Great God, I'm On My Way

I'm on my way
To the freedom land
I'm on my way
To the freedom land ...

A vacation I didn't know we could take! "Church camp" with all my friends. Vodka, packed! Cachaca, packed! Guitar, packed!

Toodles!

We Made People Cry

Tonight, we went to the American Cancer Society's Relay for Life. Little Warrior took her "survivor lap" with all the other survivors. She was by far the youngest there. I walked the lap, with her in the sling, looking somewhat absurd, as the smallest survivor tshirt they had was an adult-small. I put it on her anyway, so she had the appearance of drowning in a big purple puddle.

As we walked the lap, people on the sidelines clapped. Well, anytime LW hears clapping, she claps. So there she is, folded up like a pretzel in the sling, her head sticking out of the giant tshirt, clapping her two little hands.

We left behind us a lot of people wiping their eyes.

Survivor. 14 months old, and a survivor of cancer.

Dayum.

Little Darlin' ...

Woke up with a song in my head. Same song I walked down the aisle to when I married The Husband.

Little darling,
It's been a long cold lonely winter
Little darling
It seems like years since it's been clear
Here comes the sun.
Here comes the sun.
And I say,
It's all right.

Little Warrior had surgery yesterday to remove her portacath. It went just fine. This morning was cheerios and bananas. And I've got lots of laundry to do. It looks like we can really-o, truly-o, go on our trip.

The trip is dead. Long live the trip.

Tee-hee.

The Most Beautiful Word in the World

Remission.

Stem Cell Research Votes

Bill Frist supports expanding stem-cell research and Byrd is undecided?

http://www.mercurynews.com/mld/mercurynews/news/politics/15060034.htm

Either the world is spinning backwards, or I'm missing crucial information.

Birthday Cake Wishes

Early this morning ...

Princess: You know what I wished for with my wish on my birthday cake?
Me: Hmm?
Princess: I wished for all of LW's cancer to go away.

Princess: Stop hugging me so hard, Mom.

Smack in the middle between Hope and Despair

That's where I'd be, if you could Frappr an emotional state.

One one hand, hope. I've spent most of the day (when I'm not chasing Little Warrior around) doing mounds of laundry, trying to come up with 5 piles of 5 days of perfectly matched casual outfits for our trip.

The Husband is on his own.

And emailing my friends who are going ... who is bringing a blender? A food processor? A coffee grinder? And playing a few songs on my guitar so that in the off-chance we can fit my guitar in, I'll have calluses.

Meanwhile, The Husband tracked down the radiologist to see what the sitch is with Little Warrior's port.

(Momentary veer of topic: my Mom called today and said, "Have you heard about the port?" I was busy with laundry and thought she was calling (as she and my dad often do) to let me know about something happening on the news. Thoughts immediately went to an American port being blown up by terrorists. It took a couple of seconds to sort out the conversation.)

So, The Husband talks to the radiologist, who says that he can't tell us anything, it needs to come from the oncologist. The Husband explains that he just wants to know about the port. No real information either way.

So, in amongst packing for a trip, I am worrying that tomorrow, we'll find out that we're not taking a trip because they've found something bad, and we're going to have to jump back into the terror and fear and horribleness that has been the last 6 months.

Talk about terrorists.

Fear ... Oh yeah, I recognize this feeling

Okay, so I think I know what the deal is with post-traumatic stress, now.

Day before yesterday, I couldn't remember what that all-consuming fear felt like. I mean, I remembered I had it, but it's like remembering pain. Thankfully, you can't summon up that feeling as a memory.

Yesterday, I could.

We got there, and after the normal long wait, the nurse began accessing her port, then was pushing saline and Little Warrior was screaming. I thought maybe it was just that her EMLA (numbing) cream had rubbed off. Then, suddenly, I saw a big BULGE in her neck.

Me: Stop, Stop!!! There's a bulge!
Nurse: Where??? Where???
Me: Her neck, her neck!!!

Things got dicey for a couple of minutes, someone raced off to get the radiologist, and the nurse was looking very worried. Sez I, 'What's going on? Is this serious? We're very scared right now, tell me what's going on!'

That seemed to 'snap her out of it,' and she said no, it wasn't dangerous because it was just saline, but that they needed to see what was going on.

Well, the radiologist thinks that there was a blockage in her line and the nursed pushed too hard, so, it perhaps ripped a hole in her line. On Monday they'll tell us what they see in the CT of her chest/neck. If the CT/MRI are clean, they had planned on removing her port anyway, so this may just speed things up.

Whew ... those 2 minutes of total fear took about 10 years off my life. And The Husband was ready to rip someone limb by limb.

Amazing how many thoughts you can jam in 120 seconds.

oh my god is this going to be it? are the people going to rush in here and rush her off to the OR for emergency surgery after all this are we going to lose her to a stupid human error is this an embolism what does this mean this can't be happening ....

But this morning, she seems fine. Ravenous, of course. But crawling and getting into stuff, just like normal.

AND ...

Some initial good news -- we chatted with the radiologist after Little Warrior's CT/MRI and he said that he didn't see anything. Of course, they still have to go over them with a fine tooth comb, but it was an initial 'good.'

Back to Normal/Anxiety

On one hand, this has been a great week for "back to normal." Went to playgroup, saw all our old (grownup and kid) friends, did a mondo 4 family shopping trip at Costco (we're all going on vacation together) ... it was very Big Love. But without the french braids or prairie skirts. Or sharing husbands.

But tonight ... well, tomorrow are the scans. She'll be sedated then get the CT and MRI.

Was sitting on the couch, not thinking about it, but just feeling turribly turribly anxious. You know how you feel anxious, then you peruse your life to say, "Why am I feeling this way?" Hmm, did I say something stupid today? No. Do I have a job I need to do? No.

Oh. Yeah.

It's been a month since I've been down to the medical center, since we were able to get blood counts at the local pedi office. I got real used to normal.

It's not abnormal. It's the "New Normal." Green is the new pink. Down is the new up. Chocolate is the new vanilla.

sigh.

Gumbo and the Zen of Letting Things Sit

Okay, so you just can't effectively write down the sound of twisting the top off a bottle of Shiner Bock and taking a refreshing swig.

Last night, I had the aforementioned beer with a big bowl of gumbo. I am not normally a beer drinker, much prefering wine or even a cold soda, but beer and gumbo are just perfect for each other.

Culinary note for the cooks out there: I now make my gumbo with two rouxes and it is vastly superior to one roux. I make up my roux and let it get to about sand color. I remove about a half a cup of the sand-colored roux and set it aside. I cook the rest of the roux til it's the dark color I like for flavor. When I mix it all in the gumbo, I add back the sand-roux.

Why: the more you cook the roux, the less thickening-power it has. So, I keep some of the sand-roux for that velvety texture, and use the rest for flavoring. Try it and see.

Now, back to the story. The gumbo was made day before yesterday. As most people know, soup tastes better the second day, and gumbo is no exception. The sitting allows the flavors to meld and blossom ... oh, I don't know. I just know the results are better. Tonight, the third night, it'll probably be even better.

I am realizing the importance of letting the soup of my brain and soul just sit for a while, too. Right now, I have no clarity. I have no answers. Millions of questions, no answers. PeaceBang's question, How Do You Know God Loves You? Puh. Right now, my answer would be that I don't know this, as I can't wrap my head around a personal God.

Of course, that's not all that I can't answer. I can't answer whether it's selfish of me to want to just stay home and take care of my family, rather than going out into the world and attempting to make it a better place. I can't answer whether I will ever go back to seminary. I can't answer whether I will want to go into the pulpit again. Hell, I can't even answer should I get a haircut or not.

These aren't questions that anyone else can answer for me, which is a lesson in itself, as I have always been the person rushing to help someone answer their questions. What hubris.

So, I'm going to let the soup sit. On Friday, we get a CT and an MRI. The following Tuesday, we get the answers from that. If all goes well, I'll leave shortly after that to spend a week with members of my beloved community in the company of members of our larger regional denominational community. (Summer camp.) After that, a trip to my folks'. Mother LizardEater will be happy to help with the question of my hair, as she would love for me to have a Dorothy Hamill haircut, as I did when I was 6. (LE's hair is quite long.) Sorry, Mother, but LE has to figure out all the answers by herself.

Let the soup sit.

Arbitrary Peacebang: All that's right and not within our churches

Two great posts today from UU bloggers, one touching on what I think is so TERRIFIC in our churches and one that is so detrimental.

First, the detrimental:
http://peacebang.blogspot.com/2006/07/chastening-rod.html

Brilliant post, exposing feelings, humility at perhaps being guilty herself, and big picture view of how this affects our denomination. Like PB, I am sure that I, too, have jumped "immediately to correct their credulous ignorance, greeting their enthusiasm with Important Information and establishing myself, not as a sister seeker, but as an Authority On the Subject."

Likewise, I have been in the position of working through my thoughts on something, only to have someone quash my sharing with condescension.

And, Arbitray hits on what I am passionate about in our churches. Covenant groups.

http://arbitrarymarks.com/wordpress/2006/07/10/if-you-are-a-uu-in-a-covenant-group/

I have been a member of our church's "Spiritual Parenting" covenant group for about 7 years. During that time, the group has grown from 3 couples to so many we need two groups. (Not all couples.) We have seen each other through a stillbirth, a divorce, several births, group members leaving and new ones joining, books as varied as the Dr. Phil family book to Voluntary Simplicity with Children to Stephen Covey's family book.

And oh yes ... the baby daughter of one of our families got cancer.

The friends that I have waxed rhapsodic about have come from this group. Without the group, I think we would have become friends, though I doubt we would achieved the level of friendship, of intimacy, that comes by being a member of such a group.

Women usually outnumber men in joining covenant groups, but this group has shown how much men need such a group, too. They have created their own relationships, as they share what it is to be a man, a father, and a husband in modern times. The Husband frequently says, "I like church ... but I *need* our SP group."

And you know, PeaceBang's post and Arbitrary's fit together. Because in a good, well-facilitated covenant group, you have the space to explore your spirituality, without being patronized. In our case, it is part of our covenant, that we are here to learn from each other, but not to teach each other. Perhaps that doesn't make sense. But we all understand it.

We all know that perhaps the biggest purpose of a covenant group is to give us the chance to learn to listen.

From that ... springs understanding, spring relationships, springs the kind of friends who show up at my daughter's hospital room two days after she is diagnosed with cancer, with clean clothes, avocado burgers and their hearts.

and though the live-oak glistens there in Louisiana, solitary, in a wide flat space,
Uttering joyous leaves all its life, without a friend, a lover, near,
I know very well I could not.

Words from Whitman

When Lizard Eater got married, she asked her father to find a poem and read it in the ceremony. When he found his pick, he said, "Just listen. Then tell me what you think."

He read the below poem to me. I stood there, almost speechless, then said, "it's perfect."

"Not everyone will get it," he said. "They'll wonder why I'm reading that in a wedding."

"We'll know, "said I. "And some people will get it."

I have loved the poem ever since. And now, with my wonderful friends who have held me up, I think of it again.

I SAW in Louisiana a live-oak growing,
All alone stood it, and the moss hung down from the branches;
Without any companion it grew there, uttering joyous leaves of dark green,
And its look, rude, unbending, lusty, made me think of myself;
But I wonder’d how it could utter joyous leaves, standing alone there, without its friend, its lover near—for I knew I could not;	5
And I broke off a twig with a certain number of leaves upon it, and twined around it a little moss,
And brought it away—and I have placed it in sight in my room;
It is not needed to remind me as of my own dear friends,
(For I believe lately I think of little else than of them;)
Yet it remains to me a curious token—it makes me think of manly love;	10
For all that, and though the live-oak glistens there in Louisiana, solitary, in a wide flat space,
Uttering joyous leaves all its life, without a friend, a lover, near,
I know very well I could not.

Welcome Back, Normal

Normal changes to Not Normal very fast. You go to playgroup in the morning, and that evening they're taking you up to the Pediatric Oncology floor and you're thinking, "Wait! They must think my baby has cancer!"

Sequeing from Not Normal back to Normal happens very slowly. Imperceptibly.

Til one day, you're doing laundry. The aforementioned baby is on the floor in the laundry room, looking for things to stick in her mouth.

You're just folding laundry. Putting diapers in the dryer because the chemo is over and you don't have to use disposables anymore. You fold a blankie and think, hmmm, I don't need to keep stacks of blankies around. I was just using them for when Little Warrior threw up and she hasn't in more than a month.

And then you think, hey, this has been the first week since before January 18th for us to not have to go to doctor's office.

It's not Old Normal. It's New Normal. New Normal has meds thrice a day and scans every three months.

And you never ever make the joke you used to about how with your first child, everything is sterilized and you're all about safety, and by the fourth, you figure it's survival of the fittest.

But it feels familiar.

It feels like Normal.

It's like the Unabomber Meets Bob Ross Meets That Freaky Guy in College Who Always Wanted You To Cry On His Shoulder

I just found this.

Run, do not walk to this site.

First, watch a Premade.

Then, make a Custom.

If you are somewhere public, suppress the urge to laugh hysterically.

http://www.brawnyman.com/innocentescapes/indexbroadband.html

*You remember Bob Ross. That really sweet guy who used to do the painting show on PBS with the soft voice talking about happy little trees.

When doing a Shot, always keep one's pinkie extended

No, of course I'm not letting Little Warrior do shots. She has to be at least two.

I did, however, allow her to suck on a wedge of lime. Apparently the chemo is still affecting her taste buds, because she thought that was pretty delish.

Got a call that her CT is on for next week; hopefully they'll get an MRI scheduled for the same time. We go out of town for 2 weeks, leaving on the 23rd, so I'm going to do all that is humanly possible to make sure we get the results BEFORE we leave.

You'll notice I said humanly. Not humanely. I make no promises.

Clothes, Irony, Etc.

Have just spent a pleasurable few moments of time catching up on Peacebang's site giving fashion tips for ministers.

Have reluctantly informed myself that the decision to carry on with seminary should not be based on the anticipation of dressing for the pulpit.

I remember watching Ally McBeal when it first began, and on one episode, perhaps it was the first, Ally said something about the real reason she and many colleagues became lawyers was for the opportunity to wear great clothes.

Tee-hee. That was definitely one of the attractions to my previous career, that of a marketing manager. "Polished" was definitely the order of the day, but since I was in the creative/advertising end of things, I could get away less conservative looks, such as some fabulous earrings or a trendy top.

In my current career, I try to not fall into the pitfall of mommy-wear, dressing like a sack of potatoes, but I do have a few limitations.

First: earrings must be some sort of stud-type, as anything that even remotely hangs down will be ripped from the lobes by the 13 month old.

Second: all outfits must be breastfeeding accessible. Actual breastfeeding tops are not necessary, as I am not generously endowed, but for nursing discreetly, no dresses nor form-fitting tops. However, tops must not be so loose that LW can play "flash the mommy".

Third: all shoes must be flat. When I am out and about* with Little Warrior, I am wearing her in one of my Mayawrap slings (somewhat color coordinated to my outfit, thankyourverymuch), but having those extra 16 lbs slung to my chest just does not work with heels.

*Okay, so for the last few months, it's been at the cancer clinic, not a trendy art boutique. Bite me.

And on the topic of dress ...

Was watching "Meet Me in St. Louis" for the billionth time and thought about the clothes of the turn of the century. Thought about clothes now. (Was wearing a tshirt and shorts at the time.) Marveled at irony that now, we have air conditioning, and washing machines/dryers/irons/dry cleaners, and we dress in a way that even the poorest of American society wouldn't have considered back at that time.

Huh.

Chocolate Cake Shots

July 3rd is apparently being good to many people, like myself (ay, caipirinha!) and Anne (Heck of a Job, Brownie!)

So, in honor of all mind-altering substances (cool words from someone who has never even had one toke of a joint), another recipe from Lizard Eater:

Chocolate Cake Shots

Okay, first of all, I swear this isn't a snipe hunt. When my brother gave me the recipe, I just knew he was pulling my leg. He wasn't. I'm not. Try it.

Layer equal parts vodka and Frangelico in a shot glass.

Take a lime and quarter it. Take a quarter and dip it in sugar. Sugar, not salt.

Bite and suck. Hold the juice. Take the shot. Hold it all in your mouth and count to four.

Swallow.

Tastes like you've just taken a bite of rich, dark, chocolate cake.

Warning: quite dangerous. The first time a person has this, they get a peculiar look on their face. Then they say, "Wow, it really does taste like chocolate cake!" Then they say, "Let me try it again to see if that happens the second time... fourth time ... eighth time ..."

Happy Day Before Independence Day. Hic.

Footprints In the Sand

Recently, I have heard folks both within my congregation and out in the wider UU world make statements that can be summarized as, "The reason why we meet as a church is NOT for community."

The community is great, they will hasten to add, but the raison d'etre is for spirituality, worshipping God, becoming more in relationship with the divine.

Okey-dokey.

For me, All Of This has given me a deeper, more profound appreciation for community.

During all of the ups and downs of dealing with our daughter's cancer, The Husband and I have agreed that what we have not felt is "alone."

We have further agreed that that had absolutely nothing to do with God. I'm glad that God helps others feel not alone, but the conventional definition of God has not been what sustained us.

You remember that old chestnut about Footprints in the Sand, right?

I like it when I was a kid, but when I got older, it began to grate on me. When I have gone through tough times before, it has made me feel stronger about myself that I could say, "I made it through that. On my own two feet." I was not carried.

Now, if like the story of looking back at the beach, I looked back on this period of my life, I know what I would see:

At least 50 sets of footprints with mine.

My community is like ever expanding circles. First and foremost, I have my husband; he is my best friend and my b'shert. Then, my family, who have flown down to be with us, stayed with our children, sent money for a maid. Then, my "posse," my tight circle of girlfriends. Then, my church community, who have brought casseroles, sent cards, even sent diapers. Then, my blogger friends, who have read my feeble writings, left comments, prayed for us.

Make that 100 sets of footprints.

Community ... ah, beloved community. Call that "God."