Saturday, April 30, 2005

How to Keep Your Man Happy

Today was the first day in several weeks that Ethan did not spend the majority of the morning crying. I finally figured out a method that works:

1. Let him sleep until at least 11:00 AM.
2. Once you are cruel enough to try to wake him up, let him wake up slowly. Give him at least a half hour before bothering him again.
3. Put on loud, upbeat music. This morning's selection included The Bee Gees' Greatest Hits, The Muppet Movie Soundtrack, and Yanni: Live at the Acropolis.
(3b. For well-balanced household peace, let CG dance around the living room to the Bee Gees. Trust me.)
4. Don't make him eat.
5. Since you must make him take his medicine with food, give only 2 or 3 bites at a time, with breaks of at least 10 minutes before the next bites.
6. Let him sleep. As long as he wants. Even until 4:30 in the afternoon.
7. Lather. Rinse. And Repeat.

Needless to say, this worked today. On a weekend. When I had nowhere to be. But I can't do this Monday through Friday. I have to go to work sometime. It's bad enough that I'm paying our babysitter more than half of my week's pay while I stay home half the week. Somewhere in there, my math brain screams at me. Where is the logic?

But honestly, I would pay any price to keep Ethan happy as long as possible.

After he was first born, the flurry of doctors' appointments and worry kept my mind from drifting too far. But a few months later, I got depressed often thinking about the boy he could have been. The boy he should have been, if only bad decisions weren't made. What would he have been doing at 6 months? A year? Two years? The image of a "normal" Ethan was always in the back of my mind. I missed that hypothetical boy and felt as if a part of him, and me, had died.

Now, we've accepted who Ethan is and who he will never be. And instead, I find myself missing the Ethan he actually is, or was, before the surgery. He hasn't been himself since March 23rd. We see glimpses of the old him from time to time. Especially in the middle of the night, at 2 in the morning when he thinks it is mid-afternoon. He will talk and laugh and entertain himself like he used to. But the rest of the day he is tired, and cranky and annoyed. Just not happy.

Yesterday, representatives from the school system came to evaluate him. Of course, he was having one of his worst mornings in a while (I could have put money on that) and was sleeping when they arrived. They conducted the evaluation mainly through questions to me. Can he do this? No. Can he do that? No.

They asked a lot of questions about things he did before the surgery and cast. And I found myself having a hard time remembering. Things came back to me slowly. I forgot how he used to sit in his chair and bang his toys hard on the tray. And startle himself, but then laugh out loud at the noise. And how he used to wrestle himself for a toy - holding it in his teeth and then pulling with all of his might until either his hand or mouth won out. I tried to give them a picture of how he used to be - with the warning that I'm not sure he will be like that in the future.

On the ride to work, I was hit by a wave of sadness. Will he ever really recouperate? Will he ever be that happy boy he was only a month and a half ago? He is so different now that I had already forgotten. Before, he was happy from the moment he woke up until the moment he went to bed. He put up with so much and just kept on going with a smile on his face.

I worry that we broke his spirit with this surgery. Will he ever forgive us for putting him through all this pain? He seems so insecure now; he gets upset before you even touch him. He has come to expect the world to be a place where someone is always hurting him.

I know it is still very raw. Major surgery takes time to heal; it has only been 5 weeks. I just hope that as time goes on, he will be more and more like the old Ethan. Once the cast comes off, and he can sit again, and play on a tray, and go outside for walks, he will perk up. He will start to trust the world again.

In the meantime, I'll keep drying his tears and trying to soothe him as best I can. It breaks my heart, but at least I know at 2 AM, I can get up and see the old Ethan for a little while. And remember the boy he was. And will be again someday.

I hope.

Thursday, April 28, 2005

Thoughts from a Sleep Deprived Mind

Random train of thoughts...

  • Our local school system is coming to evaluate Ethan tomorrow morning. The PT, OT, ST and teacher are all coming to my house. Should be interesting. He is much like his parents lately... definitely Anti-Mornings. We'll see how well he cooperates.

  • Yikes. I should probably clean the house before they come, shouldn't I?

  • Eh. They deal with kids all day. They'll understand Hurricane CG.

  • Why am I wide awake at 11:54 pm, when everyone else in my house is asleep? Why am I wasting time on the internet when I should be catching up on sleep?

  • What am I going to wear to work tomorrow? I should have done laundry instead of being on the internet, too.

  • I've got to get a new wardrobe. Or at least add one or two outfits to the 6 that I rotate from week to week.

  • I hate clothes anyway.

  • Man, this post is dull.

  • Who cares? It's not like anyone's reading it. (Are they?)

  • Yay! Tomorrow's Friday!

  • Ooh. I have to buy a birthday present by Saturday. When will I squeeze that one in?

  • Crap. I forgot to get gas today too. At least the light isn't on yet. I bet I can make it to work and back. Probably.

  • Was I supposed to finish any reports by tomorrow? Hmmm.... I don't think so. But my mind's not what it used to be.

  • Okay, finally the sleepiness is hitting. I knew I'd bore myself to sleep eventually.

  • See, now I'd like to go to bed. But that means I have to clean off the bed. And find a place for my laptop bag, Bowl for Kids' Sake pledge sheets, and dirty tights from today.

  • I'll just do the usual and pile them on the floor. With all of the stuff from last night. And the night before.

  • (yawn) Crossing my fingers that CG sleeps all night... But not holding my breath.

Good night!

Tuesday, April 26, 2005

Not-so-Working Girl

(Stealing format from better bloggers than I...)

6:23 AM - Jete stops in bedroom to say goodbye. Ask him for 800th time if anything hurts. He says no and leaves. Fall into coma-like sleep.

7:26 - Woken with a start by cousin D's phone call. Explain story of Jete's accident for the 17th time. She is pregnant and tells me about her latest ultrasound. Remember dream from coma-like sleep that I was 9 months pregnant with a girl. She thinks it is "a sign". I think she's crazy.

7:58 - Tiptoe into hallway to check on household. Both boys still asleep. Sigh with relief.

8:01 - Set up work laptop in bedroom to start working from home. Check email and blogs instead.

8:18 - Actually start working.

8:25 - Sitter shows up. Makes herself breakfast. I decide to have cereal and stop working again.

8:48 - Decide CG needs to get up or we won't get any sleep tonight. Open his door, make lots of noise and let sitter figure out why he's suddenly awake.

9:08 - Ethan wakes up. Give him reflux medicine. Make his cereal and get his two seizure meds ready.

9:20 - Finish feeding him. He is happy.

9:21 - He is mad.

10:03 - Sitter decides to take CG for a walk while I continue to console Ethan. Rocking him in the recliner seems to calm him most of the time. I'm trapped on an ottoman rocking while she leaves.

10:26 - Tiny knocking on door. Answer to see cousin D with daughter K stopping over to get baby shower invitations I printed for her. K is a 3 year old who weighs only 2 pounds more than CG. She asks if we have any cheese.

11:01 - Sitter returns as D & K leave. Ethan is finally asleep. Get in the shower.

11:12 - Quickly throw on same outfit from yesterday. Never got to work in it, so why not?

11:28 - Remove CG from leg and run out the door to go to work.

11:29 - Decide I should pick up lunch on the way. Debate between cheesy Panera and healthier Subway.

11:37 - Stop at Subway. Get a tuna grinder. And a chocolate chip cookie.

11:49 - Finally arrive at work.

11:58 - Both computers are on and ready to go. Decide to eat lunch.

12:09 PM - Check E's journal. No new entries. Check CNN. Check email.

12:13 - Get email from coworker. Forgot I was delivering an unused double stroller. Run outside to make exchange of stroller for cash.

12:28 - Try to do some work. Get bored. Check E's journal again. Still no new entries.

12:46 - Decide to settle medical bill received for Ethan. Call Mean Doctor's Office (MDO). Speak to nice Customer Service Rep (CSR). She tells me it is Cigna's fault. I must call Cigna.

12:51 - Call Cigna. After 16 different teleprompts, finally speak to person. They tell me it is MDO's fault. Give me proper tax ID number for them to bill with. I must call MDO.

12:58 - Call MDO again. Get different CSR. She is mean. Explain what Cigna said. Mean CSR says Cigna is stupid. Number is not a real tax ID. I must call Cigna back.

1:09 - Finally get through to a person again at Cigna. Different CSR. Again. Nice guy, tells me he can't call MDO, but can I conference them in? I try. And lose both calls.

1:14 - I almost cry. And then stop. I hate everyone.

1:15 - Call Cigna back. Get third Cigna CSR. Finally remember to write down a name. Mike. He is nice. Explain that I hate MDO. Why are they being so unhelpful? Don't they want their money? He says Cigna can make an exception after all. I am very grateful. Secretly wonder why first Cigna CSR didn't just mention that.

1:20 - Try to work again. Save a report four times without making changes.

1:21 - Check E's journal again. Still no new entries.

1:30 - Stop at coworkers cubicle in the next row. Start chatting.

2:19 - Return to desk. Look at clock. Damn.

2:20 - See I missed a call. Check voicemail. Adjuster from car insurance company needs me to call back.

2:26 - They are totalling our truck. Yay! Do I agree on the price? Um, no, give us more money. But okay. Just send a check.

2:34 - Call Jete to explain situation. Get his voicemail.

2:38 - Coworkers twist my arm. Decide to go to store and get candy.

3:03 - Return from store armed with peanut butter cup and Boston Baked Beans.

3:03 - Finish eating candy.

3:07 - Jete calls back. Explain everything. He is on his way to empty our truck. We get a little sad. Then we think of nice new truck we'll be buying.

3:09 - Call Jete back to remind him to pick up Ethan's prescription.

3:12 - Try to work again.

3:13 - Casually check E's journal again. Helloooo? Updates?

3:29 - Decide to enter vacation time into computer system. Realize I've already taken 3 weeks vacation time this year. And haven't had one vacation yet. And won't for the rest of the year.

3:50 - Decide I Must. Buckle. Down. Work work work.

4:20 - Go back to coworkers cube in the next row. Help with HTML question.

4:22 - Chat with coworker again.

5:15 - Return to desk. Yikes!

5:17 - Frantically send half-finished results to managers who need them "by the end of the business day". Explain we are.. um... really busy.

5:18 - One last check of E's journal. No new updates. Decide to read an old one, just in case.

5:20 - Call it a day. Lock desk down for heightened security rules. Pack up laptop. Maybe I'll use it tomorrow....

Monday, April 25, 2005

Just another day in paradise

Today started off positively. CG, who at one-year-old still doesn't sleep through the night, slept from 9 PM until 5 AM. A major success. I could almost hear Dolly Parton singing. But not for long.

Ethan has still been having bad mornings. Like, "unconsolable crying - nothing seems to calm him down" mornings. Because he has about 73 different issues going on (neurological, muscular, surgical, GI, blah blah blah) we never know what the problem is. I think we've narrowed down these bad mornings to a cross between seizures and cast discomfort. But really, we can't be sure. By mid-afternoon, he is always blissfully happy like nothing ever happened.

I've been going in to work late so that I can help our sitter out while she watches the boys. It is too much for her, physically and emotionally, to handle Ethan's fits while trying to chase CG around the house. So I have been staying home until Ethan is settled.

The first few days, I was getting to work by 10:30. Friday, I didn't get there until 11:30. This morning, it was 11:15 and he was still in the middle of the crying. I knew I wasn't going to make it to work until at least 11:45. AND I had to leave work early today because CG had a checkup in the afternoon. I was thinking about all of this as Ethan cried louder and louder. It was getting to me, and I was starting to lose it.

I remembered that Jete was supposed to take a half day for CG's appointment. He figured he'd get some needed errands done around the house while the sitter was here, then go to the doctor's with me. As Ethan cried louder, I looked at the clock and thought maybe Jete had changed his mind about taking a half day. I called him on his cell phone:

Me: (frantic) Are you coming home now or not?

Jete: (calmly) Well, not now. I just got in an accident.

(Just so you know, I didn't cause the accident by calling him. He had just gotten out of the truck when my call came through.)

Most importantly of course, he is fine. He walked away without so much as a scratch on him. The "kid" who hit him walked away without any noticable injuries, too. Our SUV, unfortunately, did not. Long story short (or my definition of short):

Jete was going through an intersection when a "kid" ran a red light. (He couldn't have been more than 20; therefore, defined as a "kid" to someone who is practically-thirty.) He realized at the last second the light was red, slammed on his brakes and broadsided the passenger side of our car. That pushed Jete up onto the curb and straight into a traffic control box. The box, and the cement footing it was mounted with, were uprooted and stuck in the undercarriage of the car.

Because there was so much front-end damage and passenger-side damage, most people are guessing it will be totalled. At this point, we're almost hoping it does. I don't care how good the body shop is, I would never feel it was 100% again. And I think we'd have a hard time selling it after it was in a major accident like this.

But on the bright side, we were thinking of getting a new truck someday.

So that consumed the afternoon. I left the boys with the sitter to go to the accident site, only 5 minutes from home. We headed down to the body shop and the insurance company. Then we came home to finish off all the phone calls. Hopefully, the insurance stuff will go quickly. The police came and took a report, and Jete had a witness who saw his light was green, so I'm hoping it is an open and shut case.

Because of all that and CG's appointment, I never made it in to work. Of course, I've got deadlines up to my ears, and the stress of being at home is driving me crazy too. I really just want a few "normal" days. Go to work at a regular work hour, come home at a regular hour. Go to bed at a normal bedtime and sleep until a normal time. I miss days like that.

To finish off the day, I rounded things out with a nice panic attack earlier this evening. I was controlling my anxiety better for a while, but lately these are creeping up on me again. I have to keep reminding myself that I am under a tremendous amount of stress and that is the reason for them, and not my insane belief that I am dying of a heart attack any second now. I have every reason in the world to be anxious, and it is a normal, natural response to feel that way.

(Yeah, of course I believe it now. Try me again in the middle of the panic attack.)

So that's the latest from my crazy world. Not to imitate Pollyanna again, but there are always good sides. I really try to focus on them, because they put everything else into perspective. So please, meditate with me:

  • No one was hurt in the accident.
  • Ethan was happy this evening.
  • CG did perfectly at his physical.
  • Jete and I got to have lunch together in between accident reports.
See? It's all good. Like the Bangles say, it's just another Manic Monday.

Friday, April 22, 2005

Sedation in Cheesy Clothing

This morning started off rotten. Poor Ethan had one of his worst mornings in a while. I got breakfast into him relatively well (considering most "bad" mornings, he gags and tries to throw it up in protest). But then he whined and cried on and off for what seemed like forever. I gave him some pain meds, changed his position (which only seemed to anger him MORE) and nothing worked. Finally, he fell asleep while rocking in the recliner.

Once I decided he was really settled, I snuck out to come to work. All the while CG held his arms up for me to pick him up and whined that I am a bad mother who never spends any quality time with him.

Or at least, that's what I translated "uhhhh-huhhhhh" into.

Of course, I could have put money on the fact that it would be a bad morning. I have to leave early today to go to my company's other campus. I was really hoping to get in here as early as possible so I could just head home afterwards. And instead, I got here later than I have all week.

Just so I can turn around and leave in 2 hours. Sigh.

My bad morning did turn around slightly, though. Two things intervened:

  1. Music

    I caught The Tide is High by Blondie on the way in, and I just had to sing. Belting out a song in my car always makes me feel a little bit better. And of course, I kept the windows rolled up so I wouldn't get arrested for noise pollution.

    I also happened upon Counting Crows' Round Here, which is a rarity in this area. Local radio stations don't really care for them, except to play that Big Yellow Taxi remake. It's a shame, because they have a lot of great music. (Although I'm biased since I love them.) Anyway, Adam always makes me feel better, and that song is from my favorite album of all time. So I enjoyed the diversion.

  2. Food

    I stopped at Panera on my way back to work and picked up lunch, since I knew I wasn't going to get back until close to noon. And it was so. so. yummy. And it really made me feel better.

    Why is it that food has that kind of power over me? There is nothing like a warm, cheesy sandwich, with bread that is crispy and chewy all at the same time. To top it off, I had a chocolate chip cookie that was divine. That is the holy trinity of food for me - cheese, bread and chocolate.

    And I wonder why I'm so damn fat.
I am trying to look on the bright side and relax. As my sister pointed out, at least I was getting out of the house. Which is sad, but true - I really can't wait to come to work most days for that very reason.

Anyway, my chair is comfy, I'm leaving in 2 hours, and the office is quiet while everyone is at lunch. It's a gorgeous spring Friday. That's good enough for now. I'm deciding to be happy. That's all there is to it.

Tuesday, April 19, 2005

We're not in the ghetto anymore, Toto

I live in the same city I was born in. I love MyCity, I do. I live in a great neighborhood. But as with every city, there are some sections you just wouldn't want to be caught in. After dark. Alone.

Because of those "bad" sections, most people I've met who aren't from MyCity are afraid of it. When I used to work up north about 30 miles, they acted like I lived in the Bronx or something. I invited someone to my house one time and I think they actually shivered.


The city I work in now is about 20 minutes from my home. In between the two cities are towns that may as well be islands in the middle of the ocean. It's amazing what a difference a 10 minute drive can make. I can leave a poor, run-down, urban neighborhood and in no time be in a wealthy suburb with lush, green lawns leading to lavish homes.

Yesterday on my way home from work, I passed one of these homes to see a little girl selling Kool-Aid. I had to do a double take. She wasn't sitting on a milk crate or selling the cups off of a card table. She had her very own store bought Kool-Aid stand, complete with Mr. Kool-Aid plastered across the front. She probably was selling Evian-quality beverages, too.

I couldn't help but think that buying your child a pre-fab set defeats the whole purpose of a lemonade stand. Isn't it about mixing the lemonade yourself? Drawing the sign? Doing it all by yourself? It's kind of like the childhood version of opening a franchise.

Maybe it's just me. I grew up in a middle-class family, definitely not as wealthy as this little girl's parents. When I was a kid, my sister and I set up a lemonade stand one day. We were bored and wanted to try to earn some money. We dragged a TV tray out to the corner of our street and set up shop. Of course, we didn't have any kool-aid or lemonade in the house, so we put out cups of water. And since we couldn't really charge for water, we cut up leftover padding from our recently installed carpet and tried to sell them as sponges.

(I know, I know. We were strange children. But at least we were imaginative.)

Needless to say, we didn't make any money that day. But we had fun. I wonder how much fun this little girl had. She looked bored to death. There was nothing there for her to do, other than wait for a Lexus to pull up and hand her the money.

Who knows. She probably had a great time, and I'm overanalyzing. Again. I can only guess what I saw in the 30 seconds it took me to drive away from her house and closer to MyCity. And to me, it looked like all the fun had been taken out of the experience.

I'm torn between the desire to move to towns like that and the fear that my kids will become spoiled brats who expect everything because they've always had it. If we ever do move, I'll just have to make sure to bring them to MyCity to show them that it isn't a scary place after all. That there are all different kinds of people in the world, and the life they have isn't necessarily the way everyone else lives. I want them to know that they are fortunate, and teach them to appreciate what they have.

In any case, I can guarantee you - my kids will be making their own Kool-Aid stands, if they decide to go into business someday. But I'll still help them draw the signs.

Monday, April 18, 2005

Charity Begins at Home

Today, a coworker told me she wants to nominate me for an Extreme Makeover show.

My first reaction was "Well, I'm never wearing this outfit again", until she clarified that she meant the Extreme Makeover Home Edition.

My second reaction was, "Hmmm, yeah. I'm gonna have to go with No. But thanks."

She was all kinds of hurt. She thinks I'm "worthy" of something great like that because of all we've been through. I appreciate the thought, but honestly, I don't need a home makeover. Granted, our house is still a bit of a mess in some - okay, a lot - of areas. The basement is ripped apart as we slowly finish it. We have no garage. We only have two bedrooms, and they're small. It needs a ramp someday to get Ethan into the house more easily.

But as much as I love the city I've grown up in all my life, we want to move out of it someday. And the house isn't coming with us. We don't want the boys to live on a main street where they can't play outside safely. And we don't like the school system. Fixing the house up isn't going to fix that.

Plus, the truth is, we love our house. It would kill Jete to come home to find someone had messed it up by adding a master suite or installing an indoor pool. We've worked on it for 4 years now. Room by room we've fixed it up slowly, and we've put a lot of love into it. That's worth a lot more to us than some big budget overhaul.

Am I an ungrateful-ingrate to turn down an offer like that? Maybe. But I can think of a dozen people I know who deserve - or need - a home makeover more than I do. (Or even just a home in general.)

Of course, if Ty wants to come by and help Jete tile the entryway, or ABC wants to send us the money they would have spent.... well, I guess I wouldn't protest too much.

Saturday, April 16, 2005

Lucky (not the Melissa Etheridge album)

Well, as usual, my procrastination and laziness are showing off. I haven't posted in a month, and I've got three half-written entries waiting to be finished. For some reason (PMS?) I feel slightly motivated this evening. So I'm going to do my damndest to finish something. For once.

As you might have guessed, Ethan had his surgery. It took place almost 4 weeks ago. His full body cast is cumbersome for us and uncomfortable for him, but we are all dealing. He had a follow-up appointment yesterday where the surgeon told us he is healing ahead of schedule. How that is possible, I don't know, but I'm not gonna question good news. Our next follow-up is a month away, and by then, he will probably be able to have a removable cast instead of a permanant one.


The surgery seems to have been a success. The doctors were able to do everything they wanted to and he lost a minimal amount of blood in the 10+ hour procedure. The hardest part of the past four weeks has been handling when Ethan cries. It is difficult when your child can only communicate "I'm happy" or "I'm mad" and you have to play a guessing game to figure out what might be bothering him. But that's another post for another day.

The biggest thing I've taken out of this whole experience is the reminder - yet again - of how lucky I really am.

I think that there are a lot of people out there who pity me. I have been given more pathetic looks by co-workers, acquantances, and strangers on the street than I can count. A lot of people feel sorry for Jete and I when they first hear about Ethan's situation. They ennoble us, put us on a pedastal as some sort of charity case or something. How do you do it? they ask. I don't know how you have the strength.

I never understand the wonder people have for us. We do it because we have to. We have the strength because he is our son. If he had ADD, asthma, chicken pox, cancer, or some other of millions of problems, we would get through that too. What choice do you have? You get up in the morning, you take care of everyone around you (including yourself as much as possible) and you go on. That's life. The only other option is giving up, and there are far too many good things about life for me to want to do that.

We went to the hospital for our pre-op appointment a week before the surgery and we saw so many sick children there. With obvious deformities. Bald heads from cancer treatment. Oxygen masks. Blind. Mentally retarded. Amputees. And they all get up every morning and keep going. How can I do any less?

The truth is, my life is no more difficult than anyone else's. It is no more difficult than anyone who has a "normal" child - whatever that is. Every day is a challenge and presents different obstacles, but every day has its good moments too. And for that, I am damn lucky.

We have two beautiful sons. Both with a lot of potential. One with a lot of complications. But they are happy. And healthy, despite maintenance like this surgery that the CP requires. We have a safe and stable home. We have wonderful friends. We have two extended families that love us.

More importantly, we have each other. I have a true partner. He's not perfect. (Neither am I, in case you were wondering.) But together, we are perfect. We balance each other. We share the load... Not always 50/50. The one who is strongest at the moment takes the brunt of it, and back and forth we go like a see-saw. We don't have to feel alone in the daily challenges. In a strange way, it has bonded us more strongly. No one else knows exactly what I have been through the past three years like he does.

Of course there are times I want to tear his head off, or we are both so exhausted we can't stand the sight of each other. But there are good times, too. A lot more than I feel I deserve. And how we got here was nothing more than a series of accidents and coincidences. You can't get any luckier than that.

If I ever do get down and mad at the world, it doesn't last long. When I really stop to think about things, I know how much I have. And I start to feel guilty, knowing that people spend their whole lives trying to get what I have right in front of me. What right do I have to complain about anything?

Tonight, I went to the grocery store, a big outing in my small life. When I came back, Jete had Van Morrison on the stereo. He had Ethan set up on a chair in front of the speakers and was dancing around the room with CG, who was laughing hysterically. I had to smile.

Sure, CG was crying later, and Ethan had another seizure, and I dropped a bag of groceries on the floor. But it's okay. Those other little moments get me through the seizures and the tests and the surgeries. If I have even one more of those moments to look forward to, then life is good.

I'm lucky.