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.

Contradictions in a day

I went to the grocery store early this morning feeling overwhelmed about nearly everything. I sat in my car and did a ten minute meditation, a prayer for mercy, for light, for wisdom. I know there shouldn't be a for when you meditate, but it was the best I could do. When I walked into the store, that very good looking and sort of ugly actor with the diabolical name who stars in Homeland walked out. At least I think it was him. And when I got home, this car was parked in front of my house. Fantasies abound.

I had to take Sophie to the orthopedist this afternoon for a general exam and to get authorization for those $1500 orthotics. The orthopedist's office is in Santa Monica, along Wilshire, and it took me nearly forty-five minutes to travel about six miles west for a $140,  fifteen minute appointment that included a hip x-ray, and then I was back in the car, heading east to pick up the boys at their school in Koreatown which took more than an hour. Sophie hummed the entire way. But, Sophie's hips and spine looked perfect, said the orthopedist, so there's that. And I listened to Gone Girl in the car the entire ride despite the fact that it was wildly inappropriate for Sophie's ears. Or maybe not, given that she is nearly eighteen years old (good god almighty!).

$1500 Orthotics in Tom's

I argued with Henry on the phone, begging him to get a ride home. He is The Student Body President and needed to stay at school to help prepare for the winter dance this Friday which meant that after driving for over two hours (to Santa Monica and then Koreatown and then home), I'd have to go back out to pick him up. He got a ride home. Here's a random photo of Henry, a repeat of the other day, because it makes me laugh so hard. I love him, even if he does think of me as The Chauffeur.

I got home, unloaded the car of Sophie and her wheelchair and Oliver and his backpack and listened politely to The Man Up the Street who was inquiring about the boys who were ding-dong ditching just then at his house. It wasn't my boys, I said politely, We just got home. I pushed the wheelchair and cleared my throat. I brought Sophie inside and thought how much I'd like to forego dinner and just drink some Newton's Folly. Have ya'll tried that?

Holiday Concerts, Mariah Carey, Flourishes, Morality and Handicapped Placards

So, last night I attended Henry's winter wonderland music concert. The performances were outstanding, and the musical talent at our little charter middle school is so great as to make one's mouth hang open in admiration. Henry, though, is not a boy of musical talent or even persuasion. He only "performed" as part of the chorus, and that was mandatory. What I didn't know is that a quartet of provocative and seriously talented chanteuses in the seventh grade had enticed him into a small role in their performance of "All I Want for Christmas is You."
Remember that song?



Help me Rhonda for posting a Mariah Carey video -- not my favorite (let's just say you won't see this video posted as a Carol of the Day, either), but it goes with the story, so humor me. And Mariah.

Anyhoo. Guess who the YOU was in the song?

Henry, my very handsome, effortlessly self-possessed and sweet boy, gave the singing chanteuse a little swagger (as part of the act) when she reached out her operatic arms toward him in the final line and walked off the stage. Everyone chuckled in the audience and then clapped wildly at the talent of the girls' voices -- which were amazing. I have to say that it's both thrilling and bewildering to have this beautiful son who, apparently, is a bit of a chick magnet and is also at ease with being one -- so at ease that he can perform in a musical performance without opening his mouth to sing. As one of my friends noted, Henry was the exploited and objectified male beefcake in the performance. It's thrilling and bewildering because in the seventh grade I was outrageously awkward -- let's say even ugly. I was painfully skinny (those were the days), wore big metal braces on my teeth and goggle glasses with rose-tinted lenses. My hair was short and curling-ironed into hideous "wings" that made me look more like Chachi  from Happy Days than Farrah Fawcett. I was a brainy, non-athletic, Carpenters and John Denver-loving geek. And as those of you who know, this is something that one never forgets or gets over. So, when I look at Henry I feel at once thrilled and bewildered. Where did he come from? Who made this kid? Certainly not me or my efforts!

Anywho. On to the next concert, which was Oliver's, this morning.

We had a rough morning here -- the usual and the not so usual. I was alone with all three kiddos and not at my best. I still can't really talk, so I can't yell, and everyone was running late and no one seemed appreciative of the fact that I'd made approximately twenty loaves of pumpkin chocolate chip bread and wrapped each one individually for teachers and aides and I'd also put hundreds of chocolate kisses into little cellophane bags for teachers and aides and therapists (O.K., I wasn't expecting Sophie to be appreciative); I'd toasted some bagels for breakfast and was marshaling lunches and so forth and then somewhere in the chaos, I fell apart (maybe it was when Oliver appeared twenty minutes after I'd woken him in an outfit that made him look like a homeless person). Reader, I broke down and croaked out my displeasure and then I cried.

I'll skip forward to dropping Sophie off at school and then racing to Oliver's school to make the concert on time and his performance. I circled and circled his school, looking for a parking spot. I drove through the school parking lot and gazed longingly at the handicapped space, empty. I told myself that no, I wouldn't exploit the placard and use it. I did this for fifteen minutes. I did not use the handicapped placard and eventually found a spot for my car and ran into the school yard.

I missed Oliver's performance.

Lest you believe me to be a highly moral person, I will tell you that in the melee of the elementary school winter wonderland concert, Oliver had no idea that I wasn't there. I asked his teacher what he'd done, and she told me that he recited something and had a nice flourish at the end. When I finally saw Oliver in the crowd, I leaned over and told him how proud I was of him, how well he had done, and how much I had enjoyed his flourish at the end.


Reader, I didn't use my handicapped placard but I lied to my son.

When I told my friend S this story this morning, herself the mother of a child with disabilities, she told me that if she had the placard and she was me she would be sunbathing on the roof of the car in that handicapped space with chocolate and wine in her hand. 


I'm going to think about that for next time.

It doesn't look like it, but that's me

on the end. I'm good, right? A friend remarked that it's been a bit quiet around here on a moon, worn as if it had been a shell. Other than the carols I've posted daily and a few photos here and there, I haven't had much to say. But, as you can imagine, life goes on and it's a tad insane right now. From Friday to Monday, I made three cakes and four dozen cupcakes (each one decorated). I decorated the house and a Christmas tree; I spent time with my mother who was visiting from Atlanta; I finished up my slides for tomorrow's webinar on Epilepsy and Adolescence (have you registered? it's not too late!); I helped both sons with school projects and went to the grocery store about five times; I took Henry to his final baseball game on Sunday and sat through the pizza party afterward; I drove everyone to school because the carpool guy was sick; I went to acupuncture, thank God, and visited The Husband and The Mistress for lunch with my mother; I picked up one child and waited for the other to get off the bus and then picked up the third from his after-school post-season flag football party; I massaged olive oil into one son's head after reading online that the white patches and scabs were probably dermatitis seborrhea or something like that, and then I combed through the flakes and scabs and instructed him to go take a shower and wash it all out; I made Trader Joe's chicken chow mein for dinner (thank you Trader Joe's); lowered Sophie to the kitchen floor while she had a huge seizure and then picked her up and sat with her on the couch until she felt better. I baked some more cupcakes -- vanilla with vanilla frosting, white sparkly sprinkles and Hanukkah stars -- and cleaned up the kitchen, including mopping the floor. Oh, and I've still got a gruesome cold and sound as husky as a starlet -- tomorrow should be interesting. I think I did a fairly good job on nearly everything except eating properly, but if you peer at the photo above, you can see that I'm as fit as a fiddle, counting my blessings and acknowledging my hardships as the good Lord above would want me to. After all, you're never given what you can't handle, right? For those who don't know me and are perhaps visiting here for the first time, those last two cliches are my absolute least favorite and I'd go so far as to say that they're bullshit, and generally only uttered by people of immense privilege or addled brains.

So I woke up to rain, beautiful rain which meant the baseball games were cancelled and no sunny weather guilt (you should be out, outside, enjoying this weather), and it's still raining but I've cleaned out the linen closet, the tiny closet in the hallway that somehow accumulated thirteen years worth of ratty towels, fabric scraps, a moldy quilt, Christmas advent calendars and port-a-crib sheets. It was hard to get rid of the port-a-crib sheets, I must admit, and I buried my nose in them, trying to find that smell, those smells of babies, The Little Prince standing on his planet, his sober gaze under my nose. I filled a bag with all of it except The Little Prince and a mobile, shoved a few baby blankets back in a corner (would I use these one day for grandchildren, Ms. Moon?) 

Domestic quotes and my favorite Charlie Brown line

Someone needs to change Oliver's sheets. It smells like a cat died under there.
Hmmmm -- I wonder who that "someone" is.


Don't put that grape in her mouth. She looks like she's about to have a seizure.


Will you please remove the pile of shoes from the middle of the floor? And pick up your lunchbox from under the table.


Who spit all these pumpkin seed shells on the floor and under the bed?


Why isn't Halloween a national holiday? Easter is.


Has this dog not been fed, yet?


Go pop your head in and check on Sophie.


Is someone going to do our laundry?
Hmmmm--I wonder who that "someone" is.


You need to start wearing cooler shoes, Mom. These are just - uh -- lame.
I wear Birkenstock sandals all summer and then move into the Birkenstock clogs in fall.


Where did all the candy corn go?


I got a rock.

It's 2:00 in the afternoon, Pacific Coast Time, and I've had nothing to say here all day.

Are you relieved?

I woke up this morning, got my boys ready for school and out the door, dealt with Sophie and her 45-minute long cluster of spasms (I swear to God, the girl can seize for literally an hour and then sit right up and get on with her day) during which I alternately prayed, cursed, meditated and sipped coffee. That's how I do it. I then drove The Girl to school and felt enormous relief and a bit of guilt at how enormously relieved I felt that she was gone, out of my hands and into the very capable and far more cheerful ones of Renita, the Saint. When I got back home, I finished the dozens and dozens of cupcakes that I started making yesterday and last night, boxed them up, delivered some to The Husband's Mistress and then drove to Santa Monica to deliver to a client. The client's office was lined with giant posters of all the movies and television shows he had produced and the various Emmys and Golden Globes he had won. It was very impressive and since everyone who worked inside looked to be about sixteen years old, I didn't feel intimidated. After all, I'm a middle-aged baker with a husband who has A Mistress, a daughter who can have epileptic seizures every single day for over sixteen years and two sons who know baseball statistics but can't remember to feed the dog every morning, a dog who I took to the vet and who cost me approximately $349 in meds, shots and examination fees. What's there to be intimidated by?

Still, the sun is shining brightly in Los Angeles and my garden looks fantastic. I'm excited to see that the very last tomatoes look ripe, so as soon as I pick them, I'm ripping out that scraggly, ugly thing and planting Swiss Chard, Spinach and other delectable veggies.

When you read this,

I might very well be in the second or even third hour of Sophie's IEP, or Individualized Education Plan. In lieu of feeling the usual butterflies and nausea (this seems to be a theme this week) because this is our 13th annual IEP, I have decided to rename the acronym to what it might better signify. That way, those of you who think of the IEP as one of the wonders of the education movement -- how do those kids get educated? you might think -- and those of you who, like me, have participated in this oft-hellish few hours of a day might be amused.

Because I'm telling you, the old sense of humor, bitter and dark, is what sustains me, at least, 90% of the time with 100% consistency. (That, too, is a joke that only the insiders will understand. Please let me know if you do.)

The IEP, or Individualized Ecmnesia Plan (the definition of ecmnesia is loss of memory of the events of a specific period)

Amnesia by Dominic Piperata

OR

The IEP, the Individualized Ecorche Plan (the definition of ecorche is a human figure portrayed stripped of the skin)

OR

The IEP, the Individualized Emberlucock Plan (the definition of emberlucock is to confuse, to bewilder)

is an ass-kicker in every way, no matter how many years I've been doing it.

We must remember this:

My Version of a Mom Blog

Just in case you thought my life was perfect in every way (I know you do), I wanted to show you what went down today, Friday the 22nd of April.

100 mini-cupcakes for a book signing tomorrow:

Butter softening and stuff sitting out for two Easter cakes, to be picked up tomorrow:

The extent of my Easter decorating has been to haul down the stuff from the hole in the ceiling in my Barbie bathroom that leads to the attic. Who put that guitar there?

A drifting balloon from Valentine's Day behind piled up cake boxes and a cheap version of foosball, some cucumber seeds:

Oliver, getting free rein with the iPad for one thousand hours. You're going to ruin your eyes, young man!

Sophie, wondering why I'm bothering her because she's perfectly happy hanging in her room and listening to music:

I never do this, but my bed is unmade:

The perpetual calendar stuck on some ancient day, but since it hangs in the hallway, on the side of a bookcase, I gaze into Marcello's eyes a hundred times a day.

Someone didn't make his bed:

Still life with poodle:

(and I didn't tell you about the seizures because they are just part of the whole shebang, as was the trip to Pasadena to Sophie's weekly appointment with the speech pathologist and iPad guru). Now I've got to go make some frosting for those cupcakes.