Saturday, March 12, 2005

Sing it again, John

Jete's the best. Sometimes he tries my patience and does weird boy things, but most of the time, he's just a great guy. I have nothing to complain about.

(Of course, I will complain sometimes anyway. Don't be surprised when I do.)

I've been getting kind of down about Ethan's surgery. When we heard for sure he had to have it, we were able to say "Ok" and just kind of go on with our business. It was before Christmas, so we knew it would be a while before it came up. Then they scheduled it, three months down the road, for March. That was months away. Why worry three months ahead of time?

Yes, I know. It's called denial.

So now that it is less than two weeks away, and I am super PMSing, it is becoming more real. I've been doing research on the internet, a baaaaad bad thing to do when you are a worry-wort anxiety-prone type person. So I've been sad and worried for him. And just all-around bummed. Why does he have to go through all this? Why does he have to suffer? He is just the happiest most easygoing boy you could ever meet. He asks nothing from anyone except love. It just doesn't seem fair.

Tonight I was kind of getting upset, trying to make plans for our next few weeks. Jete asked me if I was upset about Ethan. I said yeah, and tried to not cry. Again. I tend to do that a lot. It gets annoying after a while.

He told me he's been getting emotional too. I snapped my head around from the window I was looking out.

"You have? When?"

"At work."

"At work? Huh?"

"At lunch, I usually sit in the truck and listen to music. I've been listening to John Mayer, and that song that reminds us of Ethan, and it's been getting me a little choked up."

John Mayer. I love him. In some ways I feel like I shouldn't. Like he's too uncool. Or too cool. Or too Dave Matthews. Or too cocky. Or whatever. But I don't care. I love him anyway.

The song that reminds us both about Ethan is "Bigger Than My Body". It's obviously not about a 3 year old with Cerebral Palsy, but still. If you think about Ethan when you listen to it, it is so him. It's hard to explain, but I thought I'd post some lyrics here so you could see what we mean....

Bigger Than My Body
by John Mayer

This is a call to the colorblind
This is an IOU
I'm stranded behind the horizon line
Tied up in something true

Yes I'm grounded
Got my wings clipped
I'm surrounded by all this pavement
Guess I'll circle
While I'm waiting for my fuse to dry

Someday I'll fly
Someday I'll soar
Someday I'll be so damn much more
Cause I'm bigger than my body gives me credit for

Why is it not my time?
What is there more to learn?
Shed this skin I've been tripping in
Never to quite return

Yes I'm grounded
Got my wings clipped
I'm surrounded by all this pavement
Guess I'll circle
While I'm waiting for my fuse to dry

Someday I'll fly
Someday I'll soar
Someday I'll be so damn much more
Cause I'm bigger than my body gives me credit for.

You get the idea. You look at Ethan, and you can feel this wonderful sense of .... lost potential. His body is his prison, trapping the person he could have been. It is just barely holding back this tremendous spirit. It escapes sometimes. You can just feel it.

So I think... If Ethan could sing, he would sing something like this. But for now, John can sing it for him.

The Big E

I know I write really long entries. There is so much I want to say, it's hard for me to narrow it down.

That's the way it is with Ethan.

Ethan is 3 years old now. There is so much to say about him, I can't figure out where to start. Well, I know where I'd like to start. At my pregnancy. At his birth. But that alone is worth three entries.

Then there are his first few months of life. His first year. His second. His third.

I want to write about all of that. I have to. I have to get it out of my head and into the universe. Out of my head is always a better place for stories to be.

And I will get it all out. Explain it all, even though everyone who reads this (as far as I know) already knows all about it. Maybe they don't know every detail. Maybe they'll learn something new. Maybe they'll skip the stories completely. That's fine. I'm not doing it for them. I'm doing it for me. I have to get it all out, so that I can move on with my life.

I already am moving on, in many ways, but I still feel a need to tell his story. I feel like I have to speak for him, since he will most likely never speak for himself. It will just take me some time.

In the meantime... the latest about The Big E.

He is having surgery on March 23rd. They will be doing a bilateral osteotomy. That is all probably spelled wrong and missing 40 other adjectives. But the gist of it for all us non-doctors is that his hips are messed up. His Cerebral Palsy causes his muscles to be super tight. His super tight muscles put extra tension on the bones and joints. As a result, his hips are dislocating.

The surgery will involve cutting the existing hip bones and forming them into the proper position. They will put on metal plates to hold the bones together. They may have to do additional work, depending on how bad the bones are once they get in there. How much they do will really depend on how well he tolerates the surgery. It will last somewhere from 4 to 10 hours.

After the surgery, while he is still asleep, they will fit him with a cast from chest to knee. I believe he will be in a semi-upright position. He will be in this cast for about 3 months.

The surgery is in Boston. We will be there 7 to 10 days. It will all depend on how he does. If it is anything like his stay in the NICU, he may surprise us all and do really well. Be back to himself sooner than we would think. That is what I'm hoping for.

Well-meaning relatives ask, hopefully, "So after this surgery, do they think he will walk?"

No. He will never walk.

After this surgery, they think he will be free from pain. Those are the kinds of goals we have in our day-to-day life. Keep him comfortable. Keep him free from pain. Keep him happy. That is really all we hope for. That is a success for Ethan. A day of happiness. Free of pain.

So there you go. The latest on The Big E. I'll get to the background someday. Once we get through the present.

Thursday, March 10, 2005

Why I will never be debt-free...

...because, sometimes? I am Too. DUMB. To live.

TDL. It's my favorite expression for those times you want to slap yourself. Hard. "How could I DO that?? I am too dumb to live." It's a wonder I haven't killed myself in a freak toaster oven accident or something.

I have messed up my credit on and off for the past, oh, 10 years. Basically as long as I've had credit. I do well for a while, but I always, always fall back into bad patterns.

Sometimes though it isn't my fault. When I had my son Ethan, things got a little messy. I didn't expect six weeks of bedrest, lower paychecks, a son in the NICU for a month. Things got forgotten. My bills sat unopened for weeks. On top of that, I had changed my credit card bills from paper to electronic. To save paper. To save them from sitting unopened for weeks.

So instead, the email reminders sat unopened for weeks. Or months.

So I got two months behind on my credit cards. I paid them up to date as soon as I could! And I called the kind-hearted, people-person credit card company, and explained the situation. Could they help me out? Could they remove my bad ding from the credit bureaus? Please, please? I had a sick child!! And of course, they said: NO. It was already done. There was nothing they could do about it. Then they said the worst thing to say EVER, yet somehow all customer service people are trained to say it:

"Is there anything else I can help you with ma'am?"

Um, NO. You could HELP me by taking the 60 dollars in service charges off my credit card. You could HELP me by lowering my interest rate that just doubled because of this. You could HELP me by removing by bad credit rating that will cost me thousands of dollars in the long run. You could HELP me by removing some of the stress in my life. Can you do that? Can you? No? Then how, exactly, do you plan on helping me?

So... I got better. I paid things on time. Once in a while, though, I messed up. When my youngest son was born, I missed a payment again. Only by a few days, but it may as well have been a year. Again, 30 dollars in late charges. Again, a higher interest rate. And again, an instantaneous note to the credit bureaus.


So I started a new routine. I marked all of my bills on my Outlook calendar at work. I have reminders a week ahead of time. "Pay cable bill!" "Pay school loans!" I immediately go in, pay the bill electronically, and breathe a sigh of relief I have made it one more month in the "good credit risk" column.

I thought things were really turning around for me. I got one of those "preapproved" letters from a credit card company for 0% interest for one year. I thought I'd never qualify, but why not try? And I DID qualify. Yay! I transfered the balance from my super-high-interest-rate credit card. I was starting with a clean slate.

I kept getting the reminders for my old credit card, which I ignored, but didn't delete yet. I kept the account open - *just in case*. You never know when you are going to need an extra cash line.

Then the other morning, I got my reminder again. I haven't used this account in over 3 months, but I thought I'd sign in and check. See that "0" balance and dream of the days I'll have that on ALL my accounts. So I typed my account name and password. Got to my statement and saw:

Balance: $68.93


My heart dropped. I went to the statement detail and saw only a $30 service charge. For what? I went to the last month's statement and saw another $30 service charge. Still, no reasons I could find. Maybe there was a mistake. Maybe someone in the credit card company messed up! Maybe they had accidentally charged me late fees for a zero balance. Yes. Maybe!

Then I got to the December statement. It had a 9 dollar charge on it. From Mary Kay.

Damn that Mary Kay.

My cousin DJ is a sales girl for Mary Kay. (She will sell anyone Mary Kay for that matter, so let me know if you're looking for a hook up.) Thinking waaaaay back, she had called me in December. She was putting in an order and needed a little more to push it over. I said sure, throw in a cleanser or moisturizer or poofer or whatever the heck you call those makeup thingees. And that was the last I thought of it.

I pay for EVERYTHING with my debit card. I never never never use my credit card, except for emergencies or big purchases. I always know when I use my credit card. Except this time. I forgot Mary Kay doesn't take my debit card, for whatever reason. The last time DJ tried it, months ago, it wouldn't go through. So I gave her this card's number. And she just assumed I wanted her to use it again. And I never thought to ask.

Cause I am TDL.

This time, I didn't bother to call the company. I just paid it off quickly. And pounded my head into the desk for a few minutes. Then got dressed, and went to work. And fumed. All. Day. Long.


Sixty dollars in service charges for a $9.83 make-up thingee.

I don't know if I've learned my lesson. I know I will be checking ALL of my balances every month from now on. I know I should cancel the card. And I probably will. Someday. When I get around to it.

The saddest part of this whole story?

I don't even really wear make-up.

Sometimes, the irony in life amuses me. Not to the point of full fledged laughing, but just to the point of "Hmph". This was definitely one of those moments.

Only someone as TDL as me could be dumb enough to pay 69 DOLLARS for an item whose name I can't even remember.

Monday, March 07, 2005

Rant of the Day - Doctor Visits

Ethan had a doctor appointment this morning. He has so many specialists that we usually have at least one appointment a week, sometimes more. A few times we had 3 appointments in one day. That was a nightmare that we won't be repeating.

My experience with bringing Ethan to the doctor has made me despise the medical field. Today's visit was one of the highlights of that hatred. It brought up a lot of questions I'd like answered....

Why is it acceptable for the doctor to make us wait for an hour and a half past our appointment time?

Our appointment was at 8:50. We were not called into the office until 10:00. And that was only to see the nurse to have Ethan's height and weight taken. We were then put into a visit room to wait for the doctor. For another fifteen minutes.

We were once made to wait 2 hours to see a doctor. When we were finally seen, the doctor prefaced the visit with, "We have to make this quick, I have somewhere to be." Well, pardon me and my handicapped child for holding you up from your golf game!! He may have been going somewhere legitimate or medical-related, but still. THINK before you speak to a tired mother and her hungry son who has now missed lunch waiting for you.

I understand doctors run behind. But an apology, a simple explanation... hell, even acknowledgement of the fact that I have been sitting in your waiting room with a 3 year old for over an hour would be nice. But they just pretend they don't know what time it is. They don't even have clocks in the waiting room for just that reason.

By the way, the ACTUAL appointment? Seven minutes long. We waited an hour and a half to spend seven minutes with the doctor. It was your typical follow up where nothing happened except we got a prescription refill. Couldn't I do that over the phone? Oh, no wait. Then they couldn't bill me three hundred dollars for those seven minutes.

But at the same time...

Why am I treated as a horrible person if I am running late?

Yes, I was 10 minutes late for the appointment. So sue me. Of course the nurse at the desk sighed and gave me attitude. Then our patient sheet was branded with a giant capitalized "LATE!" on the top. After I saw how long we waited, I wondered why they cared that I was late at all? I would not have been seen at our scheduled time anyway!

And where is my red pen to mark on the sheet that the DOCTOR was late??

And really...

Why was the waiting room temperature set close to 90 degrees?

I swear. It was so hot the kids were sweating in there. I had to take Ethan's coat off, and he is always cold. I think they want you to be so doped up you are too tired to complain.

But I will complain about this...

Why don't medical staff ever read your chart before seeing you?

I mean, we were there for an hour and a half. Do me a favor. Tack on three minutes to read his chart. Learn who my son is and what his issues are before you see us and start saying stupid things.

This goes to both the nurses and the doctors. The nurse who took his weight asked me if he was sleeping. AGAIN. I've seen her three times and she asks me this every time. And every time I have to explain, no, he is not sleeping. He is BLIND. If she read the chart, she would note this. Maybe she could even put a star next to it or something to remind herself next time. When the woman at the mall asks me if he is sleeping, it is innocent ignorance. When someone in the medical field asks me that? It really pisses me off.

And the doctor isn't exempt. Why did he think my son had a g-tube for feeding? Because he didn't read the chart. If he had, he would have seen the giant note where the last doctor decided he did not need one. Clearly, he hadn't even cracked the chart before walking in. And then he only spent 7 minutes with us. Interesting.


Why are nurses among the meanest people on earth?

I have run across very few nice ones. Never mind compassionate. The mean nurse at the desk is just one example. Most nurses haven't got a kind bone in their body. They see that I'm dealing with a handicapped child. Do they honestly think that our visit to their office is the most important thing I've got going in my day? Getting him dressed, fed, medicated, and transported to his appointments is a bit stressful. Being only 10 minutes late for their little follow-up is a success if you ask me.

Isn't the whole point of their job to care for people? I think most of them have forgotten that.

As for why I was late...

Why would a medical office building have a parking garage with no elevator access?

The first time we went to this doctor I was alone. It was one of those few appointments Jete couldn't go to. After that, we always made sure he could be there.

There is a sign when you enter the parking garage that says "Handicap Access on ground floor and top floor only". Now, stupid me, but when I think handicap access, I think parking spaces closer to the door that are wide enough to get a wheelchair in and out of. I don't think "stroller access". I guess I should have.

I drove forever and finally got to a floor where every spot wasn't reserved for someone who worked there. I parked, got the stroller out, loaded Ethan up, got the bags, locked the car, and walked to the big "Elevators -> " sign. I opened the door and saw... a set of stairs. One going up, one going down. HUH? Couple of things...

  • Shouldn't the sign at the door say "Stairs" instead of "Elevator"? Honestly.

  • At the entrance, the "Handicapped Access" sign is really code for elevators. Why can't they just say that? And why is the sign so damn small?

  • And furthermore...Why is there no elevator access? The ground floor has 5 spots that are all handicapped only and always taken. The roof is the only other option. Isn't this a medical office building? The majority of visitors are elderly people (i.e. walkers and wheelchairs) and children (i.e. STROLLERS). Don't you think they could have built some ramps or something??
At our first visit, I had to load Ethan back into his car seat and drive to the top floor and start all over again. I knew better at my visit yesterday, but I still had to navigate in the garage for over 5 minutes. Once I parked, I had to get his stroller into the building. There is a steel door there that is pretty difficult to maneuver while pushing a stroller. (And come on, is it really considered "handicapped accessible" if you have to open a steel door to get into the building anyway?)

I guess my point is...

Why does it have to be a miserable experience?

I know we are not unique. The same things would happen to any mother, whether their child had special needs or not, or any other patient. I just think it is horrible that medical visits are like this. You usually go to the doctor because you are sick, and often, scared and worried. Why should you have to deal with all this other crap? It doesn't have to be like that.

You would think people in the business of healing would try to make the experience less stressful.

Sunday, March 06, 2005

Cast of Characters

Leading roles:

  • Mete - me. You should know how to pronounce this by now. If not, you may want a refresher.
  • Jete - my husband. He was actually dubbed this nickname by my sister according to our silly rules, so it only makes sense to keep it.
  • Ethan, or The Big E - my oldest son. We chose his name because it was not overly popular at the time. Then 5 minutes after he was born every Tom, Dick and Harry decided to name their sons Ethan. It has been in the top 10 ever since, and according to some lists, it was ranked number one last year. I figure it's about as overused now as Jason or Jacob.
  • CG - my youngest son. Short for Curious George. (Side note: When I was pregnant, everyone wanted me to name CG "Aidan". I really liked the name, until I saw how fast it was moving up the lists. Check out the link above and see how right I was.)
Supporting Characters:

  • My Mom and Dad - there should be no need for names here. I never call them anything else.
  • Sete - my sister. See previous explanation of Mete and Jete. Two years younger than me. My running joke is that I'm the smart one, and she's the pretty one. Except she's smart too. Damn her.
  • Bonnie and Clyde - Jete's Parents. My friend E. refers to Jete's family as "The Outlaws", so there you go.
  • Gameboy - Jete's younger brother. He's away from home, serving in the Air Force.
  • CS - Jete's oldest sister. Watches the boys full time. Short for Chunesammy. (You won't pronounce this properly, so don't even try.) This is some secret joke his sisters came up with, referring to some ancestor of their Korean grandmother. It probably means "stupid sister-in-law" or something, but I just smile and nod.
  • RP - Jete's youngest sister. Stands for "Rejected Pepperoni". CS and RP coined this phrase. Applies to anyone who is often left out of things or ignored. She is the baby of the family and claims to be the biggest victim of the crime of RP.
  • D or DJ - My cousin; we were born within a year of each other and like to keep that roll going. She married her husband within a year of my marriage, and had a daughter, K, four months after Ethan was born. She has a son, DC, who is about year younger than CG.
  • E - My friend from high school who has since moved to the big city. She used to make fun of me, but my mom pays her well now.

Tuesday, March 01, 2005

Sounds like 'Betty'

I will never be confused for a Betty kind of girl. When I hear Betty I think of the beauty chased by Archie & Jughead. Blonde, buxom, hourglass figure. Drawn perfectly. Guys I knew used to argue about whether or Betty or Veronica was hotter, but none of them ever said they'd throw Betty out of bed.

I could, however, be confused for 'Meat'.

Maybe I should explain.

I have one sister. The two of us, to amuse ourselves, used to pretend we could speak languages we didn't know, especially Spanish. For a 12 year old, that's funny. Just throw an "o" or a "y" at the end of any word and it becomes Spanish.

"Pardon-o, no speak-o da Englesh-y." (Shockingly enough, I was a geek then too.)

We especially wanted to learn swears. Then we could live out our kid-sized dream of swearing in front of our parents while they had no clue what we were saying. Of course, we were still goody-goodies. We'd slur the words beyond recognition *just in case* my parents had gone out and bought a Spanish-to-English Curse dictionary the night before.

As part of this ridiculous game "Mete" was born. My sister would say a swear word really fast. It got changed and distorted, until finally she just started calling me "Metty". My first name starts with an M, so it worked for me. We spread the name on to everyone close to us using their first initial - she became "Setty", a cousin was "Ketty".... you get the idea.

The nickname stuck between us. She started writing it on cards and stuff, and for whatever reason, always spelled it "Mete". I knew what she meant, and never really thought much about it.

Until the first time my husband (then boyfriend) saw it written. He looked at it for a minute and then looked at me funny. "Why does she call you 'Meat'?"

Now, being an overweight, often frumpy-feeling girl, you don't want any guy to think you go by the name 'Meat'. Especially one you are dating. I mean, I could see if you're talking about a model type.... "What a prime piece of meat". Rude, yet complimentary. But a chunky girl? I immediately think ground chuck or "thick meaty thighs". Not a flattering picture.

After I explained its origins to him, it became a funny nickname for just the two of us. He would write "Mete" on cards, but would say 'Meat' in conversation. With his gruff voice and serious expression, it was pretty funny.

And usually, I could forget the image of a cow when he said it.

I pretty much figured that the 2 or 3 of you who may actually see this blog already know the proper way to pronounce Mete. But just in case you didn't, it's a good time to have a refresher.

And for the rest of my soon-to-become-fans, I just wanted to make sure you were prepped to use my name in office conversations, at the grocery store, in line at the bank.... "Did you SEE what Mete said today?" "That Mete has a keen sense of irony."

Then again, you could always just call me Veronica. I'd love to be the bad girl too.