This morning, perhaps due to an electrical fire, 60-year old Big Tex burned down.
Friday, October 19, 2012
RIP, Big Tex
I remember Big Tex saying "Howdy, Folks!" as we entered the Texas State Fair, the one time I recall going, when I was probably about 6 year old.
This morning, perhaps due to an electrical fire, 60-year old Big Tex burned down.
This morning, perhaps due to an electrical fire, 60-year old Big Tex burned down.
Raining on my Parage
First, my car windows were left open accidentally last night . . . and we got 2 inches of rain. Mind you, we'd just had it detailed and it was wonderfully clean. f*********k.
Now, the neighborhood grocery store (I'm talking about you, Stop and Shop!) refused our request to have our bake sale there because we're not an official tax exempt organization. Which I had explained clearly to the manager on Monday, realizing that could be the hiccup, and he said it was ok. Well, apparently it's not. What a waste of time.
So now, I'm between a rock and a hard place. The goal was to help Sis have her bake sale to help her friend. And to make a little money for his family. Perhaps I had delusions of grandeur. But I realized I didn't want to advertise it at my house if I was going to spread the word, especially on FB. So somewhere public.
That's the hard part. Friends have come up with great ideas--like the soccer fields on Saturday--but it's all very heavily dependent on the weather, in a way the f****king grocery store wouldn't have been. And we're having such constant, crazy rainy damp weather. Who knows.
So I'm thinking of scaling back some and doing it on our corner if the weather is good and not having too many other bakers so that we don't have all this food waiting. Not what I envisioned.
Blah.
But still what Sis had in mind.
And that's it . . . .
Now, the neighborhood grocery store (I'm talking about you, Stop and Shop!) refused our request to have our bake sale there because we're not an official tax exempt organization. Which I had explained clearly to the manager on Monday, realizing that could be the hiccup, and he said it was ok. Well, apparently it's not. What a waste of time.
So now, I'm between a rock and a hard place. The goal was to help Sis have her bake sale to help her friend. And to make a little money for his family. Perhaps I had delusions of grandeur. But I realized I didn't want to advertise it at my house if I was going to spread the word, especially on FB. So somewhere public.
That's the hard part. Friends have come up with great ideas--like the soccer fields on Saturday--but it's all very heavily dependent on the weather, in a way the f****king grocery store wouldn't have been. And we're having such constant, crazy rainy damp weather. Who knows.
So I'm thinking of scaling back some and doing it on our corner if the weather is good and not having too many other bakers so that we don't have all this food waiting. Not what I envisioned.
Blah.
But still what Sis had in mind.
And that's it . . . .
Thursday, October 18, 2012
Ground-shaking
On Monday night, Sis came to us with some concerns, namely what she should do in the event of an earthquake, of all things. After telling her that people often stand in doorways, we assured her that earthquakes are relatively rare in Connecticut. Mama even pulled out a map of fault lines so we could compare California to Connecticut.
And then we had an earthquake here on the East Coast, centered in Maine, the very next evening. At 7:15 to be precise, while we were reading our bedtime story, Mouse in the Motorcycle. But we didn't feel a thing. I only heard about it later on FB, though it noted that they did feel it in other parts of CT.
After we tucked in the kids, and learned of the earthquake, Mama said, "Do you think she's going to start predicting natural disasters now?!"
I'll tell you the next time she mentions them.
And then we had an earthquake here on the East Coast, centered in Maine, the very next evening. At 7:15 to be precise, while we were reading our bedtime story, Mouse in the Motorcycle. But we didn't feel a thing. I only heard about it later on FB, though it noted that they did feel it in other parts of CT.
After we tucked in the kids, and learned of the earthquake, Mama said, "Do you think she's going to start predicting natural disasters now?!"
I'll tell you the next time she mentions them.
Wednesday, October 17, 2012
Budfoolery
Bud came home with a "I Voted!" sticker today and so I asked him about the Junior Achievement program he had attended. He said they'd voted for president. And Obama won! 17-4. He was so happy.
And in my mind, I was composing this post, proudly. And was titling it, "I believe the children are our future." Vainly.
"Just kidding, Mom. We voted on animals."
And in my mind, I was composing this post, proudly. And was titling it, "I believe the children are our future." Vainly.
"Just kidding, Mom. We voted on animals."
Trap-her Keep-her
"Binders full of women."
Oh, it really is too rich to pass up. But my sarcasm might not be up to the task. Check out Binders Full of Women on FB and other places for all the fun.
Tuesday, October 16, 2012
Last-Minute Activities
With Mama's last days of disability finally winding down, we're completing her to-do list. We've had lunch and/or coffee with a few friends. We've run errands for clothes and a new bookcase. We've eaten out at a few places we rarely get to go, like delicious Ethiopian. And today we're heading to have lunch at school with the kiddos. Whew.
Of course, we're also gearing up for 3 Halloween parties plus actual trick-or-treating, the start of my touring seasoning with the historic house (I'm giving 9 tours in 2 1/2 weeks or so!), a couple of birthday parties, and all the usual things like kung fu, gymnastics, and Brownies.
Plus the big bake sale!
And it's all good.
Of course, we're also gearing up for 3 Halloween parties plus actual trick-or-treating, the start of my touring seasoning with the historic house (I'm giving 9 tours in 2 1/2 weeks or so!), a couple of birthday parties, and all the usual things like kung fu, gymnastics, and Brownies.
Plus the big bake sale!
And it's all good.
Soup Weather
Except the two warm-for-October days, we've had a lot of overcast and chilly weather this fall. Which always reminds me of soup.
And so I made this incredible soup that Mama and I devoured (of course, with the beans, the kids didn't.)
If I could figure out how do a jar mix of it, I'd give it away as Christmas gifts (I should note that the original inspiration comes from a packaged mix of Peddler's Vegetarian Soup.)
-=-=-=-=-=-=
My Version of Peddler's Vegetarian Soup
1 1/2 cups dried beans (combination of Navy, Great Northern, pink, pinto, red kidney, or whatever you have on hand), rinsed and sorted
1 onion, chopped
olive oil
2 carrots, chopped
2 celery stalks, chopped
1/2 cabbage, shredded
1 bay leaf
1/4-1/2 cup marinara (we had a bit of Rao's leftover)
1 teaspoon garlic powder
1 teaspoon Italian seasoning (I use Penzey's Tuscan Sunset)
1/4 cup Parmesan cheese
1 tablespoon lemon juice
Soak beans overnight in salted water. In the morning, drain.
Saute onion, carrots, celery, and cabbage in olive oil until tender. Add 8 cups of water, soaked beans, and bay leaf to sauteed vegetables. Simmer until beans are soft (about 2 hours). Add marinara and Italian seasoning. Simmer for 30 minutes. Add cheese and lemon juice before serving.
Mommy Hungry via Savory Fare (website on package isn't working; their version uses 28 oz of tomatoes and small pasta plus a variety of seasonings)
And so I made this incredible soup that Mama and I devoured (of course, with the beans, the kids didn't.)
If I could figure out how do a jar mix of it, I'd give it away as Christmas gifts (I should note that the original inspiration comes from a packaged mix of Peddler's Vegetarian Soup.)
-=-=-=-=-=-=
My Version of Peddler's Vegetarian Soup
1 1/2 cups dried beans (combination of Navy, Great Northern, pink, pinto, red kidney, or whatever you have on hand), rinsed and sorted
1 onion, chopped
olive oil
2 carrots, chopped
2 celery stalks, chopped
1/2 cabbage, shredded
1 bay leaf
1/4-1/2 cup marinara (we had a bit of Rao's leftover)
1 teaspoon garlic powder
1 teaspoon Italian seasoning (I use Penzey's Tuscan Sunset)
1/4 cup Parmesan cheese
1 tablespoon lemon juice
Soak beans overnight in salted water. In the morning, drain.
Saute onion, carrots, celery, and cabbage in olive oil until tender. Add 8 cups of water, soaked beans, and bay leaf to sauteed vegetables. Simmer until beans are soft (about 2 hours). Add marinara and Italian seasoning. Simmer for 30 minutes. Add cheese and lemon juice before serving.
Mommy Hungry via Savory Fare (website on package isn't working; their version uses 28 oz of tomatoes and small pasta plus a variety of seasonings)
Bake-Sale-To-Be
We're having a bake sale in a couple of weeks to benefit Sis and Bud's classmate who has cancer. It started off as Sis's simple idea for a small, on-the-corner kinda thing but has blossomed into more bakers and an as-yet-to-be-determined location (either the local soccer fields or grocery store, so that we have foot traffic and don't use our home address). I'm excited but also nervous, having never organized a big sale like this (so of course I looked online for tips about location, pricing, etc). But I'm getting wonderful volunteer bakers and people to assist with the sale, so there is help. And it's a great cause. Sis is excited (not bothered by the changes).
And we can always do it again in the spring if it's successful, learning from our first experience!
So we're baking almost everyday to stockpile for the event, starting with Snickerdoodles and then Chocolate Snickerdoodles! Mmmmm. I actually thought of chocolate ones while making the first batch, but of course many others had come up with the idea before me. So, we have about 150 squirreled away. Next we'll do oatmeal raisin (the classmate's favorite) and some chocolate chip cookies. And who knows what else from there.
I'll keep you posted. And if you're local, I'll let you know when it is.
-=-=-=-=-=-=-
Chocolate Snickerdoodles, my version
**Same recipe as above, but instead of 2 3/4 cups flour, use 2 1/4 cups flour and 1/2 cup cocoa.
And we can always do it again in the spring if it's successful, learning from our first experience!
So we're baking almost everyday to stockpile for the event, starting with Snickerdoodles and then Chocolate Snickerdoodles! Mmmmm. I actually thought of chocolate ones while making the first batch, but of course many others had come up with the idea before me. So, we have about 150 squirreled away. Next we'll do oatmeal raisin (the classmate's favorite) and some chocolate chip cookies. And who knows what else from there.
I'll keep you posted. And if you're local, I'll let you know when it is.
-=-=-=-=-=-=-
Snickerdoodles (with cinnamon on outside of cookie)
yields 6-7 dozen
1/2 cup butter
1/2 cup shortening (or coconut oil)
1 1/2 cups sugar
2 large eggs
1 teaspoon vanilla
2 teaspoons baking powder
1/2 teaspoon salt
2 3/4 cups King Arthur Unbleached All-Purpose Flour
cinnamon-sugar: 1/2 cup sugar and 2 teaspoons cinnamon
In a medium-sized mixing bowl, beat together the shortening and sugar till smooth, then beat in the eggs, again beating till smooth.
Beat in the vanilla, baking powder, then add the flour, mixing slowly till combined.
Place about 1/2 cup cinnamon-sugar in an 8" or 9" round cake pan or in a zippered bag.
Drop the soft dough by teaspoonfuls into the pan with the sugar, about 6 to 8 balls at a time. Gently shake the pan to coat the dough balls with sugar. Place them on a lightly greased or parchment-lined cookie sheet, leaving about 1 1/2 inches between them. Using the bottom of a glass, flatten each cookie till it's about 1/2-inch thick. Repeat till you've used up all the dough.
Bake the snickerdoodles in a preheated 400°F oven for 8-11 minutes. They'll be set and just starting to turn golden. Remove the cookies from the oven, and cool them on a rack.
adapted from King Arthur Flour Cookie Companion
yields 6-7 dozen
1/2 cup butter
1/2 cup shortening (or coconut oil)
1 1/2 cups sugar
2 large eggs
1 teaspoon vanilla
2 teaspoons baking powder
1/2 teaspoon salt
2 3/4 cups King Arthur Unbleached All-Purpose Flour
cinnamon-sugar: 1/2 cup sugar and 2 teaspoons cinnamon
In a medium-sized mixing bowl, beat together the shortening and sugar till smooth, then beat in the eggs, again beating till smooth.
Beat in the vanilla, baking powder, then add the flour, mixing slowly till combined.
Place about 1/2 cup cinnamon-sugar in an 8" or 9" round cake pan or in a zippered bag.
Drop the soft dough by teaspoonfuls into the pan with the sugar, about 6 to 8 balls at a time. Gently shake the pan to coat the dough balls with sugar. Place them on a lightly greased or parchment-lined cookie sheet, leaving about 1 1/2 inches between them. Using the bottom of a glass, flatten each cookie till it's about 1/2-inch thick. Repeat till you've used up all the dough.
Bake the snickerdoodles in a preheated 400°F oven for 8-11 minutes. They'll be set and just starting to turn golden. Remove the cookies from the oven, and cool them on a rack.
adapted from King Arthur Flour Cookie Companion
**Same recipe as above, but instead of 2 3/4 cups flour, use 2 1/4 cups flour and 1/2 cup cocoa.
Alternate: Snickerdoodles (with cinnamon in the cookie)
Makes 4 dozen
1 ½ cups sugar
½ cup butter
½ cup shortening
2 eggs
2 ¾ cups flour
2 teaspoons cream of tartar
1 teaspoon baking soda
1 teaspoon cinnamon
¼ teaspoon salt
assorted colored sugars optional (or use cinnamon-sugar mixture)
Heat oven to 400°F. Mix 1 ½ cups
sugar, butter, shortening, and eggs. Stir in flour, cram of tartar, baking
soda, cinnamon and salt.
Shape dough into 1 ¼” balls. Dip
one side of ball in colored sugar (note: if you roll the whole ball in sugar,
the sugar on the bottom will burn and stick to the pan). Place 2 inches apart
on an ungreased cookie sheet. Bake 8 to 10 minutes or until set. Remove from
cookie sheet to wire rack.
Gold Medal’s Cookies from the Heart or Extra Special Holiday Baking
Friday, October 12, 2012
A Funny Thing Happened . . .
. . . at the doctor's office today (no worries, just my annual gyn.)
I was a new patient and therefore being asked all these questions.
Level of education? Ph.D.
Working or homemaker? Homemaker
I whispered to Mama that I should just call myself "Dr. Homemaker!" Really, I can't believe that term is still in use officially.
(At least I'm no longer a "spinster" because I'm legally married in CT.)
Besides, I think of myself as more of a professional volunteer, between Girl Scouts, the historical house, and now hospice.
Think "professional volunteer" is a category on LinkedIn?!
I was a new patient and therefore being asked all these questions.
Level of education? Ph.D.
Working or homemaker? Homemaker
I whispered to Mama that I should just call myself "Dr. Homemaker!" Really, I can't believe that term is still in use officially.
(At least I'm no longer a "spinster" because I'm legally married in CT.)
Besides, I think of myself as more of a professional volunteer, between Girl Scouts, the historical house, and now hospice.
Think "professional volunteer" is a category on LinkedIn?!
TGIF
Thank
Goodness
It'll
Freeze!
Yep, tonight we might get our first freeze. I love this weather and have pulled all our quilts and fleece blankets out of the closet. I even have a new tea--Trader Joe's Pumpkin Spice Rooiboos. Yum! Sis and Bud asked if it would snow. Well, last year it snowed just two weeks from now (see pics here), but I'll be really surprised if it does that again, especially as it's supposed to get back up to almost 70 in the next few days!
(Is that light enough compared to yesterday?)
Goodness
It'll
Freeze!
Yep, tonight we might get our first freeze. I love this weather and have pulled all our quilts and fleece blankets out of the closet. I even have a new tea--Trader Joe's Pumpkin Spice Rooiboos. Yum! Sis and Bud asked if it would snow. Well, last year it snowed just two weeks from now (see pics here), but I'll be really surprised if it does that again, especially as it's supposed to get back up to almost 70 in the next few days!
(Is that light enough compared to yesterday?)
Thursday, October 11, 2012
Whew.
Wow, posts addressing sex, religion, health, and even death all in one day--the linchpins of interesting, but not polite, conversation!
I promise to have something a little lighter tomorrow.
I promise to have something a little lighter tomorrow.
Sickbed Confessions
Inspired by How to Be Sick author Toni Bernhard's post, "Confessions of a Sick Person," I'm making a list of my own injury/chronic pain-related confessions. Many of these were more relevant at the height (or depths?) of my injury, not as much now.
- It doesn't always hurt. Yep, a lot of the time it does. And that stinks. But sometimes it doesn't hurt. And the pain isn't always the deciding factor in whether I'm up and about or not. Meditation, medication, motivation, mood all play a part.
- I like my bed better than almost anywhere. It's a comfortable, handy place to be. I've managed systems for working on the computer, eating, reading, watching tv, crocheting, almost anything you can think of. And when the physical stresses of the day get to me, nothing is as calming and reassuring as being back in my bed. Which is ironic, given that one of my major pain episodes occurred in the bed, waking me up in the middle of the night unexpectedly!
- I'm grateful for my injury in many ways because it has allowed me to explore new personal and spiritual paths that I don't think I would have found if I were still distracted by "normal" life. I think it was a wake-up call, even a blessing. As much as it has been a burden to me and my entire family, I'm not exactly sure I would go back and do it differently (well, I might actually take pain medication that second time!). I think it has taught us all something. Compassion, mindfulness, mortality, priorities, gratitude, appreciation, flexibility.
- I like not working for pay outside the home. For now. And injury/pain is a more socially-acceptable reason than stay-at-home mom. No one argues with me about my unemployment or rolls their eyes anymore. That I know of.
- I don't like how narcissistic I am sometimes, always thinking of how I'm doing, how I'm feeling, how I can or can't do things. It's so easy to become self-absorbed in isolation. Kids are a really good remedy for this.
- Having an injury can be a great excuse for many things--baggy, comfortable clothes and a perpetually messy house and not living up to social/societal expectations. I like that.
- I haven't had a professional haircut or been to the dentist in two years. Both have very uncomfortable chairs that you have to sit in for the whole thing. Can't do it. Even though I know I should. (To make up for the dentist, I've become meticulous about flossing and mouthwash.)
- While I'm not glad for her own recent injury and illnesses, it has been nice to have Mama as a sickbed buddy at times. Even though it was true before, I know she understand me better than anyone else could because she's been there. On the reverse side, it's made me a better caregiver (sometimes!). On the downside, she takes up half the bed AND wants a say in the tv shows! But there's only a week left.
The Sinner and the Sin, Or National Coming Out Day
I don't often post about being a lesbian. It's no secret, of course, and I'm not ashamed or uncomfortable. It just doesn't come up as a subject in ways that make interesting posts, at least compared with life with twins or the craziness that was our summer. I can only tell you for the umpteenth time that Mama was mistaken for my son--happened at the Ren Faire on Monday when a booth staffer tried to get my young fella to try his hand at a tomato-throwing game--or that I had to correct someone about the kids having two moms and not a dad--happened recently when a cashier remarked that the kids should tell their dad.
And I can only rage about the homophobia of the Boy Scouts so many times. (Though, I could tell you about the young man who realized he was gay and came out, only to be denied his earned Eagle Scout award! Or about the Greenwich, CT den mom who was kicked out when news got out of her den that she was a lesbian! It's a discriminatory organization--if you support it, you support and encourage its discrimination against me. Period. Don't tell me it's convenient or a tradition or your den isn't like that. Because that doesn't change that the Boy Scouts have fought all the way to the Supreme Court to be able to discriminate against me.)
But I've recently been confronted with a new kind of challenge: love the sinner, not the sin.
Yep, I have a Mormon friend.
I don't want to go into it too much, as we have a delicate friendship built on mutual interests and tolerance, but will say that my friend absolutely believes and agrees with her church's stance against same-sex relationships and also practices the LDS stance of tolerating--but not condoning, accepting, or approving--LGBTQ people--you know, that whole love the sinner, not the sin teaching. I guess I do something of the same--tolerate her faith while recognizing her own inherent worth and dignity (UU principle #1)--just like I love my friends even though their sons are Scouts. I should say that, while I knew she was a Latter Day Saint, until recently I figured she might be like my Catholic friends who are fairly "cafeteria" in their selection of the Vatican's (happy 50th anniversary, Vatican II, by the way!) teachings, supporting women priests, married priests, same-sex marriage, birth control, and abortion while still taking communion and sending their kids to CCD. Or like the liberal Mormon feminist Joanna Brooks, author of the Book of Mormon Girl, which I am reading for insight into the faith and its followers and those who have trouble following some of it (see her blog here.)
It all reminds me of the recent NYTimes Op-Ed, "We're Here, We're Queer, Y'all!, which made me mad, or sad, or a combo of the two. Essentially, the author, Karen L. Cox, said that being LGBTQ in the rural South was okay . . . because they don't beat you or burn your house down.
They only call adults by silly terms like "Uncle Poodle" to denote their "light in the loafer"-ness.
And refuse to openly or publicly acknowledge your relationships by calling your long-time partner just your "friend."
And disagree vehemently with the concept of same-sex marriage.
And think your homosexuality is an abomination.
I'm pretty sure I could not live somewhere (read Texas) that the majority of people felt like that about me. It's challenging enough to have one person in my life that I know feels like that (my in-laws are a complicated, different story), though I can't articulate why or why I do it. And I think I feel guilty, hypocritical, surprised, upset, incredulous. It's very personal. Which, as we all know, is very political.
Maybe, beyond the ordinary pleasures of friendship, I had hoped that I could facilitate some kind of teachable moment.
Is that how LGBTQ people in the South feel, how they get through it? There just aren't many easy answers.
Sometimes, coming out is the easy part.
And I can only rage about the homophobia of the Boy Scouts so many times. (Though, I could tell you about the young man who realized he was gay and came out, only to be denied his earned Eagle Scout award! Or about the Greenwich, CT den mom who was kicked out when news got out of her den that she was a lesbian! It's a discriminatory organization--if you support it, you support and encourage its discrimination against me. Period. Don't tell me it's convenient or a tradition or your den isn't like that. Because that doesn't change that the Boy Scouts have fought all the way to the Supreme Court to be able to discriminate against me.)
But I've recently been confronted with a new kind of challenge: love the sinner, not the sin.
Yep, I have a Mormon friend.
I don't want to go into it too much, as we have a delicate friendship built on mutual interests and tolerance, but will say that my friend absolutely believes and agrees with her church's stance against same-sex relationships and also practices the LDS stance of tolerating--but not condoning, accepting, or approving--LGBTQ people--you know, that whole love the sinner, not the sin teaching. I guess I do something of the same--tolerate her faith while recognizing her own inherent worth and dignity (UU principle #1)--just like I love my friends even though their sons are Scouts. I should say that, while I knew she was a Latter Day Saint, until recently I figured she might be like my Catholic friends who are fairly "cafeteria" in their selection of the Vatican's (happy 50th anniversary, Vatican II, by the way!) teachings, supporting women priests, married priests, same-sex marriage, birth control, and abortion while still taking communion and sending their kids to CCD. Or like the liberal Mormon feminist Joanna Brooks, author of the Book of Mormon Girl, which I am reading for insight into the faith and its followers and those who have trouble following some of it (see her blog here.)
It all reminds me of the recent NYTimes Op-Ed, "We're Here, We're Queer, Y'all!, which made me mad, or sad, or a combo of the two. Essentially, the author, Karen L. Cox, said that being LGBTQ in the rural South was okay . . . because they don't beat you or burn your house down.
They only call adults by silly terms like "Uncle Poodle" to denote their "light in the loafer"-ness.
And refuse to openly or publicly acknowledge your relationships by calling your long-time partner just your "friend."
And disagree vehemently with the concept of same-sex marriage.
And think your homosexuality is an abomination.
I'm pretty sure I could not live somewhere (read Texas) that the majority of people felt like that about me. It's challenging enough to have one person in my life that I know feels like that (my in-laws are a complicated, different story), though I can't articulate why or why I do it. And I think I feel guilty, hypocritical, surprised, upset, incredulous. It's very personal. Which, as we all know, is very political.
Maybe, beyond the ordinary pleasures of friendship, I had hoped that I could facilitate some kind of teachable moment.
Is that how LGBTQ people in the South feel, how they get through it? There just aren't many easy answers.
Sometimes, coming out is the easy part.
A Wing and a Prayer
You know how they say kids will ask the difficult questions in the car?
Sis got me today, "What does my classmate have?"
Her classmate who is in the hospital receiving chemotherapy for cancer.
Thankfully, I had spent some of last night searching for books and discussion tips, Googling "books for children, classmate has cancer." Many of the resources are actually for children with cancer, or children whose parents or siblings have cancer. But I did come across some things*, which was good because Sis, and then Bud after her, hit upon them all. I tried to answer them directly and then add to it.
"What did he do to get this?" Nothing. He did absolutely nothing. His cells just changed.
And you can't catch it. Not like the flu or a cold or the chicken pox.
"Will he lose his hair?" Maybe. Chemotherapy can make you feel awful and some people lose their hair.
But even if he loses his hair, he'll still be the same kid who loves the things he always has. And so you can treat him just like you used to. Even if his looks surprise you at first.
"Will he come back to school?" Probably. If he feels well enough. He might be in and out of school for awhile.
He'd rather be at school than in the hospital, I'm sure. It can be scary with all the doctors and needles and such. But they are all doing their best to take good care of him so he can come back to school. We are all sorry he has to go through this because we know it's going to be rough for him and his family for awhile.
"Will he die?"
Words fail me.
I don't know. I hope not. They're doing everything they can. I can't quite say anything more. What else is there to say?
But you can ask me anything, anything else and I'll try to answer it. And if you feel helpless (we all feel helpless), you can meditate and pray.
Sis immediately proposes a bake sale--snickerdoodles and oatmeal raisin--to raise money for his treatment. Later over dinner, Bud excuses himself to go ring our singing meditation bowls and to pray.
And I somehow managed not to cry.
Yet.
-=-=-=-=-=-=-
*A few helpful websites:
Sis got me today, "What does my classmate have?"
Her classmate who is in the hospital receiving chemotherapy for cancer.
Thankfully, I had spent some of last night searching for books and discussion tips, Googling "books for children, classmate has cancer." Many of the resources are actually for children with cancer, or children whose parents or siblings have cancer. But I did come across some things*, which was good because Sis, and then Bud after her, hit upon them all. I tried to answer them directly and then add to it.
"What did he do to get this?" Nothing. He did absolutely nothing. His cells just changed.
And you can't catch it. Not like the flu or a cold or the chicken pox.
"Will he lose his hair?" Maybe. Chemotherapy can make you feel awful and some people lose their hair.
But even if he loses his hair, he'll still be the same kid who loves the things he always has. And so you can treat him just like you used to. Even if his looks surprise you at first.
"Will he come back to school?" Probably. If he feels well enough. He might be in and out of school for awhile.
He'd rather be at school than in the hospital, I'm sure. It can be scary with all the doctors and needles and such. But they are all doing their best to take good care of him so he can come back to school. We are all sorry he has to go through this because we know it's going to be rough for him and his family for awhile.
"Will he die?"
Words fail me.
I don't know. I hope not. They're doing everything they can. I can't quite say anything more. What else is there to say?
But you can ask me anything, anything else and I'll try to answer it. And if you feel helpless (we all feel helpless), you can meditate and pray.
Sis immediately proposes a bake sale--snickerdoodles and oatmeal raisin--to raise money for his treatment. Later over dinner, Bud excuses himself to go ring our singing meditation bowls and to pray.
And I somehow managed not to cry.
Yet.
-=-=-=-=-=-=-
*A few helpful websites:
- A teacher's overview on her experience with a child in her kindergarten class with cancer.
- A guide from a hospital in PA regarding children with cancer in the classroom
- Another guide on children with cancer returning to school
- A website on kids' health addresses kids with cancer
I also purchased some books, including Why, Charlie Brown, Why? A Story About What Happens When a Friend is Very Ill; What is Cancer Anyway? Explaining Cancer to Children of All Ages; and Imagine a Rainbow: A Child's Guide for Soothing Pain. For an elementary-school-aged bibliography, see Alex's Lemonade Stand and this document (can't get a link that doesn't automatically download; my apologies.)
I dearly hope we won't need Freddie the Leaf, The Purple Balloon, or Badger's Parting Gifts, on death and dying for children.
I dearly hope we won't need Freddie the Leaf, The Purple Balloon, or Badger's Parting Gifts, on death and dying for children.
Wednesday, October 10, 2012
Healing Across the Ocean
Sending best wishes to Mrs. Lambeth for a speedy and easy recovery from surgery and good results!
Sending Love and Hope
A classmate of Sis and Bud's has cancer and is in treatment. We send our love and hope for successful treatment.
Monday, October 8, 2012
Ren Faires R Us
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| Bud defeating the Swordmaster |
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| Beautiful Barred Owl |
 |
| Sis climbing Jacob's Ladder |
 |
| Bud learning about weapons from a German mercenary |
 |
| Sis flinging a frog |
 |
| Bud with a bow |
Sunday, October 7, 2012
A Magical Day
On Saturday, we cavorted among the faerie houses (again) at the Florence Griswold Museum. If you're in Connecticut this month, definitely go visit!
We all liked the first house, a Japanese tea house. Bud even sketched it. Can you find the blue teapot? Each house stop on the map had a seek-and-find question. We found most of the items, going back again to the houses where we couldn't find the treasure immediately.
Another one that piqued our curiosity as this one, complete with burnished emblems on the stumps. Can you find the reindeer?
I really liked the faerie houses that blended in with the trees or rocks or grasses. This Autumnal Fortress is spread out through lots of nooks and crannies.
This house was nestled next to the tree, with numerous ladders and doors all around. I think the doors and ladders were my favorite detail of all the faerie houses.
 |
This was one of the kids' favorite houses, the Dew Drop.
And just several random details I liked from other houses.
We walked through the grounds by the Lieutenant River at least twice, admiring all 30+ houses and finding five of the "fringe faeries," or faery houses not on the original map, which were hidden in plain sight.
One of the last houses was the Pearl Palace, nestled next to a stream, which was lined with houses in the bank, another of my favorite houses.
After a wonderful lunch on the veranda of the museum (wild mushroom bisque, butternut squash and apple soup, spinach salad, mushroom ravioli, chicken pot pie, apple crisp, and a trio of ice creams--peach cobbler with gingersnap, hazelnut with milk chocolate and seville orange with basil, so yummy), the kiddos built their own faerie houses "beyond the beyond."
 |
| Bud's teepee-shaped house with a thatched pine needle roof. |
 |
| Sis's lean-to with a pine roof and a table laid with "bread with honey" (a rock with sap) and other delicacies. |
We ended the day with a visit with Tracy Kane, the author of several books on faerie houses. She signed her new photographic compendium, Fairy Houses--Unbelievable!, and her new mystery novel, Forest Secrets, for us.
We headed home through the pouring rain and dried off at home while watching Fairytale, about the girls who took the Cottingley fairy pictures in 1917.
Then today, after the yard dried out, Sis and Bud built 10 houses in a village in our yard, providing a map for us and a personally-guided tour, during which we were asked to spot the hidden treasures. Just like at the museum. That is why we go on these outings: not just for the initial information and enjoyment, but for the inspiration and imagination that follow for days and weeks to come. May the magic of the faeries be with us for a long time.
Friday, October 5, 2012
Childhood Memories
Lemon twist.
Sit 'N Spin.
Moppet's Secret Dollhouse.
Fisher Price Little People Castle, A-frame House, Town.
CandyLand, with the original board game.
Speak & Spell.
Simon Says game.
Waterful Ring Toss.
Great Greetings and Fashion Plates.
I've come across several toys and games from my childhood through Pinterest and the pinned blogs and websites (here, here, here, here, and here). It's been such a fun ride!
Red Rover.
Thumbs-Up, 7Up!
Folded notes.
Metal dome playground equipment.
Silly String.
Fortune Tellers.
Super Plastic Bubbles.
Weeble Wobbles.
Rub-a-Dub Dolly.
It's been such a wonderful trip down memory lane, but I couldn't find one thing: a blue and pink plastic ice cream sundae toy that contained a miniature dollhouse. I also had a miniature brown ice cream sandwich, also with a dollhouse inside. But I couldn't remember the name and couldn't find them online. I kept looking, finding many other things.
Tinkerbell makeup.
Jellies shoes.
Twisty bead necklaces.
Woven barrettes.
Banana clips.
Prairie shirts.
Yarn hair ribbons.
And so I told Mama, who had heard me talk of these toys before. And so she started looking.
Plastic Halloween costumes with masks that came in paper boxes.
"Popcorn" Rudolph decorations.
Plastic-net Christmas stockings.
Woodsy the Owl.
Smokey the Bear.
I didn't have much hope. I should have, though, because years ago she found one of my favorite childhood book series, the Meg Mysteries, and even bought me a few; this in the days before Amazon and such. She's just more creative and thorough with her Boolean logic, I guess. But I was still surprised this morning when she reached over and showed me this:
She found them!!!! Mattel Liddle Kiddle, also marketed in the 1970s as Sweet Treats. I had forgotten the rainbow-colored hair of the dolls. We don't need to buy them, even though mine are long gone. It was just nice to see them again and remember all the fun I had with these toys and all the others.
Sit 'N Spin.
Moppet's Secret Dollhouse.
Fisher Price Little People Castle, A-frame House, Town.
CandyLand, with the original board game.
Speak & Spell.
Simon Says game.
Waterful Ring Toss.
Great Greetings and Fashion Plates.
I've come across several toys and games from my childhood through Pinterest and the pinned blogs and websites (here, here, here, here, and here). It's been such a fun ride!
Red Rover.
Thumbs-Up, 7Up!
Folded notes.
Metal dome playground equipment.
Silly String.
Fortune Tellers.
Super Plastic Bubbles.
Weeble Wobbles.
Rub-a-Dub Dolly.
It's been such a wonderful trip down memory lane, but I couldn't find one thing: a blue and pink plastic ice cream sundae toy that contained a miniature dollhouse. I also had a miniature brown ice cream sandwich, also with a dollhouse inside. But I couldn't remember the name and couldn't find them online. I kept looking, finding many other things.
Tinkerbell makeup.
Jellies shoes.
Twisty bead necklaces.
Woven barrettes.
Banana clips.
Prairie shirts.
Yarn hair ribbons.
And so I told Mama, who had heard me talk of these toys before. And so she started looking.
Plastic Halloween costumes with masks that came in paper boxes.
"Popcorn" Rudolph decorations.
Plastic-net Christmas stockings.
Woodsy the Owl.
Smokey the Bear.
I didn't have much hope. I should have, though, because years ago she found one of my favorite childhood book series, the Meg Mysteries, and even bought me a few; this in the days before Amazon and such. She's just more creative and thorough with her Boolean logic, I guess. But I was still surprised this morning when she reached over and showed me this:
She found them!!!! Mattel Liddle Kiddle, also marketed in the 1970s as Sweet Treats. I had forgotten the rainbow-colored hair of the dolls. We don't need to buy them, even though mine are long gone. It was just nice to see them again and remember all the fun I had with these toys and all the others.
My Treasure Chest
The tag at the sale said 18th-century chest, which the antique dealer explained, was because of the dovetail joints and hardware. Well, I can't swear that's true, not knowing much about antiques, but I liked the way it tapers to the top and the way the wood smells old. I know, not very scientific or academic, but I liked it. And so we bought it, 18th-century relic or not.
My Inner Merida*
(*Not my inner Katniss!)
Kidbits
Sis was describing one of her schoolbooks to me, "It's set in the petticoat past!"
-=-=-=-=-=-
They're practicing yells in Bud's kung fu class. Now, out of nowhere, he'll yell. And it's this loud, booming yell. I wouldn't want to hear that in a dark alley.
-=-=-=-=-
Today is picture day at school so Mama and Sis went to the store for clothes because she's outgrown all of her dresses. She chose a red plaid jumper with a headband! But she headed to school with her usual mismatching socks--this time, one sock short and one sock long. When I asked if it were a conscious choice, she said, "It's my style!"
-=-=-=-=-=-
On the way home from kung fu this week, Bud asked why the Toys R Us people write their "R" backwards. He and Mama had a long conversation about brands, as she pointed out the golden "M" and the DD. He was not impressed.
-=-=-=-=-=-=-
Before we remembered that today was picture day, we toyed with taking the kids out of school to go to the Fairy House exhibition at the Florence Griswold Museum, since we loved it last time. The kids protested that they didn't want to miss the "Polly story." Apparently, their new art teacher has a parrot--an African grey--about whom she tells a new funny story weekly.
-=-=-=-=-=-
My use of idiomatic language and aphorisms has been confusing the kids of late. "Each to the devil in her own way," I said of my preference for sweets and mama's for savories. The kid's could not figure out what the devil had to do with it, being rather unclear on who he is anyway. And when I asked them to name their poison, Bud said he didn't want any poison, "Who wants poison, Mom?"
-=-=-=-=-=-
They're practicing yells in Bud's kung fu class. Now, out of nowhere, he'll yell. And it's this loud, booming yell. I wouldn't want to hear that in a dark alley.
-=-=-=-=-
Today is picture day at school so Mama and Sis went to the store for clothes because she's outgrown all of her dresses. She chose a red plaid jumper with a headband! But she headed to school with her usual mismatching socks--this time, one sock short and one sock long. When I asked if it were a conscious choice, she said, "It's my style!"
-=-=-=-=-=-
On the way home from kung fu this week, Bud asked why the Toys R Us people write their "R" backwards. He and Mama had a long conversation about brands, as she pointed out the golden "M" and the DD. He was not impressed.
-=-=-=-=-=-=-
Before we remembered that today was picture day, we toyed with taking the kids out of school to go to the Fairy House exhibition at the Florence Griswold Museum, since we loved it last time. The kids protested that they didn't want to miss the "Polly story." Apparently, their new art teacher has a parrot--an African grey--about whom she tells a new funny story weekly.
-=-=-=-=-=-
My use of idiomatic language and aphorisms has been confusing the kids of late. "Each to the devil in her own way," I said of my preference for sweets and mama's for savories. The kid's could not figure out what the devil had to do with it, being rather unclear on who he is anyway. And when I asked them to name their poison, Bud said he didn't want any poison, "Who wants poison, Mom?"
Wednesday, October 3, 2012
Happy Anniversary!
Today marks my parents' 48th anniversary. Happy anniversary, Gommie and Pop! May the years to come be even better than those behind.
Tuesday, October 2, 2012
The Four Things
Please forgive me.
I forgive you.
Thank you.
I love you.
Dr. Ira Byock, in his The Four Things that Matter Most, posits that these four simple phrases, when addressed to your loved ones, will often transform your relationships for the better. Byock has worked in palliative and hospice care throughout his career and has extrapolated the Four Things from those experiences, particularly the radical changes wrought when they're used by families facing death. I read the book for my hospice work, as most of the examples are deathbed conversations. But I can absolutely see how I could use them now, though I'm not currently at death's door. As he says, why wait, because you never know . . . . (and I think, right now, one of my bigger fears is dying unexpectedly, like in a car accident.)
I can see that the forgiveness bits would be the hardest, particularly as "please forgive me" verges on "I'm sorry," without, specifically, the actual apology (though you can do that, too, if you mean it). As in, "Please forgive me for being gay" is not the same as "I'm sorry for being gay." (This is the most obvious example . . . and not one that actually really speaks to me personally.) Forgiveness, as Byock repeatedly asserts, is not acceptance or a condoning of the past action, but a way to leave the past in the past while acknowledging the pain once and for all. You can still be angry, hurt, offended, whatever, but you are saying this no longer has hold over me. Or, I know this caused you pain, hurt, offense and I'm sorry you suffered (even if you're not sorry about the action). I realized, though, that saying something like, "I forgive you for being a terrible ______" might be more hurtful than helpful. I guess you'd have to watch how you phrased it. You've seen them here on this blog before. Forgiveness seems more personal because it addresses pain. Regrets, mistakes, affronts, poor decisions, inadvertent injury. I think I'm better at "thank you" and "I love you." Byock also indicates that forgiving ourselves is also extremely powerful--forgive yourself for not being perfect, for being human and flawed.
It's an easier system to remember and to try to follow than, say, the formal statements of non-violent communication. Byock even acknowledges that working through them on your own can help, if there is not an opportunity or a positive reception to saying it to someone. It's not a magic spell, even if he recounts the wonders it has worked. And really, what relationship can't be buoyed at anytime by these Four Things?
So don't be surprised if you hear some of these phrases come out of my mouth more often.
I forgive you.
Thank you.
I love you.
Dr. Ira Byock, in his The Four Things that Matter Most, posits that these four simple phrases, when addressed to your loved ones, will often transform your relationships for the better. Byock has worked in palliative and hospice care throughout his career and has extrapolated the Four Things from those experiences, particularly the radical changes wrought when they're used by families facing death. I read the book for my hospice work, as most of the examples are deathbed conversations. But I can absolutely see how I could use them now, though I'm not currently at death's door. As he says, why wait, because you never know . . . . (and I think, right now, one of my bigger fears is dying unexpectedly, like in a car accident.)
I can see that the forgiveness bits would be the hardest, particularly as "please forgive me" verges on "I'm sorry," without, specifically, the actual apology (though you can do that, too, if you mean it). As in, "Please forgive me for being gay" is not the same as "I'm sorry for being gay." (This is the most obvious example . . . and not one that actually really speaks to me personally.) Forgiveness, as Byock repeatedly asserts, is not acceptance or a condoning of the past action, but a way to leave the past in the past while acknowledging the pain once and for all. You can still be angry, hurt, offended, whatever, but you are saying this no longer has hold over me. Or, I know this caused you pain, hurt, offense and I'm sorry you suffered (even if you're not sorry about the action). I realized, though, that saying something like, "I forgive you for being a terrible ______" might be more hurtful than helpful. I guess you'd have to watch how you phrased it. You've seen them here on this blog before. Forgiveness seems more personal because it addresses pain. Regrets, mistakes, affronts, poor decisions, inadvertent injury. I think I'm better at "thank you" and "I love you." Byock also indicates that forgiving ourselves is also extremely powerful--forgive yourself for not being perfect, for being human and flawed.
It's an easier system to remember and to try to follow than, say, the formal statements of non-violent communication. Byock even acknowledges that working through them on your own can help, if there is not an opportunity or a positive reception to saying it to someone. It's not a magic spell, even if he recounts the wonders it has worked. And really, what relationship can't be buoyed at anytime by these Four Things?
So don't be surprised if you hear some of these phrases come out of my mouth more often.
Monday, October 1, 2012
Today!
Today starts another Whole Food Kitchen experience, with Heather Bruggeman. I've taken this before, as well as her 30-Day Vegan (twice), and enjoy the recipes, information, and community spirit of the other participants. So why do it again? I didn't get to focus on the last WFK as much as I had hoped because of Mama's back injury and such. Now, after our rough summer, Mama and I are looking forward to continuing our focus on the simple things. We've had a lot of couple and family time and now we are turning our renewed attention on simple, healthy, whole foods. And you know how I love recipes! Unfortunately, I can't share any of them here, but I will tell you about the experience as it progresses. It's another part of my fall start.
My Own Hospice 101
I've been attending hospice training these last few weeks, finishing up this morning, and absorbed wonderful information and inspiration. Without going into too much detail about HIPAA law and OSHA protections, I wanted to pass along what has interested and touched me the most.
Death and Dying
We spent a lot of our first meeting exploring our own notions of death and dying: personal experiences, religious beliefs, fears. I realized that death has usually been on the periphery of my life--(almost in order) grandparents, cousin, aunts and uncles, co-worker, young man at the school where I worked, a Chicago friend, church friends, playgroup child, friends' parents, pets--but always there. I have never been present at a death and not even too near. I would say this was lucky, and of course I'm grateful not to have a regular or close acquaintance with death, but I think it leaves in its place this uncertainty, even fear. We never really talked about death when anyone died--not about where they went (because as atheists, we believed that answer was "nowhere fast") or how we felt or what death entailed, beyond perhaps a recitation of Kubler-Ross's stages and the recognition that funerals were for the living. Even my childhood nightmares of dying were met quite practically with "you're not going to die tonight." Perhaps that is one of the reasons I'm exploring this now. So I was fascinated to read the very plain, not very morbid, descriptions of physical death--about changes in breathing (including the so-called "rattle"), how hearing is the last sense to go, how extremities lose heat, how skin becomes mottled. I also liked answering the probing, philosophical questions like, "Would you like to know when you are going to die?" Yes, I said. To know, so I can both prepare and quit thinking about it.
What is hope?
How would you define hope? I think of it as optimism for the future, looking forward to/towards something. I hadn't given much thought to hope as part of hospice, but that's because my definition of hope was narrow, i.e. a cure, more time. But it can also be hope for freedom from pain, hope for a serene or dignified death, hope for reconciliation or the fixing of regrets. As a hospice volunteer, we can try to help achieve those hopes and to provide comfort and companionship during that process.
Cultural Approaches to Death and Dying
One of my favorite handouts of training concerned the different cultural approaches to death and dying, from Buddhist and Hindu concerns about being mindful (often without medication) to Jewish and Muslim quick burial practices. Just this morning, I recalled a fascinating exhibit I'd seen at the MCNY, on burial practices of different cultures in NYC: the photographs/portraits of the deceased of Russian or Eastern European origin; the stones on the graves of the Jewish dead (famously shown at the end of Schindler's List); the need for Chinese graves to face a certain way (I can't remember the specifics--Mama's ancestors are as close to the top of the mountain, but looking out from it, as they can be positioned in Thailand). We also talked a lot about death and dying in the U.S. and how it (interesting like pregnancy before it, though that has changed recently) has been shuffled off to hospitals and distanced from "normal" and ordinary life through medical intervention. This creates unfamiliarity, discomfort, and fear. Hospice hopes to allow people more comfortable, dignified, less frightening deaths through information and support. But, even now, people only routinely enter hospice 16 days before they die, though they can qualify approximately 6 months beforehand. Hospice is still seen as giving up hope and is often avoided. As I mentioned about hope, it's a different kind of hope. Because people are uncomfortable with death, they often avoid the dying and so patients can be isolated and alone (I saw this with just my own back injury, realizing of course, that people do have other things going on, but that isn't all it is). And so we hospice volunteers are surrogate friends (and might become, in a way, real friends)--sitting with, talking to, comforting, helping dying people.
Meet Them Where They Are
One of the catchphrases of training was "meet them where they are." This means if the patient and family do not want to acknowledge the process of dying or discuss death, we don't. Denial is normal and can be appropriate. We're just visiting, there to support them wherever they are. If they are angry, we listen. If they have questions, we try to answer and reassure them. But we don't proselytize for our own beliefs, though we can discuss them if asked. We can't fix things, obviously, except perhaps little things like fetching items, applying lotion, bringing music or flowers. Mainly, we listen.
Anticipatory Grief and Reactive Depression
There were several informative charts and lists of stages and theories; two of my favorite terms were anticipatory grief and reactive depression. Anticipatory grief is the sadness/anger/guilt you feel as the person grows ill, even before they die, but it is also what the patient feels during the dying process. Reactive depression is contrasted with clinical depression, in that it is based on a particular event and has limited duration. It is normal, as is anticipatory grief. The appropriateness of reactive depression is why experts were upset that grief is being added to the new DSM V, defining it as an abnormal and therefore treatable condition.
Nearing Death Awareness
One of the books I've read in conjunction with my training (but not required by it) is Final Gifts by Maggie Callanan and Patricia Kelley. These two hospice workers explore "nearing death awareness," or the ability of the dying person to recognize his or her condition as well as the similarities dying holds for many people, including communicating their needs for connection or closure, sometimes identifying the day or time of their deaths (often metaphorically, i.e. "I'm going to a party on Wednesday."), and/or seeing comforting visions often of deceased loved ones. It's a wonderful book for hospice volunteers, in that it outlines many of the different conversations or experiences we might have with patients. Recently, at church, we heard a sermon on companioning the dying, or vigilling, and the sacredness of it. The speaker, Carol Rizzolo, recounted numerous literary accounts of dying, particular from Gilgamesh and ancient Greece. She also mentions, without calling it "near death awareness," the visions people see close to their deaths.
Other Sources
I've read a few other books in the last few weeks, including Joan Didion's Year of Magical Thinking, and Mitch Albom's Tuesdays with Morrie and Five People You Meet in Heaven. Of course, these aren't textbook theories on death and dying, but personal experiences, both non-fiction and fiction. Totally different personal experiences, from Didion's journalistic exploration of her reactions to her husband's shocking death during their daughter's own illness to Albom's emotional, spiritual, personal lessons from his dying professor. I liked Albom better, though Didion's writing is more literary, if only because her memoir is so much more personal and painful. I also read Leo Buscaglia's The Fall of Freddie the Leaf, which I recall Gommie discussing years ago. The metaphor of the life of the leaf through the seasons is obvious but touching, though I was surprised that Freddie felt no anxiety or sadness when his friends fell off the tree. For kids, I like the animals of Badger's Parting Gift, which includes both Badger's own experience of dying and the reactions of his friends. I have several more books on my list--by Ira Byock, Roshi Joan Halifax, Judith Viorst, George Bonanno, even C.S. Lewis--and I'll let you know when I've read them. And if you have a favorite, please let me know (I know several of you took death and dying courses or bereavement training.)
Now that I've finished training, I'll shadow a chaplain or social worker on visits to patients and then start visiting on my own, probably once a week for as little as 15 minutes or up to an hour or so. HIPAA regulations will prevent me (and protect the patients) from sharing any but the most basic experiences (i.e. "my patient died today.") But I know I will be blogging about lessons learned eventually.
-=-=-=-=-=-
UPDATE (February 22, 2017): I would add a resource, Hospice Net, that has lots of great information about hospice, but particularly how to talk to children about death. Also, other good ones for kids include: For Heaven's Sake (about a grandson wondering where his grandfather has gone, ie. where is heaven?), and Water Bugs and Dragonflies (a different perspective on transition, death, and any kind of afterlife.)
Death and Dying
We spent a lot of our first meeting exploring our own notions of death and dying: personal experiences, religious beliefs, fears. I realized that death has usually been on the periphery of my life--(almost in order) grandparents, cousin, aunts and uncles, co-worker, young man at the school where I worked, a Chicago friend, church friends, playgroup child, friends' parents, pets--but always there. I have never been present at a death and not even too near. I would say this was lucky, and of course I'm grateful not to have a regular or close acquaintance with death, but I think it leaves in its place this uncertainty, even fear. We never really talked about death when anyone died--not about where they went (because as atheists, we believed that answer was "nowhere fast") or how we felt or what death entailed, beyond perhaps a recitation of Kubler-Ross's stages and the recognition that funerals were for the living. Even my childhood nightmares of dying were met quite practically with "you're not going to die tonight." Perhaps that is one of the reasons I'm exploring this now. So I was fascinated to read the very plain, not very morbid, descriptions of physical death--about changes in breathing (including the so-called "rattle"), how hearing is the last sense to go, how extremities lose heat, how skin becomes mottled. I also liked answering the probing, philosophical questions like, "Would you like to know when you are going to die?" Yes, I said. To know, so I can both prepare and quit thinking about it.
What is hope?
How would you define hope? I think of it as optimism for the future, looking forward to/towards something. I hadn't given much thought to hope as part of hospice, but that's because my definition of hope was narrow, i.e. a cure, more time. But it can also be hope for freedom from pain, hope for a serene or dignified death, hope for reconciliation or the fixing of regrets. As a hospice volunteer, we can try to help achieve those hopes and to provide comfort and companionship during that process.
Cultural Approaches to Death and Dying
One of my favorite handouts of training concerned the different cultural approaches to death and dying, from Buddhist and Hindu concerns about being mindful (often without medication) to Jewish and Muslim quick burial practices. Just this morning, I recalled a fascinating exhibit I'd seen at the MCNY, on burial practices of different cultures in NYC: the photographs/portraits of the deceased of Russian or Eastern European origin; the stones on the graves of the Jewish dead (famously shown at the end of Schindler's List); the need for Chinese graves to face a certain way (I can't remember the specifics--Mama's ancestors are as close to the top of the mountain, but looking out from it, as they can be positioned in Thailand). We also talked a lot about death and dying in the U.S. and how it (interesting like pregnancy before it, though that has changed recently) has been shuffled off to hospitals and distanced from "normal" and ordinary life through medical intervention. This creates unfamiliarity, discomfort, and fear. Hospice hopes to allow people more comfortable, dignified, less frightening deaths through information and support. But, even now, people only routinely enter hospice 16 days before they die, though they can qualify approximately 6 months beforehand. Hospice is still seen as giving up hope and is often avoided. As I mentioned about hope, it's a different kind of hope. Because people are uncomfortable with death, they often avoid the dying and so patients can be isolated and alone (I saw this with just my own back injury, realizing of course, that people do have other things going on, but that isn't all it is). And so we hospice volunteers are surrogate friends (and might become, in a way, real friends)--sitting with, talking to, comforting, helping dying people.
Meet Them Where They Are
One of the catchphrases of training was "meet them where they are." This means if the patient and family do not want to acknowledge the process of dying or discuss death, we don't. Denial is normal and can be appropriate. We're just visiting, there to support them wherever they are. If they are angry, we listen. If they have questions, we try to answer and reassure them. But we don't proselytize for our own beliefs, though we can discuss them if asked. We can't fix things, obviously, except perhaps little things like fetching items, applying lotion, bringing music or flowers. Mainly, we listen.
Anticipatory Grief and Reactive Depression
There were several informative charts and lists of stages and theories; two of my favorite terms were anticipatory grief and reactive depression. Anticipatory grief is the sadness/anger/guilt you feel as the person grows ill, even before they die, but it is also what the patient feels during the dying process. Reactive depression is contrasted with clinical depression, in that it is based on a particular event and has limited duration. It is normal, as is anticipatory grief. The appropriateness of reactive depression is why experts were upset that grief is being added to the new DSM V, defining it as an abnormal and therefore treatable condition.
Nearing Death Awareness
One of the books I've read in conjunction with my training (but not required by it) is Final Gifts by Maggie Callanan and Patricia Kelley. These two hospice workers explore "nearing death awareness," or the ability of the dying person to recognize his or her condition as well as the similarities dying holds for many people, including communicating their needs for connection or closure, sometimes identifying the day or time of their deaths (often metaphorically, i.e. "I'm going to a party on Wednesday."), and/or seeing comforting visions often of deceased loved ones. It's a wonderful book for hospice volunteers, in that it outlines many of the different conversations or experiences we might have with patients. Recently, at church, we heard a sermon on companioning the dying, or vigilling, and the sacredness of it. The speaker, Carol Rizzolo, recounted numerous literary accounts of dying, particular from Gilgamesh and ancient Greece. She also mentions, without calling it "near death awareness," the visions people see close to their deaths.
Other Sources
I've read a few other books in the last few weeks, including Joan Didion's Year of Magical Thinking, and Mitch Albom's Tuesdays with Morrie and Five People You Meet in Heaven. Of course, these aren't textbook theories on death and dying, but personal experiences, both non-fiction and fiction. Totally different personal experiences, from Didion's journalistic exploration of her reactions to her husband's shocking death during their daughter's own illness to Albom's emotional, spiritual, personal lessons from his dying professor. I liked Albom better, though Didion's writing is more literary, if only because her memoir is so much more personal and painful. I also read Leo Buscaglia's The Fall of Freddie the Leaf, which I recall Gommie discussing years ago. The metaphor of the life of the leaf through the seasons is obvious but touching, though I was surprised that Freddie felt no anxiety or sadness when his friends fell off the tree. For kids, I like the animals of Badger's Parting Gift, which includes both Badger's own experience of dying and the reactions of his friends. I have several more books on my list--by Ira Byock, Roshi Joan Halifax, Judith Viorst, George Bonanno, even C.S. Lewis--and I'll let you know when I've read them. And if you have a favorite, please let me know (I know several of you took death and dying courses or bereavement training.)
Now that I've finished training, I'll shadow a chaplain or social worker on visits to patients and then start visiting on my own, probably once a week for as little as 15 minutes or up to an hour or so. HIPAA regulations will prevent me (and protect the patients) from sharing any but the most basic experiences (i.e. "my patient died today.") But I know I will be blogging about lessons learned eventually.
-=-=-=-=-=-
UPDATE (February 22, 2017): I would add a resource, Hospice Net, that has lots of great information about hospice, but particularly how to talk to children about death. Also, other good ones for kids include: For Heaven's Sake (about a grandson wondering where his grandfather has gone, ie. where is heaven?), and Water Bugs and Dragonflies (a different perspective on transition, death, and any kind of afterlife.)
For adults, I find both books by Maggie Callanhan--Final Journeys and Final Gifts--to be helpful. And those You Tube videos and books by T. Bathi, including Facing Your Fears: Straight Talk about the Dying Process (very hard to find sometimes.) If you need a different kind of way to explore these issues, see the cards My Gift of Grace (a card "game" for living and dying well. Finally, perhaps for future reference for discussing these issues with your loved ones, see Five Wishes, a series of forms recognized as legally binding in many states.
See also my post, "Hospice Help," an excerpt of which I include below to have all the advice in one spot.
. . . . here are my notes, with some alterations in order and a few additions, on death and dying for caregivers.
Signs to look for:
· Sleep is so important, sacred even at this time. Patients will sleep more, coming in and out of consciousness. Sometimes they see or hear things that no one else in the room does. These visions are often comforting.
· Eating: people’s bodies will not need much food at the end and patients lose their appetites. It can be so hard to allow someone we care about to stop eating—but encouraging or cajoling them into eating can actually hurt them physically (constipation, even feeding just a cancerous tumor), so not feeding them can be a gift.
· Drinking: Patients often don’t need a lot of liquid. Natural dehydration actually helps the body by eliminating excess fluid that the heart has trouble dealing with. Excess liquid can cause swelling in hands and feet and discomfort. Signs of natural dehydration include eyelids won’t close all the way and ear lobes begin to droop. Ice chips or wet swabs can help with dry lips, also lip balm. *It is important to note that patients don’t die because they aren’t fed or hydrated but because they are ill with something else; not eating and drinking is a symptom of dying, not its cause.
· Other signs:
o Breathing: can become labored (Cheyne-Stokes breathing, with lots of time between breaths)—but it doesn’t hurt the patient; natural chemicals released by body can reduce pain and panic. If there is some difficulty breathing, angle a fan at the side of patient’s face, which relaxes the facial muscles and helps ease breathing. Also, if you breathe slowly that helps the patient. Finally, so-called death rattle is loud and can bother listeners but again it doesn’t hurt or bother the patient.
o Hands and feet can become cold or even mottled (like purple bruises); looks disturbing but isn’t bothering patient. Often a sign that death is very near (days or even hours.)
o Lazarus Syndrome—an unexplainable surge of increased energy and interaction near the very end; death often follows within hours or a day.
What you can do:
o Talk, sing, pray—hearing is the last sense to go. Tell family stories. Say what you’ll remember most. Sometimes it helps to give patient permission to go. “I’ll love you, but I will be okay. You can go.” (See my post Hospice Poems and Songs)
o Take photos, cards, and signs to decorate their room and nightstand. This gives you and other visitors, even the hospice team, something to talk about besides health and the obvious. Photos especially are a nice jumping-off point for bringing up good memories and loved ones.
o Take photos, cards, and signs to decorate their room and nightstand. This gives you and other visitors, even the hospice team, something to talk about besides health and the obvious. Photos especially are a nice jumping-off point for bringing up good memories and loved ones.
o Touch is important—brush hair, rub lotion, touch arms and hands, even crawl in bed—ill and elderly patients can be very isolated physically
o Question to ask yourself, “What’s the most important thing today?”
o Think of loved one’s energy as finite amount of money to spend each day, save it for what is most important—ill or elderly people’s pulse can be like that of a marathoner (normal is around 60 bpm; theirs can be 90-120+bpm; tire quickly, even just dressing)
o Remember to take care of yourself: eat, drink, sleep, get fresh air, take breaks. You help the patient more when you help yourself.
o Patients often have some control over the time of death—after a special date or visit, when everyone is nearby or when everyone is gone. If your loved one dies when you are not in the room, it was probably their choice, to make it easier on themselves and on you.
Peace be with Her
The daughter of the doctor who delivered our twins died of pediatric brain cancer last week. May her family be comforted.
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