A Monkey Boy Story

The other day Ellen and Monkey Boy stopped by for a bit. Ada may not know how to turn the television on, but Monkey Boy does. (He's older and wiser, but I'm hoping she doesn't catch on to this trick too soon.) Monkey Boy sauntered up to the tv and flipped it on. The Tyra Banks show was on, featuring transvestites. Looking briefly at the curvey, ultra-femmed out trannie on the screen, Monkey Boy declared "Da Da."

Apparently there is something Ellen has been keeping from me.

Random quote and unrelated photo of the week

Look, as for Hulk Hogan, do not mention his name ever again! He will be referred to, if we even need to refer to him, which I doubt, as "Blond Blondie, Big Blondie!" In this way, we will disrespect him! In this way, he will be driven from my dreams! No more sneaking up behind me, "Blond Blondie, Big Blondie!,"and putting me in a headlock, and I am naked, and have forgotten to study for all my exams!

George Saunders
Proclamation

Open letter to my daughter

Ada -

As you become increasingly active and engaged with the world, I want you to know I am paying attention (and riveted by it all). Some things I am noticing and wondering:

• It would be nice if, when I pick you up at 6am in order to nurse you, the first word out of your mouth was occasionally "mama," instead of "papa" or "book." Though really, I'd settle for "hi."


• I know that you love me intensely (and thank you for that, I do revel in your slobbery, sweet love), but is it necessary to show your desire to be with me by cutting your naps short (or refuse them outright) when I am home? I know you nap better when Juniper is with you. Not only does she tell me about it, but this week when I was working at home I witnessed it first-hand.


• Thank you for - when you tumbled head-first down four steps, doing a complete somersault and landing on your bum - not getting all bruised and banged up. The fall alone scared the crap out of me, and reminded me that your desire to hold on to the railing while descending stairs, while charming in a "I can do this the big person style" kind of way, in no way indicates that you are actually ready to take on certain physical maneuvers. The upset (to your parents) caused by the spill you took later in the day, when you face planted after tripping off a single step, bruising both your forehead and your cheekbone, was only somewhat mediated by the fact that your papa was the one witnessing that fall, allowing me to not feel like I am the "bad" parent in this family.


• I am amazed that a full month after I abandoned my attempts to get you to say or sign "please," you suddenly started doing both. Were you just working on this as a special equinox surprise?


• Can you please explain why the previously enchanting bath no longer holds your rapt attention? You used to love every moment of the bath (ok, except for the moment where papa or I rinsed the soap out of your hair). When you sensed the end of the bath was near, you'd scootch as far as possible from our arms, responding to "are you ready to get out?" with a firm "no." Now you don't want to sit down in the water and after 45 seconds are declaring yourself "done, done, done" with the bath. How can it be that something that has amused and soothed you from your very earliest days is now annoying and even possibly a bit frightening? Have you been talking to Paul, who we know is a bit sensitive, and afraid of both fountains and the shiny floors of large chain grocery stores?


• You were so amazingly mature at bedtime on Sunday, allowing your papa and me to put you to bed at Avery's house. When you were done nursing I asked you if you were done. "Done" you said, pointing to the portable crib. I lay you in the bed and you were quiet and sweet. Although you cried after I left the room, it only lasted for 9 minutes, much less than the hour I had steeled myself to hear. And how nice it was to pick you up from the crib in order to take you home later that night. I volunteered to pick you up while your Papa grabbed the bags, knowing that I would get to enjoy your warmth and sweet smell for an extra moment late that night. Nursing you a bit before returning you to bed, I felt sad about how soon such moments will be over. Soon you will be weaned, and later you'll spurn my arms in favor of books and sticks and bongo drums. But not yet, thankfully not quite yet.
  

Love,
mama

For My Grandmother

HBM suggested people write about causes they believe in that are really doing something. I have chosen two organizations that may seem small and unimportant, what with war, poverty, disease and violence to worry about. But I want to highlight organizations that provided concrete and very needed help to someone I loved. But first some background (otherwise known as the "why we should give a shit" part of the post):

When my grandmother was 85, she was diagnosed with Amyotrophic lateral sclerosis (ALS, often called "Lou Gehrig's disease"). ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Essentially, it stops motor neurons from stimulating muscles, thus paralyzing the body bit by bit. My grandmother had always been an active, athletic woman. She was on a basketball team in the 1930s and was an avid golfer who liked to keep her handicap lower than her age. Suddenly she found it hard to move as she once had.

My grandmother had a form of ALS that starts by attacking the motor neurons controlling the muscles in the throat. The disease was very hard on my grandmother, as it progressively robbed her of the things she loved to do and the social connections she'd spent a lifetime nurturing. Initially she found it difficult to swallow. This meant she started to drool, which scared off some of her friends. They acted as if being around a person with ALS could somehow "infect" them with its unsightly symptoms. Problems swallowing also made it hard for my grandmother to eat. Like all members of my family, my grandmother loved food and loved to eat. The loss of mealtime was also hard because it kept her from social meals with friends.

As her muscles atrophied and died, my grandmother began slurring her words. This was again both a physical annoyance and a social loss. People in her social circle started to treat her as if she was mentally deteriorating, rather than just physically ill.

ALS does not affect a person's mental capability, something that is both good and a bit horrifying to contemplate. Being trapped in one's body, progressively less able to move or communicate but still completely aware of one's surroundings - it sounds like an episode of The Twilight Zone, doesn't it? My grandmother, always a good humored and lively woman, found herself unable to keep up in conversations. Either she struggled to get words understood, or resorted to writing her thoughts out. On numerous occasions I witnessed her friends get impatient with waiting for her written notes. They would ask a question, but not wait for the answer, moving on with the conversation as if she wasn't there. It was so hard to witness on my regular weekend visits. I could tell it was very dispiriting to my grandmother. But being my grandmother, she did not complain.

My grandmother did not complain about what she was losing to ALS, but she was clear about what she wanted; she wanted to stay in her home. Luckily, she lived in a one story house that she and my grandfather had bought in the early seventies. There was one step from the garage to the house, and the rest was flat. With a few changes (grab bars in the bathroom, removal of some rugs, rearranged shelves and drawers in the kitchen) she was able to stay in the home she loved. Being near the mementos of her life with my grandfather and surrounded by their books, art and photographs meant a lot to her. Eventually she agreed to have some help and hired a woman to assist with bathing, shopping and household cleaning.

My grandmother was also clear about what she did not want. As her form of ALS impacted her throat muscles first, she knew it would be only a matter of time before her difficulty swallowing and talking was compounded by breathing problems. Once she could not breathe on her own, a respiration would be required to keep her alive. This would limit my grandmother's world in a way that her other symptoms had not fully managed to. Although she did not want to die, my grandmother did not want to live constrained to her bed or the couch. Without leaving the house, she would have to rely on visitors who would surely dwindle once she could not speak at all. Talking on the phone would be out too. Without stimulation, was life worth living? For my grandmother, the answer was no. She decided that when she needed a ventilator, she would refuse it, even though that meant she would die.

When her breathing got increasingly labored, my mother was summoned to her mother's bedside. Within about a day of my mother's arrival, my grandmother passed away. It was not the horrible, gasping death we associate with asphyxiation. According to my mother it was much more peaceful, with my grandmother slipping away, her breathing and pulse stopping while my mother held her hand.

I loved my grandmother, her sense of humor and her sense of fashion. In her later years she favored the rhinestone-heavy shirts and bright colors many older women seem inexplicably attracted to. Lucky for me, she'd always been a clothes horse, and something of a packrat. When my family cleaned out her house, I found some gems. The brilliant blue chinese silk dress she'd had made to her measurements while on an around-the-world trip. A black three-quarter length coat with fur trim from the 50s. A brown knit cap of the style that just came back into fashion a few years ago. Plus boxes and boxes of hats. Her basement was filled with hat boxes. Amazing, beautiful hats that probably last saw the light of day in the 60s. I crammed as many as I could into my luggage, and now display them in the entrance to my house, along with a photo of my grandmother in her wedding gown and another of her, my mother and me on my wedding day.

Looking back at what I have written, I miss my grandmother and wish she had not missed meeting Ada. But I am also happy that her death was of her choosing. After several years of finding herself increasingly at the mercy of her body, my grandmother's death was the last thing she got to decide. My grandmother's life with ALS was not easy and I would not wish that fate on anyone. It was, however, better than it could have been, and this is thanks to the ALS Association and specifically my grandmother's local chapter. In addition to providing information and support, through the ALS Association my grandmother had access to an ALS-knowledgable nurse who acted as a case manager, following her care and ensuring that the physicians knew what care she was receiving, heard about drugs and treatments that can slow the disease's progress and were otherwise able to provide the best care to my grandmother. This nurse knew my grandmother and checked in with her regularly. With most of her family across the country, my grandmother relied on this nurse for so much, and she delivered. With my grandmother's consent, the nurse also kept in contact with my mother so that my mom knew what was going on with my grandmother's treatment and condition. And all of this was provided free to my grandmother.

When my grandmother was told she had six months to live, I doubted it could be true. But her deterioration in those last months was rapid, and I am so glad that I was able to fly out to visit her one last time before starting a new job in Oregon. Two weeks after I left, she died. Those last six months my grandmother had some additional help, in the form of hospice nurses. On frequent visits, those nurses made sure my grandmother was comfortable and safe. They checked on her physical and emotional health, and were the ones to alert my mother that she should come to Pennsylvania when the end looked imminent. In her final months, my grandmother was comforted and cared for by these nurses. Knowing people were checking on her and waiting to hear her out meant a lot to me.

You may never know someone with ALS, and I can't ask you to financially support an organization just because it helped someone I loved. But I can ask you to support this type of organization, that not only funds research on a disease, but supports and cares for individuals with a deadly condition. We all know someone in our life who has died from cancer, heart disease, alzheimer's. Support, with your time or your money, organizations that care for people who are sick. Without these organizations, the burden of illness is that much heavier on people who lose not only their physical autonomy and capability, but many of the social connections and joys of their previous lives.

As for hospice, this is something I support for both personal and political reasons. Yes, my grandmother was directly impacted by hospice. But hospice is also good public policy. Particularly in the United States, where we spend a disproportionate amount of money on care in the final months of a person's life, something must change. Just because we have technology does not mean it should be used in all cases. As my grandmother knew, technology can keep people alive for months and years. But the costs are both financial and surviving with greatly reduced quality of life. Allowing people to choose not to live under those conditions is both fiscally sound - using scarce resources on prevention and chronic care management can help many more people maintain health and quality of life over much longer periods - and allows people to more fully control their lives and their deaths.

Thanks for making it this far. As a granddaughter and a health policy nerd, I thank you.

Random quote and unrelated photo of the week

I cannot be alone in thinking it significant that models - whose job description might read: paragon - have somehow stopped being beautiful.

Guy Trebay
Fashion Diary: Look At Me, Look at Me. Please Look at Me.

oh, and speaking of look at me, some housekeeping: nonlineargirl.minti.com

Avast ye blog readers!

Dr. Stephanie reminded me that today is TALK LIKE A PIRATE DAY! How could I forget? Oh sorry, International Talk Like A Pirate Day.

In honor of this important occasion, I offer this bad joke:

A pirate walks into a bar with a steering wheel shoved down his pants.

The bartender asks: What's with the steering wheel?

The Pirate replies: Augh! It's driving me nuts!


I'm looking forward to this "holiday" a few years from now, when I can teach Ada the ever-pliable joke about the Pirate's favorite (insert item here). Pirate's favorite salad green? Arrrugula. Pirate's favorite vegetable? Arrrtichoke. Pirate's favorite holiday (besides this one)? Arrrbor day. You get the idea.

Oh, and how I know about Talk Like A Pirate Day? Stephanie (who knows all) sent me this photo:

My sister, my confidant?

My sister was in town recently. My sister is very important to me, and her visits can feel emotionally charged. It's weird how a sibling relationship can be both more and less intense than a "normal" friend relationship. There can be a closeness and history that is more intense than what is experienced with most friends. But there is also a tendency to treat a sibling with less care than one would another friend. As with a romantic relationship of long standing, so much is assumed.

When my sister visits I want to get as much focused time with her as possible, but know that other things will intervene. Ada takes a lot of energy and attention, my sister has friends in town she'd like to see, and this time much of the visit was taken up with a wedding that she, her fiance, my parents, Chris, Ada and I were attending. (Oh right, and that I officiated.) I recently wrote about feeling insecure about the ceremony, which I crafted for my close friends based on our conversations and my knowledge of them from many years of friendship. My sister's positive feedback was very important to me, in no small part because she is so smart and incisive. Knowing she liked the ceremony made me feel good about it in a way that, until we talked, I did not know I needed.

Despite my closeness with my sister, I held off on sharing the blog with her. I've been wanting to tell my sister about the blog but have been too big a weenie to do it. Really, how was I supposed to tell my younger, brilliant grad student, excellent writer sister that I'm writing publicly about my daughter's poop and my own petty frustrations? I can't believe I kept this a secret so long, but my fear of what she will think has kept me silent. I don't worry that she'll mock the blog to me, or even to our shared friends. I do worry that she'll mock it, that she'll think it is boring, or that the writing is bad. I already have this fear with other people. A college friend and his wife apparently check in once in a while. Both smart, funny people, those two. So I worry that they think I am ridiculous, but mostly I can deal with that. (It helps that I have incriminating photos of my friend from his less suave periods.) Another woman I know recently found the blog while searching for my friends' wedding site. Instead of worrying, I am just thrilled that she checks in once in a while. (Hi Kath!) I think it helps that I don't know her very well. Also, I can't wait for her next film to get finished, so I can tell you about it here.

But back to my sister. At first I thought I would tell her after I'd be writing here for six months. Then I thought I'd tell her when she came to visit for the wedding. But she came and left and I didn't mention the site. And now I have another reason to want to hold off, but it is the same reason I want to share with her. I decided I wanted to write about her, or really about our relationship. It feels wrong to get into that without telling her that I am writing about it, in public no less.

There are so many things I've want to talk to her about lately, including what for me is a difficult transition to knowing her partnered. I have always been able to command her time more fully during visits. Now she has a partner, soon to be spouse. Understandably, she loves him more than anyone. Although I barely know him, I can see how crazy she is for him, the extent to which her universe has shifted to accommodate his move to its center. I don't love him yet (how could I after only three visits?) but I love how much she loves him. But I am jealous, too. I am coming to terms with the fact that I things have changed, and not in a way that soothes my need for her attention and approval.

My sister had to face such a change when Chris and I got involved. Fifteen years ago, when she was 14, my sister met Chris. It was not an immediate bond. Now they get along well and even have an independent friendship of sorts, but I am sure it was an effort to deal with a changed relationship with her older sister.

I talked to my sister this weekend. After what feels like months of conversations about nothing, we talked about her visit and getting to know her with her guy. After an hour of talking, I finally admitted to the blog. (And I didn't even get to have 3 beers first) She asked a couple of polite questions. And we moved on.

It was a little anti-climactic, and a little disappointing that she didn't seem very interested. But that's ok, because I finally told her. The thing that had bothered me the most was feeling I was keeping something from her. Now that I've told her, I don't feel like I'm holding out on her. Much better for the relationship, and probably for the blog.

I ate what?

Big day on Tuesday. After sleeping through the first part of her new playgroup, Ada made an appearance and thoroughly enjoyed herself. Thrilling for both mama and baby was the handoff of FIVE bags of kid clothes and shoes. I'm fairly sure that Super Sugar Star's girls will be running around naked all winter, because we took So. Many. Clothes. (Thank you to such a generous mom!)

Photos from the aftermath of my attempts to organize the clothes while Ada ran around scattering tights, shoes and shirts around the living room.

Later in the day, Ada and I met Monkey Boy and Ellen for snacks and a walk in Forest Park. Ellen and I put the kids on our backs and walked up the trail for a ways before letting the short ones out to wander the path. Monkey Boy immediately saw his chance to escape his captors. After a couple of half-hearted glances at some rocks and twigs, he practically bolted.

Ada stuck her toes in the stream, got her pants muddy, and then tottered after Monkey Boy. She called his name the whole way, breathlessly laughing as she found herself further and further behind him on the rocky path. Recognizing that Ada's one year old legs would never help her catch Monkey Boy, I scooped her up and hustled her down the path towards the boy. (It really is amazing to me how much Ada loves Monkey Boy. I haven't had the heart to tell her that Monkey Boy has been seen hugging another girl at his preschool.)

Back at the car, I stripped off Ada's muddy pants and shoes and strapped her into the car. As we headed home, the girl devoured a peanut butter sandwich. Still hungry, Ada asked for crackers. I handed her a small bag of them and assumed all was well. When I turned around, I saw her working on a little project.


















I wish I'd gotten a really clear shot of her sticking crackers between her toes, but it is hard to watch your child and watch the road. When we got home I scooped up the strewn crackers and stuffed them back in the bag. I left Ada with Chris and headed out to grab our farm share. Realizing I was hungry, without thinking I dug into the little bag on the seat next to me. Halfway through my third cracker I realized what I was eating. Mmm, crackers with toe jam.

Random quote and unrelated photo of the week

Maybe in order to understand mankind, we have to look at the word itself. Mankind. Basically it's made up of two separate words - "mank" and "ind." What do these words mean? It's a mystery, and that's why so is mankind.

Jack Handey
Deeper Thoughts

The post in which insecurity almost gets the best of me

On Saturday I performed a wedding ceremony. Although I am an ordained minister, this ceremony did not require the blessing of the state. My friends Ellen and Jiro are already married (I performed their legal ceremony two years ago), but this was their wedding, their family and friends, white dress and black suit ceremony.

To prepare for the wedding, Ellen, Jiro, Chris and I did the obvious; we had dinner. We sat on their patio and talked about what Ellen and Jiro wanted in a wedding. I wrote the ceremony, practiced and prepared. When the processional music swelled, I welled up. (And under my breath, swore at myself. I thought I could last longer before I started to cry.) I read my part, prompted Ellen and Jiro for theirs, smiled, cried and and laughed.

During the ceremony, I felt good about what I was saying. I've had the experience, when giving talks and briefings, of hearing myself speak. You know that feeling where you hear yourself as if you are standing outside yourself? Usually when this happens I see myself and think that I am not making sense, that my words sound like gibberish. On Saturday I heard myself speak and felt thrilled - the sentences I'd worried over were coming out right, the meanings emphasized as I hoped, ideas clear and alive. It was one of those perfect moments, radiant and full of joy. The joy was for Ellen and Jiro, and for myself, for my ability to give them such a moment.

After the wedding I was a huge unsheathed nerve. I wanted to laugh and cry and drink gallons of water. I felt wonderful, but as more and more of the wedding guests approached me to say the ceremony was beautiful, that I'd done a good job, I started to lose my high. Instead of absorbing the praise and allowing it to further elevate my mood, it made me doubt how good the ceremony had actually been. Once the jangles wore off (and I'd had a gallon or two of water) I stopped thinking about the ceremony and got into the fun of the reception. The nagging worry held on a little over the next day or so, until my sister told me what she thought of the ceremony.

My sister is very analytic and smart. She's also a great writer whose opinion I value greatly. She said that she thought the ceremony was the most emotional one she'd ever attended. She said that my wedding had been more personally affecting, but as a ceremony this one had been the top. Her comments did for me what everyone else's had not. They brought me back to the joy. I hope I can keep it with me, because it feels wonderful right now.

You know a party is going well when people start fan-dancing

Headless Chicken, that's me

At work today I took a wee break to read I Obsess (the current Mother Of The Week over at Crazy Hip Blog Mamas) and noticed she had a perfect post. So I jumped over to Petroville to see who else I should check out this month. Um, apparently ME. The thoughtful and ceaselessly positive Mother-Woman nominated my post about my concerns that my human fountain status will scar my child. My heart skipped a beat. Thank you, Mo-Wo. From you that means a lot.

After a moment of shock, I turned into the proverbial headless chicken, clicking insanely as I thought: "I've got to email Mo-Wo to say thank you" "wait, I'll post something on my blog" "no, email, no..."

Deep breath. "Go back to work" was my eventual decision. But now at home I can smile and say: Thanks! It is nice to be thought well of. And check out this month's Perfect Post awards - I'm in amazing company.

Random Quote and Unrelated Photo of the Week

One student, taking a break, elaborated on the problem of holding on to traditions. "The trees," he said. "No one really agrees which one's which. The Tree of Sorrow was introduced to me as the Bodhisattva Tree. The tree at the end of field three is alternately called the Tree of Woe and the Tree of Sorrow. I'm in the Tree of Woe camp. The Tree of Sorrow and the Tree of Woe seem like names that could have been given because of the general loneliness factor, but I don't know."

Dana Goodyear
The Searchers: The fate of progressive education at Deep Springs College

Blog Epitaph

On a recent walk in the neighborhood I saw that I am not alone in being pushed to the open letter format to air grievances:



It is so my neighborhood to start a haiku blog to memorialize a dead hammock.


Oh, and as long as we are talking neighborhood signs, anyone seen Andy?