It was written about a month before Daisy Love Merrick died. Not sufficient that the world should lose such a planetary citizen and surfer evangelist, I lost my writing groove and the whole-hearted embrace of my pseudo-sponsorship of pediatric cancer patients became something of a bad grappling take-down technique when I wrote my best poem ever, and then ruined it, in her name. [Daisy Love Merrick: An Abandoned Villanelle]
The problem? Me. Me: Reductio ad absurdum. A year later, and the problem hasn't changed, budged, morphed, evolved. There's just me and this lump of a blog, and a palpable, chewy, nasty fog of self-pity.
On the up side? Robert Frost's Mending Wall.
Why do I follow and try to support individual pediatric cancer patients? I try to keep it to four at a time, as time, itself, has somehow shown that to be manageable on an emotional and time-management level.
If you've decided, after carefully reading the 1, 248 blog entries comprising elle est belle la seine la seine elle est belle that I am one of the besotted Altruistic and Prayerful Loving People of the Interwebs, then -- Whoa, Nelly! -- do you ever need reading comprehension lessons!
There are times when keeping the number at four is very hard to do. Sometimes, these children are dropping and dying with a swiftness bordering on rude. Sometimes, they (or usually, their parental chroniclers on CaringBridge or CarePages) sneak new names to you, requesting that you stumble and mumble more prayerful stumblemumbles on behalf of the child they just met next door to them at their hospital, or the nifty eight year old who is in crisis down the hall.
These chronicling parents become daredevils at asking for what they think they want and need. They can get downright bossy, pushy, and presumptuous. Most are simply marvelous and in the midst of radical reformation, and the thought of what I might be going through (a cat scratch, having to wait for my first cup of coffee in bed, dropping more carrots on the kitchen floor than actually make it into my stock pot) escapes their attention.
We begin as strangers, and that, to me, is the exceedingly weird part -- how quickly that normally carefully cultivated societal divide is obliterated. Sometimes on "first contact," like a failed Star Trek Prime Directive; Sometimes over weeks and months, as their initial politeness and crying hosanna is worn down by the frustrations of children with raw bottoms and the inability to swallow due to mouth sores and white plaque sneaking down painful esophagi. Oh, and the scariness of a child no longer behaving like him or her self, but succumbing to the metamorphoses demanded by tumors and weird neurotransmitters of that most mysterious organ, the brain.
There is nothing much sadder, or terrifying, than to read: "This is not him. This is not her." Then, they love on, but the mission changes and becomes one of regaining the personality and impishness, politeness, innate loveliness, and spontaneity that were the hallmarks of these little hard beset beings -- a mission sometimes more important, ultimately, than saving their physical lives.
Steroids are often blamed, and I just roll my eyes, as I'm going on my 15th year of corticosteroids. The eye roll is not one of exasperation on my part, but of imagining all the unsaid weirdnesses going on in their home, their hospital room. Thrown food, pouts, rages, moving from ecstatic utterances to gloom-and-doom within 60 seconds. Moon faces and huge guts in children barely eating or the same in children single-handedly destroying the household food budget.
Sometimes all of the official four scheme to die within weeks of one another. Occasionally, remissions and cures and a gradual withdrawal from reportage (they don't need "us" any longer, thank goodness), leave holes in my desired level of involvement. So I will begin to follow some new child they've mentioned as in need... only to have remission turn into relapse. They are all the time screwing with my desired and well thought out number of only four kids at once (plus there is the growing number of alumni of the cured who remain active fighters in the battle to get more funding and attention paid to pediatric cancers).
There is little doubt that precious, precocious Daisy Love Merrick is dying. It's been clear for quite some time. The Merrick's have insulated themselves brilliantly as her circumstances have changed, as she entered the active phase of dying. These are dynamic people, surrounded by friends and family, neighbors and the fruits of living lovingly, wisely, and with generous hearts. They don't need the support of internet pediatric cancer groupies, ready to pray at the drop of a hat, or a wink from their cute kid.
And man, has that had me pissed off.
I actually reentered the world of real prayer for Miss Daisy, for her Mom Kate, for her Dad Britt, and for her sweet brother Isaiah. None of that formulaic nonsense for Daisy, no siree.
A note on "siree," from that favorite former fad, the Urban Dictionary:
it is a word that a gay but popular man used to say a lot, then everyone else said it because they thought it was cool. and now everyone uses the word even though it has absolutely no meaning.No, I'd not fold my hands together -- as if I still could -- and become one of these famous yet scary -- in an icky sort of scary way -- "prayer warriors" whose goal it is, apparently, to "storm" heaven.
I tended to look at her picture, imagine her pain, and wish for it to end -- but end well, for everyone's sake.
Back when I was intimately entwined with a Presbyterian Church, as intimate as one can get with Presbyterians, I'd actually schedule an entire very early morning hour for intercessory prayer. Please note that it never occurred to me to pray for myself and my lacks and needs -- much easier to zoom past one's own sad self to save the day for these poor, god-energy-sucking prayer entitlement hogs. In so doing, I was establishing my Goodness, my Humility, and my everlovin' Love for my fellow man.
It helped me when I decided to quit smoking, because it got me through the day's first coffee hour. I'd sit and sip and pray, no breaks for cigarettes.
Another thing the Merrick's did that pissed me off -- they established a successful, well-run organization on Daisy's behalf and they did it before she died. It has a director and everything. Set up to raise money to pay for her experimental treatment in Israel, it achieved that goal, but is now primed and set to move forward as whatever they would like it to become.
I shouldn't have thought of "foundations" because "pissed off" doesn't really begin to cover what then happens in my evil heart. Every family that loses a beloved child wants to bring about change in the world in honor of that child. Often, the kid herself will have stumbled upon some nice way to cheer up fellow cancer-sufferers while still alive -- collecting and distributing toys or gift baskets, usually. Some, like Kate McRae and her family, concentrate on one or two events, in her case, Kate's Crazy Cool Christmas, where they gather and distribute not just stuffed animals, but gas cards and restaurant gift meals. They remember not just those currently in the fight, but those who have lost, and are in danger of being forgotten during that horrible period when they are too tired, too beat down to care.
But most of the foundations are misguided, most slowly fade away. There is a natural resistance to want to join established, already successful projects because that takes away the uniqueness that was their child -- his name, his image, him. I wish that would change.
And don't get me started on the "christianity" aspect of all this. Lord, lord.
And since when does God need to be asked or beseeched, or even praised, twice? Is this all too much for him? (Fear not, we won't be going *there*.)
I love the Mothers and Fathers who go nuts and vent their anger. Again, almost all devout Christians, they do so with a certainty that their God can take it. They also crack the best jokes.
Every single damn post that I've ever written has been written because I wanted to explain why and how a certain thought, decision, or reaction came into my head. That's not a normal reason for writing, I don't think. But it is mine, and as I try to point out at least quarterly around here, whose blog is it, anyway?
So just what the hell inspired me to write about this 4-kids-with-cancer monkey on my back this morning... Okay, well, afternoon?
Dreams. Angry dreams about my own dying, how it will likely be alone, how I might have been more comfortable these past years if I had sued the pants off of St. Joseph's Hospital, Eric Carson, Steven Sween, Leslie Kelman, and that idiot nurse in the ICU -- you know the one. The Lying Liars, I call this group. I'd add, of course, the then VP of Nursing and every lawyer in the Risk Management Department. Dreams of Fred, tossed out of Marlinspike Hall, forced to become a Cistercian Postulant, under the quivering thumb of the alcoholic Abbot Truffatore.
Which reminds me, I have a draft, a very ongoing draft (other pseudo-writers may know what I mean!), in the works about the Abbot. It begins:
Abbot Truffatore arrived unannounced last night. No, "Abbot Truffatore" is not some exceedingly weird euphemism for "Aunt Flo." He is, in fact, an abbot, more specifically, the local head of the Cistercian monastery whose territory abuts our apple and cherry orchard, divided by Robert Frost's wall -- we meet to mend it, faithfully.*And yes, of course, I slammed that asterisk down so that I could paste Frost's marvelous "Mending Wall" at the very bottom of the unfinished thing. Several times a year, I force its reading. But what am I doing talking of poetry, when I was awash in being pissed off?
I woke angry also at Walmart. Their pharmacy, in particular, which tried to run a scam, the same scam they tried about a year ago, robbing me of $16 and the acknowledgment of a payment toward my considerable deductible. Yes, God bless Barack Obama and the Affordable Care Act, and the creation of PCIP. Now, if someone would just give me the money to afford the affordable.
In my just-under-the-surface-of-sleep dreaming, I also wanted to blow the whistle on the ambulance company that got paid $2000 to transport me from a doctor's office across an alley to the hospital emergency room. And the anesthesiologist who administered the paralytic before being ready to intubate, before sedation, and after being politely asked to tell me what he was going to do before he did it. His epistolary obsession with me has been all about the joy of Double Dipping -- balanced billing, in other words.
And I wonder why I ended up in the hospital with my stomach weeping blood?
I couldn't even start the day correctly. No face-washing, no teeth-brushing, no precisely dripped coffee, no insulin, no morning meds. All I could do was the absolutely necessary Feeding of the Manor Felines -- because Buddy decided to sit on my snoring face.
There was also the still fresh memory of yesterday's phone call to the Mother-Unit. Or day before yesterday. I cannot remember. Such fun to hear yourself and your most beloved siblings trashed by an amazingly astute woman who croons, "Did your Father leave you lots of money when he died?" My body begins to do the shimmy again at the mere thought of that conversation, in which children aged anywhere from newborn to ten were blamed for her maternal inabilities. I think she might be a sociopath.
Anyway, blessings forever and ever, amen, upon Buddy and his feline behind. I had a fever of 101 when he so sweetly woke me, but something made me check emails before hoisting and leveraging myself back into this bleeping bed.
Daisy had already crossed my mind several times, even such a mind as the one I've described, vengeful, hateful. I still see her face at will, at "not will," I still see her face, and wonder.
There was an update. I thought, "She has died." But no, she still lives, though it is hard living. She, good as she is, is trying hard to have a good death. Anyway, her mom Kate wrote the update piece, and part of it went like this:
Daisy is as courageous as ever, full of grace and maturity as she voices her needs without ever whining or being rude. She once again is saving her downy hair for the birds by our house, hoping as they have spring babies they can enjoy her softness.
One last thought, as a parent and as a human being; opportunities to love surround us. When we take those opportunities time seems to stop, and in that timelessness is where memories are made and beauty is beheld. We will never regret rising to the occasion. I believe it has something to do with the fact that God is love and we are made in His image. Suffering isn’t what we are made for, but it can be fruitful in ways we could never imagine.
And so now I don't know what to do with my damn day. I am still stuck in bed, in horrible pain, high fever, and with the mounting frustration of no coffee and bedhead. My feet are ice, my face fire.
But Fred just fed the birds (an ice storm cometh) and made me some excellent coffee. If I wash the remnants of Buddy from my brow, and sterilize my mouth, I'll feel better. A hair band will have to tame the frizzy curls.
And Walmart, St. Joseph's, Carson, Sween, Kelman, and that ICU nurse will all have to fend for themselves today. The anesthesiologist? Pshaw. The ambulance company, as will all of this crowd, as will I, will continue to accumulate karma.
Prayer isn't going to happen either. Yearnings, yes. Some reading. I am reading possibly the worst bit of historical fiction, ever. Ever! So in between chapters, I foresee Mahjongg. Bianca and I need to discuss the terms for her repayment of our upteenth contribution to bailing her out of her umpteenth trip to jail (a lovely apartment over Tante Louise's freestanding garage).
|Pray For Daisy|