Today is the day.  Earlier this morning Tina submitted an application to have Finn participate in Dr. Weeber’s Minocycline clinical trial at the University of South Florida.  I don’t know that we will be selected, as I heard that hundreds have already applied for the 24 slots.  But we are going to give it a go, and I certainly hope that this trial (or some future trial) is so successful that, as a result of it, one day Finn will be able to read this post, understand it, and explain to me why he thinks that I am completely full of crap.

(If that really happens, and a teenaged Finn reads this some day, then I have a few things to say.  First, you really must clean your room. It’s a pig sty in there.  That room is so gross that I think you are developing some previously unseen mold cultures in there; perhaps you plan to start your own clinical trial.  And yes, if you clean your room, then you can borrow my car tonight.  If I see a single scratch on it, though, there will be hell to pay.  I don’t care if you are half a foot taller than me.  As Bill Cosby said, “I brought you into this world; I can take you out.”  Of course I realize that you have no idea who Bill Cosby is.)

Anyway, I am not crazy enough to really expect any of that, but it would be nice.

Also, I have to admit that putting Finn in this trial, or any other clinical trial, frightens me a bit.  I have read about the potential side effects, and even though they are not that bad (although anything that dulls his world-beating smile would really suck), I still think that we don’t really know what drugs can do to kids.  Hell, who would have thought that an antibiotic most commonly used for acne might be a treatment for AS?  If this drug happens to ameliorate some symptoms of Angelman Syndrome, what else might it inadvertently do?  And as I have mentioned before, some parts of Finn’s personality are tied to this disorder.  How might he change if his disorder is minimized in some way? I don’t really know.  Still, I remain excited about the trial, but even this excitement is tempered by some reservations.

Finn is a kid who seems really untroubled by such reservations, though.  I was about to write that he is a fully-realized, unburdened id, but I don’t think that is true.  He understands cause and effect, participates in bargaining, and will engage in requested behavior more because it is expected than because failure to do so will result in a punishment. So Finn is more evolved than I sometimes perceive. I guess I tend to observe him, rather than really interacting with him, while he is doing his own thing.  Of course he looks like a bundle of unrestrained impulses in those moments, but that’s what free play really is.  And even then, he isn’t destructive, or mean, or callous. He is just the sweetest little boy who is exploring his world in all the ways he can.

When I was in high school, I had an Andrew Wyeth print on my wall called “Christina’s World.”  It depicted a disabled girl stuck in her front yard with her house and barn off in the distance, and she seemed to have no way to get back home. To this day I love that painting, and to this day I couldn’t really explain why.  I am by no means a student of art; I don’t think that I knew the girl was disabled until college.

Now, I often feel guilty about that print; it seems that by putting it on my wall I somehow doomed my kid to a restricted life. I know that’s silly, and I know that the posters I put on my walls in high school could not impact my life so directly (otherwise I would be driving a Ferrari Testarossa while dealing with impossibilities of perspective and watching my hands regenerate themselves).  Even though these things don’t directly impact me in such obvious ways, I still believe that the choices I made long ago continue to affect me, often in ways I don’t understand.

If we are lucky enough to be invited to join the Minocyclene trial, I really hope that we make the wisest choice there.  Because the repercussions of that decision will affect us all, in ways both known and unknown, for years to come.  I pray that our choice makes all of our lives better, especially Finn’s.

This is the first time I have written this blog post in California in almost a month, and it feels pretty good to be home.  For the most part, things with Finn have been good this week.  After the generally crappy IEP process, it’s great to see that Finn is doing well in his new school, at least initially.  Probably the biggest factor is that his teacher is interested, motivated, observant, and positive.  When your child has a teacher like that, a whole lot of other sins may be forgiven.  It also helps that the teacher’s parents are from my home town.  Unless you voted for David Duke back in the day, I tend to give other people from the Bayou State the benefit of the doubt.

Another positive fact this week is that Finn has been in an especially good mood.  Just yesterday, he accompanied me to Costco, and he thought it was the funniest place in the world.  Every corner brought a new excuse to giggle like a crazy person.  From rows and rows of giant TVs, to endless aisles of monster-sized dry goods, to the frigid cold fresh produce room where, for the first time in his life, Finn could see his own breath, he laughed incessantly throughout the entire store.

To be fair, there is something funny about mushrooms sold by the ton, peanut butter tubs larger than some French cars, and toilet paper containers on which I could comfortably sleep.  I just needed Finn there to remind me that Costco is basically absurd.

The only bad news this week is that Finn caught a cold.  For most kids, colds are no big deal, but whenever Finn gets sick there is a chance that he could have seizures.  So far, though, the main symptoms of his cold have been interrupted sleep and the ability to produce snot in Costco-sized volumes.  Not fun, and especially gross when he decides to share his nose-drippings with me, but basically tolerable.

The other problem with a slightly-sick Finn is that he doesn’t really know how to relax and take it easy.  So we have to trick him into it.  One of the best methods is strapping him in a stroller and taking him for a long walk.  Accordingly, this weekend Finn got to see most of the streets in our neighborhood.  Repeatedly.  So that’s why this weeks pictures of Finn feature him in his red Quinny.  It may not be the most interesting experience, but it sure reflects the reality of this weekend.  And if you are wondering about the “Flashdance” look of the first picture or the “I’m gonna eat you” smile, well, I guess you will have to ask Finn.  Because I don’t have a clue.

I don’t have much to say about Finn this week because, well, I have not seen Finn this week.  Instead, Tina and I spent the week in Hawaii catching gorgeous scenery, having some amazing food, seeing a few old, dear, friends, and saying goodbye to another one.

The good news is that Hawaii remains as gorgeous as ever.  We started in Lanai, which may be the most homely of the islands, but it is still a beautiful place to be.  Through Tina’s legendary online diligence we were able to get a good deal at the Four Seasons Lodge resort, which is an interesting place to stay.  Unless you like overpriced, mediocre food, I don’t really recommend eating there.  Also,  Tina was not terribly amused by the consistent chirping sounds made by a dying fire alarm in the attic above our room.  But we found great restaurants in the town, the hotel staff managed to silence the fire alarm after the first night, and the room, grounds, and staff were all first rate, so the place gets a solid review from me.  We especially liked the chair, umbrella, water and pineapple service at the beach resort - it will make lying on a towel on Manhattan Beach pretty uncomfortable the next time we trek down to the local shore.

The other weird thing about the Four Seasons is that it seems overrun with older, wealthier, and almost aristocratic patrons.  I would make fun of them, but I fear that I am not as different from them as I hope, so maybe I should stay quiet about this issue.

Our only real adventure on the Pineapple Island occurred when we ran across a jeep stuck in the sand on a trail leading to an old shipwreck.  I know little to nothing about off road driving, so my attempts to help them were pretty pathetic.

I was almost embarrassed to ask my first question, but I gave it a shot anyway.

Q:  “Is your jeep in four-wheel drive?”

A:  “It is a four-wheel drive!”

So I got in and put it in four wheel drive mode and asked them to try again.  It was too late, though, as the back wheels were too deep in the sand and the front wheels could not pull the car out.  We hung around for a while and kept trying to help.  We tried putting cardboard and floormats beneath the wheels.  Tina decided to help by pushing the jeep while they gave it gas (which only resulted in a very dirty Tina).  Eventually they waived us on and we decided to hike into the next beach, rather than risking getting our jeep stuck.

Unfortunately, the sand was so hot and deep that it melted the soles off of Tina’s sandals.  I made fun of her for buying crappy Nike sandals, until I realized that the soles were coming off of my Tevas as well.

After four days on Lanai, we went to Oahu, where we saw a couple of my friends from high school and spent three days touring the island.  It was great to see my old friends - they both have beautiful families, live in wonderful places, and have jobs that sound really, really cool.  It was also great to see the less developed sides of the island, though I don’t think that I ever need to encounter Waikiki again.  I loved going to Pearl Harbor and seeing the Arizona and the Missouri.  And I really enjoyed seeing how people live here, since Honolulu has always seemed like a somewhat realistic place to live, unlike Kauai or the big island.

In fact, I used to dream about moving to Oahu.  The island seemed like a perfect place to be.  Even when I was really young, I thought about moving to Hawaii and the kind of life I might build for myself if I lived on Oahu.  

After this week I no longer have that dream, but I think that is a good thing.  Because I was a bit afraid that I would come here, still feel that pull, and then feel resentful because Hawaii isn’t realistic for me.  And I was even more afraid that Finn would be the focus of my resentment, since his condition would make moving away from LA particularly difficult.  Instead, though, I realized that the dream was always about finding a place where I could feel relaxed, comfortable, at ease with myself, and comfortable with myself as a person.

None of those things are about geography or location at all.  And none of those things are really about Finn, either (although he has all of those qualities in spades).  

I do still love Hawaii, and I plan on coming back some day.  But I am okay being a tourist, and I am okay saying goodbye to this old dream.  And, let’s be honest.  As much as I love Hawaii, I love Finn more.  He doesn’t deserve any resentment from me (but I would give Angelman Syndrome the back of my hand if I could). So I will look for other ways to find peace with myself.  One good place to start is realizing that I cannot wait to get home in a few hours and I am even more excited about seeing Finn soon.

Finn spent last night at UCLA’s childrens hospital.  Frankly, that place weirds me out.  Part of the problem is the giant portrait of Ron and Nancy Reagan in the entryway.  Frankly, I never felt that the Great Communicator was talking to me.  Maybe it has something to do with that Philadelphia thing. 

The other weird thing about the hospital is the parking.  The easiest and most apparent parking is valet.  The two cars in front of me at the valet station were an Aston Martin and a Maserati.  Again, a bit out of my league.

The purpose of the UCLA endeavor was to have Finn monitored by EEG for 24 hours to see what Angelman Syndrome is doing to his brain waves and to document any seizures he might have during that time.  Finn seemed to view the whole thing as an insidious form of torture.  Considering that the day consisted of waiting, then more waiting, the taping a couple dozen electrodes to his head, then covering the rest of his head in gauze and tape, then connecting it all to wires and monitors, then confining him to a small room, and then trying to force him to sleep in a crib flanked by monitors, displays, blinking lights, and all sorts of other doo-dads, all while keeping the electrodes taped to his head and having nurses checking on him hourly, well, maybe he was right.  Tina got to stay with him in the room all night, and neither one of them really slept at all during their stay.

The neurologists were deeply disappointed that Finn declined to have any seizures during that period.  I know that, from a clinical perspective, that makes sense, but it sure feels uneasy hearing your kid’s doctors root for his brain to undergo the equivalent of alt-ctrl-delete.  The docs then asked us to keep Finn at the hospital for another night in the hope that his brain might misfire in the next 24 hours.  “No, no, no, no, no, and no,” was Tina’s half-hysterical response.

After a decent discussion with the brain docs, we left the hospital with a half-assed game plan for the next time Finn suffers a seizure and a bunch of different meds. 

Then Finn gave us the real surprise of the day.  Apparently, he has perfected the technique for getting out of his crib.  That meant that his bed-time routine, which usually lasts between 5 and 20 minutes, took 3 hours.  We tried all sorts of things to get him to sleep.  Possibly the most delusional was encasing the crib in an old hammock to keep him from getting out.  One rung down the scale of silliness was putting some mattresses on the floor and hoping Finn would find those nice and comfy.  Eventually we just waited until he was truly exhausted, did some sleep dances, and finally he decided to give in and take a rest.  Let’s hope it lasts.

Apparently we have to find a new sleeping arrangement.  Tomorrow.