Where Have All the Flowers Gone?

I don’t think I’ll plant seeds this year. For the first year in almost two decades, I don’t have it in me to seek out the magic, the pride, the miracle of putting a dirt-colored dot (or slip, or similar shape) into the earth and wait for it to rise in beauty and color and scent.

No, not this year.

My brother has stage IV pancreatic cancer. He is 47 years old and I adore him more than I can say. His talents and gifts are more prolific than I can list, so I will leave you to imagine, and I would ask that you take your time because the list is long and rich and varied. I can tell you that his children would be at the very top of this list. His wisdom and strength would be absolutely at their heels. My brother has walked through fire, survived burdens beyond my understanding, and he has always, always made it to the other side–bowed, tired, maybe, but even that, only briefly. He emerges upright. Goddamned upright.
But not this year.

This year he will most likely leave us. Over 94% in the first year and that’s on luck's whimsy. I’ve written before that I understand how he would so hate to wither under this cancer, and that I can only ask God give him a gentle road Home. I cannot ask my burly bear of a brother to fall frail and brittle with this treatment or that, just to put off my own feeble grief. God, how I hate this. Truthfully, I am completely, really completely weak and watery and pathetic and scared. There is no noble about it. No Greater Good, no wisdom, no courage anywhere in me. Please absolutely know that. Rather, it’s all I have in the linty corners of my soul, it is all I can ask. It is the scraps and shreds of whatever hope I may have ever had for him on this cancer firewalk.

My prayers are base and dark now. I pray not to be this weak and watery mess when I must be more–for him, for his family, for my sons. I pray not to fuck it up, and I think God knows me well enough to know that the F-word thing is just preciselywhat I might do, so He lets the bad word slide. (Granted, my theology is a bit um…broad, but that’s another day’s prayer.)

How can I let him go? This Most Magic Uncle to my sons…my oasis of sane in a vast lot of crazy-sand. How is it that such a ragged hole should be torn in the very thin (think cheesecloth) fabric of that which gives me hope?

Ahhhh…God never tells me anyway.

So as bound as I am to the seasons, the weather, the earth, I can’t find a reason to do the beginning thing of Spring that tugs at me just as firmly as the pull of my sons’ small hands

No, not this year.

This year, Oh God, this year I will most likely see my brother be given to God’s earth instead. I will write for him, about him, to him. I will try very, very hard to not fuck this up and not fall entirely and irreparably apart. In that order.

So you see, this year is different. I won’t bother scanning rows and rows of seed packs–Zucchini or yellow squash? Cactus or Mop-top Zinnia? Mounding or climbing nasturtium? It’s embarrassing to admit how much free time this omission will leave me, by the way. But then, there’s none to waste. This season is one in which I must consider other things. Flowers, vegetables, herbs take energy and hope, and I just don’t have it to spare.

Not this year.

Hidden Under all that Big Top

He's smart, so smart. He's magic and magnificent and absolutely maddening. Not so much the talker. Strong silent type, my son.
Tonight his therapist asked him a question about the circus, and this is how that sort of conversation usually goes:
Therapist: Did you go to the circus?
LRHF: circus.
Therapist: What did you see at the circus?
LRHF: see at the circus.
Therapist: Did you see elephants at the circus?
LRHF: Elephants at the circus.
And so you get the idea.
(Mind you he is totally phoning it in. He is so messing with us...all his words, packed a little funny, yeah, but all in there, shared rarely and received gratefully--if you can imagine how frustrating and sad it is to know this, and yet how secretly my heart jumps at this very same knowledge--a conundrum, I know, but true just the same)
Anyway, tonight, the therapist asked him a question about the circus and it went a bit differently:
Therapist: Did you go to the circus?
LRHF: Circus.
Therapist: What did you see at the circus?

(Hang on now...)
LRHF: Horses and clowns and zebras and cars and tricks and elephants...
Sweet Jesus, what a list!
So many things, so many words, so much engagement! My beautiful magnificent, if slightly mis-packed son!
He's there! He's there! He's there! Oh, I have always known he is.
And yeah, that's great, but here's the thing: yes, he's there, but he's sort of in the next room, if you will. Sometimes he comes to the doorway and peeks around the corner at me, and sometimes I tiptoe to the doorway and reach out--almost touching him, so close, so absolutely maddening! And then the distance moves between us like a returning tide.

But.
I do believe that there will be a day, any old day, when he peeks and I sneak at just the same time, and we touch with our words and our eyes and all the things we take for granted with our typical children.
He's there.
And another thing: He knows him some circus.

"And Oh, How They Danced...the little people..."

If you recognize the title of this entry, rest assured that I know that you know that I know how old you are and I will not tell. 

Promise.

(If you don't recognize the title, then your sociological and musical canon is tragically lacking .Find a copy of "Spinal Tap."  Still funny after all these years.  (Still not telling how many...)

Good Party today.  Bit of madness, totally forgot the puffy-paint treatsacks, needed help tweaking the stew (curry and raisins did the trick), and (of course) was still in the shower when the first guests arrived.
LRHF opened all the presents as they arrived (and then updated  Thomas the Train a out each one on his pretend phone call.)  In the end, he (LRHF, not Thomas) passed out in the middle of the yard curled up under the rainbow parachute.  What a life, eh?

But how sweet to see people know and love your very different child.  To appreciate what makes him so very different. To take pleasure in his progress.  Maybe you haven't seen this, maybe you don't have an autie, or special needs kid (and that's really okay),  but trust me when I tell you that it is rarer than April snow. 

There is something so joyful in watching children play outside.  Please remind me of this when the next round of birthdays roll around and I'm eyeing up "Pump-it-up" as a venue. This is a party.  Hanging out and watching kids do kid things.  Knowing that if you look away for a minute, your kid will still be okay.  I confess I sat in the playhouse with another mom for over an hour just comparing notes on crazy.  We had beer just in case we felt dehydrated. 

It was good. 

It was the kind of party I imagine we'd have if we had family.  I'm probably wrong--everything imaginary looks good, but it's what I would want for my sons.  And so we make our family for their sake.  Hell, we force a family. We meet our neighbors and learn their names and find out how similar we are, how much we have in common, how varied and rich our talents and dreams are. And it feels like family.  (I think.  I am woefully inexperienced in this area.)

So often, I write of the ghost town my family has become, the distance between old friends.  So much more, with my brother hanging in the balance.  I don't undertand, I won't, and I can't pretend I do.  It hurts and I am scared and saddened, but it is what it is, you know? 

We made new friends today.  My sons made new "best" friends.  They ran and chased and yelled and jumped.  Then they all the obligatory melt-down. But it was good. 

Just for today, I stepped outside my tight little circle of sad, and yeah, I know I can't stay outside of it for too long, but I'm so very, very glad for days like today because even the smallest bit of light eases the dark.

And guess what? Next week we'rehaving a hoot-n-nanny!

 I can't wait.

Party On!

Finally. 
Almost a solid month after the fact, we will actually celebrate the twins' seventh birthday tomorrow.
How pathetic is that?

Well...see, with every passing weekend, the days get longer and there's less of a chill in the air. More chance to play outside. Less chance of too many little kids tearing through the house freaking the cat.  And if LRHF is going to be barefoot, as is his want, we should do what we can to make it seem less absurd.  No small task. 

What did I do today?  More importantly, why do I have so much freaking crap to do tomorrow, and why does so much of it involve puffy paint?

My babies are seven.  SEVEN. That's two syllables, which is twice as many as they had last year when they turned six.  Seven.  Good God. 

So much changes in that double-syllabled time frame.  I've lost all my grandparents, my mother drifts ever farther from, well, everything, then there's autism, autism, autism. Oh, and of course, there's the autism. And,now, my brother begins his journey Home, too soon, too quickly, and completely without my permission. 

And yet. 
We celebrate. We jump on the trampoline, we swing on the swingset, we play in the playhouse.  Good, basic stuff.  I hope they remember these low-rent so-not-at-Pump-It-Up parties as our gifts to them, our our sharing of them with our little low rent world.  We love the lives of our boys, LRHF's coy and stubborn smile, Fuzzy's e.e. cummings observations...they are so very different, so very lovely, and so very mystifying, even after seven years. 
I wish...I wish my family knew them, my sons.  I wish that for them, and it makes me sad. 

For now, tho, I need to find more glitter puffy paint for the treat sacks.  I think about all that other stuff later.

Maybe.

Priorities, you know.

Funny Man

Spoke with my brother yesterday.  He's still in the hospital, and there's still not much to do but pray. 

And cry.  I'm like that with the crying.

His response?

 "You just shouldn't worry so much.  It's not healthy."

*sigh*

Oh.  Okay.

Prayer

His kidneys won't tolerate the chemo.  There is nothing left but prayer.

It's just that way sometimes. And I hate it.  But here we go, all together now:

Lord, have mercy.
Christ, have mercy.
Lord, have mercy.

I would ask that I can do what is necessary, and that I can do it without fucking it up too much.  I would ask that I can do these things and not lose sight of my own family, my own small sons, and that I can discern between my cowardice and my stubbornness. This is not my strong point, so it will be um...interesting.

I would ask for Grace, and that my brother be given his best, most gentle road Home.  I would ask that I be propped up (somehow, Dear God, but that will be some kind of propping) enough to offer a hand where I may.

Here's the thing:  In my heart, I suspect that God knows how fiercely my brother would hate to wither under chemo and this med and that med and maybes and try-its.  So while my own heart breaks wide and raw, I guess I can only ask that God, who knows us so wholly,  grant my beautiful brother that which He knows he most needs.  I will strive to be glad for this (which will take a Red Sea-sized miracle), and to know it as kindness and a mercy (walking on water miracle).

I cannot ask my brother to wither.  

(Man, if you could see what a freaking runny pile of water and whining I am, it would totally make that up there seem like bullshit.  We both know no way I can do that stuff.  How pathetic when one must pray for strength to pray.)

And yet.

Lord, if You would...re-read that stuff and consider it.  And if You're taking stupid requests, I would ask that my brother get to see another summer...

Amen.

What's Love Got to do with it?

Tonight we went out to dinner for Valentine's Day, and while I know that you proably did just the same, in some fashion, this was the first for us in a long damned time.  Because seven years ago, just after midnight on Valentines Day, we got a phone call.  The twins had been put in the NICU a few days before, because Fuzzy, who was very much, even then, quite fuzzy, caught something  icky from his petrie dish older brother and cousin., and he was stable...but then we got that phone call.  We should get to the NICU, they said.  Fuzzy had been intubated to help him breathe, and they just... didn't... know...
I asked to speak to the doctor, who wanted to know if we'd previously lost any children or if we were first cousins.  Yes, indeed, it would seem that we did need to get to the NICU.

How harsh, to bring home big strapping twin boys, only to return them days later, with no guarantees. 

And we went, so early on that Valentine's Day, and we sat by Fuzzy's incubator and I held his tiny, so tiny baby-hand and I must have seemed even more clueless than most parents who might find themselves in the NICU in the middle of the night, because the nurses eventually and very gently suggested that it would be good if I sang to my son.  So I did.  I sang hymns and bits and shreds of lullabyes, but my set was mostly Johnny Cash and Merle Haggard, with a good bit of John Denver thrown in.  It was all I knew.  All the songs of my childhood, hymns and hard drinking country, I sang them all.  

It was endless and horrid.  We slept in shifts on sofa cushions in the waiting area.  We fielded calls.  We checked on Big Boy.  We prayed.  I cried.  My husband kept hold of me, always, always, he kept hold.

My Fuzzy is seven now.  Brilliant and funny and insightful and, well, fuzzy.  Dodged that bullet, sure, but until tonight, I did not acknowledge this holiday because it was the day I almost lost my son.

Now, this Valentine's Day, it is my brother, who hangs in the balance.    Before he had his first chemo today, he went to all his jobsites and collected  his tools, and that simple, practical gesture, says quite a bit  more than I can without falling apart. 

I sat across from my husband tonight, like a million other wives.  We shared a meal and we shared words of devotion and love.   But I wept--(so not a turn on, by the way).   Seems that this isn't a great holiday for us.  Not so much about love,  but about loving and losing, or almost losing, or eventually and always losing. 

And Fuzzy?  He is named for my brother. Interesting, no?   He carries my brother's name with all his seven year old pride, just as we'd hoped.  I want him to carry it, yes, but God, it seems  that now he'll be carrying it on. And that is so not what we'd hoped.  

Sometimes, more often lately,  I wonder why we even bother with hope.

And I am just as lost and useless tonight as I was seven years ago.  My brother needs so much more than my raggedy  version of "Mama Tried" and "Ring of Fire."  This I know. 

I can't do this.  So many hearts on Valentine's Day.  Everywhere.  Paper, Candy, Crayon.  Red, Pink, Rose, Lavendar.  So many hearts in so many places on this one day, then why is mine twice so broken?

How?

My brother begins chemo tomorrow.  He had a port installed last week and says it hurts like hell.  I can't imagine. 

How?

How is this the way he starts his week now?  How can he be so sick, so quickly?  And how can it be so...unpromising.

Of all that I've known, faced, run from, or dodged, this is the thing that I cannot do.  And I'm just in the bleachers.  How silly, right?

But still. 

I don't know how.

I Hate School

How many lessons, Lord? This subtraction is breaking me.

No, I get that the answers will not show themselves, nice and tidy, in my Saturday inbox.
I know that. God is God and He's got plans and I don't get called into the meetings.
I know all this.

And yet.

What am I to ask, given the circumstances?
("the only stupid question is the one we don't ask"--don't you think God is a bit pissed with whoever came up with that? Seems like it would take up a whole lot of His time, don't you think?)

I'm tired of learning through loss. Am I so thick that this is what it takes to get through? Is this jagged loss my only path to understanding?

That just so sucks.

And I'm just not sure I'm learning anything, to be honest. I am numb, empty and exploding at the same time, reaching dumbly into the dark to find a reason. So far, I've got nothing, btw.

My heart is breaking for my beautiful brother. He is too much to be lost so easily, so painfully. I don't understand.

I wonder if there is a remedial class to help me make sense of this constant thrum of grief that runs through my thick head. And where would one find such a thing? What bulletin board?

Jesus.

Then again, maybe some lessons are just shit. Necessary, yes, but shit just the same. Maybe that's the best I can hope for.

How sad is that?

So here's what I learned in school this week:

I learned Hurt.

Crying Uncle

My brother has cancer.
Pancreatic cancer, to be exact, and this is pretty much all I know of the medical side. I suppose I will know more in the upcoming days, and I suppose that I'll wish I didn't know so much by then.

He is quite simply the best of us. He is brilliant and talented and grounded and sane (no small feat in our end of the gene pool). He has raised beautiful, brilliant, talented and grounded children to the cusp of adulthood. He has walked through more fire than I could begin to explain.

He is 48 years old.

My sons adore him from afar. He sends perfect gifts--he sends vast numbers of flashlights and geodes and hammers and goggles (very glad for that last part, I would forget to do that). My children think him exotic and multi-talented and magical. And he is. These boys will need him, want him in their lives, and he will spark interests and talents in them, simply by his example. I need him, if just to look at our family portrait and point and say, "he's not crazy. He's really amazing."

I have too many words in my head right now to make much sense. Words about unfairness and loneliness and fear and grief. Words about my ache for him, for his family, for everything he's made, built, touched. Words about losing too much, too goddamn much, and for why?

My sons' most beloved uncle. My brother.

I should stop now.

Pavlova Weeping

Tomorrow, I'll take my first ballet class since...oh, since way before Baryshnikov retired. Balanchine was still kicking the last time I did.

It's been a lot of years and babies and general decline since I last ronde de jambed. Tomorrow,though, I will look myself in the (oh shit) wall of full length mirrors and hope for the best. I figure if I look myself in the eye, then I won't look down at my 44 year old un-dancer-esque body. Maybe I could keep my eyes shut. That will render me invisible, right?

Man, this is scary.

My body remembers ballet, I know it. Port de bras...arabesque (ow just thinking about it)...barre work...floor work...the curves, the angles are all still here somewhere in this old body, but *my* curves and angles are not where they used to be, to put it nicely. Nor shall they go where they should anytime soon, I would think.

But yeah, it used to be my thing. Five times a week, burning through pointe shoes, or rather, bleeding through pointe shoes, sewing ribbons, rubber sweatpants (god, we were so silly), it was what I did, and what I wanted to do forever. My parents were patently horrified because back then, it meant cutting off education to get a career over and done with by hmmm...maybe 34? I think there was an NYCB dancer who was 34, and that was completely calcified in ballet years. It meant killing yourself to fit the mold. Let's see--I'm 5'5 3/4 inches tall. When I was thirteen, I was also 5'5 3'4 inches tall. You know why? Because dancers couldn't be taller than 5'6. My mother swore that I willed myself to stop growing. Yeah, probably. Along with the diuretics, and the acquired eating disorder, it was all part of ballet's powerful hold on me.

What happened? Why did I stop? Oh God, puberty struck with an absurdly early vengeance, and it left me surrounded by my breastless, hipless classmates. How come they got the good bodies? They didn't know the difference between a glissade and a pique turn! They didn't drool over Peter Martins, or study Gelsey Kirland's technique for breaking in her toe shoes (it involved a hammer. I still like hammers). Not fair not fair not fair.

So yeah, The "Good Bodies." Not like mine, replete with heavy, unwelcome femaleness. Lithe? not exactly. And no matter how well that sturdy body knew the joy of ballet and the subtle nuances of the art, that body had most likely already failed me. At 14.

And at 14, I had what was probably my first episode of depression, which sort of makes sense, and sort of explains how I spent the next decade self-medicating, no? Then, in my late twenties, come to find out, I did get a "good body," but I wasn't dancing anymore, and it was more like a rental because that good body was gone, baby, gone, with that first baby.

Maybe I'll have some sort of psychological implosion concurrent with that first plie. Wouldn't that be um...interesting? I can't imagine. Even facing this chunky, creaky old demon in the wall of mirrors (more like funhouse mirrors) I don't think big body-length capes are de rigeur for floorwork, do you?

Probably not. Oh God.

Well, putting aside tomorrow's pending and very public psychological trauma, I should go.

I need to find my solar plexis.