Monday, August 29, 2005

Never Put Off Until Tomorrow What You Can Do in a Couple Weeks

People. I know I need help. I have to deal with my issues. I wonder... are there support groups for people with problems like mine? Maybe I should start one.

Hi, I'm Mete and I'm a Procrastinator.

Problem is, if there were support groups, no one would ever go. I mean, honestly. I'd keep saying I was going to attend a meeting, but then the time would come and I'd come up with a hundred other things I'd rather do.

Maybe I'll try self-help. Lists always keep me focused at work. If I make a list of all the things in my life I'm avoiding, maybe it would make me more motivated to get them done.

Here are a few:

1. Make doctors' appointments - This is never a long as the appointment is for someone else. When it comes to my own doctors, I conveniently postpone. I got a card from my ObGyn, reminding me it's my favorite time of year: time to schedule my next visit. I then remembered that I haven't seen my PCP since before I got pregnant with CG. Over two years ago. Not good. (But! I have been to the dentist. That has to count for something, right?)

2. Organize - I own clothes I haven't worn in years. The house is full of clutter. There's no room for new pictures on my digital camera, because I never want to delete any. The worst is my Outlook inbox at work. It is full. It's more than full. I'm living on the equivalent of an email overdraft account. As of this afternoon, I have exactly 5,368 messages in my Inbox. They date back to 2002.

3. Study for the actuary exam - Mmm. Yeah. The test is in less than a month. Four weeks. Have I studied at all? No. Have I even opened a book? No. I did print out a few pages from the practice test, but I think I threw them out when I was trying to be super-organized last week.

4. Register Ethan for school - Well, this isn't completely put off. I did call last week and set up the appointment. It's actually tomorrow afternoon. Problem is, I need to reschedule. Seems I "forgot" we need his birth certificate to register him, and I haven't ordered that yet. Plus, I have to dig out the deed to our house and three other forms of ID to prove we're actual residents of this fine city. (Please. Like I'd make that up. If I was going to lie about where I lived, I'd pick a nicer place with a better school system.)

5. Send thank you notes - I'm HORRIBLE about this. Terrible. I always delay thank you's until it gets to the point where it would actually be insulting to send one. I ordered special thank you cards after CG's first birthday. They were preprinted with a picture of him. All I had to do was address and mail. They're still sitting on my desk. Four months later. Maybe I'll just save them for Christmas?

6. Review the pile of medical bills - And when I say "pile", I mean PILE. There are dozens, sitting, unopened on the counter. I know that they're waiting for me. I'll get around to them when I'm good and ready. I told a friend abot them, and she said, "Aren't you worried about them?" I laughed. I can't be worried about them. Gas bills, electric bills, mortgage bills. Those things I worry about. I don't pay them, they shut off the service. They take my house away. But medical bills? They aren't going to undo Ethan's surgery. For once, they can be patient.

Heh. "Patient". Get it? See, laughter is the best medicine. I feel better already.

Now off to bed. I'll get to that other stuff later.

Thursday, August 25, 2005

Stayin' Alive

When I was at the peak of my Anxious Phase, I would have panic attacks anytime I did any physical activity. I would immediately assume that I had finally induced IT. The Heart-Attack-I-Always-Knew-Would-Happen-But-Nobody-Believed-Me.

Then I'd finish whatever activity I was doing and realize: "Huh. I'm not dead yet. Wow. That's weird."

Every day, I forced myself to go for a walk at lunch. Despite my fears about exercise, I really wanted to get in better shape. Exercise, though terrifying and, well, NO FUN AT ALL, would help keep me alive. I had to do it.

In our old building, I worked on the fourth floor. I started my walk on the first floor. I took the seven minute round trip view of each level then up the stairs to the next. Each floor was actually two flights of stairs from the next, so this was a decent workout for a semi-out-of-shape girl like myself.

By the time I finished floor 3, I was pretty tired. I'd look in dismay at the stairway door. Every day, I would think of reasons I shouldn't take that last trip up. I could never come up with a reason good enough.

My mind is mean to me. To make life interesting, I Always, Always, Always had a panic attack right on the landing between floor 3 and floor 4. I could count on it like clockwork. I'd climb that first flight of stairs and immediately, it would start.

Am I breathing okay? I don't know. I feel winded. Am I short of breath? Am I dizzy? I'm sweating quite a bit. What if I fall right down on these stairs? What if I die right here? I shouldn't have done this. I have to stop and rest. I'll die if I go up that last flight.

You'd think after 2 or 3 dozen times, I'd sense a pattern. That I'd realize - DUH - I never did have that heart attack I was expecting. And - HELLO? - the odds of me "starting to die" at the exact same spot every single day? Were astronomical, to say the least.

My anxiety-driven days consisted of frantic Googling about signs of a heart attack or stroke. In doing so, I learned that your exercise level was just right if you had enough breath to talk but not quite enough to sing. This was useful information.

As most people with panic disorder do, I have all kinds of wacky techniques to get me through my attacks. I created one to get through my daily Exercise Panic. When I would start freaking out, I would talk to myself. Out loud. Quietly, but out loud. If I could speak whole sentences, then that would force me to admit that I was okay.

My mantra became a regular part of my walk. As I opened the door to the stairs from the third floor I'd start talking. I'd just repeat the same thing over and over again, under my breath. Just loud enough to silence the voices in my head:

"I'm still alive. I'm still alive. I'm still alive."

I'd reach the fourth floor and walk back to my desk. I'd keep repeating it the whole way.

"I'm still alive. I'm still alive. I'm still alive."

And I was. I felt better just saying it.


The past few weeks have been crazy. Work is insane. My home life is hectic. Every moment I'm running from one place to another. I'm always rushing. To finish a report, make dinner, take the kids for a walk. There is stress at work, tension between Jete and I, worry over sick family members, guilt over the kids. I've got a To Do list longer than I can keep track of, and time is racing away from me.

I don't seem to have time for anyone. Jete, the kids, my friends. Myself.

But I have to keep going. Things will slow down eventually. I'll be able to spend time with my friends, talk to people, play with the kids. Go to dinner with Jete and not have to rush back to relieve the sitter. Soon. But not soon enough.

In the meantime, I'll just go with the flow. Keep my head up and do my best. That's all anyone can do. I'll just keep reminding myself:

I'm still alive. I'm still alive. I'm still alive.

Saturday, August 20, 2005

Miss Hypocrisy 2005

Thursday afternoon, conversation with my co-worker:

C: Mete, I have No. Life.

M: Why not?

C: Because. I'm always here.

M: Well, why don't you get out of here then? Go out. Have a life.

C: That's easy to say. But I can't. My job doesn't allow it.

M: You have to remember - this place doesn't give a shit about you. You could drop dead at your desk tomorrow, and you'd be forgotten in about a week.

C: (silence)

I don't think she took it too well. The truth hurts.

Which makes me wonder - what was I doing sitting at my desk on a Friday night? Working on a report for a Monday morning meeting? Until 7:48 PM? Hmmmm?

Good thing she wasn't around to notice. I might have lost some credibility.

Friday, August 19, 2005

Adventures in Code Cracking, Part 2

The latest round in "Insurance Wars": The Mother Strikes Back.

The doctor who presribed Ethan's stander, Dr. JJ, called me yesterday. He got my message, but he was confused. What was this "procedure code" I was asking for?

I explained what AMANDA had told me and he seemed baffled. "This isn't a procedure. This is a piece of equipment. I could give them a 'procedure code' if I was actually performing one. I don't have any code to give them." He asked if he could call someone at Cigna. Based on past experience, I didn't want to send him through the maze of phone prompts blindly. I told him I'd try again, and hopefully they'd call him directly if they had questions.

"Try to get someone who'll give you a last name," he said. I had to laugh. Last name? People in Cigna-land don't have last names. Why would they need them? They're droids.

So I called Cigna again. Call number 3. JULIE.

JULIE asked for all of my information again. Apparantly, the call history didn't document much. I explained what AMANDA had told me and that my doctor didn't know what a procedure code is.

"Well that's beside the point. We still need the procedure code."

This is the part where I tried to explain to JULIE that, hello?, if my doctor doesn't know what it is, how is he going to give it to her?

JULIE put me on hold while she called Dr. JJ. After a few minutes she came back on the line.

"That doctor... he was really starting to get rude with me." I wanted to laugh at her, but I thought that might be over the line. Instead, I just said, "Oh?" No sympathy here JULIE.

"He kept saying that he didn't have a procedure code, and I said 'We need one anyway!' and he said we'll have to get it from the place that provides the equipment, not him. I don't know who that doctor was. But. He was very rude!"

I tried to reign JULIE in. Big picture, JULIE. My doctor doesn't have the code. Who has it?

"Well, you must have to get it from the company supplying the equipment."

Big. Sigh. Then I started. If she thought Dr. JJ was getting rude, I can only imagine what she thought of me.

"So JULIE, where does this put me? Because my original phone call with Cigna started out this way. A month ago. Someone told me my first step was to find out who supplies the equipment. They were going to find out and then get back to me. A month ago.

I'm going to ask you the same question I asked two days ago: 'What do I have to do to get this stander for my son?' AMANDA's answer was to get this code from the doctor. Obviously that isn't working. So what do I have to do??"

JULIE said I had to call the different Cigna providers and find someone who carries the equipment and order it from them. They would have the code and could send it to Cigna.

But JULIE, "I thought this equipment might not even be covered? Why would I order it if you might not cover it? Then I'll have to pay for it myself, won't I?"

JULIE thought a minute. "Yes, I guess that's a bad idea. You probably shouldn't order it."

Good thing one of us was thinking.

She then started reading me provider names and phone numbers. I finally stopped her after the eighth one and asked how many I was expected to call. She said, "That's up to you." Yeah. Right.

I tried to explain my past experience to JULIE. When we tried to order Ethan's special stroller, I was forced to call all of these same numbers, and none of them carried that type of equipment. I ended up getting an out-of-network place - who we were trying to use the whole time - authorized. She didn't want to hear it.

"Just because the name says something else doesn't mean they don't have it. They might be able to order it." Fine. So I humor JULIE and say I'll call them all.

I call every place on the list. I explain what I'm looking for. Every. single. person. says, "What's that?" I explain again. Can they order it? No.

Once I've exhausted the entire list, I call Cigna back. Number 4. JANELLE.

My first question to JANELLE is - Do I have a case manager? Someone I can deal with one-to-one? Every time I call, I get a different person and a different story. JANELLE thought for a minute, and finally said, "Mmm. No. You don't. Sorry!"

JANELLE was awfully cheery about all of this.

So I give JANELLE the short version of the story. I explain that I called all of the places JULIE told me to call, but no one had it. I know of a place that does carry it. But they are out-of-network. What now?

JANELLE tells me that I need to talk to Intercorp, the pre-certification area. They can get me authorized to use this other dealer. Fine. She transfers me.

Cigna representative number 5. JAMES.

JAMES listens to my story and says, oh, no. I am in the wrong area. I need to talk to someone in the Medical Department. He'll transfer me. Before he transfers me, I shout, "No! Wait! I was just transfered from the Medical Department!" He insists that's who I need to speak to .

I try to explain JANELLE's reason for transfering me to him. "So, see? I need this pre-certified. That's what you do. You're the precertification department!" JAMES explains that no, they only deal with medications, not equipment. He has to send me back to the Medical Department.

By this point, I'm starting to wonder if this is everybody's first week on the job or something. Because clearly, none of them know what they're doing.

My call is picked up back in the Medical Department. Number 6. FRAN.

I quickly explain to FRAN that I have been passed around a lot and I'm getting tired of it. I just want to get this equipment. She promises she won't pass me around. She's actually pretty nice about it.

FRAN listens to my story. Again. She asks if I have called Gentiva yet. They are the main equipment company contracted with Cigna. I vaguely remember speaking to them in the past, but not about this. FRAN tells me that they are the ones I should have called in the first place. Nice that no one else knew about this.

FRAN puts me on hold while she calls Gentiva. She gets back on the line and says that Gentiva can get the equipment. We have to do the following steps:

1. Dr. JJ has to call Gentiva and order the equipment
2. Dr. JJ has to send Gentiva the Medical Necessity Notes.
3. Gentiva will forward the Medical Necessity Notes and the procedure code - Ah! - to Cigna.
4. Cigna will review the Medical Necessity Notes. This could take up to 15 days.
5. Cigna will decide whether or not this piece of equipment is actually "medically necessary".
6. Cigna will notify Dr. JJ and us about their decision.
7. If by some miracle they approve it, then we order the equipment.

After hanging up with FRAN I called Dr. JJ back and left another message with his new instructions. I haven't heard back from him. Yet.

My face was practically purple from frustration. I was on the phone for almost two hours. Only to find out that it will still be at least another couple of months before we get this stander.

That's if we get it at all. Sigh.

But, oh! Good news! If it gets denied, we can always go through the Appeal Process!

More fun with Cigna! Yippee!

Wednesday, August 17, 2005

Because We're Dorks. That's Why.

Exhibit A:

(Jete is play-wrestling with CG. He pins him on the chair. CG struggles to get up.)

M: Let him go. He wants to get up.

J: No. He's the prisoner of Az... ka.... (trying to remember the name - neither of us read the books) ...ban.

M: The prisoner of what?

J: Ax-abam.

M: The prisoner of Ask-Yvonne?

J: Ass-kiss-Ann. Whatever.

Exhibit B:

(Talking about the new Dukes of Hazzard movie, blah blah blah, it looks like it sucks.)

J: Jessica Simpson? Daisy wasn't stupid on the show. She was sexy, but smart too. And she should have stayed a brunette.

M: And, what were they thinking? Seann William Scott? He's no Bo. They've made the Duke boys into clowns. They weren't the clowns on the show.

J: I know. They were the clever ones. They might have been back woods, but they weren't backwards.

M: Did you read that somewhere? Or did you just make that up?

J: I just made that up right here.

M: You did not.

J: I did. (points to his head) Not just a hat rack, you know.

Exhibit C:

(In the car, we notice my keychain of beads spelling "METE" has broken.)

J: You're losing all of these. (picks up the "T" and "E" beads off the floor)

M: Oh, man. It's ruined.

J: No, look. The "M" and the "E" didn't fall off.

M: Oh! Don't you get it? "Mete" is gone - and all that remains is "Me"!

J: Um. Yeah.

M: That's really deep! Don't you think?

J: Uh-huh... So. Any plans this weekend?

M: Jerk.

Tuesday, August 16, 2005

Is "JERKS" the Five-Digit Code?

I hate Cigna. I've had nothing but problems with them since Jete's employer changed last year. HATE. HATE. HATE.

I just called to check on the status of Ethan's giraffe stander. His physiatrist prescribed it last month. I had called and spoken to someone in Cigna last month. The way I thought we left it, someone was supposed to be determining which supplier we needed to go through to get it. She said they would get back to me. I haven't heard from anyone since.

Of course, STUPID mother that I am, I didn't write down who I spoke to. Actually, I did, but I think I threw that scrap of paper away.

I'm in the slow learners' class. Sigh.

So, I go through the 75 prompts on the Cigna phone system. I verify my phone number, social security number, birthday and shoe size. Finally, I get to speak to a human being. AMANDA. I wrote her name down in capital letters. I won't be forgetting this time.

I explain the situation to AMANDA. She checks the call history. "Yes, it says here you called on July 7th. But you were only checking what your benefits were."

Silly Amanda. I know my benefits. If there is anything in the world I'm sure of, it's what my insurance plan covers.

I explain that I was told someone was supposed to get back to me, blah blah blah. She sounded puzzled. "That wasn't us. I don't have any record of that." Okay, fine AMANDA. Clearly I had been transferred somewhere else. But - bottom line - I need this stander. She put me on hold for a minute and came back.

"Do you have the procedure code?" The huh? I don't even know what that is, I explained.

She then proceeded to go into a five minute explanation of the five-digit "procedure code" that we need to get from Ethan's doctor. Then they'll review this procedure code, and the predetermination, and the justification. And then, they'll tell me if the equipment is covered or not.

This got my attention. "Yes, but I have full durable medical equipment coverage with this plan. Isn't everything covered?"

"Yes, ma'am. You have full coverage. But we still need to decide if the equipment is medically necessary."

I guess I got a little sarcastic at this point. "Do you get a lot of doctors prescribing equipment that ISN'T medically necessary?"

"Yes. Yes we do." She was silent for a minute. I took a minute to speak. "So what does this mean?"

"We have to get the procedure code, and then we have our own doctors and a team of people who will review the request. Then they'll tell you if we'll cover it or whether you should seek ... alternate ways of handling your ... issue."

Just like his two hour ambulance ride home from the hospital in a full body cast, I suppose. That Cigna decided wasn't "medically necessary" and refused to cover.

Now I was getting red in the face. I could feel it. "Ok. Fine. Just tell me what I need to do. What is my first step to get this stander for my son?"

"You need to call the doctor and get the procedure code."


So I've called the doctor, and left a message. Hopefully he'll call back soon, cause it will take ages to get the stupid thing, even if, by some miracle, it's approved.

Which it won't be. I know it. I may be too stupid to write names down. But I'm not that stupid.

Monday, August 15, 2005

Ethan Part 12: Home at Last

Parents to arrange follow up neuro & eye exam in 1 month. Basic baby care reviewed. Discharged to parents.

- Ethan's medical record, 1 month old

The days in the CCN seemed to drag more than the NICU days had. Ethan was healthy, from all we could see. He was eating voraciously, gaining weight, and needed no medications. Every day we visited for hours, and every day we asked: "When can we take him home?" The doctors continued to be cautious. They didn't want to discharge him too soon, just in case he developed more problems. It was driving us crazy.

By the time he was 3 and a half weeks old, he had passed the magic "5 pound" mark. We thought it was time for him to be discharged. But then a day went by. And another. The doctors just wanted to be extra safe. They weren't quite sure he was ready yet.

One Sunday morning we went to the hospital very early. We hoped to meet up with the doctor on call, and sell our case that Ethan was ready to go home. The pediatrician on call from the group was Dr. B, one of the doctors that we hadn't met yet. When he saw us on our way in, he looked at Jete and smiled. "Hi! What are you doing here?"

Jete recognized Dr. B and introduced me by his first name. Coincidentally, he was a family friend who had known Jete for a few years. Since Jete hadn't learned all the doctors' names, he hadn't realized that Dr. B was one of Ethan's pediatricians.

Jete told Dr. B that Ethan was our son. He explained our frustration, that we were ready for him to go home and we wanted to know when that could happen. Dr. B seemed comfortable once he realized he knew us. He said he'd review Ethan's chart and see what he could do.

We went to visit with Ethan while Dr. B reviewed the chart. He came to Ethan's bedside and put the chart down. "Are you ready to take him home?" We both nodded. "Well, I think he's ready. You can take him home today."

We were shocked. We didn't think he'd discharge him so quickly. On a Sunday. We thought there'd be paperwork, some other red tape holding things up for a few more days. We were so used to waiting, we couldn't believe it was as simple as that.

He explained that everything seemed in order, that Ethan was stable and obviously thriving. He could tell we were dedicated to doing all of the care ourselves when we came to visit him. There was no reason we couldn't do all of that at home now.

There were a few loose ends to tie up. The hospital required a car seat test for all babies leaving the NICU/CCN areas. And of course, there was a more important task to complete. Ethan still hadn't had his baby pictures taken. We told the nurse, and she made a call to the photographer to come up as soon as possible.

Jete and I headed out. We got a quick lunch, knowing this would be the last meal we would eat together, just the two of us, for quite a while. We ran home and got Ethan's car seat, still packed away, and an outfit for his first official pictures.

When we got back to the hospital, the photographer was waiting for us. She was very nice, and took almost a dozen different shots. Ethan cooperated throughout the whole experience. He kept his eyes wide open, staring at the camera, never crying.

The car seat test involved strapping Ethan into his seat and hooking him up to the oxygen monitors. If at any point the monitors went below a certain point, it indicated he wasn't ready to travel yet. We strapped him in, and had to use an extra towel to pad his head. He looked very tiny once he was in the seat. He had seemed so big to us. Then again, compared to how he started, he was.

Ethan passed the test with flying colors. He actually napped comfortably in the seat, which we took as a good sign. Finally, the nurse turned off the monitors, looked at us, and said, "He's all yours."

The nurses handed us tons of papers to take home. The NICU number. The pediatricians' number. The breastfeeding hotline. Pamphlets on post-partum depression. Shaken baby syndrome. Instructions to schedule appointments with all of the specialists in the next month. I didn't care about any of it. I shoved the papers in a bag, and packed the rest of Ethan's onesies and blankets from below his bed. I grabbed the blue teddy bear we had placed in the corner of his bassinet. Soon, this bed would belong to someone else's baby.

Jete put Ethan's hat on and covered him snugly with blankets in his seat. We said goodbye to the nurses. It seemed like everyone was wishing us well. They cut off the hospital band from Ethan's foot, and cut the matching bands from my arm and Jete's arm. The formerly cross secretary at the main desk smiled as we left the unit. The doors closed behind us. There was no turning back.

We walked to the front door of the hospital. It was snowing outside, so Jete went to get the car while I waited inside with Ethan on a bench. A woman walked by and recognized me. We had gone to high school together and she worked in the hospital. Was this my baby? I pulled the blanket down so she could see better. She oohed and ahhed, congratulations, he was very cute. I didn't explain where we were coming from. I let her assume we were just a regular couple taking our baby home for the first time.

After she left, I looked down at him, still sleeping. He looked normal. I wonder if she could tell what he had been through?

Jete pulled up and loaded Ethan in the car. I rode in the backseat with him. We didn't want him to be alone. I watched him for ages. On one level, I couldn't believe they actually let us take him home. Were we ready to take care of him by ourselves? Would he miss the hospital? Would he be afraid?

I looked out the window and tried to memorize everything. The snow, the cars, the people on the street. Ethan was exactly one month old today. His first mini-birthday. And he was finally coming home.


Wednesday, August 10, 2005

I Only Travel on Guilt Trips

Most mornings, CG is still sleeping when I leave for work. He wakes up, sees the babysitter (CS), and plays happily all day without even remembering that I exist. It's a little depressing, but a comfort nonetheless.

Yesterday, for whatever reason, he woke up early. He was apparantly crying when CS arrived (I was in the shower). She got him up and brought him in the living room. He cheered up. Then he saw me come out of the bathroom. He smiled huge as if to say, "Hey! Mom! I forgot all about you! Let's play!"

I said good morning to the two of them. Then I snuck into my bedroom and closed the door.

He started crying.

I had to get dressed, and I knew if I took him into the bedroom with me, I'd spend 17 minutes pulling every dangerous item in my room out of his hands instead of 3 minutes throwing on my clothes. I opted for dressing. When I finished, I snuck out of the bedroom into the bathroom to comb my hair. He saw me again and smiled. I shut the door.

He started crying again. Sigh.

I finished my morning pseudo-primping routine and moved quickly into the kitchen to make a bowl of cereal. He was at my leg in a flash, hugging my calf and crying.

If he could speak, he'd have been saying, "Why do you keep abandoning me? Don't you like me? Don't you want to play with me?"

To quote the Dixie Chicks: "Well, hello, Mr. Heartache. I've been expecting you."

I picked him up and made my cereal with one hand. I tried to lower him down once, and he started sobbing all over again. I stood by the counter and ate it quickly, spilling Rice Krispies all over the floor.

When I had finished gulping down my breakfast, I took him into the living room. He finally let me put him down and ran to his overflowing toy box. He came back to me holding Sheep in a Jeep. I read the book to him for easily the 900th time. He pointed to the tree outside the window. He lisped and screeched happy phrases that I couldn't understand.


He looked at me, very proud. I smiled.

I looked at the clock. I wasn't doing either of us a service by delaying any longer. I knew what I had to do. I handed him to CS and waved goodbye. I mumbled something about calling later to check in. He was sobbing hysterically when I left.

I got in the car and shut the door. I just sat there and sighed about 13 times. Finally, I started the engine and drove to work.

On the way to work, in the wealthy suburb I drive through, I saw at least a dozen mothers walking with their children. Pushing them in strollers. Riding bikes with them. I was feeling especially bitter. They didn't have to go to work. They didn't have to peel their child off their leg to leave them. I hated them all.

I felt so guilty. I kept thinking, the boys deserve better than this. Better than me.

Ethan doesn't know the difference if I'm there or not. Somehow, I can rationalize leaving him. He's just happy to be loved, fed and changed. He doesn't care who does it. But CS knows the difference. He knows that I'm leaving him. And he lets me know it.

I am constantly trying to salvage what little time we have together. I only see him 2 hours a day before he goes to bed. Weekends are for catching up on everything I couldn't do during the week. Our "quality time" consists of taking him to the grocery store with me, or letting him play with every plastic container he can find while I make dinner.

I wish I could give him a different kind of life. I wish I could stay home with him full time. I wish I had the mental strength to do it 24 hours a day, 7 days a week. To have enough energy to deal with all of Ethan's issues and the stress of an active 1-year-old All. Day. Long. To keep a safe and relatively clean house, make him healthy meals, and still have time to play peek-a-boo once in a while.

I wish I could decide at 9 AM on a Tuesday that I'm going to take him to the park. I wish I had the luxury to work only when it is convenient to his schedule. To get up in the morning and decide, "I am not going to the office at all today". Or, "I am going to work, but only for the 2 hours the boys are napping".

But I can't. And I don't. I start to go a little crazy when I am home - Alone. All Day. - with the boys for more than a week. I'm not ashamed to admit that it is too much for me to handle.

And even if I could, we couldn't afford it. I make significantly more money than Jete where my income is not optional. We would have to sell the house if I left my job. There aren't many places we could afford on only his salary. That is not an option for us. We have sacrificed a lot over the years, but we will not sacrifice their home. Their safety. Their stability.

So I rush around every morning, hoping he'll sleep long enough for me to get my shit together and get out the door on time. Most days, it works out fine, and he forgets to miss me.

Last night I got home at 6 as usual. I opened the back door and dropped my keys on the counter. I could hear his feet pounding on the floor. He ran from the living room to the kitchen, with his face beaming.


We went into the living room, I put him down on the floor and said hi to Ethan. CG ran back to me, holding Sheep in a Jeep. I sat on the floor in my work clothes and read to him. He was happy. All is forgotten. He has forgiven me.

Now, if only I could forgive myself.

Sunday, August 07, 2005


"Do you think I'm an alcoholic?"

Jete's eyes were closed as he asked me. His speech was slow and deliberate. He was about 2 minutes from falling asleep. I hate questions like this. He always asks me stupid questions when he's drunk.

"No. I don't."

I don't. Not really. I did know that he had a drink every day for the past 7 days. Not that it was excessive. I just notice things like that.

Of course, there were reasons behind his drinking each time. The weekends are a given. There is always wine at Sunday dinner. Normally, Jete and my dad polish off a bottle... A glass or two at dinner, then the trek to the couch, where the glasses are never empty and the conversation is never slow. Not always interesting, but never slow.

During the week, there is the stress of work, the kids, the bills. Life. A beer after a day working in the hot sun. A glass of wine after the kids go to bed. To unwind. Decompress. Nothing too crazy.

Other than me of course.

I don't know why I have the issues I do with alcohol. I'm unique, to say the least. I don't drink. Ever. Never have and quit. Just never started.

It's not that I've been sheltered. I've been surrounded by alcohol all my life. I remember being a child, and seeing my parents drink at parties. I'd stay up late when they had their friends over, watching from the top of the stairs, listening through the heating register. They became fun people for a few hours. They'd laugh like crazy. I loved it. I wished they could be like that all the time.

But I've seen both sides. I've seen an uncle pin my 12 year old cousin, his nephew, against a wall while drunk. I've seen my cousin's father, also drunk, attack my uncle, who then disappeared for the rest of the day. Wandering the city streets, unheard of for hours.

I've heard about the pain it causes. My grandfather, who I only know as a sweet, old man, was a mean drunk who blew his paycheck every week sitting on a barstool. I've heard it from my mom. From my grandmother who struggled to make ends meet with whatever was left. He stopped drinking when I was two years old, quit cold turkey. But my grandmother never let him forget it. He is constantly apologetic. Thirty years later. Time goes on, but that hurt, it doesn't go away.

Like everything else in my life, my relationship with alcohol is driven by fear. Fear of that fine line. The line between easy laughter and bitter rage. Between secret crushes and wounding secrets. I've watched that line crossed often. I've seen it happening, and I'm powerless to stop it. Mostly, I'm terrified to cross it myself. To lose control.

I'm afraid... what if. What if I like it? What if I never want to stop? What if, like everything else in my life, it becomes an obsession? I don't "enjoy" things, I don't sample. I devour. Cookies, chips, whittled down a few here, a handful there. If I know they are out there, I can't stop until they are gone. Even reading... If the book captivates me, I can't put down until I finish it or pass out at 3 in the morning. My self-control shifter is broken. If I like something, I'm always in high gear. There is no slow. There is either on or off.

So I hold back. And I watch everyone else. They drift into this other world, and I'm envious at first. They can shed this tension of life, the hardness that I can't seem to move away from sometimes. But there is always a price. If they go one step too far, that extra glass of wine, that last beer, they might hit the wall. Where the relaxation meets sadness. Where the reality of life becomes even heavier than it was before they started. Where the tears flow as quickly as the laughter did only minutes before.

But in the morning, everything is a little fuzzy. They move out of their haze and go back to living. And I, who never had the benefit of the haze, keep on going too. And wonder if I missed out on something.

Jete asks me again. "So you don't think I'm an alcoholic?" I don't even know what that means. Alcoholism is fuzzy ground. My grandfather hasn't had a drink in thirty years. He's "recovered". But he's still an alcoholic. Will be all his life. One slip, a single beer, and he could spiral back into his old ways. It controls him, defines him, even when he's nowhere near it.

Do I think Jete's an alcoholic? No.

But sometimes, I think I am.

Thursday, August 04, 2005

Jewels of Denial

I am not normally a jewelry person. I wear the same 5 or 6 pieces all the time. But suddenly, I am addicted to this website. I followed Colleen's recommendation to check it out, and now I can't stop. I already ordered a ring and a bracelet. I'm taking her word for the fact that the stuff is decent. Keep your fingers crossed.

Even if I don't like the current offering, I keep checking to see what the next item will be. After all, there will be something else in only fifteen minutes. What if the next thing is perfect for me! What if I miss out!

I just can't get enough. This site is like crack. Much like the way QVC is to my grandmother. I wonder if there's a support group yet?

Wednesday, August 03, 2005

Massachusetts' Most Wanted

I always see police cars on my way home from work. Since small town cops are notoriously strict, I always make sure to go the speed limit, or under, on my route.

Today I saw a cop up ahead in an unmarked, though obvious, cruiser. I checked my speed. Right on the limit. I wear my seat belt religiously. I drove by, not even looking twice at him.

A minute later, I noticed lights in my rearview mirror. He was a couple of cars back, so I assumed he was pulling someone else over. Still, I did my legal duty and pulled to the side of the road. He pulled right behind me.

All I could think was SHIT. And STUPID STUPID STUPID. I knew exactly why he had pulled me over.

A week ago, I was at my grandmother's house and my aunt said to me, "Did you know your registration was expired?" I didn't. When I left that night, I noticed she was right. It expired in May.

I never got the obligatory Mass RMV notice in the mail. Although, I doubt I would have noticed since this was in the peak of Ethan's post-surgery dates.

The thing was, I distinctly remembered renewing a registration around this time, though. We were driving to Boston constantly, and I remember thinking I didn't want to get pulled over with a bad registration. But now, I'm sure that was for our other car. You know, the one that got totalled a few months ago? Yeah. That was a complete waste of 40 bucks.

From experience, I didn't want to admit I knew it was expired. Once, I got pulled over for having a headlight out. By admitting I knew it was burned out (and that I was on my way home from work to replace it) the cop increased my fine.

For a wholesome goody-goody, I have the worst luck with cops. I swear, if I was a skinny blonde girl, my life would be totally different.

The officer came over to the window and asked for my license and registration. I handed it to him willingly. He told me he was pulling me over because my registration was expired. He showed me on the slip. I feigned surprise as best I could. I told him honestly, I didn't know, I never got a reminder. He took my information back with him to the cruiser to call it in and see if I had already renewed and just lost the sticker.

By the amount of time he was in the car, I knew I was getting a ticket. Either that, or he had found some unknown warrant in my name. Finally he came back to the car. I expected him to hand me my ticket and be on his way. Oh, no.

"Your registration is expired ma'am. I'm going to have tow the car. I'm sorry, but I can't let you drive on a public way. We're just going to have to sit tight and wait for the tow truck."

I looked at him with my mouth visibly open. "Um. Ok." What could I say? Argue with a cop? I'm bitchy and sarcastic. But I'm not that stupid.

I called Jete and cried and swore like a sailor for about 5 minutes. Hopefully the cop didn't hear me on the scanner. Finally the tow truck got there. I started to explain I had to get the car seats out, they were the only ones I had. He told me I didn't have to get it towed to a yard, they could bring it right to my house - for $100, of course.

Well. Lucky me.

The cop handed me a slip. "I'm going to cut you a break ma'am. I'm just giving you a warning. You won't owe anything to the government. Of course, you have to pay to tow it, so it's kind of a wash."

Yeah. It was.

I thanked him anyway. "Thank you Mr. Officer for RUINING MY NIGHT." Or something less apt to get me arrested.

I rode home in the front of the tow truck. Jete and CG met me on the deck. CG loved the big tow truck. He pointed and smiled and watched the driver unhook the car. I had to laugh. At least one of us was got some pleasure out of the situation.

So here I am, with a printed receipt from the Mass RMV. I'm legal again. Cross my name off the most wanted list.

Of course, the sticker won't come in the mail for a few days. And with my luck, Mr. Officer will be looking for me again tomorrow.

Maybe it's time to vary my route a bit? No?

Ethan Part 11: One Step Closer

OT was consulted for help with the contractures noted in the...extremities. ... The question remains whether or not the positioning could be related to cerebral palsy. *

- From Ethan's transfer summary to CCN, 16 days old

Since Ethan was doing so much better, there was no medical reason to keep him in the NICU. He wasn't on any machines and was eating well. It was time for him to transfer to the Continuing Care Nursery (CCN). This was the ward for sick - but not critical - babies. We were happy to shed the label.

It was hard to believe it had been barely two weeks since he was born. What was more amazing was the transformation he had gone through. He had come from being near death to a thriving baby.

His transfer to CCN wasn't exactly what we had imagined. Everything was different in this unit. Yesterday Ethan had to share his nurse with only one or two other babies; today, he shared with almost ten. The standards of care were quite different. The unit went by a "he who cries loudest gets picked up first" rule. Some babies required more comforting. Others were still on medications. Ethan demanded very little. Since he didn't fuss much, they pretty much left him alone unless he had to eat or be changed. More than ever, we made sure to visit as often as we could.

An occupational therapist set up time to visit us to review the contractures they had noted in his hands. They were going to make him splints to help straighten them out to the proper position. But when she came to see us, she said they had improved dramatically since birth. There was no need to splint them. This was very good news. We took this as a sign that maybe things would be okay. Maybe he could recover from all of his injuries. If his hands could get better, why couldn't his brain?

Now that he was out of danger, Ethan could have his hearing screening. Despite all the other issues, we weren't concerned about his hearing. He always responded to our voices, settling down when he heard us talking to him. We thought this test would be a piece of cake.

The audiologist came in and explained the process. The machine gave a simple Pass or Fail result. Although, instead of calling it "Fail" they called it "Refer", meaning they were referring you for more testing. I didn't see the distinction, until Ethan's results came back "Refer".

The audiologist came back the next day with a more sophisticated machine. This test would be able to give results at multiple frequencies. Ethan again "referred" at the same decibel level as before. But this time, he passed at an intermediate level. As we suspected, he was not deaf. Everyone was very pleased - including the audiologist. She told us he most likely had a mild hearing loss. It could possibly improve as he got bigger. A worst case scenario would involve getting him hearing aids someday.

We didn't care about any of that. We only cared that he could hear. He may not be able to see us, but at least he wouldn't be completely isolated in his own world. We made sure to talk to him and sing to him even more than before.

Finally, Ethan's results had come back from the clotting studies they had done. He passed every test. He did not have a clotting disorder. This was a huge relief, although I assumed it meant that I must have a clotting disorder that had caused all the problems. We still hadn't gotten my results back yet to confirm that fear.

Now that he was in the CCN, his pediatricians assumed Ethan's care. We no longer met with the neonatologists as we had in the NICU. We never seemed to be in the NICU as the same time as his doctors, but we'd get daily phone calls updating us on his progress.

We asked the doctors about the magic "5 pound mark" that we had heard mentioned before. But the doctors wouldn't commit to any particular weight as the sign he could go home. They kept saying that he'd have to be at least 5 pounds, and we'd have to make sure everything else was stable too.

Looking back, I think the doctors were scared. Ethan's rapid recovery seemed a little too good to be true after all he had been through. There were still questions around about what had caused all the problems, and they seemed to be expecting a relapse.

In any case, we kept feeding him, fattening him up, watching him get a little healthier each day than the day before. We knew he'd be coming home soon. It just couldn't come soon enough.


* Even though they were questioning CP within week of Ethan's birth, no one said those words to us until six months later. I didn't learn they knew this early until I ordered his medical records a year later.

Tuesday, August 02, 2005

A Guilty Conscience

Bad mother moment #1:

Q: Who is harder to leave in the morning? The special needs child who can't tell you he's upset about you going? Or the "typical" one year old who knows you exist and SOBS, clinging to your leg while you try to scramble out the door?

A: Both. And neither. Work is an obligation and a refuge, all at the same time.

Bad mother moment #2:

I finally got Ethan's appointment with the ketogenic diet specialist in Boston. The earliest date they had was November 4th. The nurse told me that with fear in her voice, afraid I'd be upset it was so far away.

Little did she know, I was afraid she might have something as soon as September. I think I surprised her with my quick response. "Oh, no. That's fine!" Whew.

Bad mother moment #3:

Have you ever realized, at bedtime, that your one year old has eaten nothing but Cheerios, pretzels, animal crackers, and Goldfish crackers all day long? (Washed down with milk or water, of course.)

Not that I didn't try the fruit and vegetables a few times, but they always end up on the floor - uneaten. At least I know he's getting some nutrition with the other stuff. Right?

Hi, Eating Disorders, party of four.