Stuff. And, Some Rambling.

Sete and T. decided to live on the edge and take CG to see his very first movie in a theaters today. Chances are, he won't sit through the first 10 minutes, but still. They're giving it a try.

Sete called this morning to make sure I knew I was welcome to join them. She wasn't sure if I wanted to be there for this big event in his life. I immediately said, "No!", having entertained dreams about three hours on a Saturday afternoon with the house to myself for days now. I had big plans! I might even paint my toenails!

After I hung up, I felt a little guilty. Should I have been there for his Very First Big Boy Movie? Then I remembered. Three hours on a Saturday afternoon with the house to myself. So. Here I am blogging instead.

***
CG has been much better since our "situation" a few weeks ago. Somewhere over the next week he got his bearings again and started getting back into a routine. His bedtimes got back to normal, although he's now decided instead of Daddy putting him to bed he wants me to do it. Not sure why this changed, but we're certainly not going to argue with what works.

Despite his good habits at bedtime, he's still refusing to nap nearly every day of the week, which is a little frustrating. He's only two, and he could definitely benefit from regular naps. Every day, we try to put him down. He seems quiet, but half an hour later, we hear him talking to himself. Wait a little longer and he's dismantled his entire crib and is sitting there, waiting for us to come play with him. We're baffled, but I figure as long as he's sleeping his usual 12-14 hours a night, he'll be fine.

I'm happy to report that we stuck with the discipline routine, and he's spending much less time in The Chair then he was earlier this month. Counting to three works again (for now) and I usually only have to go to two before he starts to do what he's supposed to. He still has outbursts where, frustrated, he throws his toys or screams at us, but a stern look tends to drive out an apology.

All in all, I really can't complain right now. Typical toddler stuff, but he's relatively well mannered. Let's just hope this lasts for a little while. At least until he's 18 or so.

***
The Plague spread through our house after CG caught a cold earlier this month. I got it bad, and missed a few days of work. Jete got it after me and even had an ear infection for a few days. But Ethan, the one with the most to fear in getting sick, barely got a sniffle. He had a stuffy nose for two days and that was it.

I'd like to pat myself on the back for the general health both boys seem to entertain. I want to think they both have magical immune systems thanks to The Miracle of Breast Milk. That those exhausting months I spent pumping for Ethan were not wasted, and that's why he's so healthy now.

Unfortunately, I know I can't take the credit. Truth is, they almost never encounter germs. They're not in daycare, and they rarely see other kids. The minute they're in the school system full time? We're doomed.

***
Ethan will be having surgery in August with Surgeon #2. We met with him as my friend recommended, and he said exactly what I wanted to hear. He explained why the surgery is important outside of fertility (to maintain hormone production). He'd like to try to do both sides at once, if possible. And he said we should have an anesthesia consult to discuss all of his medications before the surgery, just to make sure there are no interactions.

After we left, I wondered what the difference was. Did he say everything I wanted to hear because he really thought those things? Or because he knew I had complained?

I decided it didn't matter. What mattered was that I felt more comfortable about the situation, and I did think he was approaching Ethan's care with a better attitude. He was treating Ethan as a complex individual, and I respected that. I didn't regret speaking up at all.

Although, I did feel like Surgeon #1 was stalking us the entire time we were there. I swear he was staring at us in the waiting room, and we had to walk right past him as we went into the exam room with Surgeon #2. He was in our way at first, then finally stepped back, looking confused. Jete just stared at him and said, "Hi, how you doing?" I held my head high and kept on walking. He wasn't my concern. Ethan was.

***
I got a copy of my college's alumni news this week. In it was a tribute to one of my old math professors, who apparently passed away earlier this year. It saddened me more than I thought it might have, considering I wasn't particularly close to him. But still, he touched my life.

My college was centered around business, engineering and law. Math was an afterthought, and the department was appropriately small. There were only three other math majors the year I graduated, and most of my classes had seven students or less. We had the same professors for two or three courses in our time there and tended to get more one-on-one attention as a result.

On my last day of Real Analysis, the course he taught, I brought my final to his desk. He stopped me before I left and gave me a copy of this book, which he had inscribed. I had always been a quiet student, eager to ask questions and give answers when I had them. But this was a proof course, which is my absolute favorite part of math, and I think my pure love of the subject came out in classes like this even more.

In the front cover, he wrote:

Mete,

Your presence in my class this semester enhanced the experience for everyone. You've done a wonderful job.

I thought you might enjoy this book. It's one of my favorites. Hope you find it as interesting as I did.

Prof.

This was a new experience for me, having a professor reach out to me personally. I was amazed that he thought that I might have made a difference in the experience of the class, to him or to the other students. I always think of this gesture as representative of my time at this college. All of the professors there were so wonderful, very encouraging and always on your side. He will definitely be missed there.

***
E is visiting the West Coast this weekend, and we're going out to dinner with a few other friends. I don't think I can appropriately explain how excited I am about this dinner. I haven't seen her in a long time ("Winter! There was definitely snow on the ground..." was all I could remember) so it will be great to reconnect.

But more importantly? We're going out. To a restaurant. Sure, I get takeout once a week or so, but other than the last-minute half days Jete and I take, I almost never go out to eat anymore. It's nearly impossible on weeknights, and on weekends we feel too guilty leaving the kids with a sitter when we didn't see them all week. (And of course going to a restaurant with the kids is neither practical nor relaxing.)

Do you know what that also means? I'm going to take a shower, and put on real clothes. On a Saturday! Wild!

Off to paint my toenails now... Hope you all have a nice weekend!

Surrender

How can all that anger come out of something that cute?


Sweet dreams, CG. I know. It's tough being two.

(I can hardly wait for the teenage years.)

The Stink of Spoiled Mete

Two. And. A. Half. HOURS.

CG has been crying for two and a half hours. Sometime this evening he didn't get his way, for one reason or another. He wanted to watch a movie. Or throw his toys. Or some other ridiculous thing. I said no. He threw a tantrum. As I carried him to the time out chair - AGAIN - he got really mad. He kicked and writhed in his usual way.

And then, he bit me. Into his crib he went.

I used to be greatly opposed to putting him in his crib for time-outs, or punishment, or whatever you want to call it. I didn't want him to equate bedtime with being punished. And for a long time, we were very, very lucky in that sense. Bedtime was a happy routine. Books, quiet time with us, then a voluntary walk to his room.

There was a time where just the warning of a time-out would convince him to stop his bad behavior. A count to 3 - always sloooow at 2 - and he'd hurry up to pick up the toys he'd thrown or pick up the tissue he had shredded all over the rug and put it in the trash.

On the rare occasions we had to resort to time-out, he sat willingly in a kitchen chair and stayed put with no further warnings. After doing his two minutes, he would get down and say "sa-ay" (sorry) while doing his version of the sign, a sideways swipe across his chest. And he would behave afterwards.

Lately, things are unravelling.

Time-out has not been working the past few weeks. His tantrums are getting bigger and bigger. I try positive reinforcements. I try to reward good behavior when I see it. I try to spend quality time whenever I can. But it's getting harder and harder. And his behavior is getting worse every day.

It started a little over a week ago. He got sick. He had a slight fever that led into a cold. He was whiny. Fussy. But he was sick. So I probably indulged him a little too much. When he wanted to watch another movie after he had already watched two, I let him. When he threw his toys all over, I warned him, but then helped him pick them up. After all, he was sick.

I can pinpoint the night the tides turned. Last Tuesday. Fourth of July. A rough, whiny day of family picnics and neighbors' illegal fireworks. He had fallen asleep at his usual time, but woke up at 10:00, upset. I couldn't console him in his room, so I brought him into the living room to rock in the recliner. He wasn't in pain from what we could see. Just cranky, overtired. And PISSED OFF. We put a movie on. He was fine for a while, until one of us had the nerve to ask him if he wanted a drink of water. Then the crying started. We settled him down only to shift in our seats or brush his leg and he'd become hysterical again.

Finally, at 11:30, exhausted, I suggested taking him for a ride around the neighborhood. Ride the roads, my cousin used to say when she had to put her grandchildren to sleep. Ride the roads. She'd take them out a half hour ride and they'd pass out. I couldn't imagine having to rely on such a crutch on a regular basis. But here I was, close to midnight on a Tuesday with no other options. Ride the roads. What the hell.

As soon as he was strapped into the carseat, the crying stopped. He looked out the window, clutched his stuffed dog and waved goodbye to Jete. We were going for a RIDE. All was right with the world.

I drove for fifteen minutes before he finally passed out. I drove another fifteen just to make sure it was for real. He stayed asleep as Jete lifted him out of the car and into bed. We fell into bed, emotionally spent. It was a one-time thing, I thought. Sometimes you have to do those kind of things as a parent.

The next day, I called out of work. If his mood was anything like the day before, I didn't want to leave him with anyone else. He was whiny again, but pretty much okay. Until he brought his shoes out. "Shoes-ee? CAH?" I explained that no, we couldn't go in the car. Because it was daytime, and I was in my pajamas and -

"CAH! SHOES-EE!"

The first meltdown of many began.

(Two hours and forty-five minutes. Although he's definitely weakening.)

He has been having these fits multiple times a day since. When I get home from work, when my mother comes over, when I take a shower - he automatically thinks he's entitled to a ride in the car. We must go somewhere. In the car. NOW.

Unless you indulge him, the day is shot. He begins a series of endless tantrums over nothing. His fudgsicle dripped on his hand. His puzzle piece didn't go in the first time. His turn with the garden hose didn't go as he planned and he sprayed the wrong plant. His request for a fourth piece of chocolate is denied. Each tantrum bigger, longer than the last.

I wonder often, am I spoiling him? Is that why he is doing this? Am I raising a future serial killer? Someone who thinks they are entitled to everything they want at the moment they want it? Somewhere along the line, did I teach him that throwing a temper tantrum is the way to get things you want? Is it truly All My Fault?

Or is this a normal part of being two? Is it expected that he will cry and throw himself on the ground and carry on hysterically when he doesn't get his way? Is it part of growing up? Is it, as I secretly hope, a Phase? Will it pass?

People probably think I'm evil for letting him cry this long - 2 hours and 47 minutes - abandoning him, teaching him I won't be there for him when I need him. I'm sure I thought it more than once. But I never dealt with a child with a will this strong face to face.

He is his own worst enemy. He fights everything insanely, even when I explain that if he just STOPS for a minute, he can watch that movie, have that fudgsicle back, go outside and play. But it is too late. Because it doesn't matter why the fit started. That's irrelevant. It just matters that right now, he is MAD.

He's getting physically stronger. The bite today is just a taste of his violence towards us. He kicks - HARD. And throws things. Lately, I've been hit in the head with a puzzle piece, a football and his shoe. And I don't care if he's only two. That stuff hurts.

He throws himself around too. He flails and thrashes, trying to injure himself or someone else. Kicks the glass on the entertainment center. Slams his head back, back on the couch until he strikes wood. Then cries with a new ferociousness.

His crib is the only place I feel he is safe from himself. And frankly, the only place the rest of us are safe from him. It's one thing for him to bite or kick me, but we can't take the chance that he'll injure Ethan, who can't defend himself or see a ball coming at his head. And so, I broke my own rule. Into the crib he went.

I tried taking him out after the first fifteen minutes. He seemed to be quieting, so I brought him to the living room. He sat, cuddling with me for a little while. Then he got up and tried to turn the TV on. "CG, not right now. I don't think we should watch TV just yet - "

SLAM. He threw his fists against the cabinet. Flung himself on the floor and started the tantrum anew.

After a few more minutes, he went back to the crib. After another twenty, I tried again to bring him out to civilization. "Do you want some water?" I worry sometimes. He hardly eats anything at all during the day, and with these tantrums he eats even less. More control games. He agreed, so we went into the kitchen. As I reached for the ice, he saw the fudgsicles and asked for one. "Are you sure you want one? You didn't finish the last one -" More tears. I grabbed one out of the box and quickly unwrapped it.

Giddy, he walked into the living room and sat on the couch. Licked it a few times. Flung himself back against the couch and started to slide. And got mad. I took the fudgsicle as he tried to smash it against the fabric. "You have to be careful -"

More tears.

After that, it was a lost cause. We realized each trip OUT of the room was making things worse. He was beyond exhausted. It was time for him to go to sleep. The only thing stopping him was himself. Trying to force him to calm down was impossible. And so, the countdown.

It's so hard to know what's normal in situations like this. Ethan should have broken us in to what a two-year-old is like. But he couldn't. He has always been an angel in so many ways. Through his surgery and occasional illnesses, he has had his moments, but they always pass quickly. He is essentially a happy boy and has always been that way.

In so many ways, raising CG is a million times more difficult and emotionally taxing than raising Ethan. Strangers may think having a disabled child is so hard, so much harder than a typical child, but on many days, it is not. The stress that comes with parenting Ethan is from the inside. Will he be okay as he grows up? Is this medicine working? How will he ever know we love him? But there is never the wondering if you are making the right move in this delicate game of parenting. Just - Is he okay? Is he happy? And we know without question that he is.

We love CG without question. He is the light in our lives that we needed after the darkness we went through in Ethan's first few years. But it is so difficult to handle his mood swings. I only have a little time with him on weekends and each night, and it's so hard to have him miserable throughout most of that time. It wears me out in ways I never expected. I just keep thinking, "Why does he have to make it so hard?"

Maybe part of the problem is that Ethan set an impossible standard with his almost constant good attitude. Even through his brother's tantrums, he is calm. Listens to him cry and carry on and just smiles a small smile. Maybe he's slightly amused by the situation. We'll never know. And we'll never know whether the brain damage created this happy being or if his natural personality is shining through.

But I do know one thing: thanks to Ethan, Jete and I are really the spoiled ones.

Hairy Plodder

I got my hair cut yesterday. This was the first time I'd done any official grooming in almost six months, and it was long overdue. I was beginning to be crushed by the emotional weight of my unruly hair.

My cousin, Dee, is my hairdresser. Unfortunately, she only works part-time at a salon, and our hours never seem to mesh. Every few months I go through a phase where I call her, begging for a few minutes of her time, and she sets a date where I can go to her house. I hate to bother her like that, but by the time I actually call her, I'm desperate.

I got two inches cut off and fresh highlights. I washed my hair upside down in the bathtub with her luxurious $25.00 shampoo and matching conditioner. She did her fancy blow-dry technique, turning my normally "bumpy" hair smooth and straight. The finishing touch was to create lots of little flippy things at the bottom. A very fancy look for the normally un-fancy me.

(I know there are people for whom this is just an everyday look. Me? I'm not one of them. My daily hair routine is as follows: wash with whatever shampoo was on sale that month; condition with whatever conditioner was on sale that month; let hair air dry. Hair dryers are like power tools to me. I just can't figure out how to work 'em.)

When she was finished, I went into the bathroom to get a glimpse of the new, clean, me. I stared at my reflection and was slightly stunned. "I look... like somebody's mother."

In the kitchen, she sounded worried. "You don't like it. Do you want me to do something different...?"

"No, no, I do like it. I mean, I am somebody's mother. I should probably look like one, right? Better that than the ratty mess I was before."

Yet somehow, even though I looked like somebody's mother, I could see a 5-year-old version of myself hidden underneath.

Oh, 1980. Velvet shirts. Gap toothed grins. Dorothy Hamill haircuts. Where have you gone?

***
This morning, I walked into work and got immediate compliments. Actually. A few too many compliments for my liking.

"Wowwwww, look at you! You look great!"

"Did you see the new girl on our team?"

"I loooove the new style. So shiny!"

"We should all go out drinking tonight! Celebrate your new look!"

Even my boss, a man, who rarely notices anything about anyone's hair, makeup or clothing, said, "Hmm. I like the highlights."

What the heck, people? It's a hair cut. I didn't get an extreme makeover or anything. Tone it down a notch or two.

But thank you all for affirming the fact that, yes, my feelings of frumpiness weren't imagined. I was a scraggly mess. Clearly, I need to up my hair regimen just a bit.

So, what? Every five months? That should do it. Right?

A Vision of Utopia

Finally, someone out there gets it.

To think, one day we might not have to recount Ethan's entire medical history to every medical professional we encounter - from the ultrasound tech to the numerous specialists we see. They would actually be prepared and informed ahead of time. It's an idea that's almost too good to be true.

Which is pretty sad, when you think about it.

Taking The Next Step

First, thank you all for your thoughts on my "kids like these" post. I really appreciate the different perspectives.

Shortly after our appointment, I mentioned the experience to a friend. She has three kids and dozens of doctors in her mental rolodex. I thought she could recommend a local second opinion, or at least give me an idea about how to find a Boston one. She suggested I call Ethan's orthopedic surgeon to see if he could recommend someone.

But the next day, before I had a chance to call anyone, she called me at work. "Okay. Don't be mad. I did something."

Turns out, her cousin is a nurse at the local surgeons' group. She called her about the situation to get another opinion. The cousin/nurse reaffirmed that Surgeon #1 is an excellent doctor (which I never doubted). But if we weren't comfortable, there is another doctor in the group that we should meet before going to Boston. She knows him personally as well as professionally and he's "great".

Honestly, I don't want to bring Ethan all the way to Boston if it isn't necessary. So we're willing to give Surgeon #2 a chance first. I made another appointment with him next week. If things still don't feel right, then we'll try Boston.

The paranoid part of me has decided I'm probably the talk of the office now. Surgeon #1 probably feels hurt and insulted. They have staff meetings and talk about That Crazy Mother, the one who is so sensitive. From now on, they'll tiptoe around me trying not to hurt my feelings.

I shouldn't care, but the possible sensitive label has been bugging me. I'm sure there are people out there who think I should just get over it already. Looking at his exact words, he didn't say anything improper about Ethan or special needs children. So why did his words sting?

I'm not one to be bothered by semantics. In many ways, I prefer Rob's language - Ethan's brain is broken. I don't feel I'm demeaning him by saying that. I tend to use the phrase "special needs" as a catch-all because it's faster than rattling off a list of medical conditions. And when people talk about Ethan, I don't care if they say he's challenged or broken or disabled or handicapped or special - as long as they treat him with dignity and respect. He is Ethan before any of those other labels.

The reason kids like these bothered me had nothing to do with the choice of words. It was the attitude behind them. As a doctor who could potentially be operating on my son, I needed to feel that he was treating Ethan the individual. That he was looking at him as a whole person with unique needs, different than the next child that crossed his door with Down Syndrome or Autism. Instead, I sensed sweeping generalizations about children with special needs; a group that is as diverse as any other group of human beings.

No matter what, I'll hold my head high when I walk back into that office. I know that I'm doing the best I can for my children. If that means I have to bruise a few egos along the way, so be it. At the end of the day, their safety and well-being is the only thing that matters to me, and I have to trust they're in the right hands. Besides, plenty of other testicles will come along for Surgeon #1 to fix. He'll be fine.

And if I have anything to say about it, so will we.

Spread The Good News

This was a good week. Among others:

• Cecily and Charlie had their baby - Tori Ann - after a long, difficult road. She's gorgeous.

• E found a dream of an apartment - just in the nick of time.

• Dream Mom celebrated the graduation of her Dear Son. This was especially triumphant after the medical scare he recently went through.
• M&Co's BoyChild reached a major milestone.

With all the happiness out there, it's hard not to feel a little happy, too. (Even if it has rained for 20 out of the last 30 days.)

Happy Friday everyone!