Sunday, July 25, 2010

Mystifying....All of It...And There's a Lot of It.

My week in review:


Sunday: Honestly don't remember

Monday: Honestly don't remember

Tuesday: Spent the day getting the kids who were NOT going to L.A. (all but Jules) ready to do whatever it was they were going to do in our absence. Took Camille to ballet. Took Camille to her friends' house to stay a couple of nights. Got home and began trying to get Jules to calm down because he was worried about a) getting enough sleep b) having his routine altered and c) the IV he was going to have to get with his MRI. I told him to take a bath (he's into baths, at the moment, as a method of relaxation). He got into the big claw-foot tub in my bathroom. I heard him fill it, I heard him get in. He was in for about 30 seconds before I heard the SWOOSHing sound of water - indicating he had made a hasty exit from the tub. Before I had time to yell through the door to see what was going on, he got dressed and came out. He was soaking wet. Not damp. Soaking wet. As in, starting to soak through his clothes. With a large puddle of water gathering around his feet on my tile floor.


"Jules, why didn't you use a towel?" I asked.

"Because I am not done with my bath."

"Why are you dressed?"

"Because I need to feed the cats."

Then he turned around to you know, go outside to feed the cats.

Jeff opened his mouth. I gave him The Look. He closed his mouth. He was going to say, "Why didn't you just wait to feed the cats until after your bath?" But he didn't. Because the answer was obvious. If Jules could have waited until after his bath to feed the cats, he probably would have done so.

A few seconds later, Jules came back in the house, went back in the bathroom, removed his soaked clothes, and continued his bath. When he was done, he DRIED OFF because he had officially FINISHED HIS BATH, put on pajamas and went to his bed, where he apparently remained totally and completely awake for the rest of the night.

Later that same day (because I refuse to call 3:30 a.m. the "next" day) I climbed out of bed after having been unable to sleep because I knew I had to get up in the middle of the night, got Jules up, and we headed to the airport.

Jeff flies All The Time so he has Special Privileges and stuff - so he checked our bag while Jules and I got in line for security. This always makes Jules nervous. Then he acts nervous. Like a terrorist. Sigh. He hesitated when the security agent asked him how old he was. After he finally stuttered out, "Twelve" he looked to me to see if he'd guessed correctly. I avoided eye contact because I was Trying Not To Look Suspicious.

When it came time to remove his shoes, I realized he had on The Shoes That He Likes To Tie Into Approximately One Million Secure Knots. We were like a little pebble in the way of an army of ants as he squatted to remove his shoes (which he refused to merely kick off without untying). After we successfully went through the detector - and he had retied his shoes just the way he likes them, we turned to see that Jeff was already waiting for us. He had been able to zip through the baggage check because he is a Special Frequent Flyer and he breezed through the security line because he was Not With Jules and His Shoes.

As soon as we sat down to wait for our flight, Jules began his pre-flight routine of boredom, hunger, and loud sighing. I finally said, "Dude, it is officially 5:00 am for me, too."

When it came time to line up beside the little numbers Southwest puts out to control the herds, Jeff went first with the Other Special People, and Jules and I went later, with the Not So Special People. I held onto Jules' belt loop because while boarding the plane, he has a tendency to basically push his way to the front of the line if I don't hold onto him. It isn't that he's being rude, or even that he feels he is in a particular hurry. It's just that he can see the door, and that's where he's going, so.....he goes.

Jeff held our seats. He likes to sit in a certain row - it is very important to him to sit in the certain row - because then he is first for the drink service. This little quirk initially irritated me, but then I was first to get my coffee and I thought it was pretty cool. Jeff also likes to sit on a certain side of the plane, but it turned out to be the wrong side for Jules because he sat by the window and then his right ear was the ear closest to us and he is deaf in that ear which usually isn't a huge problem unless you're on a noisy airplane. So he was pretty much totally deaf the entire flight to Phoenix but it didn't seem to bother him, only me when I was trying to talk to him.


Once in Phoenix Jules was dismayed to see it was basically the same time it had been when we took off. He wanted lunch, not breakfast. We got him an egg sandwich, which he ate in two bites. Then he ate another. Back onto a plane, where we again were first to receive our drinks. I married The Man, I'm telling you. We sat on the right side of the plane, so Jules could hear me talking to him.

When we arrived at LAX I immediately began to look for TMZ. I didn't see them. But it was a little too early for stars to be out, anyway. We then did what Jules considers to be the Best Part Of The Trip - we hopped on a bus to take us to our rental car. Homeschooled kids are obsessed with buses. And then? We rented a fun yellow beetle because if you have to go all the way to Los Angeles to see if your brain tumor has grown - you should be able to ride around in a fun yellow beetle. There is simply no other occasion that calls more loudly for a fun yellow beetle. Jules loved it.


He talked about Volkswagens for a long time. I don't know where he had aquired all of his Volkswagen information, but he had plenty. For the record, when he grows up, he is going to get a Volkswagen. I cut in on the monologue and began to point out various sights, talk about Los Angeles, read street signs, notice foliage, etc......to which Jules finally replied, "And they get good gas mileage."

Chinatown was next on the agenda. We went to Yang Chow, which seems to be a pretty popular place. Lots of stars go there, and we sat beneath a picture of Conan O'Brien. The owner remembered Jeff from 2 years ago - and they immediately launched into a Spurs / Lakers conversation. The owner is a Lakers Freak. Jeff showed the proper amount of humility this year....you know.....what with the Spurs and all. People always remember Jeff. People, in general, love the hell out of Jeff. Even though he is a quiet introvert - people love him. Not that I mean to insinuate that quiet introverts are typically unlovable. Because they are not.

Off to the hotel for a 4 hour nap. Then we wanted to go swimming; I could see the hot tub from my window and it was steamy and empty. But Jules didn't have his swimsuit. So off we went to a nearby Marshalls to buy him one. We were in East L.A. and you know what? It might as well have been San Antonio. We felt right at home. Then back to the pool where I now saw that there were several people in the hot tub, including a guy who looked rather hairy and a couple who looked like they were going to steam things up.....and dang. I missed my window of opportunity. Jules hopped in the pool. Popped up, said, "This is cold," got out, and headed back inside to go to the room. Good times.


Thursday: At the hospital at 7:00 a.m. Jules began his pre-MRI routine of saying he was bored and hungry.



Enjoyed a chilly and noisy MRI, and Jules was a trooper for the sticking part - later said it was no big deal. Ate breakfast in the cafeteria, then headed to the House Ear Clinic to have the film read and talk to Dr. Brackman.


Jules had a hearing test, confirming that he is still deaf in his right ear. More importantly, he has the same level of hearing in his left ear as he had last year. Then the waiting began. Let me just say that this clinic serves mostly deaf people. So it makes sense that the technological method of communication they choose when it is time to call patient names, is to stand off in the corner of the waiting room and quickly yell out 6 or 7 indeterminable names. 4 or 5 people hop up hysterically and head to the corner, because the name-caller has already turned her back and is now walking away from them down the hall saying, "Follow me!" What follows is usually 1 or 2 of the people who followed her returning to the waiting room because they had misunderstood the names that had been called, and then several people sitting in the waiting room looking uncertain and confused and talking amongst themselves as to whether or not their names had been called. The receptionists in the waiting room? Watch this without intervening. This time around was no exception, and an elderly almost completely deaf man went up and began asking them if his name had been called. He was told that they didn't know what names had been called. Then they looked at him, daring him to continue with this unreasonable line of questioning. He stared back. But he broke first, walked back to his seat, where his timid elderly wife didn't know what to do next. After a few minutes he tried again. Same results. So then, an audiologist came out to call more names, and he high-tailed it up there and explained his situation to the audiologist, who said, "Oh, why didn't you say you were hard of hearing?" Because Dude This Is A Clinic For Deaf People. Anyway, then he handed him a little beeper thing (that they apparently keep hidden away for special circumstances like when a hard-of-hearing person stumbles into their deaf clinic) and that Settled It.


I was feeling all in Activist Mode over this and fully intended to bring it up with Dr. Brackman but then Jules' name was called and we all quickly gathered up our things and sprinted up to the Name-Caller and hysterically ran down the hall after her. Then we waited for Dr. Brackman and I forgot all about the waiting room fiasco because Hello My Kid Has A Brain Tumor and I was waiting to find out if it had grown. It had not.


Dr. Brackman walked in and said, "Jules continues to mystify us..." Jules enjoys the Atypical Presentation label with most things in life....including his tumor - which has followed none of the usual tumor rules seeing as how it belongs to Jules and all. And we are happy with that, believe me. Even though I knew it hadn't grown (just knew it - don't ask me how) and didn't feel particularly worried about it (having had the conference distraction for the previous few months) I still cried. Dang. It embarrasses Jules. But I can't help it. I think I was Secretly Very Worried.


So then? We cruised Hollywood and Beverly Hills and Stuff. No star sightings this time!! But other fun stuff like sex shops and pot shops and why didn't we ask Dr. Brackman for a scrip??? You know, before I had ever been to Los Angeles, I really didn't think I would like it. It didn't sound like my kind of place. But I totally love it. I love driving down a street through the Jewish blocks (kosher delis, everything written in Hebrew, little old men with black hats walking down the sidewalk) right into Little Ethiopia, and then into Whatever Comes Next.....like everyone is just right there together in their differences. I really really like it. We ate lunch at the famous Farmer's Market at Fairfax and 3rd....watched people....and headed back to the airport for the fun bus ride.



At the airport, we had a long wait. Jules (and now me, too) began the pre-flight boredom/hunger/heavy sighing routine. We had our spirits lifted, however, upon the arrival of a loud young woman and her boyfriend. As soon as I heard her say, "Dude, I'm effing sorry I drank all of our food money, okay? How long are you going to be pissed about that?" I perked up. Entertainment had arrived. She was pierced, dyed, tattooed, overweight and extremely loud. (Disclaimer: I have had fuchsia hair. I have a tattoo. I am overweight. I'm not picking on any of these things - just trying to give you the FULL PICTURE). He was pierced, dyed, tattooed, and very meek. It was awesome. He sat down right behind me, our heads back to back. She marched off to the bar a few yards away, where she proceeded to call him and continually pester him to come drink with her. I could literally hear her from the bar where she was yelling into her phone, AND through his phone right behind me. He repeatedly declined her invitations, I think because it had probably been days since the poor boy had eaten. I was thrilled to see they would be on our flight.

We were already seated when she came down the aisle. I didn't hear what was said to her (something was) but I did hear her (as did everyone else) say, "Yeah, thanks for the advice Buddy," and then roll her eyes. Yay! This was going to be fun. But you know what? She sat down and passed out and was no fun at all after that. It was Uneventful.


Friday: We finally arrived home 1:00 a.m.


Saturday: I lived through the Conference - which is another blog post for another time.


Signing Off as a Grateful (and tired) Sardine Mama

5 comments:

  1. Where did he get all his VW information?? You really are brain-fried Peachy.
    He got all his information from **IAN** :D who is the only person in the house who will listen to Christopher talk about VW's.

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  2. Amazing journey.
    And glad there was no growth in your guy's brain.

    I think you should print the relevant part of this post and send to the clinic. It might help them remember who they're supposed to be working for.

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  3. Stopped on by from the Jason Show. Nice blog. BTW I'm a VW Beetle fan too.

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  4. Good News about Jules. And because I have only known you for a couple of months now, this is the first I am hearing about his health issue. You had mentioned that Joshua reminded you of Joel. Jules reminds me of John. Wait! Did I get all of those "J" names straight? Anyway, you talked about Jules not being rude by pushing his way through the crowd. That is exactly like John. He will walk over babies to get where he needs to go and then blame the baby for being in his way.
    And now after reading your Post, I agree with you, I'm not too wordy.
    I'm glad that we're friends, m.

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  5. Wow. What a post. You and Jules and family have been through a lot! I'm glad that you enjoyed your time here in LA. It really is a fascinating place!

    I'm also glad that the tumor hasn't grown. What an ordeal!

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