Reverend Brown is coming over

They’ve decided to end treatment. Anything that might work wouldn’t work for long, and not without a substantial decline in quality of life. We’re going to try milk thistle and DIM.

“We.” I’m not the one dying. I’m not the one losing my friend, lover, companion, partner of thirty-four years.

She’s tired. She doesn’t want to go through any more chemo. I could hear that in her voice the last few times we spoke on the phone.

And here I am with a huge deadline on my plate and a monumentally rash decision before me.

Not what I wanted

My father called this morning to tell me to come home. That was all I heard. I had spoken to her last night, and although she was weak, tired, and sore, she said she was okay. She seemed okay. Not good. Not getting better. Okay. I would have come home if I thought something was wrong, if I knew that it was so close and so urgent, but this morning was too late. It was a snow day again here, so the roads were slippery and slow and clogged. I had to get in the car, and I didn’t even think about brushing my teeth or my hair or doing anything other than getting dressed and leaving.

I felt so lonely this morning, just lying in bed. It took far to long to realize that I hadn’t yet answered the phone, that NPR was reporting Kerry’s win in New Hampshire, that it was time to get up. I brushed my teeth and started the kettle and pulled my bathrobe around me until the heat came on. My work laptop was still hooked up to the phone line, so I curled myself under it and checked the school closings and the weather and my email. I had enough email to distract myself from the night’s ephemeral pangs of loss.

Still, I did check the answering machine and the cell phone for messages.

Saturday Night Fever

Today, I slept in. I slept as late as I wanted for the first time in almost a month. More precisely, it’s been twenty-six days. That’s not to say that I didn’t get an adequate amount of sleep during any of those twenty-six nights, just that all of my mornings required rising at a specific time, one that wasn’t flexible enough to allow my hitting snooze more than once or twice.

Today, I laid in bed and read a book (A Short History of Nearly Everything by Bill Bryson) until breakfast was ready. I ate breakfast and read yesterday’s paper and chatted with Mom. I read the letters to the editor aloud, snickering at some, nodding to others. Brooke and I stretched across the couch, and the sun moved from my end to hers while we luxuriated, still in pajamas, until lunch.

The period from lunchtime through nightfall was a mishmash of showers, superfluous grooming, lovemaking, and trail mix. We’re closing out the evening with Papa John’s pizza (it reminds her of college), Scrabble, and a surprisingly mellow and cheap merlot. Brooke thinks it must be the best Saturday on record. I’m inclined to agree.

I’m inclined to agree despite the baby-money-sperm-timing roller coaster we rode today. If the Amusement Park of Adult Concerns ever opens, tell them I’ve got some great names on hand. We hopped in the car when I remembered to note the start of my most recent cycle, and while creeping up that first creaking hill, we scrambled around three rooms and a closet to locate the cycle charts from last year. We crested the first hill to find my next ovulation occurring when our potential donors are relatively nearby. The subsequent curves, bumps, and loop-the-loops passed with discussions of money and travel and maternity leave. As always, the cart eventually slowed, and we hopped out feeling shaky and a little queasy but with the agreement that even if we had all the money in the world, it was logistically impossible this month. We most certainly don’t have all the money in the world.

So now we’re both aching with babylust from this close call, the closest we’ve ever had. I could have had my Sanna or my Benjamin. (Or was it Brian?) But we’re doing the really important stuff now: counting our beans. We’ve tallied our required costs each month (almost $2,400), and we’re researching childcare. For all the childcare work I’ve done around here, I have no idea what to expect for a childcare center or even a daycare home. Nannying, yes. The minimum around here is $10/hour, a fair wage when you consider that you’re leaving your very children in the care of one private citizen. However, that tends to reach about $2000 a month for full time care.

The bean counting yielded overwhelming numbers, numbers we already know about but don't have. Brooke is embarking simultaneously on a job hunt, a part-time nannying gig, and an application to a Master’s program in developmental something something biology. The baby is getting farther away, and my momma is too.

Roundabout

It suddenly occurred to me that if I take all of my government mandated twelve weeks of Family/Medical Leave to care for Mom, I won’t have any leave time for maternity leave. That’s bad, especially considering that I want to get pregnant as soon as possible so that Mom at least knows that I’m pregnant when she dies. I don’t have great expectations that she will ever meet my child.

And that makes me so sad. That’s one of the few things that can knock down any chirpy pleasantness at a moment’s notice. Another is the thought of the wake.

The wake means a swarm of family and friends before, after, and in between the funeral events. Will I be entitled to make rules about who stays in the house? Will I have the energy to enforce them? Will I finally brawl with my domineering cousin, or will I cow to her and be frustrated and angry and annoyed? Will I even be able to function?

When my aunt—mother of the domineering cousin—died, I wasn’t functional. She had been diagnosed with lung cancer in late January, having presented with severe back pain and numbness in her legs; she had been considerably limited in mobility since Christmas. Those spinal problems were the result of her lung cancer metastasizing to her bones.

In April, less than three months later, my mother called me to tell me she had breast cancer. I quit my job. My best friend for the prior thirteen years moved to Bolivia in May. In July, my aunt died. I fell apart. The insurance company proved to be useless at outlining the necessary steps for getting a covered therapist. The one I finally saw suppressed any emotional wellness I still had in me, and I was suicidal. I managed to eke out decent grades in two classes that summer, but to this day, I don’t remember a thing about either. Brooke lived with me then, and getting along with others wasn’t my strong suit. She stuck around, but no one knows why.

By the following spring, I had recovered enough to get a job in my field, and I stuck with it after graduation. That’s one year to return to functional, and it wasn’t my mother who died. So, no. I probably won’t be able to care for myself, work at my job, and maintain reasonable social contacts. Her death will be too much, and her wake will be nothing in comparison. Can I do that to a child, either a fetus or a baby? Should I?

Well, I want to. And if given the chance, I will. I’m selfish. I’m pissed off that this has to be an issue, so I’ll turn back to denial and pretend I’m moving on with my life.

Slab

I was wrong about the meat digression. Paul didn’t take two-thirds initially. He simply transferred the contents of the pan to his plate. He ended up with two-thirds of it. I realize that I forgot to state for the record that Brooke had purchased a little over one and a half pounds of meat. He served himself the whole thing: one and a half pounds of cow. And he was disappointed that he was only given the opportunity to eat one pound of that. I can’t conjure up any sympathy for him.

Guilt, coping, flailing, neurosis

Two bad days in a row. Mom went to bed early on Sunday, trying to recover from her weekend with her mother. She had planned to hit the Y on Monday, but she wasn’t up to it at all. Brooke and I ran around town, stopping by a pharmacy and three different grocery stores. She would have liked to come with us, but she couldn’t. And truthfully, our errands would have taken twice the time they did if we had had to get her out of the car, to the door of the store, into a wheelchair or scooter (if there was one at all), wheel around after her, get through checkout, park the wheelchair or scooter, and help her back into the car. All on a federal holiday. It would have tired her and exhausted my patience, and I need as much patience as possible right now.

Monday evening, Paul and Hope needed Mom and Dad to look at a house they’re interested in bidding on, and in part, Mom was saving her energy for that. While they were gone, I went on a cleaning rampage and goaded Brooke into helping with some of it. My neuroses, however, are my problem, and it’s not her fault that I found it necessary to spend all of the two and a half hours they were gone cleaning.

Paul, Hope, and Hannah came down for dinner, so Brooke cooked a bit of meat for Dad and Paul. Paul assumed it was all for him and took two-thirds of it before Dad had a chance to notice. But I digress.

Mom went to bed early again, and Hannah and I woke her up in the morning. As Mom rolled over and opened her eyes, Hannah recognized her Grammy and lit up as only babies can—bright eyes, big smile, and a big hearty clap. Her Grammy beamed when she realized Hannah was with her. Having been given instructions to return in half an hour, we left her. Almost an hour later, I poked my head in again to wake her for her second bad day in a row. She was most certainly not well enough to go to the Y. In fact, she stayed in her pajamas all day. They called the doctor midday to see if she should go in, but Dr. L was in clinic in another city.

Fatigue, exhaustion, pain in her hips and right side, shortness of breath, and a severe accumulation of fluid in her abdomen. Her liver bulges out from under her ribcage, and there’s a prominent protuberance on the right where her largest tumor is.

So Tuesday afternoon, we went out to run a couple of errands for Mom and get some jeans for Brooke. Among the clearance racks, I found a lovely red, high-neck cashmere sweater.

For $22.

There was a second sweater in beige with a V-neck. Brooke looked a bit washed out in it, so I called Mom. Mom most certainly doesn’t care about looking washed out. She cares about being comfortable, and while she can’t wear a high-neck sweater to chemo, she can wear a V-neck. And that one was $22, too.

We spent an additional $60 that day. Brooke’s knees had gone through her last holeless pair of jeans, and she finally found a pair that fit at a reasonable price for its place of manufacture. Perhaps obviously, her purchase was far more necessary than mine. But it’s soft. I feel like I’m wrapped in cashmere. It’s a big, soft, relaxing sweater. I intend to get $22 of comfort out of this sweater, and that’s something that I need.

I’m trying really hard not to feel guilty about this.

Fun with household chores

I dragged Brooke with me this time. At the last minute, I asked her to reschedule her allergy shot and come with me. My train ticket was refunded, and we packed the Harry Potter and the Order of the Phoenix audiobook that a friend sent. My parents had planned to pick me up on the way home from my grandmother’s, but they ended up stopping by, helping with the task of installing a coat rack by the back door, and driving back ahead of us. Fortunately, she had very little packing to do, as I’m keeping a supply of clothes and cosmetics—including a toothbrush for her and a contact lens case—at their house. This time, we both grabbed bathing suits for stewing in the whirlpool at the Y.

I brought her with me for a few reasons, the most obvious of which being that I barely saw her over the last four days that I had been home. Another reason is that it’s just easier when there are two of us there. She’s able to read and relax and be Mom’s companion while I fuss about the house neurotically. She helps with cooking and shopping, and I feel less of an obligation to be with Mom in her waking hours.

A huge part of it, though, is the fight we had Sunday morning. We bickered about going to church versus cleaning, whether we had time for both, and whose job was it to clean. That last part was actually an undertone rather than an explicit part of the conversation. We both scrapped church for cleaning, and we both went around the house like worker ants tidying, scrubbing, sorting, and cleaning: three loads of laundry, two loads of dishes, every room organized in to some semblance of order (including the guest room!), vacuuming, and dusting. I also finally discovered what the strange panel in the mantel was, but you don’t need to know that. While we cleaned, we argued. I’m not sure how the situation arose—although thinking on it now, it may have had something to do with fuses—but we had quite a row, and while stomping up the basement stairs, I may have told her to go fuck herself.

Here’s the thing: I’m being pulled in three distinct directions, and Saturday, I was finally released from a fourth. It’s enough to be pulled in the typical work and home directions, but work and home and Mom are overwhelming. Not everyone will get the attention they want, but I’m doing everything I can to keep everything above water. I’ve failed Brooke pretty miserably in the last couple of weeks, so she came with me to be with me but also to help. Her help at my folks’ means more time for my own work while I’m there.

By the way, none of those directions include time for myself. I did curl up in the bedroom by myself yesterday morning, but that was only for twenty minutes, and I did it so I wouldn’t tell Brooke to fuck off more than once in a day. I’m trying to take snippets of time out of each day to enjoy myself, but it’s not always possible. When I’m alone here, I spend at least an hour every night decompressing by myself. That hour means one lost hour of sleep. Other times, it’s a matter of taking an extra minute when I go to the bathroom just to be by myself, but that doesn’t work with someone waiting for my help or something going on the stove.

Push it

Mom went in to the cancer center to get poisoned today. They’re doing it every week, alternating poisons. That’s what chemo is. Radiation too, only that’s a cooking kind of killing, not a chemical kind of killing. It kills the fast growing cells, and by that, it’s meant to kill the cancer. That’s all well and good when it actually works.

Chemo most often wreaks havoc on hair, fingernails and toenails, and all of the most sensitive tissues that heal quickly. The mouth, the eyes, and the nose can all develop sores. The mouth gets the most outside contact, so it tends to be worse than the others when it’s in the line of fire. Mouth sores are painful. It’s painful to eat, to drink, and to clean the mouth. Toothbrushing is usually out of the question. Soft foods, non-acidic drinkable foods, and foods which are not chewy are most often consumed. The very thought of salt and vinegar potato chips, my particular vice, is enough to send sufferers of mouth sores over the edge. Healing from an injury or surgery takes far more time, and surgery is frequently delayed by date of last chemotherapy infusion.

After enough chemo, hair doesn’t ever quite grow back. Patients often have a constant rash. The tissues in the body are usually permanently changed and sometimes damaged. Mom, for instance, never had a day of heartburn in her life (excluding while pregnant) before chemo. It started slowly, as a side effect of one of the drugs, but now she takes a daily prescription, which is only enough to make it tolerable.

In the locker room at the Y, we compared rashes. For giggles, we called mine a sympathetic side effect to what was causing hers: cytoxan.

Cytoxan. Sigh-toxin. Sigh…

Toxin.

Wouldn’t it be great if everyone could get this Toxin pumped directly into her superior vena cava? “Pumped” isn’t exactly the right word. It’s called a “push.” Toxin push. Nancy Reagan could have used this as material.

Yes, I appreciate what chemotherapy is designed to do. I understand that by our current understanding of cancer, killing lots of cells is necessary to kill a few. As long as we get the cancer, I’m cool with that. I know that cancer sucks, even though I haven’t done it myself, and that most of us would tolerate a few horrible months of treatment to extend our lives substantially. It’s just that when she’s already doing so poorly, we really need those other cells—the ones that aren’t killing her.

Today, for the first time since it began, I had a few moments of pure, vile, puerile hatred for my job. It forces me to be distant from my mother, my parents, my real obligations. Farther from my mommy. I stomped a few times for good measure.

Then I went back to loving my work and the people and the office and the subject matter. Medical students. They’ll be pushing toxins on people some day. With any luck, it’ll work.

Thank you for shopping at Meijer

Pretend for a moment that you don’t know me at all. Maybe you don’t, and this is really easy. Great. Now pretend that we have some kind of friendly, professional interaction, like, oh, maybe you’re the cashier at the grocery store. You make polite chit-chat, asking if I’m making something special. I smile, perhaps laugh, and tell you that I’m restocking my parents’ refrigerator.

So far, so good.

You ask if they’re coming home from vacation, where they’ve been, and for how long. Having had my brain set on how many onions I needed and whether the cat litter was ringing up at the sale price, I don’t think to lie to you. I’m caregiving for my mother right now.

You relate. You tell me that you helped your parents out so they could stay in their own home when they were aging. You ask how old my mother is.

She’s 53. You seem really surprised, and you tell me she’s young. No shit. She has breast cancer. You offer your sympathies and decide this conversation needs to end on a positive note.

Do I think she’s going to be okay?

It’s a possibility. It is, of course, possible. But what I really want to say is Fuck You for making me answer that question. Fuck You for not being able to tolerate a little bit of uncomfortable silence so that I don’t have to announce to all of the morning shopping crowd that my mother isn’t going to survive this. Fuck you for not leaving well enough alone.

You should have known to stop when we got to that part about breast cancer. What if I had said that no, she wasn’t going to be okay, that the hospice nurse had just arrived, and I finally had an hour to myself to buy some fucking groceries so the rest of us don’t starve while she falls into a coma from the pain killers? Have a good day.

Ix-nay on the og-blay

She asked me today if I’m keeping a diary on this. I nodded and asked about her. She is, and it will be mine someday. It seems unfair to keep one that she can’t ever see, but there are things about this ordeal that I can’t saddle her with. So, Mom, if you can see this from the big Ethernet connection in the sky, know that I needed to keep some of my heartache from you. This is hard enough for you as it is, and I don’t want to see you coping with my inability to cope. But I’m getting help from my friends, and they’re all rooting for you.

A long commentary on the weekend vis à vis the YMCA

As an undergraduate, I worked at a childcare center as a preschool teacher. My duties ranged from helping children change out of their poopy pants to developing their curriculum. Perhaps needless to say, I was paid a stunning $7 per hour to enrich their lives. The director had a huge bookshelf from which I would select, often arbitrarily, a book for morning circle time. One day, I grabbed a blue paperback with a drawing of a child sitting on the floor of a bathroom, which he had clearly destroyed himself. The child on the cover is beaming, proud of smearing toothpaste on the floor and spreading toilet paper around the room and waving a shiny watch just a little too close to the toilet. The book, Love You Forever, looked like a good choice for my motley crew of three- and four-year-olds, and the director smiled at me as I chose it, as she often did.

The book is wonderful and deeply moving. It’s funny enough for small kids to enjoy it, and they’re still able to glean some significant meaning from it—my parents will always love me. Somewhat troubling is the deeply moving ending, and this was an ending for which I was not prepared. The general plotline is that Mommy has a Son, and she rocks him and sings,

“I’ll love you forever,
I’ll like you for always.
As long as I’m living,
My baby you’ll be.”

She does this with him when he is a pure and gentle infant, an enthusiastic toddler, a grubby kid, a reckless teenager, and a grown up man. When she is old and sick, he comes to her and rocks her and sings,

“I’ll love you forever,
I’ll like you for always.
As long as I’m living,
My mommy you’ll be.”

At which point I nearly burst into tears in front of 18 of my closest child-friends. The Son then goes home and rocks his own pure and gentle infant, singing his mother’s version of the song. (Later, I walked back into the director’s office and encountered other staff who were incredulous that I had read it without crying in front of the kids. I was livid that they had seen my choice and hadn’t warned me ahead of time.)

Sweet, loving, touching, etc., etc. It’s a great book all the time, but it’s gut wrenching and heart breaking when your mother is dying. So I bought it for her, and it arrived yesterday while I was with her. We both cried at the first page, and it took several minutes to get past that point. Thinking back on it now, I can’t quite remember why I’m doing this, why I would subject myself to such constant heartache.

But today, we went to the Y and hung out in the hot tub. We paid the $10 per head daily rate and, for an hour, moved between the massive hot tub and small instructional pool. I gave her the last tiny bit of support she needed to float in a completely relaxed position. No muscles tensing, no pressure on her joints or bones. Her upper back was just resting on my right forearm, and I kept my left arm under her knees. I held her in a suspended cradle position, so effortlessly and distantly that it was almost like I didn’t mean it. I did. I do.

And I know why I subject myself to this heartache. I know how deeply this is scarring me. There is no alternative. I live this out with her, or I die knowing I left her. Sometimes I panic and want to get out, to stop myself from going through this and to stop this whole thing from happening. Maybe if I bail on her, she won’t die. That’s not even convoluted logic. It’s just not logic.

Last night, one of my dreams was that I went into a building, ostensibly a movie theatre, and it was quite dark with red light around the back of the room. There were two doors in front of me, and one line of people at each door. A man, a worker at this establishment, was informing the people lining up that through his door, there was a certain movie on one side of the hall, another farther down on the same side, and so on. Then, he laughed and announced that it was actually Hell, burning for eternity, etc., etc. I turned around to go back out, but the doors only opened from the outside. Others were streaming in, and I couldn’t get them to stop. And then I woke up.

I fought with myself all day about what that dream fucking means. It wasn’t until I wrote that paragraph about panicking and wanting out that it made perfect sense. This is a hell, and I can’t get out. All of my anxiety about this process floods me when I’m there and when I’m making plans to be there or return from there. For no specific reason, my stomach sank when I sat down on the train tonight. It just did. Because this sucks.

But I do it. I want to do it. Being there with her in her last months and days and hours and breaths is what this is all about. She saw me into this life, and I’ll see her out of it.

Because I love her.
Because she loves me.
Because she made me who I am.
Because she gave herself to me.
Because I cannot bear to let her go, and this is the closest thing to keeping her.

I am motion, you're the rolling ocean

Yoga didn't happen today. Morning came around 1pm, but on the upside, she wasn't aching. Normally, her bone pain wakes her, and she gets up to medicate herself. Today, she slept in and felt fine, but only for about an hour and a half. I left her for twenty minutes to take a shower, and in that time, she had dressed and washed up, and her pain had set in. She cornered Dad for sympathy, as I was not available.

I'm amazed by the amount of time taken up by being her companion. Time seemed to slip by so quickly while I was almost entirely unproductive. In the late afternoon, we sat down to plan a dinner menu for the next week. I couldn't find anything that looked both appealing and easily freezable that didn't require getting up to my elbows in ricotta cheese. I like cheese, but not that much.

All of their meals are vegetarian, largely because I won't cook meat but also because she doesn't want it. Most of the meals allow for Dad to throw in a chicken breast or a pork chop if his heart was set on it, but I doubt he will. I'm shopping tomorrow so that I can make kits for their meals. Next weekend, he's supposed to get the crock pot out and slow cook some vegetables, but I'm a little nervous he won't remember to start it in the morning. I'm not sure how many notes I can leave for him before he'll be annoyed and less enthusiastic about my meal planning. There's a fine line between caution and overkill.

Maybe I'll leave a note for the office staff to remind him. And maybe I'll call in the morning, just to be sure.

I have to get up in time to hit the grocery store before the stay at home mom crowd rushes in--after the elementary bus leaves and before morning nap. I hate shopping at this store, although despite its enormity, it is something of a local business. They're paid decently and are union, or at least, they were about twelve years ago. Even the baggers. Twelve years? Thirteen, now.

God, I feel old.

Addendum

It’s only a flesh wound

Yes, I can still navigate my parents’ house in the dark.

Except for the furniture.

Confidential to Buggydoo

Mom loves all of it. I’ve been instructed to give you a big hug for her. She gushed. I pampered her. You’re popular.

Posh spice

We had a social evening. I believe my dismay was masked sufficiently. I arrived (an hour and a half late) there to Sonya and Mom chatting on the couch. Sonya had brought futtush for a late lunch, and all four of us enjoyed it. Hers really is better than any I’ve had. She says the trick is the sumac, for which she has to travel halfway across the state.

Later on, Sonya’s daughter, Tara, came over, and the two made dinner for the five of us. I recommended a movie, and we ate, chatted, and viewed. Bend It Like Beckham went over well. Mom was ready for bed before the movie was over, but every time Sonya or Tara asked how she was, she smiled and chirped and fussed over someone else. She can’t stand to be tired or weak in front of them, and that’s more out of her nurturing hostess desires than her pride. After they left, she stayed up another twenty minutes. We snuggled on the couch, and I rubbed her feet.

Her days are divided by her physical state and regular tasks. Morning comes when morning comes—there’s never any rush or time constraint. After morning comes pills, which can last an hour if conversation is involved. Pills go down slowly, and breakfast may follow if her stomach isn’t queasy. If she has plans for the day, her bath is next, and after the bath—with no exceptions—she is dressed in “everyday cashmere.” (This is how I know my mother and I belong to two different social classes.) Her plans may be delayed for a nap and lunch or vice versa. Big plans are almost always followed by a nap. Dinner rolls around, then TV, then bed.

Tomorrow, sometime after pills, we will try yoga.

Beside farms, parallel pipelines

I know I never mentioned this, but trains tend to run behind. In the event that this is a surprise to you, please consider traveling, at least periodically. A friend tells me that they have the same number of delays and the same length of delays as the major airlines, give or take a little, of course. The thing is that trains tend to be used for shorter trips, so the delays seem so much longer. There’s also more to do in airports than train stations. On the upside, most of my travels have been on only partially filled trains, so I could have two seats to myself. This is wonderful, and I could not be writing this right now if this weren’t the case. I’d feel a bit, oh, awkward writing with a stranger having full access to my thoughts-in-progress. It’s less about revealing myself to strangers than fiddling around with editing and misspelling while someone is watching. And hell, I know they’d be watching. I would.

I spoke with Mom on Thursday after her appointment with Dr. L. Her liver function (“normal” = 0 to 150 or something) has continued to improve (down to 818 from 880), although not as dramatically as before (1600-something to 880), and her tumor marker is down a bit. She believes that Mom’s fatigue is largely due to chemo, not cancer. The nerve pain she felt the other night is probably radiated pain from the liver and/or bone metastases, and she was given some kind of bone-happy infusion. The chest x-ray showed a decrease in fluid around the left lung, but the lower portion of the right lung has collapsed, leaving her short of breath. The brain scan and other x-rays are in the process of being ordered. I panicked about the collapsed lung, but Dr. L did not address any course of action. We will assume no state of emergency yet.

Mom adores foot rubs, and Dad is terribly reluctant to indulge her—not only is he not much for giving massages, he’s anti-foot. I’m pretty much her only source of foot rubs, and besides, he does a half-assed job anyway. Leigh Anne, always thoughtful and generous, sent a foot treatment care package for my time with Mom. Brooke reminded me to bring it, and it has left a sweet, lemony, almond fragrance in my bag. My sticky mat never smelled so good.

Besides foot rubs, my plans include cooking and freezing enough dinners for the time I’ll be gone, cleaning the bathrooms and vacuuming the house, and goading Mom into engaging in the “Gentle Yoga” tape we left there. Then, of course, I have my own things to do… work stuff, coalition stuff, and church stuff. I’m beginning to wonder if I’m overengaging my time. Church stuff is over in a week, though—thank God.

Perhaps obviously, I’m less profoundly sad than I was a few weeks ago. I don’t remember when my mood suddenly lifted, but I’m grateful beyond belief. Maybe it’s a response to Brooke’s increasing stress over the dearth of jobs and glut of job seekers. Maybe I’ve been renewed by a few startlingly productive weeks, and I’m back in messiah mode. Maybe it’s evidence of God carrying me through this time—God in the form of my friends. Whatever it is, I read a newspaper column this morning reflecting on corporate urban renewal versus neighborhood urban renewal, and I’ve been inspired to open a grocery store in one of the many neighborhoods which lack decent food and any real produce.

Emilin the Dreamer is back, and she has to compete for time with Emilin the Daughter/Wife/Drone.

Housekeeping

Notes on a phone call from Mom:

More bone pain, esp. overnight and in hips. Pos. nerve involved.
More short of breath, more tired than last week.
MD tomorrow: chest x-ray.
Ask RE: new round of MRIs. Due for new brain scan?

Eating frozen lentils; pasta tonight.
Eggs – good
Meat, esp. sausage – bad

Hannah overnight: too much. Tired now.

For my own reference:

· Ask RE: Hope’s work sched. and needing help.
· Phytosorb order form for Dad.
· Make more food.

Like buttah

I’m getting a little overwhelmed by all of the prospective travel and scheduling. If I go to Mom’s on one day, I have to make arrangements for one obligation I would miss, but if I go after that obligation, I only have a day or so there. It seems like that’s the pattern, and it’s starting to freak me out. It’s harder still to work around the train schedules, and I can’t leave Brooke without a car most days.

Not to mention keeping up with meetings and work and everything else. I’m overdue to see the dentist and the lawyer. And somewhere in there, I have to see a massage therapist. Not that I’m complaining about that last one.

Brooke has been getting me up to do yoga in the mornings, and I do feel better when I’ve worked out in the morning. But, well, we got Land’s End flannel sheets for Christmas, and they’ve been on the bed since Monday night. It’s been way too hard to get out of bed these last two days. For some reason, I think to pray in the mornings more often than before. Rather than thanking God for those sheets, maybe I should ask for a less hectic calendar.

Witnesses

My father got a video camera for his fortieth birthday, and the family logged a substantial number of hours on it in the months following. That was the year I turned nine. My favorite bathing suit was green on the bottom and pink on the top, and the two parts connected on my right side. I had been Narrator #9 in the school play, and I treated the camera to a stirring rendition of “Go Home Professor” from the musical Wackadoo Zoo. I also performed “Sardines,” a Girl Scout camp song, on the patio by the pool, clad in that green and pink bathing suit with my hair still wet from swimming.

In those videos, my parents didn’t act or look how I remembered them, and I don’t know if that’s a function of relative memory or lack of perspective at the time. The world is so black and white at age nine. Life was good. I could play in the pool all day with my friends, and school was just fine. I loved my family, and they loved me, even though Paul and I didn’t get along. Now I know that my mother was struggling with Dad’s drinking and that Dad was definitely drunk in some of those scenes. Mom seems to have come out of her shell in the last fifteen years, doing what she wants when she wants.

My paternal grandmother lived with us part-time for several years, and last night, Brooke and I watched the video from one of the Halloweens she spent with us. Three days a week, Gramma went to an adult day care program so that she and Mom wouldn’t be at one another’s throats. On Halloween, Gramma was dressed as a clown to go to day care for the party. One scene showed her whacking at a pink donkey piñata with a cane. I don’t remember her from her lucid days, and I worry that these videos will imprint a false memory of her. I worry about that with Mom as well.

When I am left with these cassettes as my witnesses to her life, what will I remember? Will I always know the subtle differences between Mom and those tapes? Should I let my memory of her appearance be subsumed by the reality of the video? She had bad hair. We all did. It was the 80’s. The thing is, I don’t remember that about her. I remember her fuzzyfuzzy blue bathrobe and sitting on her lap before kindergarten, the bathrobe and her arms wrapped around me. I remember throwing myself into her arms after my first full week of summer camp and the shock on her face at the number of mosquito bites I had. I remember being very small, too small to be in the deep end of the pool by myself, and the smell of her skin as she bobbed with me.

In the summer when I rest outside in the sun, I have a similar smell on my skin.

Knights in earrings

What to say, what to say...

We spent the few days before Christmas running around and helping my parents prepare. Just as the Christmas things were starting to go on sale, right before the big day, Mom insisted that the contractors’ gifts for next year be packaged. Now. (Dad won’t think to get all of it ready, so I’ll have to remind him and help him next year.) Brooke and I escorted Mom around town, running various errands and trying to restrain her in some way. Fortunately, the craft store had a wheelchair rather than an electric scooter, as we hadn’t had much luck with the grocery store’s scooter. The salesperson behind the seafood counter was very understanding.

On Christmas Eve, I went to Mom’s doctor’s appointment with her. I met her doctor, and we had some good news about her liver function: it’s not great, but the numbers are headed in the right direction. We addressed diet (no need to limit protein, but don’t push it), nutritional supplements (go for it), herbal tea (likewise), and the ominous handicapped parking tag. There is now a handicapped parking tag hanging in the truck, and it expires in 2008 on Mom’s birthday. It’s wishful thinking, I guess, but I wouldn’t mind having to renew it.

Back home, Mom and Dad spent Christmas night with us. I love seeing her pad down to the couch with pillow creases on her shiny head. Very shiny.

Brooke and I returned to their place on Tuesday afternoon, New Year’s Eve eve. I’m sorry to say that we didn’t do much in the way of useful things.

She made us go through her jewelry and clothes and take what we wanted. I have a cloth sack about the size of a Kleenex box full of her jewelry, and we dragged home several department store shopping bags packed tightly with sweaters and jeans and slacks and shirts. I have a navy blue wool suit now.

I’m growing up, I guess. It inspired me to choose my work clothes and jewelry more carefully, more professionally. To choose my jewelry rather than just wear the same things day after day. I’d never buy this stuff on my own, so I might as well appreciate what it is. It was a Big Girl moment for me, though. Last night, Mom was crying in my lap while I rubbed her head and spoke reassuringly. She didn’t want me to leave. I kissed her and hugged her and sent her to bed, telling her I’d wake her before we left. Then, I went to bed and sobbed into Brooke’s neck.

In April, after the zoo reopens, all seven of us will go and explore it. Mom in a wheelchair, Hannah in a stroller. She will be well enough for that. We will take home videos and enjoy each other and ham it up for the camera. And we’ll watch it over and over again and remember how wonderful it was to be together.

More on home videos another day.