Tuesday, November 29, 2005

Just When You Thought it Was Safe to Wear a Bathing Suit...

I followed a link to a link to another link and wound up at this site. I can honestly say I learned something new today.

It's weird, they vaguely remind me of something I've seen before.

Guess thongs and bikinis will soon be replaced by these. I'm honestly not sure which is more revolting.

Typical Tuesday

I went to a meeting today. At the end of the meeting, they held a drawing for raffle prizes. Movie passes, sweatshirts, and water bottles.

As it turns out, only 9 of us showed up. There were 8 raffle prizes. Guess whose name was the only one not picked?

I didn't really need another cheap water bottle. But I had a serious case of "gym class" deja vu.


For the entire autumn, I was vigilant about exercise. Three times a week, or whenever meetings and doctor visits allowed, I walked at lunchtime. I'd scale the entire 6 story parking garage, up every ramp and around the perimeter. Most days I rushed home after work, and we'd take the boys for a half hour walk around the neighborhood.

Yes. Sometimes, I'd walk twice a day. Yay me, right?

But did I lose any weight? A pound? An ounce? Nope. Not me. My weight stayed exactly the same. Down to the "point 8" on our digital scale.

And then, daylight savings ended and I got home in darkness. No more walking with the boys after work. And sometime in November, it got cold. No more walking at lunchtime. In fact, I haven't walked at all in almost 3 weeks.

The guilt was starting to get to me. I was sure I must have gained weight. So I got on the scale this morning.

Guess what? I lost two pounds.

My body hates me.

Wednesday, November 16, 2005

Those Were the Best Days of My Life

Growing up, Sete, our cousin DJ and I were best friends. More like three sisters than cousins. As we got older, we went through spurts where we made Non-Family Friends and didn't hang out as much, but we always stayed close.

A couple of years after high school, DJ started dating Jeremy. Jeremy was outgoing, goofy, and very down-to-earth. He endeared himself to my family about 3 minutes after they started dating. He came to all the family functions. It seemed like he had been there all along.

Jeremy came equipped with two best friends - Jete and Mike. At the time, it seemed perfect. Three girls, three guys. DJ and Jeremy planned to fix us up into three couples. Specifically, they thought Jete and I would be perfect for each other.

The night they arranged for us to meet, I determined that I could NEVER be interested in this ... boy. Really, he was just that - only 18 (almost 19, but that doesn't count) - while I was a mature 20. He was scrawny and dressed funny and hardly said a word all night. I teased Jeremy, talked with DJ over dinner, but Jete hardly spoke. I found out later, he had a negative first impression of me as well (I think his exact words were "stuck-up, know-it-all, bitch"). We separately told our matchmakers to forget it. "We" as a couple would Never work.

Pressure off, the six of us became friends and started hanging out as a group. We'd get together and do fascinating things like listen to music, play board games, and go to IHOP at 2 AM. We were dorks, but we didn't care. We had fun.

As the months went on, I decided Jete wasn't so bad. He was growing into his scrawny body, and I was relieved to see that he could actually speak once he got to know you. He was just really, really shy. He eventually saw past his first impressions of me, too. We had no interest in each other romantically, but we were becoming good friends.

About a year later, DJ and Jeremy got engaged. They moved into their own apartment about a half hour away from the rest of us. They were the first of my friends to have their own place. We moved them in and helped them decorate. The apartment became our new hangout. We spent most of our nights and weekends there. Still living with my parents while attending college, this was my first taste of freedom.

One Sunday morning in November, my mother called me at my part-time receptionist job. Jeremy had been killed in a car accident on his way to work. He was just 21 years old.

I went to see DJ at Jeremy's parents' house. She was sitting in the backyard, crying. Jete and Mike were there, looking lost. None of us really said much. After a while, DJ decided to come back to my parents' house with me. I said goodbye to Jete and Mike. I fully expected that to be the last time I saw them. Why would they have any reason to see us anymore? Without Jeremy, there would be no group. The nucleus was gone.

The next day, we went back to the apartment to help DJ get his things together for the funeral. Jete and Mike came up to help. It felt strange to be there without Jeremy. But at the same time, we felt closer in our grief. No one on the outside could understand what we were going through like the five of us could.

DJ wanted to sleep in the apartment until she was able to pack everything up to move out. I offered to stay with her the first few nights, and Jete insisted on staying, too. He slept on the floor and let me have the couch. We talked in the dark. He told me that he and Jeremy had a half-kidding talk a few months before he died. He made Jete promise that if anything ever happened to him, Jete would look out for DJ. He knew Jeremy wasn't serious, but he intended to keep the promise anyway.

The wake and funeral were hard. We gathered in a huddle, the remaining five, for a good part of those days. At the funeral, Jete and I hugged and cried. He had been best friends with Jeremy for six years, and I had barely known him for two. To me, Jete had suffered the greater loss, yet somehow, I felt like he was comforting me.

As the weeks went on and DJ got back on her feet, we spent more time alone, or talking to each other on the phone. I got to know him more than I ever did in our days of "hanging out". Every time one of us needed something, he was there to help. I started to realize that he was always like that. He's the kind of guy who is constantly there when his friends need him. He's the first to offer to help, and the last to accept it.

We hugged at the end of every visit. There was something amazing about his hugs. Whenever he hugged me, I felt ... whole. Like I had been waiting for them my entire life; I just didn't know what was missing until that very moment.

I eventually confessed my feelings, he reciprocated, and blahblahblah happily ever after. Well, happily so far. And I hope, ever after.


The last time I saw Jeremy was two days before he died. We all ran into each other accidentally and had an impromptu group gathering. We hung out in the parking lot of the convenience store where DJ worked, waiting for her to finish her shift before heading to IHOP. Jeremy sat in his car with the door open, eating Twizzlers, sharing them with strangers. He blasted the car radio. We sang The Summer of '69 together.

I heard that song today. It still reminds me of him.

Oh when I look back now
That summer seemed to last forever
And if I had the choice
Ya - I'd always wanna be there
Those were the best days of my life

This month marks nine years since Jeremy passed away. The brief time I knew him is now a small blip on my timeline. But knowing him has changed my entire life. I would absolutely not be where I am today if it weren't for him. I would not have met Jete, married him, or had my children if he had not been in my life.

His death made me look at the world in a whole new way. Jeremy was one of those people who was never afraid. He would try almost anything, and enjoyed every minute of his life. If he, the most lively person I had ever met, could pass away so young, the same could happen to me, my friends, my family. I would constantly think, "If I died tomorrow, would I regret not doing this?"

I had the courage to tell Jete how I felt - something I would NEVER have done in the past - because of the example Jeremy set. I was afraid of ruining our friendship, of rejection, of looking like a fool. But I kept thinking - if I don't do this, what might I be missing out on? I didn't want to waste even a minute of potential happiness.

Jeremy lived a short life. But nine years after his death, he still puts a smile on my face when I think about him. My life was changed incredibly - for the better - from knowing him. I will be a lucky person if someone can say the same about me someday.

Man we were killin' time
We were young and restless
We needed to unwind
I guess nothin' can last forever - forever, no

And now the times are changin'
Look at everything that's come and gone
Sometimes when I play that old six-string
I think about ya wonder what went wrong

Standin' on your Mama's porch
You told me it would last forever
Oh the way you held my hand
I knew that it was now or never
Those were the best days of my life
Back in the summer of '69

Tuesday, November 15, 2005

A Whole Bunch of Nothing

I've been lacking motivation in all areas of life lately. I've got dozens of prizewinning entries for you to read. Problem is, before you can read them I've got to find the time and energy to get them out of my head.

In the meantime, a few updates of those things I've left hanging...


Ethan's Story - I've been trying to work on "Part 13" for quite a while now. Basically, ever since I wrote Part 12 back in August.

(I know what some of you are thinking. "It's because it's number 13!" But let me clear something up - 13 is one of my lucky numbers. DUH. It's prime! It's very special!)

I had help with the first 12 parts - our medical records. I have copies from my first prenatal visit through his release from the NICU. I'm thinking of ordering the records from all of his specialists too, just for my own reference. Having them will help me piece together the memories that are fading four years later.

No matter what, I will continue his story. It'll take a while, but I still have a lot to say.


The Stander Saga - We finally got the elusive stander a couple of weeks ago. I called to check with the salesman one more time, to see if the paperwork was still dragging, and he said, "Oh. It's here, waiting to be delivered." Apparantly, someone in the office called Cigna to do the secret-handshake (pre-authorization) process. She was told, "That doesn't have to be pre-authorized. Just order it."

When he told me this, I laughed out loud and said, "I hope she got a name when she talked to Cigna!" Luckily, she did. I won't believe it until I see the statement marked "paid" with my own eyes.

We still have to set it up and get a physical therapist's instruction on how to use it. I'm antsy to start. It took three months and ten phone calls leading in different directions to get the damn thing. I fully intend to use it until it falls apart.


Ethan's School - I guess you could say he's homeschooled. I haven't called the teacher in a few weeks. I haven't been hounding people. I just stopped the whole process. We don't want him to go there. Plain and simple.

We're trying to figure out where to go next. Should we pay for therapy out of pocket? Should we send him to private school, and if so, where? Should we find a better public school system? Does one exist?

Right now, we're comfortable with our decision. Flu season is here, but he's been healthy at home. The holidays are coming, and he'd be out for weeks anyway. We'll figure things out soon enough.


CG's Speech - CG passed his hearing test, which was no surprise. We had a preliminary meeting with L, the speech therapist, last week and scheduled his full evaluation in a couple of weeks.

While L was here, she mentioned how he keeps his tongue forward during most of his babble. This was something I had noticed myself, and it was nice to have some professional validation. She gave us a few tips to start using and said it could be an immature reflex or an issue of low tone in that area.

He has to be at least 5 months behind developmentally to qualify for services. He's about 19 months and uses no words, so on paper, I'd think he qualifies. But while his communication level is behind, his understanding of language seems normal, so nothing's definite. We'll know more after the evaluation.


The Actuarial Exam - I got official word that I failed the Test. I already knew this, but I needed confirmation to move on. I got the "Fail" notification this weekend, and today I got my grade. On a scale of 0 to 10, with 6-10 being passing scores, I got a 1. That's right. A ONE.

I'm not ashamed. I'm actually a little proud - at least a I didn't get a zero. That means I got some problems right! And I'm sure I'm in good company, considering only about 40% of all candidates passed. But I know I failed the test because I failed to prepare. I could have been one of the 40% if I had studied more. And I will be. Next time.

Yes, I really am going to take it again. They've scheduled four tests for 2006 instead of the two they've done in the past. The first exam is in late February. I'm trying to decide if I can reasonably be prepared by then, or if I should wait until the second exam in May. Ethan's having another surgery in the spring to remove the steel plates from his hips, so that may affect my timing. I'll keep you posted.


The Insurance Decision - We got rid of Cigna. As of January 1st, we're going back to Blue Cross. I'll still have Cigna for prescriptions, there's no getting around that. But for everything else, I'm getting out of their head game.

Like I said before, I won't pretend that the new plan is going to be Happy Fields of Flowers or anything. Insurance sucks everywhere. But this past year, I've had enough. I need to try something else.

The deciding factor for me is that under our current plan, we pay 10 to 30% of all medical bills. Under the new plan, everything is covered after our copays. With another surgery coming up and new seizure therapies, getting rid of those extra bills is very tempting.


So. There you go. That about sums up the last few weeks of my life. Fascinating stuff, isn't it?

Tuesday, November 08, 2005

The Ring Was Nice, Too

A coworker got engaged this past weekend. Her boyfriend took her out to a park on the water one of the most gorgeous days of the year. He started telling her how much he has loved her since they first met, then got down on one knee and proposed.

Apparantly, he set up a secret dinner with her mother last week. He drove to her home and picked her up. He asked her permission over dinner and a two-hour conversation.

Her father passed away a few years ago. He told her that, in planning this, he knew he wanted to propose outdoors. In some way, her father could be there, watching.

I was SOBBING in her office as she told the story. Not a pretty thing to do at work, but I couldn't help myself. I'm such a sap. It's weird how you can be so drawn in to someone else's happiness.

I love Love.

Saturday, November 05, 2005


I'm loving this warm weather we've been having. (I'd call it Indian summer, if I hadn't heard that it was a racist term. Although Wikipedia says it may have less evil roots.)

Jete worked OT again today. I took the boys outside for a couple of hours for some fresh air. Of course, I had a completely selfish reason to do that - to wear them out. It seemed to work. Around 1:30, CG went down for his nap without a fight. Ethan also passed out around then, so I had almost 2 hours in a row to myself. I washed some dishes and did some basic straightening up, then played on the computer for a while. Blogger was kind enough to eat a post, but otherwise, it was relaxing time.

What a difference a week can make. Last Saturday was cold and grey and the boys were whiny and no one wanted to nap but me. I was not in a good state. A little sunshine makes all the difference for everyone.

It's going to be a long winter.


This week, we went to the RMV to continue the process of getting handicapped placards for Ethan. A month ago, we filled out the form and sent in his certificate of blindness, and in return the RMV sent us another form. We had to bring this down to a local branch to get Ethan's picture taken.

Unfortunately, Jete had been holding onto the form for a few days, and I hadn't read it in detail. When we arrived at the photo desk, the woman asked us for Ethan's ID. When I said, "Huh?" she - both politely and curtly said - "Something that proves that Ethan is Ethan. Didn't you see where the form said to bring proper identification?

I admitted my mistake and searched through my purse. Finally, I offered her Ethan's insurance card. She didn't seem pleased, but it was the only thing I had with me that had his name on it. I used to carry his Social Security card, but Sete warned me that someone could steal my purse and his identity all at once.

Finally, the woman begrudgingly accepted that we probably weren't trying to scam the system. But it made me wonder - how does having his Social Security card prove he is who he is? I could have brought his brother's, or cousin's, or anyone else's. How many four-year-olds have photo IDs? I wanted to whip out my mini photo album, showing her pictures of Ethan through the years. "See! Here he is with a dorky Santa hat on. He really is our kid!"


CG had his 18 month checkup last week, and I mentioned my concern that he still isn't speaking. He babbles and uses one sign (for "more"), but doesn't have any real words. He doesn't even say "Mama" or "Dada". If he's upset, he whines a long "mamamama-mamama", but to me, that doesn't really count.

At his 15 month checkup, the pediatrician said we could technically wait until he's two before contacting early intervention. But after three months with no real improvement, I'd rather not wait. This time, we saw a different doctor and she agreed it was probably time to get some help.

I called L, the speech therapist Ethan had through early intervention. She was our favorite of all the therapists and had a special bond with Ethan. She recommended getting a hearing test first, to rule out anything anatomical. So this week have the hearing test and then a paperwork visit from E.I.

I'm pretty sure therapy will make a big difference. He does seem to understand us most of the time, and will follow commands like, "Point to your ears." (Of course, things like, "Don't steal your brother's blanket." tend to get ignored.) But he won't repeat words and sounds, and he keeps his tongue between his teeth most of the time. We'll just leave it to the experts to explain why.

Sometimes, I wonder if he is using words and, with my poor attention to detail, I'm just missing it. For example, he has a love/hate relationship with the vacuum right now. Everytime you enter or leave the room, he feels the need to show you where it is, and he yells, "Bah!" or "Vah!" (I can't tell which). Maybe that's his attempt at "vacuum".

Although, anytime a bus, truck or motorcycle drive by the house, he also yells, "Bah!" Maybe he's trying to say "bus" those times?

Or maybe he's trying to say, "Bah! I hate all these loud things!" If he takes after his mother - who used to watch fireworks from INSIDE the car, ears covered - it's entirely possible.

Tuesday, November 01, 2005

Let's Just Go Dutch

Recently, over at Darn Tootin, I put my two cents in on a discussion about the well-known "Holland" passage.

(Well. I should clarify. Well-known to me. And maybe a bunch of parents who have special needs children. And some other folks too. But not well known to Jete. If you asked him about the "Holland" passage, he'd probably think it was like the Panama canal or something.)

For Jete and any of you others who live under a rock, "Welcome to Holland" is an essay written by Emily Perl Kingsley explaining what it's like to have a child with a disability. If you've never read it, you can read it here. Even if you have read it, go read it again, just as a refresher. Go on. I'll wait.


All set? Ok. Moving on...

Shortened, the discussion at DT was about the opinions and advice of outsiders and how people react to a parents' choice of words regarding their child. Namely, calling them "special" versus calling them "broken". Several of the comments got down to "anti-Holland" sentiment. I perceived some people as saying that "Holland" is a steaming pile of crap and anyone who believes in that sort of thing is a big, dumb stupid-head.

Or something less juvenile. (Cut me some slack. It's late and I'm still on a sugar high from trick-or-treating yesterday.)

This discussion hit me at a particularly bad time. I've been feeling unsure of my parenting skills lately, and I've been beating myself up for not doing Enough for Ethan. Whatever Enough is. While my gut tells me we're doing everything we can for him, I still have doubts. I think, "Someone else would do a better job at this." Whether or not it's true, it makes me extra sensitive to people judging me from the outside.

With my own doubts compounding, I got a bit defensive and put a comment out there, which, I'm sure, immediately alienated me from the cooler, better writers who read this site. Basically, I wanted to know where all the Holland hatin' was coming from. I was starting to feel like I was SUPPOSED to hate the passage, and just by finding something good in it, I became a Bad Parent. One of those parents who uses the TV to babysit their kids, and feeds them Chef Boyardee for dinner, and lets their daughter wear mini skirts in the third grade. Who doesn't fight to fix their kid's problems, but instead gives up and uses labels to patch what ails them. A parent who just doesn't give a damn. I wanted to point out that there some parents who can appreciate "Holland" and still fight for our children.

In return, a new friend commented on my site and pointed me to this article to explain why she doesn't like the Holland essay. My first thought was, "Wow. That Cornfield lady is a much better writer than I am." And I could totally relate to her opinions. It's an excellent article, and she defends her position well. It didn't change my opinion, but I could see where she was coming from.

My second thought was, "Wow. That Cornfield lady is a hell of a lot deeper than I am."

See, I'm no dummy. I'm pretty smart. Got a 5 on the AP Calculus test. But when it came to my literature courses, I did slightly less well. I never really excelled at that whole "ripping literature to shreds" bit. The part where you take a 3 line poem and write a 10 page paper analyzing every. detail. inside the author's mind at the time they wrote it. I was the girl who wanted to say, "That was a really good poem. I think it's about a bird, and how a bird can represent hope. The end."

My experiences with "Holland" were just about that deep. I read it for the first time and thought, "Huh. That's a pretty good analogy. I like that." (I'm guessing analogy is the wrong word. My resident English expert - E? What's the right word? Metaphor?) That was it. End of analysis.

From the Cornfield article and the comments at DT, I'm guessing a lot of parents had completely different reactions when they read it. It sounds like it is partly tainted by the delivery. Passed out by people with no experience in the matter who thought, "Look! Have some sunshine you depressed parents! Now cheer up!" I can see how that would irritate someone.

I honestly can't remember where I first read it. Maybe on someone's website, or maybe I caught it in a magazine. Or maybe an acquaintance, whose special needs brother recently passed away, gave me a copy. All I know is that it wasn't thrust on me in the midst of my grief to try to make me smile and suck it up.

Also, I thought of the audience when reading this. The essay is meant to be directed toward people who are NOT parents of special needs children. To give outsiders a small glimpse of what the inital few days/weeks/months do to a parent. To explain that we are not just dealing with the worries and fears for our child, but with the loss of everything we thought parenting would be like. Everything we had imagined for ourselves and our child; their birth, their homecoming, first smiles, first steps. It's a readjusting of expectations.

Obviously, this essay doesn't apply to all parents with children who have special needs. It isn't meant to be a One-Size-Fits-All t-shirt. But it also doesn't only apply to those who have severe needs, like Ethan. I would imagine the parent whose child has "only" a hearing impairment, or "only" a learning disability must go through a similar process of grief and adjustment.

I didn't write the essay, so I don't take it personally if you hate it. I just take it personally if you say I am an idiot for liking it. And I don't like it because I stroll through the tulips every day with a stupid grin plastered on my face. I don't want to come across as if I'm happy with Ethan's situation. Lord knows I'm not. I'm bitter as hell. I hate everything about this. I'm angry a lot of the time. But I've redirected my anger. I'm not angry at Ms. Kingsley, or doctors, or well-meaning but ignorant family members. I'm angry at the unknown, the "why" for which we'll never have answers. Mostly, I'm just sad. And I think quotes like this convey that pretty well:

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

And I think it's very true - if I wasted all of my energy being Angry, I'd be losing energy that could be spent enjoying Ethan. If I spent all my time Sad that he will never walk or talk, I'd miss out on his beautiful smiles and joyous laughter.

But I know I'm unique. I'm very lucky, as I've mentioned before. I have a wonderful partner, awesome friends, and a terrific extended family who help us out whenever they can. There are single parents out there whose children have far less needs that have a rougher time of it than I am. So I'm sure they'd have a lot to say to me about appreciating life in the face of so much adversity.

The thing is, I never read too deeply into the "Holland" essay. I didn't expect it to be the Ultimate Guide to Special Needs Parenting. It was a short, simple, metaphor. Obviously, there are flaws to the metaphor. You can't simplify something so complex, so painful, so monumental, in a few short sentences. But I think it was a good effort, and I got her point. I could relate. And really, isn't that what writing is all about? Relating to your audience?

My point is, I liked the Holland piece because of it's simplicity. It made sense to me. Because, even though I've rambled on for three dozen paragraphs, I like a clear and simple message.

Honest. I do.