Special Knees

I am in Hilton Head, South Carolina for the next two weeks, visiting my extended family. We all meet here once a year, usually the last week or so of July -- my two sisters, their husbands, their children and my parents. There are seventeen of us in all -- eight adults and nine children that range in age from 14 down to 2. We all stay in the same house and despite a minimum of space and a maximum of chaos, get along for the most part. There's usually a little fighting, a lot of laughing and next to no real relaxation. For the first few days or so, I hate it. I hate the noise and the stress of being with family -- somehow we all say the absolutely wrong thing at the wrong time to each other. At first, it seems, only the kids run around joyfully, happy to see each other and eager to carry on memories from the previous summer. There's always a little fighting with them as well and tears and complaints and tattling, but for the most part they get along.

But as we slowly get adjusted to each other and figure out who goes to the store and who fixes what lunches and what dinners, things get better. I realize that my mood is sometimes governed purely by how Sophie is doing.

Part of my own initial dread of this "vacation," is bringing Sophie along. It's a rare summer that she does "well," and by "well," I mean sleeps and doesn't have seizures. Traveling across the country is hard on her, but she loves the beach and I've stubbornly wanted her to be a real part of things. She IS a real part of things -- it just has to be sort of enforced. Because of the way the house is set up, there is no real safe place for her to be -- lots of hard, Mexican tile and scratchy seagrass floor coverings. We're nervous to let her walk around, in case she stumbles and falls or has a big seizure. We have to sleep with her at night so that she doesn't get or fall out of bed. But I'm making a long story short. Lots of family and the life sort of swirls around Sophie who sits in her stroller/wheelchair, in the middle of it all but not really. The other eight children run by her out to the pool. They open and close the freezer and grab ice and popsicles. Sophie sits and hums and watches. The younger children are still getting used to her. They circle her warily, unsure what to think of this large girl who sits in a stroller and hums.

Claudia, my youngest niece, is five years old and has a Louise Brooks bob and enormous brown eyes under the fringe of bangs. She already has a quirky sense of style and tends to throw on mismatched clothes that actually look good together. She grabs pieces of fabric and wraps them around her head or puts on her mother's sunglasses and pokes her hair behind her ears. Right now she is noticeably curious about Sophie. She and I walked alone down to the beach this morning, and as we strolled under the canopy of fir trees on the path, she kicked the pine straw and asked me, slyly, "Why is Sophie still sleeping?" When I told her that Sophie had a particularly hard night, that she hadn't slept because she'd had a big seizure, she asked, "What's that?" So I gave her my stock explanation of what a seizure is, tailored for a five year old -- that Sophie's brain didn't work properly sometimes and that she had a hard time learning things. I told her that Sophie couldn't talk but she could understand a lot, so it was important to pay attention to her.

Claudia said, "Why can she understand but not talk?" I don't remember how I answered this, but I know that I went on to talk about Sophie's special needs. I told her that we all had needs but that Sophie had special needs. I asked her whether she had any children in her school that had special needs and she said no. We walked a little bit further and then she stopped. Her head tilted a little and she looked up at me, a brown-eyed sprite in a sagging little-girl bikini. She lifted up one brown, knobby knee.

"But why," she said, "can Sophie walk even though she has special knees?"

Chinese Medicine

When I go more than two weeks or so without Dr. Jin and her needles and Chinese herbs, I can really feel it. I feel it in my bones, I feel it in my sleep, I feel it when I snap at my husband and the kids. I feel it when I watch Sophie have seizures. What I feel is bad, really bad. So, I went back to Dr. Jin today for acupuncture, a tune-up, something or anything to make me feel better. When I got there she took my pulse and looked at my tongue. She asked me how I was and when I said, "irritable," she told me that I had too much heat. Or was it spleen? In any case, I lay down on the table and while we talked about her ancient parents in China and various other things, she pushed down on spots all over my head right before sticking the needles in.

"Hurt?" she said, while pressing so hard on my scalp I winced.
"Hurt here," she answered for me, and the needle went in.

This went on for a few minutes before she moved to my legs and then arms. I hate needles in my arms and hands. It hurts in a numbing, buzzing way, initially shooting through my body. I tensed up right before she pushed on the spots and yelped when the needles went in.

"OOO, sorry," she said, "take out?" For some reason, I don't tell her to take them out because there's an implication that if it hurts it's good for you. Something about that channel being stuck and opening. If it's all about stress and releasing it, letting it go, curing it, I'm for it. So I wince and deal with it. Eventually, the buzzing stops, and if I remain perfectly still it stops hurting all together. Sometimes, like today, I feel the prick of tears and it seems like they're coming from my brain and resting in my throat.

When she's done putting the needles in, Dr. Jin always asks me whether I want music. I do want music, the faint, calm tonal music that reminds me of waitressing in a Chinese restaurant during college. Dr. Jin turns the tape on and slides a buzzer under my hand in case I need her. Then she slips out the door saying, "I come back. Relax." And that's what I do for the next twenty minutes. I relax. I think about the needles and I listen to the music. I remind myself of the Chinese restaurant and the waiter who was in love with me. Although Chinese, his name was Jackson, and one day he came to work with permed hair. He said to me, "For your eyes only," and when I told him that his hair looked nice, he said, "you have eyes like James Bond girl. For your eyes only." I always remember this when I lie on the table in Dr. Jin's office and listen to the music. It makes me feel peaceful, like I don't have any problems. Sometimes I drift off to sleep and only wake when the tape clicks off and Dr. Jin quietly opens the door and comes inside. She takes out the needles and we chat quietly, comfortable with each other.

I sit back down on the little couch and write her a check. She hands me a plastic grocery bag full of little apples from one of her trees. I bend my face to them and inhale. The smell is flowery, as much like an apple as one could imagine. We hug each other and say good-bye.

Boot Camp

I'm going to try tomorrow to get up at 5:30 and go to boot camp. After a two-year hiatus, I've started going to the 6 am class at the La Brea Tarpits. I did this insane exercise class several years ago for about three years. Three times a week, rain or shine, cold or hot, I'd get up at 5:30 in the morning and go exercise outside with a group of strangers. We're led by a former Marine and his wife, both beautiful specimens of humanity, the picture of health and fitness. They don't shout at us or anything, but the exercising is pretty traditional: running, jumping jacks, sit-ups, push-ups, interval drills, weight training. During the winter, you get there when it's still dark outside and watch the moon go down and the sun rise. You lie on your back in the wet grass and it's beautiful. It's literally the only exercise program that I've ever done in my life and enjoyed. Most of the time. But I haven't been in over two years, and it's damn hard getting up that early. Especially in the summer when I don't have to wake up with the kids to get them ready for school.

When my alarm went off this morning at 5:30, I lay there for about five minutes, internally debating whether or not I should go. My thoughts went like this:

Get up. I need to exercise. I need sleep, too. Get up. I need exercise. It'll feel good to close my eyes and relax. It's just as good to sleep as to exercise. I'll regret not going. What if I don't get up and can't fall back asleep? Then it'll be a real waste of time.But what if I go back to sleep. I can sleep for another two hours this morning.

And so on, until it was, indeed, too late to get up and go. I lay there in bed, then, AWAKE, and thought about getting up and perhaps turning on the computer. I could write a little, work on getting the memoir into shape for the prospective agent who has asked for it. Or maybe make coffee and meditate for a few minutes. Or maybe just try harder to fall asleep.

I fell asleep. And had those early morning dreams, intense and colorful. Something with planes and Sophie and anxiety. I woke up groggy a couple of hours later, pissed that I hadn't exercised.

So I'm setting my alarm again tonight and I'm going to Boot Camp tomorrow.

Impossibility

My dear friend Jody called me yesterday with an update about her daughter Lueza who has been in pediatric intensive care for over a week. Lueza has severe cerebral palsy and is susceptible to pneumonia -- and it's difficult for her to get well. Despite being locked into a body that doesn't function well or at all right now, her heart beats strong and she has managed to smile through the tubes and masks and twisted position where she lies in a hospital bed. Jody and her husband have to make a horrific decision whether to put a trach in Lueza and it might be the only thing that'll save her. Jody called me and said, "In thirteen years, I've always known at a gut level what to do for Lueza. I have always known what's right for her. I don't know what to do." I'm not sure what I said but I know I just listened to her explain the situation and I was mainly conscious of listening -- wanting to interrupt and ask questions but trying really hard to just listen. I don't have an opinion, here, I wanted to say and finally felt relieved when she asked me whether I would throw the I Ching with her. Over the phone.

I recently had an article published in the magazine "Spirituality and Health," and in the article discussed when I had actually consulted this ancient oracle. Lest you think I'm insane, the edition that I have is introduced by none other than Carl Jung which sort of gives it validity. But with anything esoteric, I tend toward belief, and the notion of synchronicity, which the I Ching illustrates, is pretty powerful.

Back to Jody. I have three special pennies that I keep for throwing, and I only throw the I Ching for serious decision-making. Jody said she does as well. I won't go into what question we asked and what answer we received. This is all about life and death and the quality of life and what makes a life and what makes a life worthwhile.

Today, another friend with a daughter the same age as Sophie also called. Her daughter, like Sophie, has a severe seizure disorder that is uncontrolled by medication. Unlike Sophie, though, Morgan's seizures make her turn blue and she is often resuscitated by her overnight nurse. This has gone on for over thirteen years and during those years, Morgan's development has been severely compromised. When I told Susan about Jody's daughter and the difficult decisions she faces, Susan replied with her own horror story. It seems that the neurologist they take Morgan to recently asked them what her quality of life was like in the day. I think it went sort of like this:

"If you need the nurses at night to basically save Morgan, what sort of life are you saving?"

I felt ice rise from my stomach to my throat. The beginnings of anger at a physician's audacity. Strangely, though, this wasn't Susan's concern. She spent the next ten minutes or so railing about just how poor Morgan's "quality of life" really was -- she doesn't smile or get excited about anything; her cognitive abilities are unknown and her social life is increasingly constrained. Morgan is thirteen years old and has been included in a general education classroom for years. Susan said that this is the first year of middle school, and Morgan has no friends for the first time. It seems that adolescents find it harder to befriend her. No surprise. Why my icey reaction? I think, perhaps, that it has to do with the projection of what quality of life is. I tried to explain to her that barring real, physical suffering, who was to say what Morgan thought of her own life. Does normal cognition presuppose validity? Who are we to project our notions of what is normal, what is valid, what is human?

This is the sort of impossible conundrum that we parents of special needs children face. What makes a life?

I like to think that Sophie is world unto herself. In the same way that my "typical" children are. I realize that there might be some sort of denial going on, but who is to say what makes a life worthwhile? She is alive and that is good and beautiful. As parents of special needs children we live with the sinking feeling that we might outlive them. And that is supposed to be better than the alternative. There is no way to properly feel this, think about this, live with this. We just do our best.

So, those were the two conversations I had in less than 24 hours. There was no one to tell about them -- we keep to ourselves because who, really would understand?

Special Needs Strain

I'm worn out, tonight. I'm feeling the strain of Sophie. She slept all morning and then woke and had a huge cluster of seizures. Her palms and feet were wet with sweat-- I'm not sure what it means other than her hormones are completely out of balance. I think I'm on to something with the hormone cycles and the seizures but I'm also back at the space where no one is in the driver seat. Or, rather, I'm in the driver seat. What to do? Who can help? Who has the ideas? This is always the way it is with Sophie's seizures -- the visit last week to the new neurologist, while pleasant, was completely useless. Here's the thing: Sophie's seizures are following my own hormonal cycle in an almost perfect synchronized way. Twice a month she has a "bad" couple of days which are then followed by a couple of peaceful weeks. Anyway, today she had this huge cluster of seizures and went back to sleep for basically the rest of the afternoon. I was sort of relieved to not have to do anything with her -- she slept peacefully in her room until late afternoon. Then she woke up, and the whole thing started up again. Michael and I went back and forth on whether or not to give Diastat (rectal valium). Michael hates it because it makes her groggy for about a week. I sort of hate it but also think that Sophie needs a break. From the seizures. But then I wonder whether it's just me that needs the break -- from the seizures. Maybe I should take the rectal Valium? We didn't give her the valium and she eventually quit seizing, had dinner and is now asleep again in her room. Sigh.

Surf Camp

I dropped my two boys off this morning in Manhattan Beach for another day of Surf Camp. The sky was gray at 9am and the water blue, but their faces were radiant when they ran from me toward the beach, their thin bodies encased in equally thin rash guard shirts and flowered swim trunks. I decided to stay a little and watch, hanging over the rail at the parking lot, the stream of surfers and joggers and dog walkers. After a half an hour or so, the sun had come out and glinted off the water. The surfers were black bobbing knife edges in the blue and my boys were sitting in the sand with the other campers. They were meditating and doing some yoga, one of the reasons that I'd enthusiastically signed them up for the camp. When I told my father that the boys were going off to surf camp this week he said, "Great, they'll grow up and have long hair and do nothing." I didn't tell him about the meditation.

The truth is that I'm about as East Coast as you can get. I love urban life -- the food, the movies, the black clothes, the grittiness of it all. I never loved a place more than New York City when I lived there through the 90s. I'm not an athlete and have never had the remotest interest in sports. That was until we moved out to Los Angeles and I became if not obsessed than certainly acutely interested in surfers and surfing. I am a bookworm and a self-confessed literary snob and have never played any sports, but if I could have another life, this is what it would be. I'd not think about much at all and if I did, it'd be about the waves and the morning and the feel of the water and where I was in it. I'd wear a bikini and put on my wetsuit right by my Volkswagon van. I'd walk down to the ocean with my board and then I'd just paddle out and wait for the perfect wave.

I haven't done any of it yet, though, and fancy some sort of girls' surfing party when I turn forty-five this year. In the meantime, it's not without envy that I stand here and watch the rituals of the morning surfers at the 45th Street lifeguard tower. There's an impossibly good-looking young guy waxing his board to my right and an old man with a wrinkled, sagging wetsuit walks by me, board on his shoulder. The man next to me at the rail just got a hip replacement and has a head of shockingly white hair, but he's complaining that he can't surf for another month. I'm a middle-aged woman with plum-colored Wayfarers, watching her two boys grow up in the southern California sun. Who knows -- growing up with long hair and doing nothing might not be too bad after all.

I'm a literary contest winner

The ironic thing is that I'm not really sure of the worth of the contest. I entered New Milleniums short, short story contest a few months ago with a piece called "Wheelchair Tenant." Today I got an email from the journal, congratulating me on winning an Honorable Mention. I'm so new to all this online literary stuff that I don't know whether to be happy, proud or embarrassed. Here's the email text:

Congratulations on Your Award
in New Millennium Writings...

July 7, 2008

Dear Elizabeth,

Congratulations on your Honorable Mention Award for your fine story that opens, "The bright red Humvee pulls up..." in the New Millennium Writings Short-Short Story competition that closed Jan. 31, 2008. Your name will be included on the Awards page of our next issue of New Millennium Writings, 2008-09 and already appears at www.newmillenniumwritings.com, along with other winners of our 25th Consecutive Awards. The winners and runners-up, including your entry, were selected from about 1,400 total submissions in four categories. The quality was high, and you should be proud of your accomplishment. We are.

Spacefight Lemonade Cool Shark RIP

So, after writing about some beautiful poetry in my last blog, I have a more mundane story to tell. Our beta fish, Spacefight Lemonade Cool Shark (yes, that was his name) died the other day after many, many years on the planet. Literally. He was over five years old, closer to six, we think. He lived for most of those years in a faux space capsule tank that had a plastic rocket and a moonscape inside. Spacefight was blue with a tinge of red on his fin and he swam round in circles all those years despite an often filthy environment and minimal food.

My sons Henry and Oliver only changed the water in his bowl when I begged them to, and even then it was an ordeal. Both wanted to do the actual catching of the fish in the green net but neither wanted to clean out the stinky bowl. As I was saying, though, we found Spacefight floating the other afternoon, so I gave the boys a choice to either flush or bury him. They chose a funeral and for about a half an hour or so, I heard them going into and out of the house. They dug a small hole in the back of the garden, dumped Spacefight in with the technicolor green rocks that lay at the bottom of the bowl and then topped him off with some dirt and a good-sized rock that had his name written in Sharpie on the top.

Oliver threw some flower petals on the grave and they somberly stood over it. They were both weeping, and when I put my arms around each of their thin shoulders, they leaned into me, their heads sweaty against my bare arms. Henry, who will be ten years old next month, cried into my shoulder, "We said a few prayers for him, Mom, and then Oliver and I remembered the good times we had with him."

I tried not to smile and asked, "What sort of good times did you remember?"

"You know, when we'd change the water and then Spacefight would swim around so happy in his clean water," Henry sobbed. Oliver who is seven and the fiercer of the two didn't have anything to say. He just wept and I patted their backs and thought how ironic it was that they were so moved and touched to cry like that at a fish's death. Here they live with a sister who though older than they can't talk or do anything with them other than watch their antics; they've witnessed hundreds if not thousands of her seizures, yet for the boys, I'm not sure her life is the tragedy that was the fish's death.