Wednesday, December 31, 2008

Celebrating New Year's Eve with LW

Little Warrior says goodbye to 2008:


And "Enter, Rejoice, and Come In" to 2009:


And also to you and yours ... Blessed New Year!

Tuesday, December 30, 2008

Lesson Learned -- Cry, Cry, Cry

There's a reason why some do not recommend porn -- because it is based on something artificial. Well, the same is true with tear-porn. Dunna work. Cheap tears just aren't the solution. You gotta go to the source of your own pain.

Otherwise, you see, you wind up on your way to your parents to drop off Children 3 and 4 for a visit and sobbing the whole way. Which causes great consternation. And advice.

Here's my advice about advice about crying: ignore it. Except, of course, mine.

So, I've cried, cried, cried. I am hopeful that I will wake up tomorrow with swollen eyes but no more tears.

2009 will have tears. Tears of sadness, tears of joy, tears of laughter. Tears of frustration. Heck, tears from onions. But it'll be nice to begin with a drained tank, as it were.

Wishing for a Cry

I woke up this morning needing a good cry.

Odd, I thought. Then I remembered. Last night, leaving The Boy up playing computer games and my two youngest girls asleep (the eldest spending the night with my parents), I slid into bed beside my sleeping spouse, saying, as I usually do, I am so lucky. It's kind of a mantra. And true.

I lay there in that vulnerable time right before falling asleep when suddenly, the worms were there.

It's been a while. The holidays have kept them at bay.

And then I'm thinking about how life was really back to normal when we took her for scans last spring; as we sat in the hospital McDonalds, I told The Husband that I'd gotten to the point where I'd be surprised if something came back on the scans.

Never will say that again, never never never.

And I'm reliving it and I'm thinking that in the blink of an eye it'll be February, and time for scans again.

But somehow, I fell asleep before I could cry.

Well, no time to cry this morning. We're expected at my parents' trailer for hotcakes and to pick up The Princess. While I'm there, The Husband calls. Going to be $1700 for Bo Peep's dentist in January, another $2000 for the hospital and oh, this dentist says that it's not enough for Peep's pediatrician to okay her for dental surgery, we have to go to their doctor.

It's too much. I tear up. I blink them away and complain of allergies to my mother.

After pancakes, I take my mom on a quick errand. As I wait in the car, I check my home messages. The first is from December 17. Oops.

It is a call from a volunteer at Make-a-Wish. They want to schedule a meeting to find out what Little Warrior's wish is.

Make-a-wish isn't for terminally ill children anymore. It's for children fighting a life-threatening disease. And it's not like this is a surprise.

But still, it grabs me.

It's a gift, a wonderful gift, don't get me wrong. I'm a little conflicted. Not about whether to accept it -- Little Warrior deserves it. But whether to accept it now. She's 3 1/2. She'd appreciate it more in a year or so.

But in February, we get scans. And if all goes well, then more scans in May. And every time, our life could change. And I'd rather her be able to enjoy her wish feeling well, than be in treatment.

I come home. I want to just sit and cry, but that's hard, isn't it? Okay, maybe I have some tear-porn on the tivo. Beaches? Steel Magnolias?

No, it's loaded up with Christmas specials. I pick one -- "Noel: a couple, a diner chef, an editor, an orphaned hustler and a former priest find unexpected happiness on the holidays."

Well, that has potential for misery. I turn it on. Susan Sarandon's mother is apparently in a fairly vegetative state. I feel a bit of a tightening in my throat, welling up to my eyes ...

I sneeze.

Okay. Maybe later.

Saturday, December 27, 2008

so this is christmas

So ... certainly not a perfect Christmas, but I don't believe in such an animal anyway. We picked up one aquarium and setup for two gerbils (they're very social, or so we've read) on Dec. 23rd. One for The Boy, one for The Princess. Put them back in our closet. My, the black one sure was chasing the brown one. OH MY, there's blood on the walls of the aquarium. By Dec. 24th, it was, OH MYYY, the brown one has bite marks and a giant wound on one hip. Got online to learn how to make them stop fighting. Kept reading "...once blood has been drawn, there will be no reconciliation." Put Blackie in a small cage left over from when we had hermit crabs and called The Husband, who was out running errands. Better get another aquarium and set ups.

The little cold I had seemed to jump full force into a big cold on Christmas morning. Afrin 12 hour, Sudafed 12 hour, and coffee and mimosas all fought for dominance in my head. It was not unlike the feeling of two gerbils racing around and around ...

Dec. 26, I realized the gig was up. The cold had won and I wasn't going to fake it out. My sister-in-law, GlamourGirl had arrived, so she and The Husband took out the crew to the mall and to a movie while I swigged Nyquil and went back to bed. Today, they're out bowling, while I stay home, detoxing from medication to see what's the cold and what's fuzzy-drugs, and watching sappy holiday movies I tivoed.

I'd be lying if I didn't admit to being disappointed. But it's an ordinary disappointment, getting a cold. And ordinary disappointments still happen, even after Great Big Things like cancer. Paper cuts still hurt, even if they happen after winning the lottery, I imagine.

And ... if I have to be sick, this is the way. House to myself, don't have to take care of anyone but me.

And even if it wasn't the perfect Christmas for me, I think several folks in my house feel it was pretty darn perfect for them. Like two kids with their own gerbils, that they can keep in their own rooms. "It's the best gift Santa ever brought me," says The Princess. And Bo Peep with her chef set. And Little Warrior, who doesn't remember other Christmases, but still says, this was the BEST one in her Whole Entire Life.

Which, in a way, makes it mine, too.

Wednesday, December 24, 2008

Christmas Time's a Comin'

Well ... I'm fighting a cold that chose today to make an appearance and I just realized today that though I have the play kitchen for Bo Peep and Little Warrior, I, um, forget any pots and pans. Kind of hard to play with a play kitchen without any play pots and pans. And I need to pay bills and my Christmas cards are going to be New Year's cards and Christmas is day after tomorrow and I just haven't had enough Christmas Season to suit me.

But day after tomorrow, my parents, my husband, and all four of my children will be in my living room, together.

Someday, I might look back on this and see it as a precious gift.

You know what? I think I'll realize it as a precious gift right now.

Monday, December 22, 2008

EVERY time I see one of those St. Jude commercials

Hey, she looks like Little Warrior. Aww, that's a nice commercial.

"Give thanks for the healthy kids in your life, and give to those who are not."

Yeah, it's bad to have an unhealthy kid. And of course, they're not talking about just a "sick" kid, they're talking about cancer, about a child having CANCER, that big scary thing that old people get, that people can DIE from, isn't that horrible?

pause.

HOLY SHIT. LITTLE WARRIOR HAD CANCER.

Every single time.

Friday, December 19, 2008

Sweet tenderness

My parents arrived today. They had gone back home right before Little Warrior's last chemo, confident that we were covered. But they're back for the holidays and happy to see all of us, but especially Little Warrior. They were starved for her.

It's been a month and a half since they've seen her. To me, the difference is her appearance is big, and I see her everyday. To them, it is huge. Plump, pink cheeks. Eyebrows growing back. HAIR growing back.

It is a visible amount of fuzz now, and feels like velvet. She is very tolerant of our caresses, as we all find that fuzz-head irresistible. I encouraged my dad to stroke her head. He was tentative. He voiced his concern that he was afraid of rubbing it off. LW and I both laughed at him and assured him that her hair is securely attached.

I imagine his concern isn't that much about her hair. It's the concern we all have, that somehow we'll "rub off" her health.

But it was still really sweet, seeing the tenderness of the gruff 79 year old man as he carefully ran his hand over the top of her head.

I found it, I found it!!!!

I have spent way too much time searching for this ... an SNL Tv Funhouse of Jesus and the real meaning of Christmas.

Wednesday, December 17, 2008

I Believe in Father Christmas

I love Christmas. No, more than that. I believe in Christmas.

What makes someone a Christmas person and another person, not? I don't know. Perhaps it is something just in you, like whether you're a cat or a dog person.

Nature, nurture. Like most things, you can point to definitive reasons why someone who is not a Christmas person is not ... like one of my friends, for whom Christmas was a time of more abuse, a scary uncle to stay away from. But then there are those who have all the reason in the world to turn away from the holiday, but instead embrace it. And those who had idyllic Christmastimes, but it just never struck a chord. They'd rather be off on a warm beach, drinking a Mai Tai.

I enjoy the story of a very special child being born in rude circumstances ... in fact, I was marveling on that this week, the choice to have Him born poor. The kings, the shepherds -- lovely.

But it is not the center of my celebration.

I guess, if I had to put a word to it, it'd be that over-used, overworked, but still plugging away word, Love. Even if there were no mention of Jesus, Christmas would still be the holiday I would celebrate. Because it's not a celebration of the solstice to me, it's a celebration of love in its many forms.

The holiday of Christmas, even without a virgin birth, is filled with meaning and history. Yes, there's traffic and grumpy people, but there are also so many people wanting to reach out, to show love to their families, their friends, and to complete strangers. They take a gift list off the mall tree to buy a little girl they've never met a Barbie and a Hannah Montana tshirt. They are more generous with their charity dollars. They sing carols at the old folks' home, they dish up soup at a shelter, they do art projects at a children's hospital. They smile at others in line. In their hearts, they really do want everyone to be happy on Christmas.

The eternal lament is, why can't they be that way all year? Well, as someone once said, I am thankful that thorns have roses.

The stories of Christmas fill my heart, fiction and non. The Christmas ceasefire. Della and Jim. Scrooge.

Oh, Scrooge! Scrooge, I love him so, because he embodies my deepest, hopeful-est belief in personal transformation. That one can wake up, literally and figuratively, and decide to be different. And be "as good as his word."

Santa.

I could write a book (actually, I am, but that's another story for another time) on Santa. I do have children, but even if I didn't, I would still believe in Santa Claus. When it gets to that scene in Elf where everyone starts singing, "... I'm telling you why, Santa Claus is coming to town!" I just tear up, same as I do in the remake of Miracle on 34th Street where people all across New York hang out signs saying, "I Believe."

... just as I do every Christmas Eve, when we pull up NoradSanta.com to track Santa's progress around the globe. Because just as Scrooge symbolizes the possibility of transformation for me, NoradSanta symbolizes all the love and work that goes into Santa.

You know the story, right? A simple misprint in 1955, and all these years later, they still do all this work to bring information to children about Santa's journey.

On Christmas Eve, children all around the world get on NoradSanta.com, click on their language, and watch Santa's trip.

On Christmas Eve, people all over the world conspire to bring magic to children.

I think I may feel more strongly about what Santa does for adults than I do even his magical effects on children. Santa is the penultimate example of non-reciprocal, anonymous giving. (My vocab peeps out there, yes, I mean the correct definition of penultimate, one shy of ultimate. I think that the ultimate is doing all that for someone you don't know.)

Parents who would never let their children see them giving such bounty -- goodness, such largess, it's unseemly! -- glow with love as their children exclaim over the gifts from Santa. Willingly, they watch as Santa takes the credit for the bicycle, as they get kisses later for the board game.

Santa is magic, both for being so inaccessible and for being completely accessible. Anyone with the spirit to do so can be Santa. A present left on an elderly neighbor's front porch, a gift card in the mail ... signed, Love, Santa. What power!

I do not seek to convert nor take away from anyone their feelings about Christmas. To those on the beach, Mele Kalikimaka, Dudes. To those for whom Christmas is a deeply religious holiday, a time of spiritual reflection, Good Holy-days to you, and may the blessings of the Christ child be in your heart. My friends round the solstice fire, I'll probably join you as we call the quarters.

But then, I will get back to my house and my family, to bake more cookies, wrap more presents, watch more Christmas shows, and play Christmas songs til my fingers are puffy and sore.

Comes the time for Christmas
And as you raise your Yuletide flask
There's like this feeling that you carry
As if from every Christmas past
It's as if each year it grows
It's like you feel it in your toes
And on and on your carol goes
Harvesting love among your woes

--Christmas, Blues Traveler

Tuesday, December 16, 2008

Entertainment Weekly Cheap

And now, a break from deep thinking ... just found a good deal on one of my bargain boards. Get a year's worth of Entertainment Weekly for $10.

If you pay by credit card, then after you sign up, you'll go to a page offering a gift subscription for $5.

So for that relative you just don't know what to buy for ...

Monday, December 15, 2008

Can you talk about God in your church?

Such good stuff on iminister right now. Here's one thing that jumped out at me on Some Recommendations that Caught My Eye:

Enrich our ministries by having conversations about holy experience/transcendence with colleagues. Allow ourselves to be more vulnerable.

Talk about our holy experiences/sense of God in our congregations and with our congregations. Model this so they can do it too.

This is matching up with something that's been tickling around the edges of my brain: are we really more comfortable being open about our beliefs in our UU churches? Or only "some" of those beliefs?

The BFF-DRE and I recently took our children over to a local Methodist church for one of their holiday happenings, a "Walk through Bethlehem." Lovely thing, lots of church volunteers, good spirit, all free for everyone. Wonderful energy at that church but you know, not a theology that reflects my beliefs.

There are probably at least a couple of people who go there whose beliefs don't match up with the theology, but they go anyway for other reasons and keep their thoughts to themselves. At our UU churches, we often say, Here, you don't have to deny part of yourself. You don't have to keep your doubts, your thoughts, to yourself.

But is that really true?

Just a thought, not fully formed ... but I think some of us may feel very comfortable sharing our doubts, but our positive feelings about God -- do we feel comfortable sharing those? Do we feel comfortable saying, "I was really worried about X, but last night, I prayed on it, and I feel better able to face it today." -- ?

I'm not talking about testifying to others, or asking them to take our personal revelation as a message meant for anyone outside ourselves.

But do we feel comfortable being vulnerable? Do we make a place where people can speak aloud those feelings in their hearts about God? Or are they afraid that someone will see them as developmentally lower, quaint, not "evolved"?

Because if not ... then aren't we just like those two people in the Methodist church who keep their doubts to themselves?

Thursday, December 11, 2008

A different seminary path

Rev. Christine has been having some fascinating posts about excellence in ministry, which have included questions about the process of becoming a minister.

I'd be lying if I said I hadn't thought about a jillion times, "Why didn't I answer the call back when I was 21, with no kids?"

Well, woulda shoulda coulda. One step in another direction, and I might not have my four lump-lumps. So, no regrets.

Still and all, my path to ministry is proving to be long and unique. Not uniqually unique. I think the majority of UU seminarians have unique paths.

Like most, I'd been getting the call for a long time. But I finally received a call I couldn't say No to. I signed up for seminary, with the expectation that I'd soon be getting pregnant for the fourth and last time. But I wanted to at least start, dip my toes in. Deciding where to go wasn't difficult -- I had a husband and three kids. I looked to see what accredited seminaries were in my town. Seminary 1: Catholic. Being both a) female and b) not Catholic, it was easy to cross that one off my list. Seminary 2: An extension program from a well-known seminary about 5 hours away. But in order to graduate, you have to do about a year's work in residence in that town. X.

Seminary 3: Local. Offers evening classes. Interdenominational, meaning "You can be any kind of Christian." Close enough. And I knew a UU minister who had graduated from there. We had a winner.

That first semester was hard, and not just because of morning sickness. I landed in what was called "Intro to Theology" but was taught as Systematic Theology. By a Southern Baptist. Who said, on my first day, "You cannot be a unitarian and be a Christian." (This wasn't directed at me, he didn't know my religion at that point.)

Rough, rough, rough. But a good introduction to seminary. I got an A, though as I grimly joked, I had to sell my soul to Jesus in order to do so.

And then, a break to have Little Warrior. When she was 6 months old, I made plans to go back to school.

And then life turned upside down, inside out, and we entered Cancer World.

And I didn't think I'd ever go back to seminary. Didn't think I'd ever be a minister. Didn't think I'd ever have anything to say of value, ever, ever again.

But she got better. And long after she got better, I got better. And I went back to seminary. Different professor, different subject. And I learned how to politely speak my mind at seminary.

During this time, I looked into doing the extension program through M-L. It looked fascinating and wonderful and all that. But I was making friends with fellow students at my local seminary. Practically all were black, living in the inner-city, making plans to minister to low-income communities. And I realized I was learning so much from my classmates. The things they talked about struck a chord in me. And I realized that this seminary offers me advantages that I wouldn't get at many other schools. I am the minority here. And it's like going to France to learn French -- I am learning about anti-racism/anti-oppression through an immersion experience. I am grateful to my fellow students who are my teachers.

(And I like to think that I am offering something unique, such as when I explained that in my religion, the question is not about the ethics of marrying a gay couple, but whether it is ethical to legally marry a straight couple, since our gay congregants do not have that same right. This is a conservative school. A few eyes bugged out that day.)

I did well. Then I signed up for another semester, and also signed up for an online class through Starr-King. Shooting rockets of new experience! Anyone who sees online classes as somehow a weaker sister ... well, they haven't had my experience. Because we wrote our conversations, sharing our thoughts on a private class-only bulletin board, we were able to be more thoughtful than when one is talking off the cuff. My class was Intro to Liberal Religious Education and it opened up a whole world for me, so much so that I wound up designing an RE program that my home church is using this year.

And then, a month away from the end of the semester, we took LW for routine scans. She was a year and 9 months off treatment. We were about to "graduate" to only having scans every 6 months. I even joked (oh, how I cringe now) to a person at my church that hey, if the cancer came back, I'd take it as a sign that God REALLY did NOT want me to be a minister.

They found a spot.

I juggled textbooks and suitcases, working on final papers while staying with LW at the hospital. I managed to turn everything in on time. I did well, school-wise. I'm proud of that.

We found that the spot was Wilms' Tumor and that we had to go back to Cancer World. But this time, it was going to be harder. And it would require hospitalizations every third week. For me, the mama, school wasn't an option. So I sat out the Fall semester.

She is done with treatment. And despite my joke, this time around, there were no real doubts about returning to school. I am signed up for Intro to Pastoral Care at my local seminary, starting in January. LW will have scans twice during the semester -- February and May. Life can change on a dime -- again. But I start yet again. Leap of faith.

I do not get the cloistered, intensive experience of going to seminary full-time at a UU seminary. And I certainly wouldn't recommend the "cancer track" of theological training. And since I won't be going to school full-time until LW is in kindergarten, I'm not eligible for financial aid, other than the Visa and Mastercard Student Loan program. (Really, really not recommended.)

But I think that at the end of this, I can confidently check off the "discernment" aspect. And AR/AO. And studying in a conservative, often fundamentalist, Christian community. And a whole lotta other, to be revealed as I take this journey, step by step ...

Wednesday, December 10, 2008

Thank you for the magic

The Princess is 9. She believes in Santa Claus, one of a dwindling minority in her class. But I know from prior experience that she is at the age where she'd like a little more proof. It's a tender age, on the way to pre-teendom, but still playing with Barbies and baby dolls.

On Sunday, a dear friend, the children's "annexed" grandma, sent all 6 of us to a special holiday brunch. Delicious food, lovely setting and Santa and Mrs. Claus. A fabulous Santa, gorgeously attired, long fluffy beard, and willing to really sit and talk with each child. We all walked out, pretty certain that the was the Real Santa.

The Princess asked for two things: moon shoes, and snow.

Did I mention that we live somewhere where it NEVER snows? Maybe once every dozen years. Maybe.

But Santa said he'd try.

Meanwhile, I just haven't been feeling it. The Christmas magic. As longtime readers of this blog know, I am a bonafide Christmas lover, bad TV specials, hokey songs and all. But this year ... well, I just wasn't feeling it. Last night, I had a little talk with the Transcending Mystery and mentioned that you know, I don't need it or anything, but I'd love a little Christmas magic.

The Princess is home with a little cold today. I left her at home while Little Warrior and I went and picked Bo Peep up from school. We were driving home through the rain and I noticed the oddest thing. The raindrops seemed to be, I dunno, kind of bouncing on the windshield. And it seemed like I could see them coming at me, but in a slow way, not like rain does and HOLY SMOKES, I THINK THAT'S SNOW!!!! BO PEEP, IT'S SNOWING, IT'S SNOWING!!!

And then it really, REALLY was snowing, great big huge fairy flakes coming down. We got out and ran to the front door calling to The Princess that it was snowing, really, really, snowing!!! She pulled a coat on over her jammies, stepped into shoes and came out.

The girls all danced and pranced, just wild with the wonder of it all. The Husband called because it was snowing at his work. Before he could say a word, I asked, "SO, do you believe in Santa Claus???"

Tonight, there's not a doubt in our minds. He really was the real Santa Claus.

Tuesday, December 09, 2008

Have a sexy Christmas

No, this isn't a post decrying sexy M&Ms or Santa Baby. No sirree Bob; it's quite the opposite.

There's lots of folks who will tell you that Christmas is for children. And the idea of Christmas being something sexy ... well, that's just wrong. Christmas is about a holy birth, or a completely G-rated Santa delivering dolls and toy trucks to kiddies. And sexy is just commercialization of Christmas.

Well, phhhbt on that, I say.

Even before I knew what "sexy" was, I think I've always had an awareness of how sexy Christmas is, starting with my parents. My parents are utterly, utterly appropriate, very straight-laced, but around Christmas, there'd be a twinkle in their eyes. Dad usually took a week's vacation around Christmas, so he'd be relaxed. He'd be making eggnog or Bahama Mamas, Mom would be playing the Christmas LPs and thanks to an organized personality that I did not inherit, all the shopping would be done. I'd see kisses and pats on the butt, and it gave me a warm glowy feeling.

Newlywed ... is there anything like a newlywed Christmas? Especially when you're still kids yourselves ... I was 21 and The Husband, 22. Our apartment was -- literally -- less than 500 sq ft, total. That fact notwithstanding, we went to the grocery store and purchased an enormous fresh tree. We had trouble opening the front door and we had to send my mom to spend the night with her aunt because we couldn't fold out the hide-a-bed ... but boy, did we have the Christmas spirit. With our meager budget, we were thrilled to find Swiss Colony goodie boxes we could send to everyone. (Boy were our faces red when we saw our gift to my parents at their house and discovered that the boxes of goodies were just like full size, but miniature. A stub of cheese the size of a cocktail sausage. Lesson learned.)

Now we're the parents, complete with secret looks, subtle innuendo, and whispers we don't explain. The other day, watching some holiday show, The Princess asked, "Why do kids complain when their parents kiss?" "I dunno," I answered. "I always kind of liked seeing my parents kiss." The Princess nodded sagely. "It means they love each other."

So ... along with all the fun family activities, spiritual moments of solitude ... throw in a little sexy. Wink, flirt, hug, dance. Twinkle.


Monday, December 08, 2008

Letting the magic in

Two main emotions of this season are playing tennis with my brain. Thwap, thwap, thwap. On one side, the happy mania: my child had cancer and now she doesn't -- how can anything bother me? Merry Christmas! Ho-ho-ho!

And that emotion is real.

On the other side, what creeps in, when I am in the middle of a happy moment, like watching LW deep in conversation with Santa ... What if this is her last Christmas? I am not being melodramatic. I've been a witness to this too many times. A third bout can go very fast.

And that emotion is real.

A couple of days ago, my next door neighbor (whom I like, but I wouldn't describe us as being soul-sisters), brings over a book she got at the library. She accidentally picked it up, thinking it was something else. It's odd, she says. But she thinks I'd like it.

The Book of Everything by Guus Kuijer.

Last night, she emails me. She just realized she needs to turn it back in, so she'll need it back Monday. Sick with a cold, I take it to bed with me. It's short.

"...And do you know how happiness begins? It begins with no longer being afraid."

I need to let magic back in to my head. The kind of magic that says that my neighbor accidentally getting a book from the library and then inexplicably loaning it to me, and then me being forced by a deadline to read it ... is not an accident, is not random. That, not all of the time, not by command, but every once in a while, what I need ... I'll receive.

Saturday, December 06, 2008

Pie Crust Scraps and Family

Today is our tamalada. The DRE-BFF is over here, along with her twin ferrets (aka her high-energy, high-intelligence boys) and we've been churning out pork, chicken mole, and corn-jalapeno-queso-fresca tamales. At some point, the subject of pie crust scraps came up and how you sprinkle them with sugar and cinnamon, bake up 'em up, and fight to get them.

The Husband's mother called them "Stick-ems." Or "Stick-ums." He's not sure which. The DRE-BFF's mother called them "Gnarbles," pronounced with a hard g. Guh-narbles. My mom didn't make pie crust, but when I do, I call them snails, because I roll them up.

Neither The Husband nor the DRE-BFF have any idea why their moms call them by those names. "They don't stick to anything," I ask The Husband. "So why?"

"I dunno."

It's just an accepted family fact. Stick-ems and gnarbles. A tribe shibboleth.

What does your family call them?

Friday, December 05, 2008

Great Moments of the Week

Okay, it's Friday. What were some of the great moments of the week?

  • Little Warrior insisting on using shampoo because she has hair now. Even if you need a magnifying glass to see it.
  • Holding the phone out so my four could sing "Happy Birthday" to my 78 year old mother. And her telling me that it was the best birthday gift.
  • Getting our photo Christmas cards back. Lordy, what a motley crew. But I love 'em something awful.
  • LW getting really pissed off (sorry, no other term adequately describes it) because she keeps seeing shows where the characters get to ride in Santa's sleigh and "I Have Never Gotten To Ride In His Sleigh!!!!" Yes, I'm laughing at my child's pain.
  • Signing up for the spring semester at my seminary. Paying the bill was not so fun, but I'm signed up. I order books today.

What were your great moments from the week? Tell me, tell me.

Three Guys, One Guitar

Something cool for your TGIF.

Thursday, December 04, 2008

What it's like

There's this lake I used to swim in, with a beach. I'd get out, where the water was over my head, and just swim, swim, swim, until finally I was tired, and had to go in.

You swim toward the beach, and at some point, you transition from swimming to walking. You don't want to begin walking too soon, because if you begin walking as soon as your feet can touch the bottom, the wall of water is strong against your chest, and you wind up slogging and trying to push through. If you keep swimming too long, you slam your knees into rocks and look silly to the people up on the beach.

Unlike the swimming out in the middle of the lake, it's nothing dramatic, nothing life or death. It's just this little awkwardness, this transition.

That's where I am right now.

Tuesday, December 02, 2008

Spock Brain

Going through Something Like This, I don't think that being emotional is the worst. I mean, really, it can be a pain in the ass, when every single choir singing, every Hallmark commercial, the Christmas episode of Mork and Mindy for cripes sake, can make me tear up. But it isn't the worst.

The worst is when Spock Brain surfaces. Like Mr. Spock and his Vulcan side, my brain will occasionally go to 100% logical. No human emotion. Just logic. It surprises me ... and as soon as I realize it's happened, I feel physically ill.

Like last night. I was packing up the kids' lunches. We have three Laptop Lunchboxes and I noted that in a Fall 2010, when Little Warrior goes to school, we'll need a fourth. I should probably order one.

Spock Brain, always logical, said, "Better wait and see."

And my head popped up, realizing the thought.

And I felt punched in my stomach. By my own self.

Wednesday, November 26, 2008

Take a break from pie making

Stop crumbling your cornbread, dripping water on your still-frozen turkey, or doing work if you're still in the office (I'm sorry).


Tuesday, November 25, 2008

Live Blogging Port Removal Day

8:09 am The Husband got Little Warrior up this morning at 6 am to feed her oatmeal and bananas. We have to be there at 10:30, but surgery is scheduled for 12:30, so since they say no food/drink 6 hours prior to surgery, we should be fine. I'll probably still have to deal with some nurse, checking her vitals at 11:30, who will raise her eyebrows when I say she was fed at 6, until I point out the math. What they really want is for you to say that you last fed your child a week ago last Wednesday.

I'm drinking coffee, feeling a little groggy. I was so hopped up on excitement and a Peppermint Twist Mocha Frappuccino last night, I couldn't sleep. I took one Tylenol PM, noting the expiration date of 05/05. I dreamed I was in a submarine, looking at killer whales scratching their backs on coral. It was pretty cool, until one of the whales came over and began bumping our submarine.

9:15 am ... is when we should have left. Instead, I was arguing with LW about what shoes she was going to wear, as she wanted to wear her sister's boots that are way too big. "This is non-negotiable," I told her. This is how I talk to my 3 year old, which may partially explain The Boy winning in his first debate tournament last weekend. They learn to debate out of self-defense.

My cell phone is dead, but no biggie, lemme just grab my car charger. (I'm driving my MIL's car because yesterday the engine light began blinking on the minivan, and the code said something about the vehicle not being able to regulate its temperature. Sounds like a thyroid problem.)

Car charger. Car charger.

The Husband killed yet another cell phone this weekend (phones tremble as he draws near) and borrowed my phone while running errands. Charger is in his car. He's across town. Not helpful.

Drive to town, occasionally worrying that some emergency has happened to our other children and the hospital can't reach either of us. Oh well. I think the BFF-DRE is the In Case of Emergency person.

MIL's car is a smooth Cadillac. After driving the minivan, this is like driving a stick of butter. Smooth, smooth, smooth. I'm a bit of a reverse-snob about vehicles, but I can see why this tempts people.

Valet park because the one and only time you can get parking validation is if your child has surgery. That's one of the two perks of surgery. The other is a pair of pajamas, emblazoned with the hospital logo. This will be LW's 6th pair. She never wears them at home. I think they're itchy.

So here we are, in the waiting room. They've removed the play kitchen with the play food. Perhaps someone clued them in that having that particular toy in a room where all the children have been fasting is cruel and indicates either an ignorance of children or an evil malevolence toward them.

11:10: Now, we wait.

11:24: More questions from nurses. Allergies. Reactions to anesthesia. Apparently the latter can be quite genetic because they always ask if family members have reactions to anesthesia. I always explain that with me, the sedative wears off before the paralytic, which elicits an alarmed look and a lot of scribbling.

It's never been anything dramatic with me -- no waking up on the operating table. But I've had 3 surgeries, and the first two, I woke up after surgery and couldn't move, couldn't talk, couldn't open my eyes, felt like I couldn't breathe. It was pretty terrifying. Completely lucid, but trapped inside. The last time, I was so frantic, I began mentally reciting The Prisoner of Chillon over and over in my head to calm me down.

When I had an emergency appendectomy, I told the anesthesiologist about it. Ahh, he said, and explained to me that anesthesia is composed of two different parts, and obviously my body went through one faster than the other. When I woke up from that surgery, everything was A-Ok.

I'd hate for LW to have that experience.

The Child Life Specialist is calling ...

11:51 Child Life Specialists are cool people. They explain, in kid-friendly language, everything that that is going to happen. Little Warrior seems to be taking it all in stride. The Child Life person gave her one of those stickers with a snap on it that they put on you to hook heart monitors to. She's putting it on and off the plastic piggy bank that her grandmother gave her yesterday.

"Does she want to take anything back in the OR with her?" the nurse asked. "A special blanket, or a cuddly?"

Yes. This plastic piggy bank.

I have a unique child.

I would really like to charge my cell, but there are apparently no electric outlets in this entire waiting room. I keep moving chairs away from the walls, searching.

We're not in cancer world anymore. This is day surgery, so there are children here for all sorts of reasons. Some of the parents look nervously at LW with her bald head.

12:15 Waiting, waiting, waiting. I found a plug, so my cell phone is across the room charging up. I hope I don't forget it.

Two surgeons, in scrubs, just walked in. They are searching for the parents of child. What kind of news will they have for them? Can't tell by their faces.

It was in this room, just a couple of yards from where I'm now sitting, that our surgeon came out and talked to me, The Husband, and my brother and sister-in-law who had stopped by. To tell us that they took out "the nodule." To tell us that there was something on her kidney that they'd never seen before, that looked like a blood blister. That they took every precaution, but if it was cancer, some cells might have escaped, so she'd need radiation.

She won't be able to have children, I immediately thought.

Our immediate thoughts are not the most logical thoughts.

12:30 Some young women in full polished makeup, perfect hair have come in, carrying a gift bag and a balloon. "Oh, there you are!" they say to their friend, who has neither makeup nor perfect hair. They sit with her and her husband, chit chatting. Part of the conversation is about how children's hospitals aren't fun places. Yeah, says the mother, but our mirth is how we deal.

Little Warrior would probably argue with them. But right now, she's cutting covetous looks at the balloon and gift, while she idly plays with one of those bead roller-coaster toys, ubiquitous to every children's medical establishment.

"When are they going to call me?" she whines, coming over to me. I shrug.

I probably should have eaten more than 1/2 a cashew butter sandwich this morning.

12:50 Still waiting, waiting.

First time we did cancer, The Husband was always here for these things. This time around, his job is as a consultant. It's a good job, but if he doesn't work, we don't get paid.

So, I've done most of these things by myself. All the hospitalizations, the dental surgery, the appointments, most of the scans.

And ... it's been fine. Once again I've learned that you can do more than you think you can do. And anything can become normal.

And "help" makes all the difference, whether it was The Husband coming to the hospital to unload our stuff or the BFF-DRE bringing us lunch and a visit.

I think LW needs some cuddling.

1:22 I just want to note that I've been here since 10:30. We are still in the main waiting room.

Do doctors get exasperated when their cable guy says he'll be there between 9 and 5 and still hasn't shown up at 5:10?

It's surgery. This is the time to be patient, because the delay could be because a child needs emergency surgery.

I'm hungry. It's hard to keep my nice on.

1:54 One of the polished young women left and came back with a small teddy bear with a cross on his sweater, attached to a Hello Kitty balloon and a package of Starburst. "I wanted her to have this," she explains to me. "She just has such a pretty face."

Once again, I am awed at what total strangers will just up and do.

LW goes over and gives her a big hug. The pretty stranger hugs her close and says, "I love you." I give her to address for Love Through Action and tell her I'll be mentioning her. She demurs any praise and says, "The Lord told me to do it."

I like that kind of instruction.

3:08 We are back in a different waiting area. LW is in her hospital-issued yellow pajamas, driving a toy car around. We are ready to go.

3:20 Apparently there was a mix-up and they'll be taking another child before us. More waiting. And now, I'm sure:

I really should have eaten more than 1/2 a cashew butter sandwich.

3:40 A resident came and talked to me. Once they take the other child, it'll be about an hour before they take Little Warrior.

This kid is being amazing. Looking at books, watching tv. She has to be starving, since she last ate at 6 am. What a trooper. Little Warrior.

When we were back in the main waiting room, I had "Why, Charlie Brown, Why?" playing on YouTube for her. One of her favorites, not surprisingly. A boy, probably about 10 or 11, began watching it with us. Politely, he asked if it was You Tube. When the little girl in the cartoon said she had leukemia, he perked up. He asked if that was what LW had. No, she has Wilms. I noticed his short buzzed hair. "Is that what you have?" He nodded. "Three years." I told him that LW was done with chemo and getting her port out. He said he was getting one put in.

Which means ... he's been in remission, but judging by the length of his hair, not for very long. And the beast is back.

I am pretty sure that he's the child we're getting bumped for. So it's pretty hard for me to begrudge the delay.

I found an open bag of Haribo cola gummies at the bottom of my bag. When LW isn't looking, I sneak some.

5:02 pm They just took her back.

5:30 pm Wow. No idea this Live-Blog would be so long. Well, LW is still back in surgery. I made it over to the hospital food court before it closed. Wolfed down a Chick Fil A sandwich; it tasted like the most delicious food ever made. Now, of course, a bit of a tummy ache. But better than hunger pangs.

What a day, what a day. The niece of the pretty stranger wound up playing with LW in the "about to go to surgery" waiting room, two little princesses in their hospital-issue jammies. "Now, are you a boy or a girl?" she asked LW. "I keep thinking you're a boy." Little Warrior took no offense.

I talked a bit with her Mom. She was having surgery for reflux. Kidneys were involved, so I said, "Well, the kidney surgeons here are very good. We had Dr. S--." "Oh, he's our doctor!" she said. We chatted about him, how he's kinda funny because he's a major chatterbox (unusual, in my experience, with surgeons), but very smart.

We're all connected.

The polished women and the mom are all sisters, and all moms. Their children are all about the same ages. I am a bit envious of that, I admit.

But I have good friends. And you know what? I have good strangers.

9:19 pm

We are home. I am typing w/ 1 hand, as LW is asleep in my lap. She's drugged up.

I'm tired. And awed with thankfulness.

Monday, November 24, 2008

Sex, Baby!

Okay, so lotsa people talking about Rev. Ed Young and his command to his flock to have sex every day for one week.

Well ... t'ain't original. Nor dramatic. This minister, last year, asked his married parishioners to have sex every day for 30 days.

Well, me being me, I brought this up in my Christian Ethics class last year. There were some joking remarks about it, then we went on to something else.

However ... my professor (who is a very thoughtful person and a conservative Christian) went off, thought about it, and studied his Bible. A week later, he had all of us turn to Proverbs 5:18-19:

May your fountain be blessed,
and may you rejoice in the wife of your youth.

A loving doe, a graceful deer—
may her breasts satisfy you always,
may you ever be captivated by her love.

And we had a very good conversation. And I got to advance my contention that preachers need to talk more about sex.

Do I think sex is the solution to everything? Nah, of course not. And maybe a better way would be to challenge couples to spend a half hour every night with no tv, no computer, no Blackberry -- just each other. But neither am I offended by the idea that a minister challenge their partnered congregants to focus on sex for a week.

In the words of renowned theologian George Michael ... Sex is natural, sex is good.

Online Communications, Communities, Communing

Living her Moxie Life, Jackie is talking about all the ways of communicating online and asks:

So, what about you? Where online do you find real depth? Are you a gadfly running to each new thing? What community online feeds your soul?

I'm glad she asked. I've been meaning to blog about this.

First, I must admit:

I am addicted to Facebook.

Once again, I have learned the lesson that one must not mock, because you will become, or begin to do, what you mock. ("Oh, those silly people who win the lottery, what a bunch of prisses.")

Waiting, waiting ... okay, moving on.

I mocked those who Twitter. What egotism! Who wants to know what you're doing every second?

Meanwhile, I signed for Facebook, after being urged to by some seminary friends. And found more of my friends on it. Then found high school friends on it. Then figured out the whole "updating your status," thing.

I'm twittering ... on Facebook. Especially when we're at the hospital. "Liveblogging the hospital."

And I love, love, love reading the minutiae that makes up my friends' lives. This one is about to face the diaper pail, that one just won an SCA honor, she's about to go perform a wedding, that one just made 3 dozen cupcakes.

Okay, that last one was me.

I love that Facebook is as much or as little as you like. I can see what's going on in my friends' lives, without being obligated to respond, like with email.

Email ... ugh. A boon AND a bane. I really, really am not a friend of the phone, as my friends will tell you. Maybe in a few years, but for the last 10 years, me getting on the phone is a call for children to come running, needing water, paper, a referee, a video, an audience. If one can be agoraphobic, but just via phone, that's me.

So in that way, I love email. When scheduing speakers, I don't have to leave a message, play phone tag. I send an email and when that person checks their email, they respond.

Yeah, but there's the rub -- "Respond." People email me and then of all crazy things, they want me to respond. Does that happen to you, too? And the emails add up, because I really want to follow up more on this one, or save that one, or ... well, you know. I'm not the only one.

Jacqui recommends that we narrow our online communication to three modes, which happens to fit what I do. My third is blogging. Happily, she didn't recommend we limit ourselves to only one blog.

This is my main blog. It's an online version of a Pensieve, where I can dump my thoughts, opinions and the like. And in its connection with other blogs, a community has formed. I've blogged about this before. The whole blogging experience continues to fascinate me. How people whom we've never met "in real life" can know more about our thoughts through our blogs than people who see us every single day.

I have the Love Through Action blog, which was meant to be a place to post the good deeds that people did in LW's honor, but along the way, became a bit of a video blog about LW.

And I have a blog for friends and family to be able to follow what's going on with LW. If you have a family member going through a health issue, I highly recommend having a blog where you can send everyone, like carepages.org or caringbridge.org. Cuts down on the phone calls for status reports.

Still and all, now that LW can go out in public, I'm looking forward to being able to have coffee with friends. But when we couldn't go out and were for all purposes in reverse-quarantine, blogging, emailing, and facebooking kept me connected.

Heck ... it kept me sane.

Home for the Holidays

Wait a second, before you dive into all the Christmas movies ... first, Thanksgiving. If you haven't seen Home for the Holidays, rent it. NOW. Go to Netflix, put it in your queue, and shuffle it to the first position. Trust me.

Incredible cast: Anne Bancroft, Charles Durning, Holly Hunter, Robert Downey, Jr, Geraldine Chaplin, and tons of other famous faces. Directed by Jodie Foster. (Oh, and David Straitharn in this tiny role but oh-my-god, he does it well. You KNOW people just like his character.)

Actually, you know people like all the characters. Maybe YOU are like one of the characters.

Who should see this movie: ministers. Anyone with an adult sibling. Anyone with older parents. Anyone with a child who is or will be a teenager. Anyone gay. Anyone unmarried. Anyone who loves a family member "in spite of" something. Anyone who has ever gone home for the holidays.

Really. Get it, now. It'll put you in a Thanksgiving mood. Although you may just decide NOT to go home this year ... No, still and all, it's a sweet movie. But sweet in a real way, warts and all, no treacle. Not a bit of it.


Friday, November 21, 2008

Give away, give away!

I spent a very enjoyable day today, doing something I'd never done -- canning. (Candied jalapenos and "Annie's Salsa." I'm too lazy tonight, you can easily google either if you're interested.)

The adults in my family have agreed to just exchange "token" gifts, in these trying economic times. I'm taking it a step further (but still inexpensive) with homemade gifts.

I was able to do this because of my friend, Red. A few months ago, she emailed several of her friends and said, "I have a big pressure canner. Anyone want it?"

I jumped. I've always wanted to try canning. Tonight, I am glowing with my new "toy."

That's just the kind of person she is. If she isn't using something, she'd rather have the space. She passes things on. During All of This, Part Two, I've been dragging a huge rolling suitcase back and forth to the hospital. It was absolutely perfect, just as it was summer before last when I packed up the entire family's clothes in it for our vacation. The Magic Suitcase. For Red, it was just too darn big. "Who wants a big suitcase?"

Comes around and goes around. My old coffee table is at Red's house, my dining room set (passed down to me by my brother, which was left to him in a house he purchased) is in the BFF-DRE's house. And I have stuff in my house from both of them.

Maybe you have these kind of sharing circles already. If not, I'd encourage you to look around your house. This seems to be the time of year that a lot of folks want to slough off stuff, in preparation for the holidays.

That old canner you have sitting at the back of your cabinet just may completely thrill one of your friends.

(And of course, if your friends don't want it ... there's always freecycle.)

Thursday, November 20, 2008

But the prettiest sight to see

Today, I received a call that I was expecting. Really Cute Nurse Practitioner was calling to schedule the surgery to remove Little Warrior's portacath.

What I was not expecting -- "The surgeon can do it Tuesday."

Tuesday??? Wow! Yikes! Awesome! Eek! This Tuesday??? Yes.

If you get chemotherapy, odds are good that you'll get a port implanted under your skin because the chemo has to go directly in a vein. If it gets in the muscle, it can cause some major damage, like eating right through it.

Hey, this chemo stuff isn't for kids, you know?

Oh.

Anyway, getting it out is a big deal. As long as that port's still there, any fever over 101 means you have to go to the ER, because it could be a potentially fatal line infection. Once the port is out, then you go back to regular life. Get a fever, suck it up, kid.

That's the practical side. Then there's the other side. That says getting the port out means that you are DONE getting chemotherapy, DONE being a cancer patient.

So the fact that LW is getting her port removed before Thanksgiving is pretty thrilling.

This afternoon, Little Warrior was sitting on the arm of my chair, jabbering away to me. The sun came in through the window behind her and ... oh ... my.

Teeny tiny almost-microscopic fuzz. All over her head.

Monday, November 17, 2008

These small hours

"Little Wonders"
Rob Thomas

Let it go,
Let it roll right off your shoulder
Don't you know
The hardest part is over
Let it in,
Let your clarity define you
In the end
We will only just remember how it feels

Our lives are made
In these small hours
These little wonders,
These twists & turns of fate
Time falls away,
But these small hours,
These small hours still remain

Let it slide,
Let your troubles fall behind you
Let it shine
Until you feel it all around you
And i don't mind
If it's me you need to turn to
We'll get by,
It's the heart that really matters in the end

Our lives are made
In these small hours
These little wonders,
These twists & turns of fate
Time falls away,
But these small hours,
These small hours still remain

All of my regret
Will wash away some how
But i can not forget
The way i feel right now

In these small hours
These little wonders
These twists & turns of fate
These twists & turns of fate
Time falls away but these small hours
These small hours, still remain,
Still remain
These little wonders
These twists & turns of fate
Time falls away
But these small hours
These little wonders still remain


--------

I am hopeful that the hardest part is over.

Preliminary reports are that the scans were clear.

As we walked down the long hall that bridges the clinic and hospital, I carried Little Warrior (it was a long day). I told her that we just got some very good news; did she understand what the doctor was saying?

Yes, she nodded. Cancer is over, she said with a serious look deep into my eyes.

What if Starbucks Marketed Like a Church?

Sunday, November 16, 2008

More Scan-xiety

For the last six months, on a day like this, I'd be packing up, prepping food for home and hospital, and planning on going in the hospital Tuesday.

Well, Little Warrior finished "Regimen I" on Halloween. Technically, she's still been on chemo since then, as part of the cycle is when it's in her system.

Tomorrow morning, we will get up early to go to the hospital. CT scan in the morning, which means fasting, then drinking lots of yucky contrast. Meeting with her oncologist around noon. Echocardiogram at 2ish, because one of her chemos is really hard on the heart.

About a week ago, we got the news that Regimen UH-1 had been discontinued because two of its chemos, cytoxan and doxorubicin, had toxicity issues. As in, children dying while on treatment.

She's been taking those chemos.

Tomorrow, we should find out if the cancer is still gone. We should find out if there's any problems with her heart.

We've already had to learn the lesson that "No Evidence of Disease" merely means that they can't see anything. And that life off-treatment can change to "fighting it again" in just one scan.

So it's not like any part of us sees tomorrow as the end of cancer. Best case scenario is that we go to no treatment, just watching ... and waiting.

I will take it. And celebrate it, should we be so lucky to get it.

In the meantime ... go check the comments on We're Never Going to Grow. Lots of interesting conversation about perceived superiority, class attitudes, and how we treat differences in income/education level in our churches. Weigh in with your opinion.

Friday, November 14, 2008

How to Do Coupons

Do you want to save money on groceries? Really, really save money? Okay. I've got your back.

Myths:
I can't coupon because I'm vegetarian
I can't coupon because I don't eat processed foods
If you coupon, you'll spend more, buying stuff you won't use

Oh, I'm sure there's more myths. Here's the deal. When I was at the height of my best power couponing, my partner in it was a vegan, the kind of vegan who knew that regular Oreos weren't vegan, but mint Oreos were. And she saved tons of money. Re: processed foods, yep, you can save a lot of money on those, but in my binder right now are coupons for eggs, milk, soy milk, salad, bread, and flour. And cleaning products. And toilet paper. And dog food. And candles.

If you really want to save money by couponing, it's not the same thing as when my Mama would clip a few coupons and stick them in the coupon drawer. Power Couponing. I know there are tons of websites with even more tips, but I'll give you the bare bones.

1) The name of the game is "Combining." You want to combine your coupons with grocery store sales.
2) The middle name of the game is "Stocking Up." You're not shopping for this week, you're shopping for your in-home "store."

What I've done in the past is to use a zippered binder filled with the plastic pages they sell for collecting baseball cards. They're perfect for holding coupons. Divide your binder into sections -- dairy, frozen, baking supplies, cleaning, toiletries -- you get the picture. When you put a coupon in, make sure the expiration date is showing.

I'm trying something a little different right now. I date the coupon flyers and file them according to the name of the flyer company, e.g. "Smart Source," "Red Plum," "P & G."

Reason why I'm trying this way is because of this site:

http://www.couponmom.com/

This website -- free -- is wonderful. If you live in or near a major metro area, you can go to "Grocery Deals" by state every week, and for different grocery stores, she posts the item on sale, and the coupon you can also apply. Here's an example:

11-02 RPNestle Carnation Evaporated Milk 12 oz (qualifies for Mix & Match Offer -- final price assumes the purchase of 10 participating items) -- charity!$1.002$0.50FREE100%

11-02 RP means that there was a coupon for this item in the 11-02 Red Plum circular. The sale price is 1.00 per can. The coupon specifies you purchase 2 cans. The coupon value is .50 a can, but this store doubles up to .50. Additionally, this store is doing a Thanksgiving promotion where you get 5.00 off, for every 10 qualifying items purchased, making the sale price effectively .50 a can.

So ... 2 x .50 = 1.00 - .50 doubled = 2 cans of evaporated milk, free.

I know this sounds complicated. It really isn't. And this website does most of the work for you.

Okay, so there's kind of a starting point. Just google "couponing" and you can find out far, far more. Ask your friends and neighbors who don't coupon for their Sunday circulars.

When I was really disciplined about it, I generally spent $30 or less, per week on groceries, for a family of 5. And donated tons of stuff we don't like -- Hamburger Helper and such -- to the food pantry. Things like pickles, mustard, dry pasta, I NEVER spent money on. Those, you could usually find for free. And along with the savings, my husband loved it because we always had a big stash of deodorant, shaving cream, etc. No last minute runs to the store.

Now, if you only shop at Whole Foods, or just don't have time for this, or think couponing is distasteful, hey, I'm not trying to talk you into it.

But for those who are interested -- give it a try. I've done bare bones, only buying generics, lots of rice and beans shopping, and I've done couponing, which is generally brand-name, lot of variety ... and the couponing was wayyy cheaper.

Thursday, November 13, 2008

"We're Never Going to Grow"

I was surrounded by coupons when the BFF-DRE called. "Have you seen the latest UU World?" she asked. "Not yet," I said, pinching the phone between my shoulder and my ear so that I could move the coupons that will give me free Carnation evaporated milk into the "going shopping tomorrow" pocket of my binder.

"We're never going to grow," she said.

I extracted myself from under the coupons for dog food, toothpaste, and flour and went to the mailbox. I read the article she referenced, "Dinner Dilemmas, Ethical Issues at the Thanksgiving Dinner Table."

"We're never going to grow," I sighed.

When The Husband came home, I handed him the article, without any comment. He read it. He shook his head.

"We're never going to grow."

None of this is embellishment for poetry's sake. Those were the exact words all of us used. (And I really was cutting coupons today.)

First of all, if you really want to compare apples to apples, I and the majority of the people I know, will be buying our turkey with the .39/lb voucher or coupon, not the "cheapest" option in the article, the $2.69 turkey. My friends who are vegetarian will be eating something that will probably involve tofu or seitan but tofurkey? Too expensive for their blood, thanks.

We got hard times coming, folks. Our job should be to reach out, show how to do more with less, (upcoming lesson on couponing will be forthcoming from yours truly) ... not imply that yeah, you can buy your cheap turkey, but you're poisoning your children, the earth, stealing money from hard working farmers and then there's the turkey ...

I'm sure there was much research and analysis put into this article. But with apologies to Dr. Phil, do you wanna be right or do you want to reach out to people?

Not all UUs have the opportunity nor the means to pop over to Whole Foods for our Thanksgiving dinner.

Wait ... I just admitted that I don't shop at Whole Foods. Will my UU "member in good standing" card be revoked?

Articles like this make a very clear point: if you can afford to, you should buy organic, free range, humane to the workers and the animal, products. If you can't afford to ... you should do without. Eat a cheese sandwich.

Organic tofu cheese, of course.

Wednesday, November 12, 2008

God and the Kitty

"God gave me this kitty," Little Warrior explained to the neighbor. And the person at the store. And the nurse.

We have a kindly, if brusque, crossing guard who helps Bo Peep and The Princess cross the street twice every school day. His granddaughter is in the same grade as The Princess, so he knows all about Little Warrior. Right before LW went in for her last (we hope) chemo, he sent home a wrapped package with the girls. Inside was a Webkinz kitty for Little Warrior.

LW knows him as "The Crossing Guard." She leaves off the article and the adjective and tells everyone that Guard gave her the kitty. Except she pronounces Guard "God."

One of the very sweet things when you go through something like this, is the outpouring from strangers. People who don't know you personally, they just know "of" you. And they feel the urge to reach out, to give your daughter a little bit of happiness.

Sounds like God to me.

Waking Up

Last week, as I was falling asleep, The Voice asked me, "What would make you happy right now?"

"For Little Warrior to not have cancer, to be skinny again, and to have a clean house," I answered promptly.

"Well," said The Voice in a gently mocking tone, "Two of those, you can take care of, all by yourself." And in a softer tone, The Voice said, "As for the other, you've done as much as you can do."

The next morning, when I woke up ... I Woke Up.

Today, I took Little Warrior for what I hope was her last time to get her finger pricked at the local doctor's office for a CBC. Afterwards, we stopped at Starbucks or as she calls it, the Cinnamon Cake Store, for a piece of cinnamon coffee cake. She was happy and jabbering away at everyone. "You're so pretty," said the lady behind us. "No, I'm Froggy Girl," LW corrected her. (Her secret superhero identity.)

"I have never seen her not smiling!" exclaimed the Barrista.

Oh, I have.

Having gone through this twice, I am a bit bemused that both times, ideas left me. I don't mean I was hopeless, or didn't think about things, or all was dark.

I mean ideas. Those butterfly gems that flit in and around you. Some go through your head then quickly disappear ... I know I had a good idea earlier ... some stay and grow, turning into sermons or projects or articles. I am an idea person. I don't mean that as a brag. "She has a thousand dreams, that won't come true. You know that she believes in them, and that's enough for you." For every one good idea that I follow up on, there are a hundred others that fall by the wayside. To have none swimming through my head leaves a cold vacuum.

Butterfly gems ... yep, that's how I see them. Imagine a big ole diamond with wings. Hard to catch. But if you're real still ... or, you know, have a butterfly net ...

First time we did cancer, I didn't know that the butterfly gems would come back. I just knew that I would never get in the pulpit again, would never go back to seminary, would never be a minister. Because I had nothing to say.

This time, I guess I subconsciously knew that it was just part of cancer, for me at least. So, I filled the vacuum by reading a lot of internet, watching a lot of tv. The political season provided a nice distraction.

Years ago, my sister left her abusive husband. It wasn't an up-and-do-it thing. It was well planned, took about 6 months. During that time, along with secretly packing things away, she became obsessed with the OJ trial. OB-SESSED. Didn't miss a minute of it, watched all the analysis, everything.

So I guess she and I have another thing in common.

This morning, driving to the doctor's office, driving to Starbucks, butterfly gems are all around. I'm glad they've come back.

Next week, we'll go for scans to find out if Cancer, The Sequel is over with. For now, at least. If they are, I'll go over to my seminary to pick up the spring semester registration form and make an appointment with my advisor.

Intro to Pastoral Care. Sounds good. And you know, I just might have some ideas on that topic. If I can catch them.

Tuesday, November 11, 2008

If I Were Arrested ...

Today's meme, from the BFF-DRE:

If you saw me in a police car, what would you think I got arrested for? Answer, then if you want, post to your own journal and see how many crimes you get accused of.


(No fair looking at other comments first.)

Monday, November 10, 2008

It's a New Day

FREE Bone Marrow Registration during November

I know you've been wanting to do this, but the $52 fee for doing a good deed slowed you down. You didn't have your credit card by the computer. Or at least that's what happened to me.

For the month of November, thanks to a generous donation, you can sign up to be on the bone marrow donation list -- for free!

Simply go to: http://marrow.org/ and at the "Become a donor" box, click Join. It'll take a few minutes to register, so plan accordingly.

If you join by November 30, then they'll send you a kit -- all you have to do is swab inside your cheek and send it back. Presto, you're on the list.

And you've done a pretty fabulous good deed, right in time for Thanksgiving.

Pass this on to your friends and family!

p.s. To my gay male friends ... I'm sorry, but it's just like donating blood, which is a bummer. Maybe that'll change under President Obama.

Friday, November 07, 2008

Art and Critical Thought Are Not Mutually Exclusive

I've been on a forced blogging break, due to an unrelenting headache that seems now to be abating. Let me just say, to those of you who suffer chronic migraines: man, am I sorry. I don't know how you accomplish anything.

It was good though, to have a break, because when I read the comment to my posting of The Tide is Turning video, my first thought was, "Boy, do I disagree with you!"

I do disagree with the commenter, but time gave me the opportunity to reflect on something else I admire about Obama -- he knows how to speak to a variety of folks.

When I first saw this was his speech at the Democratic convention. "What'd you think?" my mom asked, calling me up after the speech.

"Well ... what did you think?" I hedged.

"Well ... I don't know, both your dad and I thought it was missing something. It just wasn't as dynamic as some he's given."

Which was exactly how I felt.

Shortly after, my sister, an undecided, called. "That speech ... oh my God, now I get it! He has my vote. That was amazing!"

And I heard that sentiment echoed by several other not-Obama supporters. Like Pat Buchanan:

"It was a genuinely outstanding speech, it was magnificent. I saw Cuomo's speech, I saw Kennedy in '80, I even saw Douglas MacArthur, I saw MLK; this is the greatest convention speech and probably the most important because unlike Cuomo and the others, this was an acceptance speech, this came out of the heart of America, and he went right at the heart of America. This wasn't a liberal speech at all. This is a deeply, deeply centrist speech. It had wit, it had humor, and when he used the needle on McCain, he stuck it into McCain and it was funny. It was Kennedy's speech in '80. I laughed with Kennedy when he was needling Ronald Reagan."

Most of us, if something is working, we keep doing it. But Obama understood that he already had my vote, he already my mother's vote. He knew how to talk to those who weren't already sold.

Wow, thought I ... someone whose judgment is better than mine. Whoo-hoo!

Now, as to the issue in the comment: "Critical thought doesn't respond to gushy little songs."

I believe that "Anonymous" is looking at the equation backward. It is not about response, it is about creativity. The issue is not that a gushy little song could affect someone's vote (I don't believe it could), it's that the candidate inspires such strength of feeling, he motivates others to put their feelings of hope into song, art, or video.

Or cupcakes.

He inspires people. And that's good, because I suspect that the President Obama is going to ask citizens to make some hard choices, some sacrifices.

Poetry, art, are not mutually exclusive to critical thought. Have you read Audacity of Hope? I have. It's specifics. It's details.

A man with a plan can be inspiring. And as for posting videos and such, as the BFF-DRE says, (whom I will tell you, is a critical thinker with a jaundiced eye to corny rhetoric), "Sometimes, I want to surrender to a little bit of joy."

Right now is the time for that. Because come January, there is much work to be done. By all of us.

Monday, November 03, 2008

Not that I'm superstitious or anything ...

For those of us who are being ridiculed for being nervous about the election:



Garry Trudeau, I admire your moxie, but um ... wouldja mind going outside, turning around three times and spitting? Curse, too. Thankya.

Friday, October 31, 2008

And we want it.

Happy Halloween. Cancer is over.*





*PleaseGodKnockWoodThankYewJeeeesus.

Thursday, October 30, 2008

This morning, a woman with a gentle face popped her head around our door and asked if I was LW's mom. When I said yes, she said that she has a daughter just LW's age and they just got here.

Really just got here. Her daughter gets a biopsy today. It sounds like Wilms' Tumor, bilateral, like LW's was at first diagnosis.

This mom is holding it together -- not like me, I was just a puddle when we first came. But I recognized her eyes, because there were my eyes back then. They are filled with fear. They show that her head is swimming, she is overwhelmed.

We met up in the playroom and as our girls played, we talked. I gave her bits and pieces of information. I know she'll remember little of it, but she gave me her email address. I told her about setting up a caringbridge site, I told her that the McDonald's here is open til 3 am.

And I told her, "You will get through this."

She works at the post office, she doesn't know if she'll need to quit her job. They don't live in the city, they're in a small town near here.

She is at the beginning. You know how on tv, or in movies, something happens and a person goes hurtling back in time? That's actually what it feels like. Huh. Sitting there, it was as if a big whoosh swept me back to that first of many hospital rooms. I didn't even know we were on the oncology floor. The Husband knew and was furious. She hadn't even been formally diagnosed.

How innocent, how raw we were.

I was glad that I was here to talk to this mother. Glad we exchanged info so I can "mentor" her through this world. I wanted to say, "This world, it's not as bad as you think." In some ways, that's true. Going to clinic, even coming to the hospital, becomes normal. And in other ways, it is far, far worse than she yet knows.

I was thinking about initial diagnosis versus relapse-diagnosis the other day. Initial diagnosis is a more dramatic change. In 24 hours, not only does your life change, YOU change. You are now a cancer parent. And your child changes. She's still your funny baby, but she is also now a cancer kid. You can run, you can hide, but you can't escape. You will never be the same. Your innocence is ripped away.

In some ways, though, relapse diagnosis was more painful. Initial diagnosis was heartrending, but there was a certain level of protection provided by shock and provided by ignorance.

Relapse diagnosis was the most excruciating pain I've ever experienced. Because there was absolutely no numbness. No swirling cloud of being overwhelmed. This time, I knew. I knew what it meant, I knew the world. I remember sitting on the cold floor of the hospital bathroom, holding two towels up to my face and screaming into them.

I didn't know how I was going to survive the night.

But the morning came. Joy did not come on that morning, but somehow, when the sun rose, it gave me the ability to deal with it all. I dried my eyes, did my research, listened to doctors, made some calls.

And now ... the grainy edges of the past recede and I am back here, in our hospital room. LW is taking a nap, dressed in her pumpkin costume. Tonight, she'll get her last chemo treatment.

Her Last Chemo Treatment. Oh, God, please God please God. Please, may this really, truly be the last.

Tomorrow, we'll finish flushing the liquids, get the neulasta shot and go home, hopefully in time to go trick or treating.

It breaks my heart that as we leave, another will take our place.

Wednesday, October 29, 2008

Halloween in a Children's Hospital

... is not bad.

Little Warrior's counts were good and a room was available, so we checked in yesterday. We should be able to leave at 4 on Friday, which means we'll get home for trick or treating, which doesn't start in our neighborhood til it gets dark.

We have tons of costumes at home, the result of having four children and me going through a garage sale-ing phase when the first was a baby and buying up every costume I saw that was $3 or cheaper.

Financial tip: tons and tons of costumes fit into that category. Come spring, people just want to get rid of costumes. Even the homemade ones.

I'm pretty sure that the one she is wearing today was lovingly homemade. Not by me, of course. (Shudders.)

Back to my point ... we have lots of costumes, so I told LW she could bring 3 costumes to the hospital. Today is clown day, and you'd better believe that we attract boatloads and oohs and aahs. And by "we," I mean, "she," which is just fine with "me." Invisibility is a good look for me these days.

Anyway, first we went up to the hospital library. A school evidently had a pumpkin decorating contest, where they decorated craft pumpkins like book characters. Everyone who goes in the library is urged to pick one out. LW chose one decorated like Knuffle Bunny. Then we got back to our room and discovered LW's favorite Child Life specialist had left one decorated like A Bad Case of Stripes.














Lunchtime. I grabbed a sandwich out of our mini-fridge and LW and I went down to the Ronald McDonald family room to heat it up. Hey, we're just in time for a party! Some cute high-school girls were there, in costume, with treat buckets, sandwiches and face painting. They painted up LW and oohed and ahhed over her. I tried not to get too misty. I'm always touched at people -- complete strangers -- coming over just to brighten up a sick kid's day. Plus, this being LW's last round of chemo, I'm just very sentimental. Oy.

After eating lunch and playing in the playroom, we're back in our room. LW has an interesting way of letting me know it's nap time. And by "interesting," I mean "exasperating." She gets really really naughty and really really obstinate. I swear, you can actually see the horns pop out of her head. Which is an interesting look with a clown outfit. Now I'm really going to have nightmares about clowns eating me.

She's settling down and some nice ladies from an Optimists club come by with a little pillow for LW. People love to give cancer kids pillows and blankets. I think we have enough to furnish a couple of bedrooms. No disrespect intended.

But while I'm teetering on the edge of ungratefulness, let me mention that if you're making up treat buckets or bags for kids, make sure there's some toddler-safe candy in there. LW got a bucket full of gumballs, double bubble, jawbreakers and Now-and-Laters.

Hmm. I was a much nicer person when I began this post. Maybe I need a nap, too.

Monday, October 27, 2008

The Last Night Before

I can't sleep.

This isn't unusual, and when it is the night before going into the hospital, it's a given. But tonight, rather than being awake because of sadness that we're going in, or stress that I haven't packed the right things or worry that I'm forgetting something that needs to be taken care of here at home ... rather than any of that kind of wakefulness, it is a different sort.

Excitement. Happy excitement.

Tomorrow is Little Warrior's last scheduled chemo hospitalization.

(Didja notice how I put in that word "scheduled" as kind of a mitigating sort of thing, so that I wouldn't have to go through the whole list of my superstitious ramblings, in fear of setting off some kind of bad luck? Ah what the hell ...)

PLEASE GOD, KNOCK WOOD, THANKYEWJESUS!

Now, there are certainly things that could change this, like if her counts suddenly nosedived, or they don't have a room, or ... well, that last "or" is one we don't want to think about, isn't it?

But hopefully, all will be well. Her counts will be up, a room will be available ...

And cancer will be over.

Little Warrior has been talking about this, nearly since we started. "On Halloween, cancer will be over."

If all goes well, we'll get out of the hospital on Friday. Halloween.

This week, my dad looked at her, running around like your average jet-propelled 3 year old and said, "You know, maybe we should just believe her. On Halloween, cancer will be over."

I have had the occasion recently of worrying about the baby of one of my blogfriends. Her situation is different from mine; I can offer no wisdom, no tips, only, "I am thinking of you."

So you see, I've had a taste of what you have had. For six months now, you have cared. And 2 years before that.

Thank you. I know how your heart can hurt for someone you've never actually met.

I know that even in the absolute best case scenario, nothing will be clean cut. I will not come home, unpack the bags I've been hauling for 6 months, have a good shake, and get back to normal life.

There are things to be processed. Questions to be answered. Little Warrior's immune system won't be up to snuff for about a month. I know it will take my emotional immunity longer to regain its strength.

LW has scans the week before Thanksgiving. Her first "off-treatment" scans. And if those are clear, then every 3 months.

But now, tonight, I am allowing myself to be hopeful.

Still and all, though ... I really need to get to sleep.

Sunday, October 26, 2008

The Boy and Barack Obama

I mentioned, below, that The Boy is gaga over Obama. Let me expand on that.

I guess it was about last February that he saw a speech of Obama. He was entranced. Here, he was watching someone who talked about things that he believed in. Someone who acted as if people can do great things together.

He began reading everything he could get his hands on about Obama, watching the political shows, and asking every adult their opinions.

He has so been lit on fire that he has decided that when he grows up, he wants to be president. Perhaps that's not that unusual. Except that at 12, he has decided that he is going to go to a good college, get a degree in Accounting, go to law school, be a lawyer for several years, then go into politics. He has seriously discussed with me whether having a UU minister for a mother will make his run for the presidency difficult.

After watching some of the things both candidates have had to deal with, he's decided that the easiest thing is for him to just live a life on the straight and narrow. No drugs, no sex shenanigans.

This is the effect Sen. Barack Obama has had on my son.

Will this last? Heck if I know. At 12, I wanted to be a country singer. But it's fun to watch. And what a concept -- a politician as hero to a 12 year old boy!

And he's already started on his plan. He competes in his first debate tournament next month.

Saturday, October 25, 2008

The mark of a great DRE

The BFF-DRE is in Albuquerque, along with a gaggle of other Unitarian Universalist Directors of Religious Education. She went to Barack Obama's rally. She called me.

Well, of course. I'm her best friend, right?

She immediately ... asked if The Boy (12) were still awake. I handed him the phone. She held her phone up for the duration of the speech, so that he could hear it, "live."

He is ecstatic. After the speech, he literally danced around the room.

And that, my friends, is the mark of a great DRE.

Edit: To clarify, The BFF-DRE was not attempting to influence the next generation's political beliefs. The Boy is super gaga over Obama, so much so that ... wait, that'll be a whole post in itself.

Friday, October 24, 2008

Yes Day

My father called me a few days ago and announced that he and my mom needed to have a "Yes Day" with Little Warrior. So yesterday morning, hat on head, carrying a little backpack and a big tote bag, she was delivered to their home away from home during All of This, their RV.

I started "Yes Day" at my house a few weeks ago. LW hears "No" so much. No, you can't go to the store. No, you can't play with other kids. No, no, no. Take this yucky medicine. Stick out your finger to get it pricked.

So on one day where she didn't have any meds scheduled and no visits to the doctor, I said, "Today is Yes Day. Unless there's a really, really, really, good reason, I will say Yes to whatever you ask for."

We read a lot of books that day. Hard to complain.

A few days later, she spent part of the day with her grandparents. "It was Yes Day with Bubbe and Pops," she informed me later. "Is every day with them 'Yes Day'?" I asked her. She grinned and nodded.

My parents loved that. My strict, non-indulgent parents ... well, they disappeared a few years ago, to be replaced with these two marshmallows bobbing in a sea of warm grandparently chocolately goodness.

So, yesterday, she had a day of Nuttin' But Love. My dad even went to McDonald's, an unfamiliar territory, and bought her a cheeseburger for lunch. Unfortunately, he's not down with the world of Happy Meals, and in his effort to get the smallest burger, he got her a homestyle burger, which was unfamiliar, and remained uneaten. (But OMG, what a great story, hearing about my clueless dad asking for guidance from the oblivious counter guy.)

Cheeseburgers and jelly sandwiches and playing "store" with Bubbe's pocket change and then climbing into their bed for a long, long nap. For some reason, the kid that never wants to sleep at home absolutely loves sleeping in their trailer.

Everyone deserves a Yes Day.

Wednesday, October 22, 2008

Shake shake shake, Senora

FLAPPITY-FLAP-FLAP-FLAPPITY-FLAP-FLAP-FLAP-FLAP!

(The sound of Lizard Eater shaking it off.)

Cancer has stolen enough from me and my family. It's *&!! not going to steal our Halloweentime.

Happy Samhain and a Happy Haunting to Ye. I'm off to make my list ... spiderwebs, silly string, candy ...


Tuesday, October 21, 2008

Trusting the Universe

A friend and I were talking about the end of LW's treatment. I explained that I was more nervous about being off-treatment than on. Once chemo ends, what's going to happen? She said, "oh, so you're just going to have to trust the universe."

Eh?

No, no. I explained that I don't trust the universe. I mean, it's not any kind of antagonism, it's just a neutral thing. How can I "trust the universe" when I have so many friends who are in excruciating pain because their child has died? Um, sorry, but trust in one hand, spit in the other, see which fills up faster ...

It's the same as those with great faith in a sentient God who say, "Trust in God," "Trust in Jesus," etc. I just cock my head at that ... I don't understand. Many children die every day. God doesn't keep that from happening.

I'm sure they'd say something then like, "If that happens, it's because God (or the universe) has a plan."

And at that point, I try not to roll my eyes.

I don't trust in the universe; I don't really understand the concept. Along with "everything happens for a reason," and "cancer parents are special," that idea left me the day we were told, "Your daughter has a tumor." The first time.

Glad for those who draw comfort from the idea that it does, but for me, um, no. Especially not today, when I find out that in another one of our Wilms' families, a family whose child really has been a miracle -- and I don't say that generically, this is a child who was not expected to make it through one night and he survived that, but is still fighting cancer -- in this family, a family of tremendous faith, Mom just was diagnosed with her own, very serious, cancer.

I have another friend whose child is fighting cancer at the same time my friend's father is fighting cancer. Talk about the sandwich generation.

So, no, when LW goes off chemo, I won't just calmly trust the universe.

I will do as I did last time ... try to live fully between the scans that will come every three months. If I'm lucky, and capable, I'll do okay for most of the time, just losing my mind during the week before each scan.

And if I'm very lucky, that scan will show that I get to do the same for 3 more months. Until the next scan.