How to Maintain Your Non-Sports Identity at a Lacrosse Tournament:Day 2

Pull your old green hat low over your green sunglasses. Ignore the lady in the magenta track suit screaming, "Pick up the goddamn ball!" Glance fondly into your tote bag at the copies of The New Yorker you've brought along and pray you won't look pretentious reading them. Smile at your beautiful son who is playing his heart out.

What it's like to share a hotel room with a teenager

You get to sleep in until 10:30 in the morning.

The universe is abundant.

Saturday Three-Line Movie Review

Begin Again

It took a sold-out afternoon matinee of another movie that I really wanted to see and had driven too far to see, that propelled me toward buying a ticket to a movie with the ubiquitous Kiera Knightly (whose acting chops, in my opinion, are minimal and who has that irritating quality of seeming always to be projecting an aren't I a beautiful and thin Actor?).  The presence of Mark Ruffalo, one of my favorites, and Catherine Keener, who makes me glad to be middle-aged,  looked to be redemptive, so I plunged in and was delightfully surprised by this quiet and not-always predictable little gem of a movie. As a down and out alcoholic music producer who drives an old beater Jaguar and lives estranged from his wife, struggling to be a decent father to his almost-lost teenaged daughter, Mark Ruffalo's character gave me that weak-in-the-knees feeling, and even Kiera's reedy singing voice was charming enough that I was lost, lost, blessedly in other people's stories.





More 3-Line Movie Reviews

The ImmigrantChef
Cesar Chavez
The Grand Budapest Hotel
Gloria
Labor Day 
Philomena

August: Osage County

Her

American Hustle

Driving to a Lacrosse Tournament, So Here's a Prose Poem

Spell

Some fish for words from shore while others, lacking in such contemplative tact, like to go wading in up to their chins through a torrent of bone-freezing diamond, knife raised, to freeze-frame incarnadine and then bid it as with hermetic wand flow on again, ferociously, transparently, name writ in river.

Franz Wright
via Poetry, May 2012

How We Do It, Part XLVI : The Real Story

The Commons at Calabasas

I wasn't going to write about it, but I think I will. Yesterday, I had to drive out to Calabasas again for Henry's lacrosse practice. It takes at least an hour to get there, the practice is two hours long and there's another hour to drive back. Basically, I could drive to San Diego and back in that amount of time.

Oh, these kids. Our choices.

Last night, I had to take Sophie with me because I had no childcare. I planned on dropping Henry off and then taking Sophie to the fancy pants grocery store out there in Upper Middle Class Whiteurbia to feed her some dinner. We drove up the 101 and got there early, so I offered to buy Henry one of those coffee drinks from Starbucks. I pulled into a handicapped space and reached for my wallet. My purse wasn't there. It wasn't anywhere in the car, either. I had forgotten it at home, a careless mistake that, to tell you the truth, I rarely do. Honestly. I don't make careless mistakes very often. It's a personal strength. I can't believe I did that, I told Henry. I might be completely losing it! Henry said, What if you are losing it, Mom? I told him to be quiet and then we tried to figure out our options. Should I drop him off and then drive one hour home and then drive another hour back? No, obviously this was not an option. Should I just let Sophie not have any food for the next three hours? No, this could not be an option as she hadn't eaten since lunch. Should I go up to someone and tell them that I had a disabled kid in the car and no wallet or money on me, that she needed to eat, could they give us some cash? This made us laugh. Should I borrow some from one of Henry's coaches, whom I really don't know at all since he plays on a team that might as well be in a foreign country? Henry didn't like this idea, but I thought it was the best one, so I approached one of the coaches, told him my loopy story, gesturing to Sophie in the car, and he was kind enough to give me $20.

Are you still reading? If you want to go, that's fine. There's nothing really great that's going to happen.

I drove off with Sophie to search for a place to eat other than the fancy pants grocery store I'd taken her on Monday. While we drove around (have I ever told you that I have a horrible sense of direction and never go straight anywhere but am always turning around, backtracking, getting lost yet remaining fairly amiable while doing so?), Sophie had a giant seizure in the back seat. I glanced up in the rear-view mirror to keep tabs on her, but I couldn't change lanes or pull over and just had to helplessly make my mouth into a straight line of determination and periodically call out to Sophie that it's ok, it's ok, it's ok. When I finally found a place to pull into, she was finished and hanging limp and clammy in her seat. I looked around and saw that I had entered a fancy Upper Middle Class Whiturban outdoor shopping mall called The Commons, so I pulled into a handicapped spot, got out of the car, popped the trunk and hauled the wheelchair out of the back. I set it up and rolled it around, went to lift Sophie out of the car and realized that she was soaked through her pants. Her backpack was in the back of the car, and I'd already pulled her out of the car, so I lifted her up and put her back in the car and put the seatbelt on her so that she didn't fall out or try to get out. I retrieved the backpack and returned to her seat, unbuckled her, helped her to stand outside of the car and then gently lifted her back in and pushed her down so that she was lying down across the back seats. I wedged underneath her head an ice-cream sandwich pillow that just happened to be in the way back  (that I've probably told those boys of mine to remove from the car countless times, score one for them!), so her head wouldn't fall down in the space between the seats. Do I need to remind you that Sophie had just had a rather large tonic seizure and was in a sort of post-ictal state which, for her, means a lot of twitching and twisting?

Are you still reading? If you want to go, that's fine. There's nothing really great that's going to happen.

I had to pull off Sophie's shoes in order to get her pants off to change her and realized that she wasn't just wet (sometimes, during a seizure, the bowels just -- well -- empty). I also realized that I had forgotten to pack a change of clothes because I am indeed, perhaps losing it, but I did have diapers and wipes and after nineteen years of doing this sort of thing, even in an airplane bathroom (sitting on the toilet with her between my legs, removing a messy diaper), I managed to do it while preserving Sophie's dignity in the parking lot of a place called The Commons in Upper Middle Class Whiturbia (another reason why being not exactly thin comes in handy -- I make a pretty wide shield).

You're still here? I so appreciate your support and patience. I honestly don't have anything much more to report. I put Sophie's soaked pants back on her (with profuse apologies) and wheeled her to the nearest place to eat. Because I didn't have my purse with me, I clutched the borrowed $20 bill in my hand. Because I was out so deep into the valley, it was about 95 degrees with zero humidity, and I was feeling, at that point, a tad disheveled. My hair, too long, was sweaty and stringy, and I needed to clip it up, but I had no clip because I had no purse. My lips were cracked and dry, too, but I had no lipstick because I had no purse. It's amazing how many times I probably reach into my purse a day, pulling from its depths the essentials that I'd go so far as to say are life-affirming. Identity-revealing. Money, hair clips, lipstick. The accouterments of living a certain life in a certain country in a certain millennium. I'd almost feel like a cliche if there hadn't been that seizure, that changing a young adult's diaper in the back seat of a moderate-sized vehicle, that putting soaked pants back on the young adult, heaving her into a wheelchair and then rolling through a phalanx of staring individuals who couldn't possibly know the real story.

Writing, Witches, Wizards and Monkeys

I've felt strangely -- or not so strangely -- inhibited of late in writing, both online and offline. I'm not a tortured writer, and while I can sure write some drivel, when it's not drivel, it's because the act of writing is as if I am channeling some greater force. I don't even know what I'm doing when I do it, but there are no tears, no sweat, no need to feel agony or pain or complaint. It's not work. To get there, I don't need to cry or sweat or lift weights or complain, either. I am not a tortured writer, even in any wonderful romantic sense.

I've let some voices from the outside, though, creep into my head and inhibit me. They are stern and dismissive and condescending. They're like siblings who push sensitive buttons. When I texted this to my friend this morning, she texted me back that it was as if I had monkeys in my brain. That's it, exactly. I know what monkey brain is in meditation, but this is different. These guys have taken up residence in my brain -- or I've invited them in to stay. I need to kick them out, send them on their way.

Fly, monkeys! Fly!

Sophelia Bedelia, Bananarama Peelya, and a Charlotte's Web Side Effects Update

You hear a lot about the travails of being Sophie or of being her mother or siblings. You rarely hear about the plain old life of Sophie (other than seizures!), so I thought I would take a few photos of her this afternoon when she got off the bus from her summer school program, and I brought her back to her room. The Soph's universe is pretty contained, very padded and conducive to rest and relaxation with a sprinkling of things with which she loves to mess around. I told you the other day that she is free to roam around in her room, and other than occasionally banging her head on the only strip of wood not padded, she is safe to be alone. Lately, when she gets home in the early afternoon, she plays for a few minutes on the floor and then makes her way to the bed to take a nap. 

I realized today that she totally and completely positions herself into an appropriate sleeping position for really the first time in her life.  Another side effect of cannabis, I suppose! Increased purposeful activity! I took a few photos to share with you in sequence. I suppose a video would be more informational, but I started snapping these photos as they happened and think it's a pretty effective way of illustrating a small but huge change in how Sophie is living her life. They're a study of How Sophie Does It Now That She Doesn't Have Seizures All the Time.

(there's the strip of wood that she likes to bang her head on!)

Sophie's motor deficits include ineffective use of her arms and hands, but she has abs of steel, a core strength that probably rivals Madonna's. She maneuvers her way on to her bed in a way that belies motor planning disabilities, too.

I'm the sort of person who looks at the vastness of the universe and is comforted, rather than terrified, by my own smallness and relative insignificance. I've always told my boys that one of my dreams is to go up into the atmosphere in a rocket ship and look out a window at the Earth in space. I'm so drawn to astronauts' words of that experience, and this morning, when I read my friend, fellow writer and mother of a child with epilepsy, Christy Shake's post, I was inspired.

I feel at turns disgusted and terrified at the havoc wrought in the name of power, religion and territory in the Middle East. As the Hamas rockets fly and the Israeli bombs return, I deflect the insanity with a sort of bitter humor. That'll show 'em, I might mutter, when I read the leaders' threats. This show of force will surely be the end of all conflict. 

There's nothing new under the sun, is there? The Old Testament had it right, at least there.

I wonder if the Universe -- whatever force inherent in it -- looks at our beautiful blue and green globe and sees it as insignificant, just a speck in a vast continuum.

Aggravating Parenting Conundrums, Part 329

Notice the position of the dishwasher approximately two feet beyond the table upon which the remnants of a peanut butter sandwich, potato chips and a glass of milk lie.

Why?

Is there an invisible shock line drawn from here to there? Is it impossible to remember that one must clean up one's dirty plates upon completion? Does it make one weary beyond all weariness to walk toward the sink, turn on the tap, rinse the plate and place in the dishwasher? Is one saving the remnants for a later in the day nosh? Does one secretly love the sound of one's mother's voice, whether for remonstrance or praise?

Reader, please answer.

Bare Arms, Not Bear

The woman in the black cardigan is my Italian grandmother, and she's standing next to her sister outside of their ramshackle house in the small town of Cosenza in the Calabrian region of southern Italy. I imagine it's nearly 100 degrees outside despite the heavy clothing, but they're all protected from drafts, the kind of wind that grabs the neck and kills you if you're not careful. I have lately begun baring my arms after a period of many years. My attitude is a sort of screw it, I'm fifty years old and who the hell cares if they look like my Italian grandmother's? Covered or uncovered, my grandmother was a very strong person physically, if not mentally. Legend has it that she carried bags and bags of groceries for many blocks in New York City and then up many flights of stairs unassisted. I, too, have pretty decent upper arm strength which has come in handy with the disabled child, but my arms are just not cut in that sinewy way that comes from exercise or genetics. They look soft, and they are soft and their strength is buried deep, like the plastic king in the middle of the dough of a King Cake. How's that for metaphor? This summer I was inspired by a friend of mine at Expressing Motherhood who made an amusing video about baring one's arms, and for three days in a row I've worn three different outfits and bared my arms and am now crafting a post about the act.

That leads me to something a bit more substantial -- or should I say as substantial as my bared arms?

Anywho.

Last night, Cheryl Strayed, the mega author of Wild, posted an interesting article by Katie Roiphe on Facebook. Listen, I'm not really friends with Cheryl Strayed, I just "liked" her Facebook page, and every now and then I'll "like" what she posts along with tens of thousands of others. Roiphe's article was about the very hot (both literally and figuratively) Karl Ove Knausgaard's new series of memoirs that are slowly being translated into English. Her article basically proposes the question "what if a woman wrote it?" Knausgaard's memoir evidently outlines in minute detail his every personal struggle, including the minutia of his daily life as father. He talks about diapering his babies, I think (I haven't read it), along with philosophy and whatever else is going on in his life and mind. The books are a huge sensation. I want to read them, frankly. But, yes, what if a woman wrote it? Roiphe makes an amusing case that a Karla Ove Knausgaard would probably receive a far different response than her male counterpart were she to publish the same, and much of that negative response would come from women.

Generally, I'm beyond bored by things like the mommy wars and the work vs. nonwork stuff. I think the extreme parenting I've done has given me a sort of trump card that I admit to periodically over-using, but this article by Roiphe really struck me, particularly in the context of my own recently published ebook. Now, I'm not comparing myself to these fancy pants writers. I have a $2.99 ebook that is about 36 pages and covers roughly one and a half years of my life. I've gotten a great response to the book from people of all persuasions, and I've also gotten some criticism that I believe was considerate and worth absorbing. However, one person made the comment that she (a woman!) didn't see it as a book, really, for a literary community but rather as a "passionate article for a mother's community." I've been thinking about this statement for days, actually -- not in any obsessive, upset way but more in a curious, cud-chewing way. There's a tiny ding in that statement, a criticism not so much of my writing's literary quality (which is always arguable) but rather in the suggestion, however faint, that a mother's community holds nothing literary.

Like I said, I'm chewing on this quite placidly. With bare arms.

Highway Thoughts on Help and Stress

This morning I drove west to my annual OB/GYN appointment and blew my news blackout to listen to Morning Edition on NPR. They did a segment on stress and the effects of stress, how most stress reported has to do with chronic health issues -- people reporting that they themselves are ill or someone in their family is ill or needs help because of disability. I don't feel like looking up the link, but I'm sure you can google it on the interwebs and listen yourself, if you're so inclined. I nodded my head at all of it, of course, but was most struck by a statement about Americans' unique hesitancy to ask for help. Our culture is, of course, one of rugged individualism and self-sufficiency which is courageous and optimistic at best and selfish, unrealistic and downright sociopathic at worst.

As I crept westward on the 10, I mulled over this and was reminded of the video I made with Erika and Phil several years ago about extreme parenting. New readers here might not have seen this video, but in a nutshell, I asked people who care for children with disabilities or those who have lost children to disease to take a photo of themselves with a poster stating what they wish they could say to their younger selves on the day of their child's diagnosis. While I wish there had been more diversity represented in the finished video (I used what I got!), the responses were rich and varied. By far, though, the most common advice parents had for their younger selves was "Ask for help," and "Accept help." I think there's a little of that cultural thing going on here, for sure, and I also think there's some control stuff -- when your world is turned upside down, and you realize that we actually have very little control over our children's lives, you tend to control what you can, and at least for me, I might have thought (unconsciously) that what I could control, I'd do myself. Initially, doing it myself made me feel empowered, in control, in charge and confident. After a while, though, at least for me, I was exhausted, burnt out and incredulous that this caregiving was going to be forever. I won't even talk about what the effects on friendships, on relationships with family and even marriage have been because -- well -- that's no blog post. Despite the insanity, I rarely did ask for help or even accept it when offered. I'm being utterly honest here when I say that this might be one of my only few real regrets of my early years with Sophie (pushing more forcefully for full inclusion in school being the other one).

Just some thoughts as I ambled down the highway toward the paper gown that ties in the front and the speculum.

That being said, I thought I'd post the video here again so that you can watch it and perhaps share it, particularly with those who might be just now entering this strange, lonely, often hellish and overall wondrous world of extreme parenting.

A Stone, Rounded at the Corners, Still Hard

I put her old ugly pink helmet on yesterday afternoon and let Sophie walk around my room while I tidied it up. Despite her ability to walk and her love for doing so, she has next to no individual freedom to do it, to do what she most loves. Between possible seizures and the lack of cognitive ability to recognize danger or navigate, she just isn't safe except in her own tiny room that is padded or on a vast, softer surface like the beach or a grassy field.

This is one of those things that I absolutely do not, have not and cannot get used to and that needles me and that hurts my heart. Literally. I know that the more we push away our uncomfortable feelings, the stronger they are, and perhaps this is why after nineteen years I am no closer to accepting the fact that we can't let Sophie roam around where and when she desires. I push it away, I push it away and it sits there, hard and sore to the touch, perhaps emblematic of all the grief I carry. I am resigned to the fact that I will probably always have to pay someone to take her out for a walk. That's the stone, rounded at the corners, but still hard.

Intimidating Words, Part One

re·duc·tive

riˈdəktiv/

adjective

1. 1.

   tending to present a subject or problem in a simplified form, especially one viewed as crude.

   "such a conclusion by itself would be reductive"

This will be the first in a series of posts about words that I find intimidating, words that I've read over and over again and have heard in conversation but can never quite wrap my head around. They are words that confuse me, that I mix up with other words, that I stumble over, that I find pretentious or obtuse. I've been compiling a list for the last several weeks but am inspired to start this list today as I continue to muse over and wonder about the sentences strung together by Anonymous as comments on my last blog post. I have a good idea who this person is, and while I at first thought it was someone in the medical field, I am now pretty certain that Anonymous is a writer. Anonymous inspired me this morning not so much to write a better book but to add the following phrase to my list:

post hoc, ergo propter hoc

phrase of post hoc

1. 1.

   after this, therefore resulting from it: used to indicate that a causal relationship has erroneously been assumed from a merely sequential one.

I should let it be known that Latin phrases always intimidate me, particularly the over-used ones. I go into a mild state of panic every time I hear quid pro quo, for instance. The above Phrase of Intimidation, though, is interesting because, according to Anonymous, I've ignored my conflict about Sophie's vaccinations and whether or not they had some role in her seizure disorder in my writing, at least in the mini-memoir recently published which makes it lack focus or direction. On top of that, according to Anonymous, I am afraid that writing through that will somehow link me to Jenny McCarthy and thus alienate readers. Poor Jenny McCarthy. According to our pediatrician, she is actually a very nice person. I have found the use of her as ground zero for the vaccination conflict interminably boring, maybe even reductive.

Anyhoo. Anonymous comments really get my goat. Maybe that's because if I have something to say, I want to own it with my name and my face. I think Anonymous' points were good ones, and I hope to always be the sort of person who even while flinching can learn from criticism. I am grateful, though, mainly to have been able to combine this long-planned blog series with Anonymous' comments from yesterday. What would I call that? Serendipity? Synchronicity? Making the best out of condescension? 

If there's a Latin phrase for it, please do tell.

Reader, are there any words that you find intimidating?

I kissed my boy good-bye this morning and sent him off to camp for two weeks. Then I drove home with tears in my eyes because, really, he is literally the life force in our family. Oliver is difficult in a myriad of ways, but his difficulties are fantastic, really. I honestly don't know who I'd be without these kids of mine -- each of them in their own unique way -- but I'm certain I wouldn't be better.