The Latest CaringBridge Post

I'm not entirely sure how this next while is going to go, but I think the end is very near. I'm just re-posting the post I wrote for my mom's friends at CaringBridge. Not sure if I'm going to feel like posting like crazy or if my words will be trapped in my head. At least you'll know why.

Hospice 

Last month, Mom decided to discontinue chemotherapy and has opted to receive hospice care. Our first meeting took place two weeks ago. Since then we've had a wonderful nurse, Vlas, who has been visiting mom at home and taking care of all of her comfort needs.  

We're not sure how much longer we'll have with mom. For the last couple of days, she's not been eating or drinking much, which is a difficult transition for all of us. Vlas--and a bunch of other sources--have assured us that the curbing of her thirst and appetite are perfectly normal end of life developments. She's sleeping a lot too, which is also to be expected. 

Pain control has been an issue. They've adjusted the medications several times and seem to be coming to a reasonable level of control. As you pray for us, please pray that she can be comfortable for her remaining time, whether that time is measured in weeks or months. We have felt the power of your prayers many times in this journey, and I know the Lord will answer our earnest prayers. 

Thank you so much for all of your love, support and prayers. 

Jami

Apropos of Nothing

Many of you know that I am a convert to the Church of Jesus Christ of Latter-day Saints and you may have wondered how the daughter of a Southern-Baptist-turned-nudist-hippy mother learn about a belief system that is so hated by both of the worldviews from whence she came. Saturday morning cartoons, of course.

One morning, little 5-year-old me was watching a teeny tiny black and white TV. A tiny cartoon Donny Osmond sang "Puppy Love," and I fell. Hard. In love with a cartoon boy. Not too long after that I saw the commercial for Donny Osmond's greatest hits and began the beg-a-thon. A successful beg-a-thon. I had the album in my possession at the next gift-giving occasion.

He sang songs about little girls with blue eyes who are much too young to know about love. I wanted to marry him. But he was SO OLD! Would he wait for me to grow up?

For five years, I hoped. Then one day my mom burst my bubble.

"He's Mormon. Mormons only marry Mormons."

"What?"

 "Mormons. It's a religion. Like Catholics or Jews. They only marry people who are in their religion."

 "How do I become Mormon? What do they believe?"

"You have to be born a Mormon. I know they aren't allowed to go sleeveless. All their shirts have to have some kind of sleeves."

I cried. A ten year old kid crying because Donny not only was ten years older than she was, but also would never marry her because she was (by this point) Presbyterian. Honestly, my little heart hurt SO much. I can still feel the memory ache today.

Three years later, I'd mostly overcome my puppy love, and one of my mother's facts on Mormons turned out to be false. You don't have to be born a Mormon. My step-mother joined the Mormon church and when I came to visit that summer, asked me if I wanted to meet with the sister missionaries. (Nuns? Mormons have nuns?) Sure. I guess.

Any guesses what my first question was? Yep. Why do Mormons have to wear sleeves? My second was related: What about Marie? She went sleeveless all the time! So my very first piece of legitimate information about the church was about temple garments as explained by two LDS sister missionaries to a bra-less 13-year-old in a tank top. (I'd gotten to the hippy part of my existence.)

Eventually, I joined the church, but the journey was quite rough, worthy of its own blog post (or two).

This story came up the other day, and I turned to You Tube to illustrate.

"Is that Justin Bieber?!" asked V, my besotted 9-year-old.

"No, but now that you mention it. . ."

                                           

When Delusions Collide

Saturday, my mom started hospice, the in-home kind. So yeah, we're getting there. The chemotherapy is not helping and is, in fact, sapping all joy and comfort out of her remaining days, so she stopped. The doctor said that of course we don't know precisely how much longer she's got, but given her symptoms (weight loss, appetite loss, difficulty breathing, blood clots, recurrent infections, routine dehydration, weakness) and the x-ray confirmation that tumors are getting more profuse and bigger, not smaller, we are looking at a couple months.

The first hospice meeting was an enrollment meeting with some kind of administrator/nurse, Linda, a nice lady. She explained the program to us. Explained the stringent requirements. (Did you know you can get kicked out of hospice if you plateau too long? [I wish!] Must be journeying toward death to qualify.) She answered our diverse questions, and exhibited incredible patience.

My mom asked a few reasonable questions and did a whole lot of listening. My aunt sat in one corner, saying things like "She's getting better, not worse; she doesn't need this." My sister sat in another corner, shaking and weeping softly. My mom's friend gave a spirited account of her volunteer service in Hurricane Katrina. My 18-year-old, Elaine, who's the one actually living with her, said nothing. We all recoiled in horror when we realized they wouldn't give her IV fluids at home (which she does twice a week), that at some point she'd be too weak to go and they still wouldn't do it.

Honestly, it's all a bit of a surreal blur. Elaine says I behaved well. (Good to know as there was a great deal of "OH, FOR HEAVEN'S SAKE, PULL IT TOGETHER, YOU WEIRDOS!" going on in my head.) Honestly, I can't remember much except my family's bizarre behavior and going through all mom's meds with Linda, the RN.

Some real perks to hospice: We no longer pay for OTC or co-pays on prescriptions. One call gets us medical advice day or night. One nurse contacts all of the doctors for my mom. Some of this uncontrolled pain will be eased. Someone else is going to change her sheets twice a week. (My shoulder sort of hates me.) A social worker will help our family work through some of the issues surrounding mom's illness and death.

And boy, are there some issues. One of the drawbacks of moving to hospice care is that it's really bringing out our different points of view. Very uncomfortable.

My aunt believes that the doctors don't know what they are talking about and my mom is not going to die from this and if we would all just send our positive thoughts into the universe she would be recovering from all these nasty complications from the meds much faster.

My sister believes that she will not survive my mother's death and there will never be happiness again. Ever. About anything.

I believe that as the chemo works it's way out of my mom's system, she will feel better for a while. Then the cancer will attempt a take-over and my mom will ultimately die. (At which point, the cancer loses forever. This thought is grimly satisfying. Cancer never wins. Never.) Then my mom's spirit will join her family and friends who have gone before her in the spirit world and she will await the resurrection. Then she gets a perfect pain-free body, as does everyone else she loves. I like my worldview best.

Still the suffering right now is hard. I spend a lot of time pondering the purpose of all this. Started reading The Book Thief, which by all accounts is fabulous, and had to set it aside. Anything narrated by Death is going to have to wait. For a long while, I'm guessing.

I've decided that it's OK that my husband under-reacts to emotional trauma. (see http://www.supermisc.blogspot.com/2010/11/his-and-hers.html) He's calm. He and God are kinda holding the world together for me.

Ode to Clothes

Yeah, I know—it's a poem (not mine--do I look mean?). Give it a shot. It's easy and you might like it.

Ode to Clothes

Every morning you wait,
clothes, over a chair,
to fill yourself with
my vanity, my love,
my hope, my body.
Barely
risen from sleep,
I relinquish the water,
enter your sleeves,
my legs look for
the hollows of your legs,
and so embraced
by your indefatigable faithfulness
I rise, to tread the grass,
enter poetry,
consider through the windows,
the things,
the men, the women,
the deeds and the fights
go on forming me,
go on making me face things
working my hands,
opening my eyes,
using my mouth,
and so,
clothes,
I too go forming you,
extending your elbows,
snapping your threads,
and so your life expands
in the image of my life.
In the wind
you billow and snap
as if you were my soul,
at bad times
you cling
to my bones,
vacant, for the night,
darkness, sleep
populate with their phantoms
your wings and mine.
I wonder
if one day
a bullet
from the enemy
will leave you stained with my blood
and then
you will die with me
or one day
not quite
so dramatic
but simple,
you will fall ill,
clothes,
with me,
grow old
with me, with my body
and joined
we will enter
the earth.
Because of this
each day
I greet you
with reverence and then
you embrace me and I forget you,
because we are one
and we will go on
facing the wind, in the night,
the streets or the fight,
a single body,
one day, one day, some day, still.


- Pablo Neruda

Just Whining

Speaking to me is a bit risky these days. I burst into tears without warning. Not without reason, just without warning. Wanna talk about my mom's cancer? Leakage. Wanna talk older children's testimonies? Shaky voice. Tears. Snot. How's about the homeschooling of my special daughter? Bewildered look. Quivering lip. A muttered mention of an upcoming appointment with the pediatric neurologist which might (or might not) yield helpful information.

New charter school for three of the kids? Good for two. Pretty unpleasant for one. It's likely I can get through that subject with a totally calm face. But don't ask how I'm feeling. Don't ask how my husband's business is going. Or how the finances are coming along. Definitely don't ask how all these stressors affect my poor husband.

How's the rheumatoid arthritis? Better, thanks. Yay, I can hold a convo on that one. The weather? It's been strange lately, don't you think? As long as I stay away from anything that I need to talk about I can talk. Ironic, no?

I've taken to ditching Sunday School for the family history library. (Dead folks ask no questions. If they're rejecting the gospel, they are keeping it to themselves. There's not a thoughtless comment among them.) At home (in between dealing with all of that weepy stuff) I've planted my butt in front of the twenty-some odd seasons of Star Trek in all it's mind-numbing diversity.

The bishop wants to meet with Sam and I to talk. I can't think of anything I'd rather do less than cry for the bishop, but I can't even manage to say that without crying. Maybe I can pull off the first lady adoring gaze at my husband while pondering peaceful fields of wildflowers. I don't have a good hat, but I still think I can do it. Sam can field the questions.

But then again the bishop might just be asking us to work in the nursery. He's a nice guy; I'm sure it'll be fine. Tearful, but fine.

The Snack Time Minefield

Nine years ago when Nat was a Kindergartner, we had some issues with class snack. We were montessori-ing it at that point, and snack time and civility was a big deal—bring your own placemat. So the plan was that every twenty days we'd bring snack for twenty kids. Simple enough, no? No.

First came vegan mom's horror, Oreos. ("What kind of person would feed their five-year-old Oreos?!? At 10 in the morning!?!" [I plead the fifth.])

Then came nut allergy mom. ("Actually, if any of the kids eat peanut butter before they come to school, would you mind bathing them thoroughly before they leave for school? In fact, could you just stop eating peanut butter in your homes? Thanks!")

Then the dairy allergy raised it's ugly head. ("Not everything. Just milk, yogurt, cheese, butter, sour cream, those sorts of things. Bread is OK.")

"Please no wheat allergy. Please no "dried fruit causes cavities" dentist's kids, please!" became my prayer. I distinctly remember the day I went to make ants on a log and bought cream cheese to use instead of pb, but then realized that cream cheese was dairy. OK, ants next to a log.

Such a stress. It took months before the teacher came to the conclusion that everyone should bring their own snack for civility time. In the meantime, I just brought in boxes of back-up snacks and tried to stay out of the line of fire.

It's hard to find something that works for twenty different mom/kid combos. One person's yum is another person's yuck. Hummus, a favorite of vegan mom, gagged my daughter. People's definition of healthy varied widely. Although most of us recognized Oreos as a nutrition fail, fruit snacks, yogurt, and muffins also raised a ruckus among some parents.

Fast forward to Caroline's class which started last week, it took precisely two days and a glance over everyone's health forms to reveal that some of our cuties have nut allergies (almonds, walnuts, pecans—no peanuts, amazingly enough) and dairy sensitivities. By that night an email went out explaining the issue and explaining the new snack procedure. It was pretty complicated: bring something your child can and will eat in a container marked with her name. Works for me.

But here's where my brain stalls out. You can run into kids with conflicting needs. My best friend's son had food issues. He ate nothing but Jif smooth peanut butter and honey bear honey on Home Pride butter-top white bread (PBH). What happens when that PBH boy is in the same school as death by peanut fumes girl?

When Nat was in fourth grade she couldn't bring PB in her lunch, because there was a girl in her class that had a preschool sibling at home who had a deadly allergy. There's an entire school in our district that is peanut-free. And I get it. You can't just say, "Suck it up and carry an epi-pen! Gotta enter the real world sometime, kid." But can you say, "OK, we'll go to tube feeding for you, PBH kid"?

I'm guessing most people would vote for PBH boy to just be hungry until he gets home and say that if you just feed a picky child a variety of healthy foods and don't give them their food of choice when they fail to eat the options before them, they'll get hungry enough to eat something other than PBH. Eventually. I bear my testimony that there are children in the world who will not eat rather than eat undesired food. I've met them. I've seen heroic efforts put forth by admirable parents. I've seen the kids begin to waste away. Not pretty in a land of plenty.

So what to do when picky runs into food allergy? No clue. And I'm glad I don't have to decide it. Just glad our Kindergarten teacher decisively took care of snack so quickly.

Stand Strong, Little Domino

I know you're thinking "what's with the domino?" If you're not, you should be, because the sweetness of this gift is all about the domino. It's a gift from a kind and busy woman. This week, one of the speakers in sacrament meeting had been talking about adversity, and afterwards my friendly acquaintance and I were talking about life's challenges and I shared my domino image.

When things get tough and it seems like things are hitting from all sides, I have a mental image that holds me together—dominoes. I see lines of dominoes all converging at a single domino. And then from that single domino come another set of domino lines, from which spring even more domino lines. The first set all fall one after another, and then stop at the single domino. That domino stands strong and doesn't knock over the remaining lines.

I'm not saying I'm Super Domino. I'm not. And something may happen down the line that topples the setup, but it won't be me. It won't be because I quit. I don't want to do hard things. I'd much rather life was fluffy and more picturesque, but it's not. And I have dominoes depending on me. Most of the dominoes that strike me are things or situations, but all of the dominoes that stand in front of me are people. People worth standing strong for, regardless of the pressures from behind.

So that's the deal with the domino (and the flowers are pretty too).

My Yvil Sister is Concerned

I'm not feeling particularly depressed or insane, but my sister who despises blogging recently hinted that perhaps I'd be a bit more sane if I started blogging again. In the same conversation, she suggested that therapy might be an option or maybe a caretaker's support group. I guess she thinks I have an issue. Perhaps she has a point. I could use an outlet. I could use a thought-comber, something to untangle the nasty, painful knots of thought I've got. Obviously I've used the blog as a therapist before--I have a whole slew of past posts under "blogging is cheaper than therapy." Therapy is expensive and blogging's cheaper than almost everything.

I did go to the caretaker's support group with the yvil-sister a few weeks ago and I don't think going with her is going to be particularly supportive. There was one other person there, another care-giving daughter, about twenty years older than us. The poor woman hardly got a word in edgewise as we pumped the social worker for info and opinions. The social worker (in self-defense I think) gave us a few books which are proving helpful.

I've been walking with a friend, one of the smartest, kindest women I've hung out with in a long time. That's been therapeutic, physically and mentally. (I've been taking a new medicine for rheumatoid arthritis which has enabled me to exercise for the first time in years. Guess that's a subject for a different post though.)

Don't have time to fiddle and edit the post. But that's the news and I guess I'll try blogging again to see if my sister feels better.

Sad News

My mother-in-law died on Thursday after courageously going through nearly four years of chemo. (Not a whiner, my mother-in-law.) I'm surprised at how sad I feel. We weren't close. If she lived another twenty years, we wouldn't have become close, but she is the mother of the dearest man in the world and the grandmother to my favorite six kids. Her death is a reminder that my mother's is coming. That mine is coming.

OK, now I'm going to go watch a comedy and laugh until I cry.

Longer than a facebook update, but not much.

I know most people who visit my blog are here to look at lice-ish pictures, but for the few who come because they know and love me, here's a quickie update. In January, my mom came super-close to death. The second chemo treatment left her gasping and pretty much unable to get out of bed. Freaked me out. So she stopped chemo for a while and then started up a different type. Same meds, but by pill instead of IV pump. And it's going much better. Looks like she'll be able to complete this set. She just finished up her third two-week round. I think they're doing another nine. She's tired, but not nigh unto death. She's back to talking about her 10-year plan. I think the 10-year plan would be miraculous, but I'm glad to hear about it again. So now the borrowed computer is telling me I have 7 minutes, so farewell for now. I miss blogging. Maybe I'll start again. Though I must say facebook is making me lazy. Like. Click. No thinking required. Anyhow, chao.

Miss Delacourt is Très Charmante.

I love me a good regency.

And what, pray tell, is a regency?

Well, let me tell ya.

You know this lady, right?

She wrote these novels,

All are set in Regency England

when the Prince of Wales was regent during

George III's insanity, 1811-1820.

They wore clothes like this:

(Just spent thirty minutes

staring at 19th century fashion images.

Where does the time go?)

Anyhow, back to regencies.

So, the thing is Miss Austen died a while back

and many addicts fans needed more.

More clothes, more banter, more romance.

More. More. More.

(It's sort of an insatiable little habit.)

Writers began to oblige the market.

(Georgette Heyer, Elizabeth Mansfield,

and Marion Chesney,

to name a few of my faves.)

Lots of sparkling dialog.

Glorious clothes.

Some farce.

A little social commentary.

Plenty of variety,

always returning to the basics,

frothy, sweet, fun and CLEAN romance.

In the 90s, publishers began to lose sight of the basics

when they began to encourage writers to filthify their work.

I stopped reading them.

In fact, so many readers stopped reading them

that authors stopped writing them.

I could only get my fix by re-reading.

Which sucked.

Enter Heidi Ashworth, novelist

When I realized that she wrote clean Regency Era novels.

I begged an advance copy of her first novel

Miss Delacourt Speaks Her Mind

which I blogged about here.

In general, I'm against sequels in romance.

Most characters just do not have the oomph to

make it through a sequel credibly.

Miss Delacourt and Sir Anthony do.

Grandaunt Regina and Lucinda do.

Miss Delacourt Has Her Day

maintains the Ashworth sparkle

without taking itself too seriously.

It's filled

with fun and romance and

longing and doubts

and clothes and banter and

obnoxious relatives

and sweet resolution.

I love this book.

I'm betting you will too.

Goodreads is giving away a copy.

Go Enter.
(By clicking the highlighted words.)

Also Heidi is having a Miss D-inspired rosy giveaway at her place.

Go see.

Made a Video For My Mom

It's three minutes of symbolic fun! OK, it's just symbolic. Not fun. But it made me cry to make it and it made my mommy cry to watch it. The good kind of tears. She wanted her friends to be able to see it so here it is. Cut to the chase if you like by going to about 2 minutes 10 seconds.