Saturday Late Afternoon Sanity Beach Trip

I asked Henry to come with me and Sophie to the beach for an hour or two around 4:30 this afternoon. O,K., I begged Henry to come with me and Sophie to the beach for an hour or two around 4:30 this afternoon. I was desperate to actually go in and under the water, have been feeling this deep craving to do so for weeks.

Even though he had no interest in going in himself, he obliged me and brought his lacrosse stick to practice what they call cradling.

It was a scorcher elsewhere in Los Angeles today -- in fact, I went into the deep dark valley earlier in the afternoon to pick up Sophie's cannabis oil, and my car thermometer read 105 degrees. The temperature at the beach in the late afternoon was about 80, though, and the water as warm as it gets here which is still refreshingly cold. I took Sophie for a walk along the edge of the water and then in to about our knees before bringing her back up to her stroller and Henry. Then I walked down past the lovers and the mothers and the children and one small man in a bicycle helmet and what can only be called a private-parts or -- let's be blunt -- penis holder whose fabric was the American flag. I surmised porn star, such was the area and -- uh, length -- of the flag (honestly, Henry and I could not get over it), and when he turned away, it was difficult not to notice the line of stars, perhaps twelve out of the glorious fifty, disappearing into his ass.

Anyhoo.

The surf was pretty high, but the water was clear and blue and I felt immediately refreshed and replenished. Thank you, southern California. Thank you, Ocean Park. Thank you, Pacific Ocean. Thank you, Henry.

Washing Up

I woke up heavy-hearted this morning, for obvious reasons. Go for a walk, a dear friend said. What right have I to bear a heavy heart? I wish I were religious, I said.

It feels like drowning sometimes, the silent sinking in to what is otherwise calm and blue, a surface that belies depth and darkness.

While dressing Sophie for school, I gathered her up like a baby in my arms, her long body curled on my lap. She looked into my eyes for a moment and gave me a shore.

Thoughts on Sibling Issues

I've been talking a lot lately to friends and colleagues about sibling issues -- not just the near-constant bickering and conflict between typical siblings (ahem) but the relationships forged between developmentally disabled persons and their siblings. From the moment both Henry and Oliver were pulled out of my watery womb and into the air, I was aware of the implications for them. For Sophie, of course, having siblings meant more love and more life around her. When people ask me how I got up the nerve to have another child, particularly as we never did know the reason for her seizures, I generally say that it was an impulsive decision and that I couldn't imagine anything otherwise. In my heart I held the thought that more children, more love for Sophie, more people to bear the burden of caring for her when I no longer can. Is this unfair? Perhaps it is, but I mitigated the thought with a firm resolve to not expect my sons to do anything for Sophie except love and accept her. I was also -- sometimes painfully -- aware of the enormous burdens that parents of children with disabilities sometimes place, unconsciously on their typical kids. I never wanted either son to feel "responsible" for making peace, for not adding to my stress, for "making me happy." Even so, I have seen subtle signs of these things in both my boys over the years and felt both panicked and despairing over them as well as matter-of-fact (it comes with the territory) and resigned. You can turn any virtue into a vice and vice versa. My boys are incredibly self-sufficient and they've also been neglected. They jump to help me when I need it, but they are sometimes resentful that they are called to do so far more often than their peers. They love their sister and hate her sometimes -- or at least the situation. They've learned to accept the sudden and disruptive changes in plans we're often forced to make but voiced their annoyance and resentment of those disruptions. I listen to it all and try to respond and not react. Yes, sometimes I want to scream at them that I'm doing the best I can, that they're spoiled and clueless and have no fucking idea how fortunate they are, but instead I stop and listen and repeat what they say. You're really angry that Sophie continually seizes during dinner. I am, too. I hate it sometimes. You're really pissed that we can't go on family vacations very easily, and I get that. It's a bummer, and I am so sorry about that. That I'm not perfect goes without saying, but that my boys aren't perfect either when it comes to compassion and feelings of benevolence toward their sister is also true. I am sometimes irked when people talk about the great compassion that siblings of the developmentally disabled learn at a young age, how special they are and all that jazz. Maybe I'm defensive about it because of some deep-seated fear that I've fucked it up -- this parenting of three wildly different individuals, one of whom is basically a perpetual infant in her needs. I think, though, that it bugs me because it's unrealistic and it, in some way, makes trivial the very real hardships that siblings face.

This is an ongoing conversation. I'd love to hear what you think.

Today

Today I'm going to forget about the fact that for the third morning in a row, our dog has thrown up in my bedroom in the wee hours of the morning. I'm going to count on the wisdom of the Buddhists who claim that nothing is permanent, even the darkest of moods, even seizures, even circumstance and inequality and injustice and stupidity. I won't despair. That also means that lightness and ease, seizure freedom, equality, justice and intelligence are not permanent states either. I will be grateful.

Fishing and Plumbing

All this waiting and talk of miracles makes me nervous, so let's bring it back down to the everyday.

I'm enjoying going back through photo albums, of which I have many, and especially as my boys get older and bigger and more -- let's say it -- teenagerish, I'm trying to remember what it was like back then -- in the olden days. Those two boys right there are growing up, and they're taxing me more than I can elaborate on the old blog. Let's say this, too: they don't kiss each other anymore, and their interaction with Sophie is minimal. I think about it every single day but write about it even less -- the toll the seizures have taken on those boys.

Wouldn't it be incredible if Sophie's seizures stopped? I said to Henry yesterday as we got ready for dinner. (By the way, she only had a scattering of seizures yesterday and was otherwise quite calm, if a bit sleepy.)

 I want her to talk, Henry said. He hasn't said that in a long time. When he was small, he wished on birthday cakes and threw coins into fountains with that wish. He whispered it into my ears and probably Santa's. During the first couple of years of Catholic school, when he got a bit Jesusy, he told me that he prayed every night that Sophie would talk. When she didn't talk, he told me that he didn't believe in God, and I told him that I understood but that we don't ever really know why things happen and why they don't. I don't know when the desire for her to talk or the wish that she'd be "normal," began to fade for him, but I imagine it's happened as subtly as he has grown up and away from the boy you see in that photo.

Do you want her to talk so that she seems more like a normal person? I asked him. Asking questions of a fifteen year old boy is like fishing or maybe even plumbing. You put the bait on the line and fling it out, far. Then you start reeling in, slowly, before you lose your concentration or nod off. When things get stuck, you need to put your hands on your hips, cock your head and just look around, first. There's no telling whether it's just stopped up from everyday stuff or there's something more insidious, like tree roots and dirt in the mainline. I can fish and plumb with line and snake.

Sort of, Henry answered. I really just want to know what she has to say.

About the marijuana? I asked, or whether the seizures bother her?

About everything, Henry answered. I want to know what she thinks about it all.

How We Do It: Part XXVII in a series

Be Yourself.

Life is precious as it is.

All the elements for your happiness are already here.

There is no need to run, strive, search or struggle.

Just Be.

Thich Nhat Hanh 

Saturday Night West Coast Re-Post

So, today is the great James Joyce's birthday, and there's a nice biographical homage to him over on The Writer's Almanac this morning with tidbits like this:

Joyce liked to drink and he liked to dance; his daughter-in-law said that "liquor went to his feet, not head. "Joyce usually sat with his legs crossed with the toe of one crossed again under the calf of the other. He was kind and generous to strangers, and he was known to invite waiters to join him at his table for food and drink. 

There's also a nice nod to the Irish writer on Brain Pickings with excerpts from a little-known children's book, The Cats of Copenhagen.

I've written about him here and there, highlighting some of my favorite passages from his short stories and books, so today's re-post will be one of those with one of my favorite photos of Sophie and Henry from 2010.

WEDNESDAY, DECEMBER 29, 2010

A Portrait of the the Artist

as a Young Man is certainly not one of my favorite books, but I remember a certain passage inside of it so well that it feels like yesterday when I first read it, or savored it or hung, suspended, in it. Today, in 1916, James Joyce published it, his first novel.

He was alone. He was unheeded, happy and near to the wild heart of life. He was alone and young and willful and wildhearted, alone amid a waste of wild air and brackish waters and the sea-harvest of shells and tangle and veiled grey sunlight and gayclad lightclad figures of children and girls and voices childish and girlish in the air.

A girl stood before him in midstream, alone and still, gazing out to sea. She seemed like one whom magic had changed into the likeness of a strange and beautiful seabird. Her long slender bare legs were delicate as a crane's and pure save where an emerald trail of seaweed had fashioned itself as a sign upon the flesh. Her thighs, fuller and soft-hued as ivory, were bared almost to the hips, where the white fringes of her drawers were like feathering of soft white down. Her slate-blue skirts were kilted boldly about her waist and dovetailed behind her. Her bosom was as a bird's, soft and slight, slight and soft as the breast of some dark-plumaged dove. But her long fair hair was girlish: and girlish, and touched with the wonder of mortal beauty, her face.

She was alone and still, gazing out to sea; and when she felt his presence and the worship of his eyes her eyes turned to him in quiet sufferance of his gaze, without shame or wantonness. Long, long she suffered his gaze, without shame or wantonness. Long, long she suffered his gaze and then quietly withdrew her eyes from his and bent them towards the stream, gently stirring the water with her foot hither and thither. The first faint noise of gently moving water broke the silence, low and faint and whispering, faint as the bells of sleep; hither and thither, hither and thither; and faint flame trembled on her cheek.

"Heavenly God!" cried Stephen's soul, in an outburst of profane joy.

Saturday Night West Coast Re-Post (I missed last week!)

Busy in South Carolina with my beloved college girlfriends, I completely forgot last week to continue my time-honored tradition of capping Saturday with a re-post from the old archives. I stumbled upon this one from that Link Within thingamajig below every post and just couldn't resist posting it. What strikes me as wild is how much Henry has grown in the past three years -- from little boy to man, really! On the other hand, Sophie seems nearly age-less -- she hasn't changed much in the last three or so years, and I don't actually know how I feel about that.

If you have a post that you'd like to re-post, please leave the link in the comments! I don't know how to do that linky thing, and when I looked up how to do it, I got agita, so let's just keep things unorthodox, shall we? I'd love to see what strikes your fancy on a Saturday afternoon (West Coast) or evening (East Coast) or beyond (the rest of the world).

FRIDAY, MAY 29, 2009

Sophie and Henry

Do we look alike? Henry asked tonight.

Yes, I said, you look like brother and sister.

I'm glad she's my sister, he added, and I say prayers that her seizures will stop and maybe she'll talk.

Summer Afternoon

Maybe she'll stop humming if I give her a taste of my chocolate shake.

Henry, Hamburger Hamlet

It takes a village.

This is Henry, holding Sophie's legs at the dentist. I'm sitting on a stool, torqued at an odd angle, holding down her hands and keeping her head straight so that the hygienist can clean her teeth.

Going to the dentist with Sophie ranks up there with going to the hospital  or dealing with a seizure in a public place as one of my very least favorite things to do. While Sophie doesn't mind having her mouth propped open or even the actual cleaning, she does struggle with the lying down part, and in order to do an effective job, the hygienist needs help keeping her head straight and her hands down. There's no adaptive chair at the dentist, and because I'm just so grateful that this particular dentist is incredibly sweet and good with her, treats her at all, actually (did you know that dental care for the disabled is something that is hard to find?) and works hard to not have to sedate her, I willingly bend my body into pretzel-like shapes to keep her in the chair and prevent her from folding her own legs up in her customary pretzel-like shape. This time I had Henry, though, who kneeled on the floor and kept one arm over her legs and played a video game all at the same time.


Am I lucky or what?

I read somewhere about a man and woman who went into their children's bedrooms at night and bowed, silently, to them. I thought of that last night when I tiptoed first into Sophie's room and saw her dark form curled away from me and then into the boys', their breathing full and loud, loudness stilled in sleep, finally. Still and silent, it felt natural to bow, deeply, at the waist, their breath mingling with the rest of the air in the room.

How We Do It: Part IV in an ongoing series

Sophie and Henry, 1999

When Sophie had a big seizure at breakfast this morning, like she does most mornings, I undid her seat-belt and tried to prevent her arms and legs from banging into the table. I gathered her, jerking, into my arms and sat in the seat myself and noticed that her bony limbs were cushioned by my soft, perhaps too soft but then again, maybe in a good way, soft hips and arms and breasts and that is what I thought about as I sat there, enclosing her, Henry tipping his blue and black baseball hat to me and stroking Sophie's leg with his own broad hands. I thought of bones and tissue, what knits the two together, the point of her elbow wedged into the soft curve of my breast, a hip sharp in my stomach, an extended leg stiff against my thigh. Her bones grew inside me and still, I hold them, awkward and tensed, articulate in the folds.

How We Do It -- Part I in an ongoing series

I've been immersed in the world of disability for over sixteen years, and while I feel old and ugly and slightly bitter and very, very edgy, I also feel confident, empowered and intolerant of bullshit. When you've watched tens of thousands of seizures, maneuvered a seizing child down a hallway in your arms, changed an adolescent's dirty diaper in an airplane bathroom (said adolescent standing between your own legs as you sit on the toilet), slept with an adolescent every single night in fear of/anticipation of the seizure that will cause her to stop breathing -- well -- the list goes on and on, you've pretty much figured out how to do the daily life stuff and you might even be a bit RIGID about your routines.

Sophie is out of school until after Labor Day, so she's hanging out -- all day -- with me and the boys. It's tempting to just stay at home all day because that's easiest and probably most comfortable for Sophie. Aside from the big trips to the beach and museums, the trips that you can plan for, pack the wheelchair, the diaper bag, the sippy cup of juice, the handkerchiefs for drool, the little errands are the ones that often seem insurmountable. It's a pain to fold up Sophie's wheelchair for a trip to the grocery store or a quick trip into the bank or the dry cleaner or any of the myriad errands I run on any given day. A typical child can come along for the ride, either stay in the car or traipse in and out with me. Even when the boys were babies it wasn't that difficult to hoist them on my hip and do my thing.

I had to get out and do a bunch of errands today and literally begged Henry to go along with me and Sophie. I needed him to sit in the car with her while I ran in and out, so I bribed him with a promise of lunch and we headed off to the cooking and bakeware store that also has a cafe. I didn't pack Sophie's wheelchair because I didn't feel like it, and I knew that a handicapped parking space was right in front of the store so if I needed to, I could leave Sophie in the car with the window open.

Cause that's how we do it.

When we got to the store, I helped Sophie out and then walked awkwardly through it with her and Henry. While he held the things I picked out -- cake boxes, a bottle of hard cider for The Husband, cannoli shells and a pastry bag -- I held Sophie's arm and simultaneously kept her from sitting down on the floor as we waited in line to purchase our things. Sophie began to hum and moan -- loudly -- and Henry raised his eyebrows at me and said, under his breath , Soph, come on, shhhh and so did I. I let her sit on the floor for a minute, her long gangly body with legs crossed at my feet, and used my legs to shield her head from hitting the side of the check-out counter, deflecting, at least in my mind the stares of the other people in line. Then I signed my credit slip, handed the bag to Henry and helped Sophie up to standing and then out the door, all the while pretending that her constant hum was completely and utterly not affecting me and I was in fact oblivious to it.


When I put her in the car, in the seat behind the driver because she throws her head to the right and that way she won't hit it on the window, I felt relief. I straightened my back and rolled my neck and unclenched my hands. I also told Henry to go inside the cafe and decide what he wanted. He would then come out and I would go in and order our food while he sat in the car with Sophie. When lunch was ready, I would bring it out to the car and sit in the backseat with Sophie to feed her. As we eat our lunches from our handicapped spot, we watch the people coming and going into the cafe, sitting outside on the patio, kids rocking back on their chairs, chairs scraping on the concrete. When Sophie is finished and I've eaten, I'll go back in the front seat and we can go. And if Henry isn't with me, I'll go inside myself, leave Sophie in her seat with the windows open. She is visible through the plate glass window and I always hope that people will see her and assume she's old enough to be alone in the car.

That's the way we do it.

Later, when Sophie has been dropped back off at home with the babysitter, Henry goes out with me to finish our errands.

He asks me, Do you think our lives would be better if Sophie were normal? 

I tell him that our lives would certainly be easier and then ramble into the musing about disability and unconditional love and how much we've learned and so on and so forth, until Henry interrupts me by saying that man, if Sophie were normal she'd probably hate me but at least she could drive.

What we need is

fewer seizures and more summer swinging

There's nothing like a brother