Friday, January 27, 2006

Love is Lamictal

A few weeks ago, we attended the wedding we thought we'd never live to see. This was a much bigger deal than the last wedding we attended. Jete's aunt and her boyfriend decided to get married after twenty years of dating. She is the first of Clyde's siblings to get married in over thirty years. They're both in their early 40s and, until their wedding night, neither of them had ever moved out of their parents homes.

I know. WOW.

When Jete and I first started dating, this aunt was very nice to me. She always made sure to include me in conversations at family functions when I still felt new and out of place. When we started 'living in sin', her behavior cooled off a bit, but it completely froze when she found out we were getting married.

A few months before our wedding, she decided she needed to have a talk with Jete. She took him aside and told him that he was making a huge mistake. He was rushing things and marriage was a bad idea. We were hurt, but as anyone who ever planned a wedding knows, she wasn't alone when it came to offering unsolicited advice. The wedding went forward as planned, with or without her blessing.

She hasn't given any further words of wisdom to either of us. She is good to our kids when she sees them, and is friendly to Jete and I. For the sake of keeping peace, we just pretend that their little conversation never happened.

Like everyone else in the family, we were a bit surprised to hear of their engagement. But despite our past differences, I do wish them a happy marriage. In some strange way, I want them to be obscenely happy so that she'll have to admit that she was wrong.


Their wedding was nice. Very traditional, very CATHOLIC, ceremony. So, of course, one of the readings was 1 Corinthians: "Love is patient, Love is kind..." I looked over at Jete and smirked when they started reading it. He hates that passage. We specifically chose not to use it in our wedding because it's becoming so common. On our way from the ceremony to the reception, it inspired one of his usual tirades.

"'Love is patient. Love is kind.' That's a bunch of bullshit! They don't know the first thing about love with their perfect little organized lives. Love isn't like that at all. Love is ... Lamictal!"

Lamictal, for those of you who don't know, is Ethan's newest seizure med. We had spent the day before the wedding struggling to get our insurance company to cover his prescription. His comparison made me laugh out loud.

"You know this is going in my blog, right? And I think 'Love is Lamictal' has to be the title."

He smiled. "It's true. Enough of this happy sunshine crap. It isn't real."

He was right of, course. In his own angry, poetic way.


His aunt and now-uncle are adjusting to living together. Less than a month after the wedding, things like what to make for dinner, when to do the laundry, where to keep the towels, are starting to get to them. His aunt has told Jete's sisters: "Don't ever get married! You have to live with a MAN." Needless to say, it hasn't been all they thought it would be.

After 40+ years of each doing things their own way, I can imagine it's difficult to deal with someone else's quirks. But I wonder what kind of expectations they had about married life. No matter how long it drags on for, "dating" - sharing your stories, cups of coffee, an occasional movie - does nothing to prepare you for marriage. Marriage isn't for everyone. It's a speeding, bumpy roller coaster. If they expected any less, then they got on the wrong ride.

Part of the problem is the illusion that is a wedding. Everyone looks beautiful, you're surrounded by flowers and candlelight. Even the Bible readings are romanticized. Yes, love is a wonderful thing, but it can also be very painful. Terrifying. Downright messy. Maybe they should clear things up with a few specific examples:

Love is ... cleaning the vomit off the floor when she has food poisoning.

Love is ... fighting with the insurance company or bill collector so that he doesn't have to.

Love is ... telling silly stories until her panic attack is over.

Love is ... going to his family function where you know there will be large dogs roaming free, even though you have a dog phobia.

Love is ... taking a vacation day so she doesn't have to go to a doctor's appointment alone.

Love is ... missing out on your family's Christmas Eve tradition so that you can go to his family's.

Love is ... keeping each other company while you wait for your son to come out of his ten-hour surgery.

Love is ... Lamictal. Risky, expensive and a pain in the ass to get in the right dose. But if everything goes right, it can make your life better.

(Just watch out for the nasty rash.)

Tuesday, January 24, 2006

Eat your heart out, Vinnie Barbarino

In my mind, 2005 will forever be The Year of the Vinces. It was the year I found my two soulmates - Vince Vaughn and Vincent D'Onofrio.


My interest in VV was picqued by Old School, Dodgeball and some DEPRESSING movie I caught on network TV. But it was solidified when Jete and I saw Wedding Crashers. That was the first (and, so far, last) movie we saw together in the theaters after Ethan's surgery, and it really hit the spot. We laughed and laughed until we cried. It was cathartic, which I'm sure had more to do with the ordeal we had been through than the movie. But I still give Vince some of the credit.

We bought the DVD and watched it last week. Definitely funnier the first time around, but Vince still cracks. me. up. I love watching him eat. All those crab cakes? And that scene, when he's fighting with Owen, but decides to stay and eat breakfast anyway? Just thinking about him trying to talk with an entire brunch in his mouth makes me laugh.

Yes. It's silly and childish and downright dumb. But what can I say? He's my Three Stooges all rolled into one delicious package.


Obviously, Law & Order, CI is what secured my love for VD. (Okay, yuck. And I was going to change that sentence, but isn't it funny? Just think of the Google hits I'll get...)

I first saw my "boyfriend Bobby", as Jete calls him, in that HORRIBLE war movie where he blows his head off ten minutes in. From that point until early last year I was so, so, scared of him. He just creeped me out. I couldn't watch the CI episodes, even though I was obsessed with all the other L&O franchises.

One night, I was too tired or lazy to change the channel and I saw a full episode. And from that moment on, I was hooked. If you're a fan, you know the disease. Detective Goren's obsession with his case becomes your obsession with him. The head bob. The bug eyes. The psychoanalysis he uses on everyone. As crazy as he is, he knows people to their very core. And something about that is so seductive.

I tried to explain this to E once, and she echoed my thoughts. There's something about him that is simultaneously creepy and sexy. I'm afraid of him, but I want to take care of him. I'll bring him home with me, but get a restraining order. It's so bizarre. But true love never makes much sense, I suppose.


Tonight, I caught the last few minutes an episode. Bobby (oh! how can you not love a grown man who goes by BOBBY?) had just arrested a thief. Following was the last few lines of dialog:

Thief (sticking his head out of the cruiser):
This will be the last time we meet like this detective.

I hope so.

Thief's Mother
(who was there for some reason, I'm sure): [Scoffs] Hope is for suckers, detective.

And, scene.

See? That's why I love my boyfriend Bobby. He has hope for a thief, even when his own mother has given up on him.

Saturday, January 21, 2006

The Good, The Bad, and The Missing

Last weekend was our family's version of a long weekend. Jete and I had both Friday and Monday off. And Ethan had appointments on both days.

Nothing says relaxation like going to see the doctor.


Friday was a trip back to Boston to see Dr. JJ and Dr. S., his physiatrist and orthopedic surgeon. These are trips we've been making every 3 to 6 months for the past two years. As we were driving home, I pondered the changes in our attitudes since we started making the trek east.

Our first visits, before Dr. S. was involved, were very anxious. The car, the waiting room, even the exam room were tense places. We were so frightened to hear what they might find. What new treatments would we try? What other doctors would we have to see? We spoke in hushed tones in the waiting room, very somber. What would become of our son?

After Dr. S. got involved, and we knew the surgery was necessary, we stopped worrying about "what-if", and became resigned to deal with "what-is". We were less nervous, but more serious. On the road to the inevitable, we did what we had to do.

Now, the surgery is over. In some ways, we feel like we've been through the worst of it. They can't shock us anymore. We know Ethan's prognosis. We know he'll probably need this surgery again in a few years. We're okay with that. We've seen the secrets behind the curtain. Oz isn't so scary anymore.

Friday's visit found us laid-back. Calm. We were laughing and joking in the waiting room, and didn't even mind that they made us wait the usual hour or two. We didn't care that they switched us to the smaller exam room in the middle of our visit. It was gorgeous spring-like weather, and Friday before a long weekend. No worries.

Laid-back or not, we expected to hear bad news. Ethan had his usual x-rays, and we figured they were going to show his hips regressing to their pre-surgery condition.

Imagine our surprise when Dr. S. went over the x-rays to tell us that Ethan's hips are doing remarkably well. In one position, you can see that the bones are starting to correct themselves. Now that the hips are set deeper in the sockets, the pelvis is starting to grow properly. As a matter of fact, he pointed out that in the lateral ("frog") position, his hips look normal.

While Jete and I stood gaping at the x-rays, Dr. S. wished us well and started to leave. Before he scurried out, I stopped him and asked about the next piece of the surgery. Based on what he told us before, we expected Ethan to have the metal plates removed about a year after the surgery. Since it will be a year in March, I figured they'd need to be scheduling things soon.

Dr. S. said that actually, we can wait a year or two after the surgery to remove the plates. They are still close enough to the surface to reach, and since everything else is really ideal, he'd rather not mess with him right now. We can probably wait one more year.

After he was gone, I turned to Jete. "Did he just use the words normal and ideal in reference to Ethan?"

Jete looked as surpised as I was. "Well. It is Friday the thirteenth."


Monday's appointment was Ethan's four-year checkup. Compared to his "real" doctors, we don't take his pediatrician visits very seriously. Judge if you must.

We had the nurse-practictioner this time. She asked a million questions, since she isn't familiar with the complexity of his history. (I think he has the thickest file in their office, and he still has fourteen years to go.) For some reason, she seemed to be looking for something wrong. Everything I told her, she seemed to digest carefully, with a shred of doubt.

After all the usual checks, she asked if he was attending school. We explained the situation, told her we weren't comfortable with what they would provide for him at this time, and that we felt better with him at home. We have a stander, special seating, AFO's, and do PT as instructed by his last therapist.

She didn't seem pleased with this answer. "I'd like to see him in school," she said. We explained that yes, he would go someday, but right now, we are secure in our decision. Besides, I jokingly said, "He would be sick all the time from the other kids. He has been very healthy all winter."

She didn't look impressed. "Hmm. Yes. I guess he's relatively healthy."

This kind if irritated me. Ethan may have a lot of disabilities, but he is most definitely healthy. He hasn't seen his pediatrician since his three-year checkup, other than to get a flu shot this winter. Even CG has caught colds and stomach bugs that Ethan withstood. With all the potential problems he has to deal with, I would think that is reason to celebrate.

Her final check involved a genital assessment. She checked to make sure that his testicles were descended into the scrotum. She felt around for them. And searched. And searched. And searched.

Finally, she explained that she couldn't locate them. The reflex that causes them to shrink up into the abdomen is strongest at this age, but they should still come down once in a while. She called another doctor in to see if she could find them. No such luck.

After five minutes of groping Ethan's genitalia, they decided that they were not to be found that day. She asked us to come back in a month to have another look. If they were still missing, we'd have to see a surgeon. He may need minor surgery to "tack them down".

Neither Jete and I were too concerned about her diagnosis. I know they're in there. But she seemed to be proud of herself for this minor victory. As if she thought, "There must be something else wrong with that handicapped child. He couldn't possibly be healthy and stable."

Whatever. We'll see what happens next month. I'll bet one of the male doctors could find them. If they're anything like the men I know, they've got plenty of experience in finding their own.

Tuesday, January 10, 2006

today in history

fifteen years ago today, I was listening to Blood Money on cassette while writing in my journal. I wrote about my day at high school. We had an hour delay because of an ice storm. I had an English midterm that I was sure I failed (I didn't). I was starting to like a boy named Joe, who didn't even know I existed.

nine years ago today, I hung out with Jete until the wee hours of the morning. I was confused about my growing feelings for him and the fate of our friendship. I wrote in my journal: "I feel constantly excited, yet completely terrified. I have never been so scared about something I wanted so much. Every day is a wonderful mystery."

five years ago today, I contacted our photographer to see if our wedding album was ready yet. I emailed my mom to say that I was miserable at my job and was considering applying at another company. But even so, I was hesitant to make any major changes until our house-hunt was successful.


four years and 12 hours ago today, I drove myself to the hospital for my first non-stress test. I'd been on bedrest for a month, and I hadn't gotten off the couch in ages. It felt nice to be upright for a while.

four years and 11 hours ago today, I was told Ethan was in distress and I'd need emergency surgery.

four years and 10 hours ago today, I was strapped to an operating table. As they put me to sleep, they assured me that everything would be okay.

four years and 8 hours ago today, I woke up to hear that everything was not, in fact, okay.

four years and 10 minutes ago today, we saw Ethan for the first time.


three years ago today, I scheduled a "sick visit" with my doctor. Through tears, I told her I was sure I was dying. That, during my trips to the hospital, they diagnosed panic attacks, but I knew that I was really having a heart attack. That I had hypertension; that's what Dr. F told me, so my blood pressure must be through the roof. She checked my blood pressure and said it was normal. She gave me an EKG and said it was normal. I left with Paxil (which actually made things worse for me) and the names of local psychologists. And the tiniest glimmer of relief. I was okay. For now.

two years ago today, I was just starting to feel normal again, although a changed version of my old self. I decided to have a "me" day. I went out and got my hair cut the shortest it had been in ten years. I went shopping. I was 6 months pregnant and terrified that everything would happen all over again. But I was starting to let myself be a little hopeful. Maybe, this time, things would be different.

one year ago today, I let my boss know I'd be out of work two days that week for Ethan's appointments. I emailed a friend and told her that they'd be scheduling his surgery in a few days. I was worried for him, but anxious to get it over with and move on to the next step.


today, I let my boss know I'd be out of work this week for one of Ethan's appointments. We'll be meeting with the surgeon to discuss his next surgery. Jete and I discussed plans for Ethan's birthday party this weekend. We ate English muffin pizzas. Jete taught CG how to brush his teeth.

Day to day, things don't seem to change that much, but in terms of a year, five years, fifteen years, life gets completely turned around. In the past four years students have started and graduated high school. Movies were written, filmed, and debuted. Marriages began and ended. People were born and died. A lifetime. Ethan's lifetime.

Four years.

today, I'm ready to see what the next four years will bring.

Monday, January 02, 2006

Attitude Adjustment

Why wait for Spring? After everyone had breakfast, I put Abbey Road on and danced around the living room with CG.

In case you were wondering, there's nothing specifically Spring-y about that album. (Yes. I'm 90 and use words like ALBUM.) It just brings back memories of the Spring Jete and I spent in our first apartment.

One gorgeous weekend, we decided to be really grown up and wash the windows (something I don't think I've done since). We lived on the top floor of a three family house. No one else was home, so we opened the windows and turned the music all the way up. Abbey Road was one of the CDs we played. I don't really remember any others. Every time I hear one of those songs, it's Spring again. Warm sunshine, crisp air, and the fragrance of new growth.

So this morning, I cleaned the cobwebs out of my head and made it Spring in my mind. For an hour, at least.

New Year, Old Attitude

This past week, I enjoyed the following events:

  • little-to-no time alone with Jete
  • CG's now-famous temper tantrums
  • half a dozen panic attacks
  • an increase in Ethan's seizures
  • opening overdue bills
  • scheduling more doctors appointments
The more things change, the more they stay the same.

I'm not a "New Year's resolutions" kind of girl. I never announce to the general population: "I'm going on a diet!" or "From now on, I'll never do ____." Practices like that are just setting yourself up for failure. I especially don't believe that I should try to be a better person just because it's January. Why wasn't I a better person in December? Why not wait until March to try? The date is arbitrary.

I understand the reasons behind it. People like the clean slate. Throw away that old calendar and start a new one. The year stretches ahead of you, waiting to be filled with good things. At least, there is the hope of good things.

Usually, I'm a glass-half-full kind of girl. I like the idea that each new year - hell, each new day - is a new opportunity. Every moment is ours to mold in this life. Until we know otherwise, there's no reason we can't hold onto the positive side of things. At work, I'm famous for my motto "Anything is possible."

But this past week, I'm not seeing the fresh, new opportunities. Maybe it's the hormones. Maybe I'm just in a funk. But two days in, and this New Year looks the same as the old. And that makes me sad.

In general, the second half of 2005 was pretty good. Things were stable in my life, work was fine, the kids were healthy. But it was still a rough year. The four months that were eaten up by Ethan's surgery were a big part of that. But there were other things that just wore me out. That I never had a single vacation. That, in fact, all of my vacation time was used up by the first day of June. That Ethan's seizures got more and more out of control. That, to deal with them, we have more specialists and hospitalizations to look forward to. That CG is in that needy toddler phase, and I never feel like I'm handling it properly. That I just never feel in balance.

Plus, there's another Big Project going on in our lives. I can't really talk about here, other than to say it should be a positive thing. But it is going to be a lot of stress and hard work, and many years before it is over. This past month, we finally felt like the Big Project was moving forward. But I wasn't prepared for the emotional toll it would cause. Just looking at that long road ahead makes me want to take a nap.

Right now, the new calendar isn't bringing me any hope. The next two months are already booked with appointments, four requiring days off work and trips to Boston. I know my vacation time is going to be gone in a few months, just like last year. I know Ethan's going to have at least one surgery this year. And he'll have more problems with his seizures. And I'll have more problems with the insurance company. The new year doesn't change any of that.

Lately, I feel tired all the time. I know I should be eating better, and making time to exercise, and I know it's affecting my mood. I know my panic attacks are related to that, and to the darkness, and snow, and cold, and all the damn hibernation a New England winter requires.

Winter was a magical time when I was a child. But without the prospect of Snow Days or Santa coming, it just doesn't hold the same allure. The only hope I can cling to is Spring. I feel it from time to time, just off on the horizon. We had a slight warmup this weekend, and I could've sworn it was just weeks away. And seeing how fast time passes now that I'm OLD, I know it will be here soon.

For me, the real New Year will begin when Spring returns. I can open the windows again. Put on Abbey Road and turn it up. Loud. Clean out the cobwebs. Get in the car with Jete and just drive. Head somewhere new for the night, or a weekend. Sleep in late. Come back really refreshed.

Maybe 2006 holds some of that for me. Just thinking about Spring makes me feel a little better. I guess that means I haven't given up all hope.

It's a new day. Anything is possible.