Wednesday, August 30, 2006

A Quick Update

Ethan's surgery went great. He slept before and after, completely worry free. He took pain meds for a single day (one! day!) and has been fine ever since. He is seriously my hero.

My surgery was yesterday. I was a wreck before, relieved after, and feel like I got hit by a truck. Every muscle in my body is sore from the stress of this past week. I did my best to be a bit more like Ethan, but really, I'm a big baby.

There's a lot to explain about the past few months (hell, the past year) of our lives. I've got some serious napping to do, and then I'll entertain you with a recap of the Lifetime TV-movie-of-the-week I like to call: My Life.

(Thank you so much for your kind words lately. I'm bound to get sick from all the sweetness that's been shoveled at me, in real life and on the internet.)

Thursday, August 24, 2006

The Little-Known First Stage of Grief: Sarcasm

An excerpt from a conversation on Tuesday:

Dr. I: ... And don't think this is God's fault. God is not punishing you by doing this.

Me: Please. I don't believe in that stuff. Besides, if God wanted to punish me, I think he did a pretty good job with my first son. This? is overkill. I haven't been that bad.

I'll explain everything. As soon as I can.

Ethan's surgery is tomorrow. Suddenly, it's the last thing on my mind.

Monday, August 07, 2006

Hoe-Down in Aisle 7

I took CG to the mall yesterday for the first time.

Let that sink in for a moment. I took my two-year-old to. the. MALL.

Sete and T came along for added support. But believe it or not, three grown women are no match for a two-year-old who is trapped in a stroller and wants to Get Out. I made the trip through the entire upstairs level of the mall using bribery and trickery. "Have another soft pretzel nugget. Mmmm. Yummy." "If you're a very good boy, maybe I'll let you get out at the next store."

He is no fool to my games.

Finally, we got to the downstairs level. He was nearly busting out of the stroller with excitement. We entered the Christmas Tree Shops, and I decided it was time to let him walk.

For a few minutes, it was okay. He saw some plastic shower caddies which were just FASCINATING, and began to take the pile down from the shelf and recreate it on the floor in front of us. Next he spotted some small plastic baskets nearby and ran over to grab a few. I cornered him near the note pad cubes and crouched down to his level. Our conversation went as nearly every conversation with CG goes:

"CG, you're going to have to try to be a good boy."

"Boy." (looking wistfully at the piles of colorful towels behind my head)

"You have to hold Mommy's hand when we're in the store."

"Sto." (looking at cement garden frogs to my right)

I stood up and tried to hold his hand. He ripped himself from my grip and ran excitedly to the glass garden bobbles in the next aisle. Eeesh.

I tried over and over again to get him to hold my hand, but he was too excited to walk with me. Finally, I started acting as a sheep dog, gently guiding him to safer sections. AWAY from the sharp corners. AWAY from the dishware.

We navigated to the children's section, and I pointed out all of the books to help distract him for a few minutes. There were too many to look at, and I think he was getting overwhelmed. I pointed out a Thomas book, since he has a current love of trains. "Look CG, train."

He pushed the book aside for a different one he saw underneath. "Ba-ay!"

(That would be "Barney", for all of you who don't speak CG-ese.)

He got very excited and started to sing and dance. At least, it was the CG version of singing. He scrunched his eyes and started to rock back and forth. In a very loud, deep voice, he sang in front of the shelves.

"Ba-ay! dur dur dur. BA-AY! URGH URGH DUR. BA-AY!"

A woman was standing nearby and looked at us for a minute. She smiled at CG, but there was something in her eyes that looked perplexed. I got the impression she was trying to figure out what was different about him. In a way, I could imagine it myself - between the the grunting sounds and the loud garbled words, he almost sounded like a child with a hearing impairment, or some other possible medical issue.

As we walked through the store, I felt the eyes all around us. He started to get more excited, and stopped listening altogether. He found a toy hoe and began pushing it around the floor of the aisles. He loves to do this at home; every toy becomes a vacuum or lawn mower and he rearranges furniture so that he can "clean up" around them. At home, to his family, it's a cute game. But in the middle of a department store full of strangers, I could tell it came across a little differently.

He continued to push the hoe around to the front of the store, all the while grunting and shouting nonsense, alternately going from a deep growl to a high-pitched shriek. Strangers looked from him to me, then moved aside to avoid the weird child in their midst. He wasn't "misbehaving", really. He was just lost in his own world of play. Still, I could feel them judging me. "Why doesn't she control her son?" "Why doesn't she DO something?"

It seemed that the other children in the store were behaving especially well for some reason. Even the children who were about his size were saintly in comparison. They stopped and quietly looked at him as he grunted in his own strange language. They seemed afraid of him.

As we neared the candles and other breakable items, I told him again that he'd have to hold my hand if he wanted to walk around. When he broke free again, I put him in his stroller for a time-out. We wrenched the plastic hoe from his hands so that he couldn't reach to knock anything over. Then, The Hulk emerged.

Shrieking, screaming, kicking and flailing with a strength no 28 pound toddler should have, he fought against me. I got down to his level and tried to reason with him. I explained he was in time-out for not listening. That it wasn't safe to be playing around glass. That he could get down if he would just calm down for a minute. He couldn't hear a word I was saying over the crying. He was inconsolable. "Shah! Shah! SHAH!" (He was saying "shovel", which is the closest word he has to "hoe".)

Finally after a minute or so, I unstrapped him and let him down, and gave him the hoe back. I just needed to find batteries and then we could pay. As we looked for the right size, there was suddenly an announcement overhead.

"Attention Christmas Tree Shop customers. Please be aware that our shopping carts have child safety straps built right in. Please make use of our carriages to keep your infants AND SMALL CHILDREN safe as you shop. Thank you."

I swear they were speaking right to us. Sete looked over at the customer service desk, and she even thought the woman was looking at us as she made the announcement.

Finally, we headed to the register. I ignored the store management's pleas to use the safety belts. My son was not hurting anyone, and I was very careful that he wouldn't break anything. Besides, we were just going to pay for our items and go. How much more trouble could he get in?

We waited in line for what felt like forever. To an adult, waiting in line for a few minutes is frustrating. To a two-year-old, it is unbearable.

CG distracted himself pushing the hoe around. Then he decided it was no longer a vacuum. Now, it was a guitar, his other favorite tool. He held it sideways and began his grunt and shriek routine while he pretended to be a rock star.

I tried to get him to settle down and stay with me in line, but he was getting more and more worked up with his 'guitar'. Sete tried to warn me - too late - that he was awfully close to the customer in front of us. He grazed her leg with the handle of the hoe just as I tried to move him away. I tried to get him to say sorry to her, but he wouldn't. I apologized to the woman for him. She barely turned around and gave him a half smirk, half snarl.

Defeated, I decided we had had enough shopping fun. I took him outside while Sete and T paid for our stuff. Our mall trip was over.

I placed CG in a carriage in Time Out (again) and sat next to him on the pavement. I kept seeing all the disapproving looks in my mind. I thought about a link to a book E had sent me recently: I Hate Other People's Kids. I kept thinking, "People hate my kid." It made me very sad.

It hurt that people were looking at him with such anger and disgust. He's not a bad child. It was getting near his naptime, and he was very excited about the newness of the trip. He's only two. This is only the third or fourth time he's been in a situation like this. Obviously, he was a little overwhelmed.

Of course, that was only obvious to me. To everyone else, he was just another loud, out-of-control kid. That they hated.


Rob recently wrote an entry about seeing another child that reminded him of his own daughter. By seeing her, he could, in a way, see how the world perceives his daughter, broken brain and all.

I've tried to do that with Ethan before. I've encountered other children with his level of special needs, although rarely. I look at them and watch how the world reacts to them. Watch how their parents behave and wonder how they feel. I try to be an impartial observer, to keep my mind free of the prejudice of a parent who knows too much. How would I react to that child if I didn't have Ethan? What would have been different five years ago if encountered them on the street, naive to their struggles?

Mainly, I see pity. Pity for Ethan. Pity for the other children. And pity for the parents, Jete and I included. It's not right. But then again, at Ethan's level of impairment, I'm not sure it's wrong either. And anyway, I know he doesn't care if anyone pities him or not. He's content no matter what.

I've never had these curiosities about CG before. Until recently, he has been a happy baby that most people seemed to like. "So cute." "Such a charmer." I just foolishly assumed, as many parents do, that my child would always be loved by the world. I love him so much, it's hard to imagine anyone not loving him.

(Although I draw the line at forcing baby pictures down everyone's throats. I'm not that stupid.)

I'm not sure why, but things are different lately. Between the terrible twos, an inherited short temper and the speech delay, he is drawing more frowns than smiles. I wasn't prepared for that day to come so quickly. I didn't expect to be here, on the warm summer pavement pondering the fact that the world hated my kid. But I was.

I know he isn't perfect on paper. His speech has improved tremendously, but there is still a noticeable delay that isn't going away. I sometimes wonder if that is really all he is challenged with. I have suspicions, but time will tell if there are any other issues we need to deal with.

Still, he's perfect to me. And it bothered me that strangers couldn't see how wonderful he was. How cute it was when he sang the Barney song, even if I was the only one who understood him. How creative it was when he turned a hoe into a guitar. How much joy he could get out of shopping on an ordinary Sunday afternoon.

I know that many people hate children in general. And certainly, it's rare for strangers to find anything interesting about your child, even if they love their own. I can accept that. I just find it hard to watch him be dismissed as a nuisance when he's just being himself. Just being two. Just being a little boy.


When we got home, I apologized to Sete and T for the drama he had caused. They insisted I had nothing to apologize for. I told them I wish he didn't bump into the woman at the register. I could tell she was irritated.

"Don't worry about it." Sete said, "Besides, I don't see how she can get off being so high and mighty, in her condition." I asked her what she meant.

"Didn't you see? She was pregnant!"

I had to laugh out loud. I could just imagine that woman going home to her partner, telling him about the obnoxious child she saw in the mall. They would console themselves that they would never let their child behave like that.

I instantly felt better. I only wish I had gotten her phone number. I could have called her up in a couple of years, see if she wanted to take the kids out shopping.

Or maybe I'd just to send her a baby gift in a few months. A nice, shiny plastic hoe. No child should be without one.