full) have a fantasy where they'd get a slight injury and be admitted to the hospital for a few days. The nurse would take their vitals. Someone would let them stay in bed, bring them water, keep a thorough chart updated on their behalf. Anticipate their needs. Attend to them. Let them rest, retreat, restore, reset.  The home front circus would be handled in their absence - somehow, some way. I admit to harboring a fantasy just like that before this all happened, already close to the breaking point during some of the more vigorous juggling acts of daily life given how many balls were in the air, all at once, and all of different sizes, colors, weights, textures - and how many I felt I often had to catch alone. Aaah, the sheer luxurious thought of it - someone else managing your needs, attuned to your body, your mind, your well-being, your levels of sleep and serotonin and sanity. Feeding you. Nursing you back to your best self.

This here, it goes without saying, is not the hospital fantasy I had in mind.  I've mentioned the incessant beeping of the Chinese water torture medical machines.  I've mentioned the nighttime wake ups, the constant parade of hospital ID-laden strangers, the albatross of an IV that keeps getting tangled around his legs, his arms, his mechanical rolling pole he named "Puppy".  I've mentioned the battles in pinning him down to shove yet more medicine he doesn't want down his throat.  I've mentioned the hopped up steroid-induced manic little boy next to me, clinging to me, who one second is my sweet, mischievous, hysterically funny James and the next is a raging incontinent maniac screaming for cucumber rolls at 4:12am in the morning. I. Don't. Have. Any. More. You wolfed down the 3 packages I bought on my quick foray out to Whole Foods in approximately .54 seconds this afternoon. Good god, son, let me sleep until the *&#^*&%$ machine starts beeping again in 4 minutes.

I have not yet mentioned the shrieks of other children on the floor having a harder day, a harder diagnosis, a harder life than ours will ever be ... and the fact that while I would not wish this experience on my worst enemy, we feel lucky. While it is too early to count our chickens (to blood count our chicken?), we have won the lottery compared to so many of James' dormmates here at Children's.  No more will I compare the size of my kitchen, the newness of my car, the machismo of my start-up unicorn company client list to that of a fellow consultant aka competitor in the silly r@trace that is Silicon Valley (yes, the sitcom is both hysterically funny ... and achingly accurate).  Now I thank my lucky stars that James has ALL instead of AML - one small letter that makes a hell of a lot of difference - that we will be out of here in 4 weeks instead of 42, that he is not on the bone marrow transplant list like his poor, unassuming, delightful 4 year-old neighbor two rooms down.

And frankly?  As far as hospitals go, we've won the lottery here.  He's got his own room, and it is spacious and light, with drawers, shelves, a window to look down at the beehive of activity below. There's a concrete garden on the floor where we can bat around the badminton birdie, kick a soccer ball, practice our layups, slay the "stormtrooper" bubbles with his new electric light saber (thank you Janet C).  There's a playroom with air hockey, Clue, Parcheesi, magna tiles.  There's a resource room with books, paint, pizza nights, a tutoring sign up sheet for anyone who qualifies. Most importantly, there is fellowship here. Community. Support. Camaraderie. The nurses who care, and cope, and deal constantly no matter what the challenge at hand. The social workers who really want to know how you're doing. The doctors who are so totally focused on providing excellent care, making sound judgements with whatever data and tests and tools they can possibly wield to fight the good fight. The fellow parents surviving their own inpatient nightmare who just "get it." I have not mentioned the quiet, warm, knowing conversations with these parents in the mini-kitchens, akin to the jail-time patter of "So what are you in for?"  A whole new dimension of small talk, and one with a strange immediate intimacy to it. We are part of a new brethren now. As a very wise, close friend back in CA with some battle scars of her own wrote to me:

While your experience is unique and your reactions, perceptions and emotions are yours alone - in the same way there is unspoken understanding among longtime married couples and short-hand vocabulary among parents, there is a shared knowing of parents with sick children. I hope that if you haven't already felt it, you will come to know there is strength to be drawn from by knowing others who have the same backstage pass to one of the scariest shows on earth. We rock out pretty hard on this side of the curtain. We love fiercely, we reject judgment, we support without question, and we leap tall buildings in a single bound. We are pretty badass. We also cry on each others' shoulders on the days that it's all just too much and we reach out when we are paralyzed with grief for the life that was...or yearn for the life that will be...or resent the life that is. But mostly, we rock out pretty hard because life is short and taking care of a sick child brings that cliche to light pretty quickly.  - my amazing friend Jenn Rowe, warrior mama, fellow "badass"

While I never asked for a backstage pass to this particular circus act, I'll take it - and try to enjoy the show, shrink from the clowns, embrace the freak show that the new normal will hold.  Jenn, thank you for helping me to see the grace, humanity, courage, and solidarity in that prospect.

A final note:  at home during dinner, Charlie, Grace, James and I often play a game called "Rose & Thorn" where each person shares their "rose" of the day - the very best part - and their "thorn" - the hardest or most challenging part.  I'm realizing more and more that the rose and the thorn can so often be the very same thing.  So even though I know it's not exactly what you meant, this one's to you, Axl Rose. Or wait ... is it Poison?  Every Rose Has Its Thorn- am I now mixing metaphors AND glam metal bands?  F*&# it's late, and I need to get at least 4 more minutes of sleep. Especially since tomorrow it's a hell of a lot moreOpen Up and Say ... Ahh!

https://www.youtube.com/watch?v=Oztkl0GKTng