Cousins

I had a boatload of cousins around me growing up, and they were like siblings, but better, because we never had to share a room or a parent. So I'm always happy when V gets to hang out with one or more of her four cousins. Will, at 17 days her junior, is the closest to her in age, and they get to hang out fairly often.

 

 She is headstrong and determined, but when she's around Will she often lets him lead. Here, they're playing POP THE BUBBLES! which must be spoken loudly and with great excitement. They do a good job trading back and forth, deciding what to play and how, and though they do fight sometimes, they usually get over it quickly. Since V won't likely ever have a brother or sister, her cousins are the ones who will remember her childhood with her.

They really love each other. I'm so glad.

Pumpkin party!

Our dear friend Carla threw a pumpkin carving party in her garage today, and between us all, we carved 17 pumpkins. No one got hurt (except the pumpkins), we had delicious hot dish, and a whole lot of fun.

Kate, on the left, above, grew and tended the pumpkin patch from whence all 17 came. 'Cause that's how we role in Hendrum.

 Here's Chelsey, who missed a Bison game to be with us today. I remember the day she was born. In fact, I remember the day her parents got married. In fact, I remember the day her father graduated from high school. In fact, oh, hell, this could go on all day.

 This was the first pumpkin V and I carved. I did a lousy job of angling the knife to make sure the top wouldn't fall in, but inside was the loveliest pumpkin flesh I've ever seen. It wasn't slimy at all, but sort of fluffy, and pale yellow.

 I've long been a traditionalist when it comes to pumpkin carving, avoiding those fancy-schmancy cutting kits, but Carla had a whole collection of fantastic patterns. The pumpkin next to Kristen up there, the first pumpkin on the left in the top row? That's ours.

 The second one we carved is the one on the left in the third row, by Chelsey's seasonally inappropriate flip-flops. It's a 5-toothed monster. It was much more complicated (he was supposed to have 6 teeth), but still fun. 

The only picture I got of Carla that she'd let me put on the blog. Actually, I didn't check with her on this one, but since it's not of her backside I figure we're good. Thanks for a lovely day, lovely tatertot hotdish, and lovely company, dear friends. I like how y'all roll in Hendrum.

When someone you love has cancer: a list of things to do besides scream all day long

As I mentioned here, cancer is not new in my family, but it's never been quite this close to me before.  When my dad had his stroke, when I was 12, he went from the head of the family to needing almost total care overnight, and that's as close of a model as I have for this kind of crisis. And that model sucks, in general, but especially for this situation. My in-laws, Mary and David, are handling the day-to-day details of Mary's breast cancer and subsequent chemo on their own. We live only 90 miles away, but it feels like half a country some times. There is little enough we can do, really, to make a difference, except pray, which we're generally not into. So I've been working on how I can be a loving, helpful daughter-in-law and not get underfoot at the same time. Here's what I've been doing.

1. Sending cards. This one seems obvious, but I've been sending roughly a card a day. At first I bought cards, but that, as you can imagine, gets expensive. Plus the Get Well cards are too close to the Sympathy cards for my liking. So I've been making cards. I went to Michael's and got an 8 pack of pre-cut and folded cards for $1, glued in some of the fancy paper I had lying around the house, and wrote something funny. About 20 times. Well, they're not all funny, and sometimes I found quotes on the internet of hope or whatnot, but mostly I'm trying to brighten Mary's day, which is filled, often, with naps and worry and appointments and, in the last week, the loss of all her hair. Here are some of the themes addressed in the cards I've sent:

• Beautiful bald people (Yul Brenner, Mary, Sigourney Weaver in Alien, etc...)
• Good things about chemo (ice cream for breakfast and still lose weight! no need to shave your legs!)
• Strength (you've done lots of things harder than this: been married for over 40 years, raised 3 crazy kids, taught in public schools, had me to put up with for 10 years, braved downtown Vegas...)
• Quotes (In one card, I put the quote "If I keep a green bough in my heart, the singing bird will come" on the outside, and on this inside I wrote "but he'll just shit all over everything, and who'll clean that up?")

I've also tried to remind my side of the family, who love Mary so much, to remember that she does like cards. They're actually pretty good about that stuff, but it helps to hear from me that they're important. Mail really does make a difference when, as Mary said "every day feels like a year right now."

2. Calling. This one can get a little tricky. It's so hard for me, because I talk to my family several times a day, but in Shaun's family it's not unusual to go weeks or more without any contact at all. With Mary having cancer, I've just decided that 72 hours is my absolute limit. For awhile after chemo started, I was calling everyday, just because I so wished I was there and could help, but I think it got a bit much (sorry, Dave). Every 2 or 3 days is good, too, because then we have new things to talk about.

3. Visiting. Even trickier than calling, it's hard for chemo patients to know how they'll feel in 2 hours, much less 2 days. For Mary, her main side effect seems to be exhaustion (and alopecia. isn't that a pretty word?). I would like to drive out and see her everyday, and bring her cookies and tell her knock knock jokes, but that is neither practical nor especially helpful. In the past, before cancer, we almost always stayed 2 nights or more at the lake. It's a 90 minute drive each way, and there's room for almost everyone in the family to stay over at any given time. But just because we can stay over doesn't mean we should.  We are especially careful to check with David before announcing any travel plans. I do hope in the coming weeks we can have some day trips out there and back. Just visiting for a couple of hours really wears Mary out, so I will try to make it so that we're also providing something more: food, for example, or other necessities. I might do the grocery shopping for the week for them, or the laundry. This way I can help David, too, who as Mary's main nurse is working damn hard these days.

4. Presents. Speaking of food, it's often hard to know what to give cancer/chemo patients. Many have little or no appetite, but many also suffer from weight loss, so small, delectable things can be especially lovely. Not too rich, because of nausea, but, say, a nice milk chocolate selection, or a cheeseball. One friend brought ribeyes just before chemo started, when Mary still had an appetite (and totally made the rest of us look bad. You know who you are). Flowers are nice, too, but Mary's allergies keep her from enjoying fresh flowers most of the time. When Dave and Mary couldn't come to V's birthday party, we showed up later that day with party hats in hand: last time we were there, the hats were still hanging on the closet door. Other gifts I've sent or considered:

• thank-you cards. Early on after her diagnosis, we received a beautiful handmade thank you card from Mary, thanking us for our support and junk. Which was lovely. But I knew that with chemo, she would just not have the energy to maintain production of these, so I sent her a pack of 10 thank yous and two gel pens I bought at Michael's. Everyone loves new stationery, and between naps, she can dash off a note or two as she feels like it. And if she doesn't feel like it, that's okay, too.
• a silk pillowcase (alopecia often causes a sensitive scalp, and satin or silk is recommended on many websites). V and I made her one from some really nice heavy sea-green silk, and I hope it brings her many sweet dreams.
• lotions. Mary has a lotion obsession, and even though she's exhausted I'm sure she's finding a way to use good lotions. (I'd be careful of especially smelly ones, though, because sometimes strong smells can trigger nausea, too).
• silk scarves or kid's hats. My cousin Erin, a two-time cancer survivor, mentioned that she found her wig was totally a waste of time and money, but she felt quite pretty in a fancy silk scarf, artfully tied around her head. And she also said that kid's hats work better on women's heads, especially without hair: they fit better, and just look more cute. V and I have chosen a great one to bring to Grandma next time we visit. Hopefully she'll let us take pictures!

I hope no one you love ever gets cancer, but chances are they will. If so, I hope these ideas help you. It's a whole different thing to be a primary caregiver (like David) than it is to be a secondary support person, but both jobs are so important.  I hope when chemo is over we will all be able to spend long periods of time together, and eat cheeseball, and drink cheap beer, and write a bunch of thank you cards for all the love the family has received on this sucky journey we're on.

I'm off to make some more cards. Suggestions are welcome: we take cancer seriously, but humor more seriously. Thanks for reading.

Picture day

Monday was picture day at V's preschool, and of course we were warned well in advance, but I can't be expected to remember everything. Besides, on Mondays, Shaun gets up with her and takes her to school, so it was 10am before I realized I hadn't sent back the envelope (which clearly states "envelope MUST be filled out completely and payment enclosed in order for the child to be photographed) and check. Luckily, my sister is V's teacher, and just one frantic phone call later and we were set.

Except I had no idea what she was wearing, or if her hair had been brushed or not. And if it hadn't been, I was pretty sure she wouldn't let some stranger with a comb come anywhere near her.

But she did. And the reddish-orange t-shirt doesn't look as bad as I'd feared, either. Suddenly, I feel a bit inconsequential in this whole process.

the one where I get off my high horse. mostly.

One of my favorite photos ever taken.

Forced heterosexuality and other American ways

"Dear America, when you tell gay Americans that they can't serve their country openly or marry the person that they love, you're telling that to kids too. So don't be shocked and wonder where all these bullies are coming from that are torturing young kids and driving them to kill themselves because they're different. They learned it ...from watching you."

~Sarah Silverman

As a co-advisor for our campus's LGBT group at my college, and as a longtime supporter of gay, lesbian, bisexual, transgender, and questioning students (and non-students), I've often had to talk to homophobic people about their point of view. Usually in class it comes up as a student says something is gay, as in "That movie was so gay." I generally start by asking them what they mean: does that mean the movie only finds other movies of its same type attractive? Does that mean some movies are so straight? As an English instructor, I tie it back to the power of language, and how if we're going to use a sexual orientation term to say something is stupid or lame, it will by association suggest that the sexual orientation we're referring to is also stupid or lame. Students learn quickly that I don't let those comments slide in my classroom.

But recently in class, I had a conversation that I'd never had before. We were talking about V's birthday, and how she was turning 5. One of the students said "Just wait until she's turning 13, and obsessed with boys." Much of the class laughed in agreement, but I said, quite honestly and without thinking, "or girls." The entire class gasped (except for the lesbian in the front row, who quietly applauded). I've never shocked an entire room of students so thoroughly and unexpectedly! We talked about it a bit more, and aside from pointing out that sleepovers would be a whole different deal if she's a lesbian, the students listened to my thoughts on the matter and no one stormed out, so I'll call it successful.

I always find it disturbing when parents or any one, espeically if they've never met my daughter, assume they know V's sexuality. I mean, she's freaking five years old. Maybe she does know which sex she'll want to marry, but I certainly don't, and I don't want anyone telling her that what she feels is wrong one way or the other. And I've seen it play out over and over and over, among my friends and my students, that a big part of the heartache of being LGBT is the family expectations, and the feeling that they are letting their family down. I don't want V to be sorry for who she loves. I want her to make good, affirming choices, and find loving healthy partners, and be comfortable in her own skin.

Last year, I had a gay student in the PSEO program, meaning he was a senior in high school, taking college courses. When we talked about V over a year ago, and I said I didn't care if she was gay or straight as long as she was happy, he said "But you'd still rather she was straight, right?" I get this a lot from people, but from him I was a little surprised. No, I said. I want her to be happy and love whomever the hell she wants, as long as they're good to her. Huh, he said. As a man who'd been aware of his own homosexuality for years, he was still astounded that a parent could say this about their own child. His family is a type of "christian" who view homosexuality as a sin on par with child molestation. They are very good, though, at loving the sinner and hating the sin, and when he came out at 15, his family and church supported him, provided he didn't act on his "sinful urges." When he got his first boyfriend at 17, his parents kicked him out of the house.

This young man was not a rebellious student. He loved his family and his church, but he also knew unequivocably that he was gay, and he couldn't change that. He lived with his non-denominational aunt and her family for awhile, and his father threatened to yank him out of classes, and took away his car. They stopped paying for his cell phone. Eventually, he had to move out of his aunt's house, and got an apartment with 6 or 7 other students. He worked hard at his part time job. He ran out of money over and over. He missed his family. He and his boyfriend broke up, and within another month, he moved back home. He promised to give up his "gay lifestyle" and petitioned to get back into the church. He dated a woman, but whenever he told me about her, it was obvious to me that his interest in her was tied to pleasing his family: I've never forced myself to have sex with someone to impress my parents, but that's what he was doing.

The last time I talked to him, he was hopeful that his church would change, and come to see homosexuality not as a sin. I couldn't bear to tell him that it's unlikely to happen in his lifetime.  I told him that he was in the highest risk group for suicide, and made him promise to call me if he needed me. In another class, one of my colleagues told him she hoped, despite the rejection from his parents and his church, that he had someone who loved him unconditionally. He said he did. He said my name.

He's transferred, now, to a different college, and he still lives at home. He was engaged to marry his girlfriend, and I could see a light fading in him (though I've since heard that they've broken up). He doesn't want to leave his church, but he will have to, eventually. Or he'll live a lie.

At first when I started to get to know this student, I was furious. I wanted his parents & church brought up on child abuse charges: how is this not profound emotional abuse? But I know that will never happen. Most of the churches in America take a similar stance on homosexuality. Just look at the ELCA, who, when they agreed to allow openly gay and lesbian clergy (but only if they were in long-term relationships, which I find crazy), lost many congregations. I don't understand how much fear and hatred can be tied to an essentially private, personal matter, but I have seen more than once the ramifications.

I know V will feel pressure from the rest of the world to be a straight girl. And I know if she's not that her life may indeed be more difficult than her straight friends. But I don't want an ounce of that difficulty to come from her family of origin. In the meantime, I will vote for people willing to overturn "Don't ask, don't tell" and offer marriage rights to any two consenting adults. And I will allow V to figure out what sex she finds attractive. Because it's not up to me, or anyone else.

Two birds and a sunset

I like writing for this blog, and lately I like posting pictures even more. Please comment. Though my stats tell me otherwise, I feel sometimes like I'm talking to myself. Which is okay, too, I guess. But if you're reading, tell me what you had for breakfast today. I could use inspiration.

Another one of THOSE posts

In my family, cancer goes back for four generations. We've seen colon, prostate, uterine, breast, nasal, bone, lung, and brain tumors. So we know our cancer in this family.

Perhaps, then, I was less surprised than others when Shaun's mom and dad, Mary & David, called at the end of August to say that Mary had breast cancer. But less surprised does not equal less devastated. In the last ten years, Mary has become one of my very best friends. She makes me laugh, inspires me in all sorts of ways, and we can commiserate over what it's like to be married to a Ganyo.

 (here's Grandpa David, making a leaf house for V this past weekend).

She had a mastectomy at the end of August, and her first chemo was 2 weeks ago tomorrow. Her next chemo is scheduled for Wednesday of this week. Her hair will start falling out, likely, in the next few days. But she will survive this round, and we are all so, so thankful for clear margins and good odds.

My grandfather died in 1979 of colon and prostate cancer, and since I was six, I have no real memory of him before cancer. He was already bald when I was born, and 78 when he died. But I remember my mother's heartache at his illness, and I remember being in the St. Ansgar's waiting room for hours at a time (back when children under 12 weren't allowed to visit patients).  I would've been almost exactly V's age.

My parents didn't talk to us much, that I remember, about Grandpa's cancer. We knew that's what he had, and we heard words like chemo and restraints. But I don't remember direct conversations about what was going on. We're trying to do things differently with V. We want her to know that Grandma had  a tumor in her breast, and that's why she had surgery to remove it. V knows that microscopic cancer cells were found in one lymph node, and that that's not as bad as we'd feared. She knows that chemotherapy is the medicine used to make sure the cancer goes away, to try to keep it from ever coming back.

She knows that the chemo is why grandma is so tired, and why she'll lose her hair. V also knows how crazy it is that medicine, that is, stuff that's supposed to make Grandma better, is totally going to make her more sick first. We try to focus on good things, like how lovely it is to lay down next to Grandma and watch cartoons, and not talk so much about why Grandma's not making cookies on this visit, or why we have to hug her gently until the surgeries (from drains and ports, besides the obvious) have time to heal. We draw pictures for Grandma, and send her postcards, and talk to her or Grandpa on the phone sometimes. Sometimes we go out for a short visit, like this weekend, when we were there for about 17 hours, which was just enough to wear Grandma out but hopefully also cheer her up.



We celebrate our time together everyday, and hold on, and try to ride it all out together. It's the only thing we know to do. 

Mushrooms Number 3

Nothing like a wet, wet fall and Minnesota lakes country to make a giant wall of mushrooms. Frankly, this is a little scary: In the month since we'd been to the lake, this wall grew up out of nowhere, and it's about 6 feet long and nearly a foot high. It makes me think of a coral reef, somehow.

 The pile from the top: they're very pretty.

From underneath, though, they're breathtaking, I think.

If we knew if we could eat them, think of the crazy mushroom feast we would have. Mushroom breads, mushroom pancakes, mushroom cake...yum.

A recent project to share

17 days after V was born, we welcomed William Duane in to the world, and so our Septembers since have been full of birthday excitement. After I made V her sweatshirt last spring, she proclaimed a desire for all of her cousins to have their own. And so, on September 23rd, I wandered down to the basement, found the bought-at-the-thrift-store-but-still-brand-new brown sweatshirt in Will's size, and cut a W out of spaceship print flannel. Then I pinned in near the middle and sewed it down with a wide slow zig-zag stitch.

This picture doesn't show it well, but the flannel is light blue with flying saucers and rockets (which he's kind of into right now). And it's a bit big for him, so hopefully he'll be able to wear it for a couple of years. And also, it smells like my basement (oops! Sorry, nephew) but hopefully that will wash right out, and he will have many hours of happy playing. It's almost like a superhero cape, but with more function and less risk of getting caught on a tree branch.

Emmy & Jake, I'll try to wash out that basement smell ahead of time if you pretend to be surprised at Christmas, okay?

Dolly

Trying to avoid grading, I went in the backyard to take some pictures. I hope you like them.

My trusty sidekick

I really said all I had to say on this subject last year, but lo and behold here's another birthday.

The best part of having a sister is whenever our parents drove us crazy, whenever one of us had a bad day at school, whenever we needed to have a good screaming fight, we had each other. It's not unlike having a sidekick, a superhero partner, a Daphne to my Velma.

We both went to UMM: did you know that? She transfered to the Twin Cities campus the year I graduated, and so poor UMM found themselves Johnson sister-less entirely in 1995.  I bet they still talk about us there. They should. 

In Morris, at the grocery store once, we were checking out and laughing about something silly, and the cashier (the Willie's Girl, I think she was called) said "I know you two are sisters, but are you twins?" We stared at her, and then burst out laughing. We've always felt we look nothing alike. Only crazy people think we're twins. But Willie's Girl was, it turned out, a twin herself. Hm.

Now that we're married with our own kids, we never get our picture taken together anymore, mostly because one or both of is behind the camera most of the time. I'll work on that. But here she is from this summer, with her fancy-schmancy camera, taking pictures of our kids and their second cousins.

I love you, Daphne. You're the best sister a girl could ask for.