Tuesday, December 30, 2008

Cast on

Never could devise a splint that would stay on Brody's hand without slipping (or Brody pushing it) off.

Thus, we went back to our original, local orthopedic surgeon for a cast today.

Why? Because his right hand - the one that's having surgery January 29 - is completely back to being perpendicular to his wrist. See photo.

Dealing with doctors is a little like dating. We pretty much broke up with this doctor in January 2008, after going to her for a year, because we got in at Shriners. It's not her, it's us.

But now, we need a local doc to stretch the soft tissue in advance of the surgery. And Children's Hospital hand clinic is less than efficient.

J and I were both anxious about this. Would she take us back? Even if we just need her for certain things? Essentially, we're just using her office for casting. Like some kind of orthopedic booty call.

Well, she wasn't available until late January, so we scheduled with the PA for this morning.

Keep in mind, the first time Brody was casted he was 4 months old, and he screamed during and then after the casting for several hours. It was miserable. The pain comes from stretching tendons. They are tight. That's why they are perpendicular.

I dreaded the appointment this morning. But I knew it had to be done. It's better at the time of surgery if the soft tissue around the wrist and hand is already stretched.

First, Brody got to pick his cast color. He picked pink. I vetoed it, because J would have been unhappy and I'd have to deal with people asking me how old "she" is. . . . So we picked purple. I know it's not correct, and I'm genderifying my son, but there it is.

Second, I dosed Brody with Tylenol and Motrin this morning before we even left the house. I remember those hours of screaming. I remember every single other time he's been casted, and how he cried during each session. To hell with that.

Brody got on the table, in my lap. Purple cast picked out, the "sock" went over the arm. At this point, Brody was unsure of whether to be fearful or not. I told him "no owies, sweetie, just a sock on your arm." He didn't seem too sure.

Then the PA started rolling the wet purple cast out over his arm, and the nurse, the PA and I started ooohing and ahhhing about how cool and pretty that cast was. The nurse was holding Brody's arm straight, and I'm holding Brody.

Not one single tear.
Brody just watched the cast being applied. He didn't even whine or complain. Does he know why we're doing this? Does he understand what I tell him?
Then he asked to have a cast on the other hand.
No, sweetie, just this hand.
The PA was amazed he was able to stretch it that much, and that Brody didn't seem to mind at all. The PA said the tendons are actually much looser than they appear, which is why he was able to get Brody's hand straight this morning, and with no complaints out of Brody. (I believe this is because a few weeks ago, I started a new "game" with Brody, where I'd hold on to his right hand, and he'd lean backwards to see how far he could go. Stretching it manually. It made him laugh, and I was kind of hoping it would obviate the need for a hard cast, but it didn't straighten anything. I'm glad at least it seems to have possibly helped stretch something somewhere though).
We left the office. Brody told me the cast was very pretty, then we talked about how windy it is outside.

We go back in two weeks because the PA thinks he can get even more stretch out of it before the surgery. We'll remove this cast, and get another one that actually over-corrects the tendons, so they are loosy goosey for Shriners. (That's my term, not a medical term).
Oh, and the best part has nothing to do with this - but - Brody's started sponataneously telling me he loves me. First time was Sunday. I had just finished tickling the bejesus out of him. He looked up at me and said "Love mommy" on a sigh. Got a "I yuv you mommy" last night without me saying it first. Then another one today, after the cast, when he was leaving to spend a day with his nana (J's mom) . He also told me to drive safe.
This parenting thing might just work out after all.

Monday, December 29, 2008

We are famous.

Recognize anyone you know?

Who knows what the tide could bring?

The universe is a clever thing.

I'd seen the ads for Castaway on cable for a few days now. I remember liking it when I saw it. The first time I saw it was after my second miscarriage, and I vaguely remembered that I really liked the so-what of the movie. That scene where somehow the entire point of the movie is conveyed to you. He's on an island, he floats to a rescue, big deal, so what. Then there's the scene with the so-what soliloquy and it was just what I needed at that moment.

I had forgotten about the so-what soliloquy and found myself watching Castaway last night, even against my wishes. I happened to flip to its channel, and couldn't stop watching.

Then I got an update on Dante. I'll not get into it here, but the end is nearing, and I couldn't stop crying. I realized why I'm so taken with Dante, considering I've never met his mother or him in real life.

It's because it could be Brody. And man, that's a hole that me, a former panic attack sufferer, could really climb down quickly, isn't it? Before I had children, I thought children with illness were a sad thing. And when I had a child who has an illness, I experienced terror for the first time in my life.

All of those cliches about how much you love your child are true. Every single one of them. It's a shame that they are all cliches, too, because I don't think you really comprehend the depth of love in your heart until you have a child. And when you have that, you also have this vulnerability that is glaringly exposed: your child. And when that child is threatened, nothing else matters. Nothing.

Which is why, in a great measure, I have been so affected by Dante. Because in a way it doesn't have anything to do with Dante, but with Brody. Dante's family is experiencing my worst nightmare, and I can't look away. Because it could still be us. It could still be him. I could choke on my fear and suffocate myself with powerlessness.

Which is what made me sob in the shower after reading the update last night.

Then I remembered the so-what soliloquy from Castaway. And how it helped me when I first experienced a profound lack of control - recurrent miscarriages - and why did I like that movie so much after that scene? So I looked it up. Ahh. . . . the universe is very clever at reminding me what I need to know and learn.

Here it is. Tom Hanks is back in civilization, and he's just left Kelly, his fiance, at her house with her husband and new baby. He's got a whiskey on the rocks clinking in his glass, and unshed tears in his eyes:

We both had done the math. Kelly added it all up and... knew she had to let me go. I added it up, and knew that I had... lost her. 'cos I was never gonna get off that island. I was gonna die there, totally alone. I was gonna get sick, or get injured or something. The only choice I had, the only thing I could control was when, and how, and where it was going to happen. So... I made a rope and I went up to the summit, to hang myself. I had to test it, you know? Of course. You know me. And the weight of the log, snapped the limb of the tree, so I-I - , I couldn't even kill myself the way I wanted to. I had power over *nothing*.

And that's when this feeling came over me like a warm blanket. I knew, somehow, that I had to stay alive. Somehow. I had to keep breathing. Even though there was no reason to hope. And all my logic said that I would never see this place again. So that's what I did. I stayed alive. I kept breathing. And one day my logic was proven all wrong because the tide came in, and gave me a sail. And now, here I am. I'm back. In Memphis, talking to you. I have ice in my glass... And I've lost her all over again. I'm so sad that I don't have Kelly. But I'm so grateful that she was with me on that island. And I know what I have to do now.
I gotta keep breathing.
Because tomorrow the sun will rise.
Who knows what the tide could bring?

Friday, December 26, 2008

This is how Brody rolls. . . .

Sporting his helmet, courtesy of Santa.


Thank you for the birthday and Christmas wishes.

Brody had a great Christmas. Jeremy and I both think this was, essentially, his first Christmas, even though technically it was his third. Anyone else feel that way? This is the first Christmas he was aware of Santa and all of the trimmings.

We "ran out of" (ie, accidentally ate the intended) cookies for Santa, so we left out peanut butter crackers for him. Santa took a bite from each one. Then Brody ate the rest for breakfast.

As I predicted, after I told him Santa had been here, Brody kept asking "Where go Santa?" Because, of course, we'd been telling him for weeks that Santa was coming. He just didn't realize that Santa also goes rather quickly. He has a lot of ground to cover.
I think Brody's favorite gift was the huge toy rockabike (motorcycle) that is 14 inches long, and makes motorcycle noises, and the easel, and the sword and helmet. And the train set. Not a bad Christmas for Brody.

I made eggs benedict with bacon for breakfast. We watched a Christmas Story. It was rather nice just the three of us.

Which leads me to this. I have a friend who is married. They are in their 30's, no kids. They live in a state other than either set of parents. She hates travel at Christmas, and vowed that this was the last year they would travel for Christmas, kids or not, because she wanted to start making their own traditions around Christmas.

I have another friend, also married. Also in their 30's. Also living in a state other than their respective parents. They travel every year to one family or the other at Christmas, and I don't think have ever spent Christmas just the two of them.

I was trying to remember what Jeremy and I did, but as a friend pointed out, we have family embedded here in Denver - on both sides. So which is it for you? To travel or not on Christmas. If you have kids, do you travel to see family? If you don't have kids, do you travel?

I hate traveling at the holidays, and so does Jeremy. So we've never done it I don't think. I like our house and having Christmas within its walls. But even before we had Brody, we liked to spend the morning just the two of us, before visiting our embedded relatives in town. I guess there is no right or wrong, just whatever makes you happy.

But if you had your druthers (I love that word), which would you choose? Travel to see family or stay in your own home for Christmas?

Wednesday, December 24, 2008

Even we could do this

I was at Starbuck's this morning, ordering Brody's teachers' gift cards through the drive through. I decided to also treat myself to a mocha.

When I pulled up to the pay window, the Starbuck's employee informed me that the lady in front of me just bought me my mocha.

At first I thought it was an accident. Then I realized it was purposeful.

So I bought the lady behind me her soy latte.

It made my day, and from what the Starbuck's employee told me, it had been going on all morning. Everyone was buying everyone's drinks with a Merry Christmas attached.

No, it doesn't actually save anyone money. But it spread holiday cheer.

And for the cost of $3, even I could afford that.

Tuesday, December 23, 2008

If you say it's my birthday

Then you'd be right.

When I was in counseling for my miscarriages, my therapist told me I had to celebrate the day I was born. And I am pretty glad about it. So here we are.

A few things about me.

Then:

My name was almost Joy Noel. I guess my mom had a case of the crazy pregnant lady, because that combination was apparently on the table. If I was a boy? Paul. Somehow we got Christine, for Christmas. Actually, much better than Christmas. What if my name had been Christmas? I shudder.

My mom brought me home from the hospital on Christmas day. In a stocking. I have now inherited the stocking.

Instead of a mistake, I was a "happy surprise" after a vacation to Florida. Seven years after my nearest sibling was born. I was some kind of surprise, I'll say that.

I had the most spankings of any of the five other children in the family by the time I was 10. I think this was because the other 5 children were quite masterful at blaming me for everything.

How can I tell if someone is a true friend? No Christmas wrapping on my birthday presents. No "combination" presents. And no referring to Christmas on my birthday.

I used to hate it when my sister and brother called me by the name they made up for me: orkyshnorkhummer. I would get so mad and hurt. I have no idea why.

Now:

I always bring my cell phone in with me to places even if I'll only be a few minutes: daycare, 7-11, bank, gas station. This is because I think at some point I will be one of the patrons during a robbery, and I will need to call the police.

I carry a pair of chopsticks with me in my purse most of the time. The disposable kind, not the nice kind. I think one day I'll have to use them. You never know. My sister Barbara told me once that this fact proved to her that I was her sister.

I am drawn to black and white photographs of people from "olden times." I always feel like I will recognize someone, even if they lived a hundred years ago.

I keep a running list of possible aliases for myself made out of real names I see every day so that they are believable. Just in case. Needless to say, during phonebanking for the Obama campaign, I got a few good ones. To date my favorite is Lolita Breckenridge. I can't tell you the others, for obvious reasons.

Things I am always in the mood to shop for: comforter and sheets, dishes, headbands for my hair and lipstick.

Monday, December 22, 2008

Just so I can make this all about ME

Two guilt items today.

1. When someone gets you a MUCH nicer gift than you got them. Eg, I gave a chili and cornbread mix from the Women's Bean Project. She gave me a large red leather tote and a really nice scarf and hat set that I actually need and like very much. What am I supposed to do with that? I love them, I'm not refusing them, but my gift SUCKS now.

2. Dante. Is this survivors' guilt? The grief swallows me and then I feel a need to step back and remember that in my life, this is not happening (and yet it is) and then I want to celebrate Brody and Christmas and talk about Santa (he woke up telling me "Santa Claus is coming"). Then I feel guilty for stepping back. As if it does Dante or his family any good that someone across the country is grieving with them.

Hell.

Brody's first prayer

Brody said his first prayer ever (well, that I know about), and it was for Dante. I told him to fold his hands, and he did. Then I said the words. And then he whispered them. It was so cute and heartbreaking all at once.

Dear God,
Please help Dante.
Give him peace.
Help his mommy and daddy.
Give them peace.
Amen.

I thought maybe that because we did the first prayer in the dark at night, that he thought he should whisper. So the next day we did it in the morning, in daylight.

He still whispered.

I swear he knew what we were doing.

Friday, December 19, 2008

And a little distraction. . .

Have you seen the trailers for Will Smith's new movie, Seven Pounds? Been wondering what the movie is about?

I found a spoiler.

What do you think?

Thursday, December 18, 2008

A little levity

Does everyone who has children talk in their child's language? You know what I mean, that certain way of pronouncing words that only your child(ren) has?

Jeremy and I talk to each other in Brody's language. When one of us needs a shower first thing in the morning, we have wrinkled our noses and bared our teeth and said disdainfully, "Drrdeee."

When we refer to the Christmas tree, we pronounce it "ochadeese." As in, "Can you turn on the ochadeese lights?"

"Can you get me something to drink? Peeeeeeeezzzz?" (While signing the please sign on our side)

We have drawn the line and do not address each other as "mommy" or "daddy" when Brody is not in our presence. However, when he is, we still do. Because Brody started calling us "Jemmy" and "Kiss", and then, recently, just "hon," as in Brody repeating Jeremy.

J: Thanks, hon.

B: Anksh un.

The only sound I cannot recreate that Brody makes is the "sh" or "ch" sounds. When he says "bus" or "lunch" he practically whistles at the last group of letters. I think we have a lisp on the way.

Are we the only ones doing this stuff?

Wednesday, December 17, 2008

An odd reaction, perhaps

As I sit here, compulsively checking for a carepages update on Dante, and not getting any, and my hopes dimming by the hour, I started to think about how awful it must be to be a pediatric oncologist, and to have to tell parents that their child is going to die.

So I've sent out Christmas cards to all of Brody's doctors and other care providers: the nurses at Shriners, our care coordinator at Shriners, the neurologist, gastroenterologist, urologist, plastic surgeon, orthopedic surgeon, and Brody's regular plain old pediatrician.

I don't know who their other patients are, and certainly I assume their work is not as regularly heartbreaking as a pediatric oncologist's work must be.

But still, I figure they might need to hear and see how great Brody is doing almost as much as I need to tell them.

And it gave me something to do.

Tuesday, December 16, 2008

Remember Dante?

Remember Dante? The little boy, exactly Brody's age, who has been fighting neuroblastoma since last December? 

We just got an urgent carepages update. Dante's dying. There are no longer any options to cure him. Only extend his life. His mom told the doctor to make him live long enough to get through Christmas. Dante's third Christmas. 

If you are a praying person, or even if you are not, pray that Dante and his family find strength, peace and comfort.   

Monday, December 15, 2008

It's okay to be different

A few weeks ago, I was shopping online at Amazon and came across a book I thought Brody would like. I bought it and it arrived, but I never bothered to get it out.

Last week, Brody and I were counting on his fingers. He got upset and seemed frustrated that his fingers only went to 8. He kept wanting me to say "Five" while still on his first hand. I eventually did and just sort of added two fingers in name only. I kept it light and we laughed.

But the episode upset me. I was bothered that Brody is already experiencing frustration on this score, and that I have no skills with which to help him. Should I fudge the two extra fingers? Have a talk and say "Brody has 8 fingers. Mommy has 10." Ignore it? Address it?

Then I opened the box with the book I ordered.

It's this book, It's Okay to be Different by Todd Parr.

Jeremy read it to Brody first - Brody was mesmerized. It's okay to be a different color, it's okay to have missing teeth, it's okay to have no hair, it's okay to eat macaroni and cheese in the bathtub, it's okay to have wheels (showing a child in a wheelchair), it's okay to be adopted (showing a puppy in the pouch of a kangaroo).

When Jeremy read it to Brody, he read my mind and added "It's okay to have 8 fingers." At the end the author's closing message is "you are special and important just because of being who you are."

Brody immediately wanted to read it again. And again. And we did.

And then I realized when I ordered this book I must have known somewhere inside that I needed this book as much as Brody.

Thursday, December 11, 2008

Brodyisms

Recently, while Brody and I were cuddling, he stuck his pinkie up his nostril, and started breathing through his nose fast. He didn't say anything or ask for my input.

But he made himself laugh so hard I wondered if he stopped breathing.

This is a sure sign of genius, n'est ce pas?

************************************************

Brody has a running commentary about things he likes. For example, when looking at the fish tank, he'll say "I like fish." Except it actually sounds like, "I yike it da fish."

"I yike it da ochadeese" means "I like Christmas trees."

Since his latest surgery, he has a scar that's about 3 inches wide just under his bellybutton. We only see it when we change his diaper.

B: Dat, mommy? (What's that, mommy) (pointing to scar)

Me: That's your scar.

B: (considering scar for a second). Scawwwwwrrrrrrr. . .

Me: Very good. You said that nicely.

B: You say it, mommy.

Me: Scar.

B: Yeah. (still staring at scar) I yike it da scawwwwwrrrrrr. . . .

Me: Mommy like it da scar too.

B: (smiling) Nother one! Nother one! (happily rushing to roll up his sleeves and show me his scars on his left arm and wrist)

Me: Oooh, those are cool, Brody. I like Brody's scars.

B: (smiling) Nother one! (rolling up the right sleeve)

I kissed each one.

Wednesday, December 10, 2008

This is love

The other day, Jeremy and Brody were drawing. Brody wanted daddy to trace his hand. He did. Then Brody wanted Daddy to trace his hand. He did, right over Brody's. Superimposed hands. I loved the imagery.

Last night, Brody is in bed. That drawing is still out. Jeremy is looking at it.

"Did you ever notice that your pinkie is pretty much the same size as your thumb?" He asks me from the living room.

Distracted in the kitchen, I respond, "Um. . . no." I wonder what the hell he is talking about, and marvel at the randomness of his conversation.

I walk into the living room. He looks up at me and asks, "Do you think it would be weird to have no pinkies? Do you think you'd miss them or do you not use them that much?"

Why is he asking me about pinkies, I wonder. Our son is missing thumbs, not pinkies. Still, I look at my own hand. "Eh," I say, "You probably wouldn't miss them. I don't think I use mine that much."

I walk back into the kitchen, grabbing a glass and opening the fridge to get milk. I set the milk on the counter. I wonder where my vitamins are and whether I have any echinacea left.

"Because," he says from the living room, "why don't we just transplant my pinkies onto Brody's hands when he's older. They're about the same size as a thumb. I won't miss my pinkies."

I had the milk jug poised over the glass and had to set it down immediately. My body bent in half and my forehead rested on the counter top and I was already starting to cry. That silent, shoulder-shaking, all-consuming kind of cry.

I don't know why I was crying. Jeremy was talking about giving Brody his fingers as if it was of no more consequence to him than giving Brody his old t-shirt.

It was one of the most beautiful things I've ever heard in my life.

Monday, December 8, 2008

The perfect gift for everyone on your list

Books.

The publishing industry is in a recession too. And if you have ever become completely absorbed in a book, or thought about a book long after you've finished reading it. . . buy books for those hard to buy people on your list.

Oh, would you like a recommendation? Here's one. And another. And this. If you don't like these books after you have read them, I will buy them from you.

Or just browse categories on Amazon.com or BN.com - the sites have made it so easy for you to find books for those on your shopping list, by interest, editorial acclaim, customer rating, genre, date of publication. And it's free shipping. You don't even have to waste gas or time getting to and from the bookstore.

Who gives books as presents? Smart people. That's who.

Brodyisms

Me: Can you say Christmas trees?

B: Ochadeese!

Me: Very good! Now, can you say "Chris"?

B: Kiss

Me: "Mas"

B: Mush

Me: "Tree"

B: Tee

Me: Very good! Now say it together - "Christmas tree"

B: Ochadeese!!!!!

Friday, December 5, 2008

Santa is kind of an ass

This week, J & I watched Ruldolph the Red Nosed Reindeer for the first time with Brody.


And maybe for the first time since I've started specializing in employment law.


Because I came to the conclusion that Santa is kind of an ass. And so are his reindeer.


First, Donner, as Rudolph's father, is ashamed of Rudolph's nose. That's not an employment issue, but really I think it reflects badly on Santa to have one of the famed reindeer acting so poorly toward his only, baby son. And Comet?? He leads the other reindeer in ridiculing and excluding Rudolph. Jerk.


Second, Santa only employs male reindeer. Has he even heard of Title VII?


Third, Santa is a jerk about Rudolph's nose. When Donner makes an excuse about Rudolph's nose, and says he'll grow out of it, Santa says essentially that Rudolph had better if he wants to be on the sleigh team. And until the end Santa complains about the noise that the nose makes and its glow. Santa is not celebrating differences. He is not looking at the bright side. He's acting like a mean old man. It's only when Santa realizes he can get something out of the glowing nose - a light in the fog - that he acts nicely towards Rudolph. What kind of message is that?


Fourth, Herbie (or Hermie?) the elf is a child. As it appears most of the elves are, except for the mean head elf who keeps yelling at Herbie and deriding his career choice of dentist. What kind of Santa is Santa to force a child to make toys? Isn't that called slavery? And child labor? Doesn't Santa like children? Why would he force them to make toys?


Let me say that, for all its faults, we've already watched it three more times since Tuesday. And, do you know what Brody said when he saw Herbie (Hermie) the elf for the first time?

"Pretty eyes." I checked what he said. "You think the elf has pretty eyes?"

"Yeah, pretty eyes."



Thursday, December 4, 2008

Two early Christmas presents

1. J is officially NOT laid off.

2. When J came home last night, he slipped a ring on Brody's finger and then said "Oh, look, what's that?" I looked down, and it was the ring from which the pony ate the sapphire. There was a new center stone in it.

J explained that he had swiped my ring from my dresser, and taken it to the jeweler to find a new center sapphire for Christmas. But, he became concerned that I'd think I had lost the ring, so he got it from the jeweler and gave it to me early.

Now this next part may not seem especially romantic, but it was to me. It's my favorite part of this story:

J explained to me that the jeweler couldn't find a center stone that didn't cost a small fortune. I looked down - there was a blue stone in the center. What's this then? I asked. He said the jeweler just gave him the stone to have in the ring for now - it's crystal or something - until we find a sapphire that we can afford.

My heart melted. Because money is tight, we have so many medical bills, layoffs are a potential, and I'm nervous. And my husband is a classic spendthrift. But he is trying to be better. And so for him to not buy something is more thoughtful than if he had gotten the stone already, which probably would have made me insane with frustration. And because of the nice jeweler, I can wear the ring again. Happy Christmas to me!

Wednesday, December 3, 2008

Layoffs today

Today is the day that people at my husband's company are being laid off.

He works for a publicly traded company.

Last month, they said this office had been spared.

Three weeks ago, they said they did, in fact, have to cut 15%.

Two weeks ago, they told my husband that he was "safe."

Last week, they told everyone that December 3 would be the day they were announced.

Monday, a few people got emails to meet with the HR director and their immediate supervisor at 4:30pm today.

J did NOT get an email. He actually is safe. For now.

It's fairly awful at J's office today. I don't know why they are dragging this process out, and I don't know why they have to layoff people right before the holidays. Except that the 4th quarter is coming to a close.

Of course, Brody is on J's health insurance. If he got laid off, we'd put everyone on my health insurance. But with Brody's pre-existing conditions, I don't know if they would be covered or not.

Which reminds me that I have a stack of bills from two different hospitals from our busy fall of three surgeries and one procedure in 6 weeks.

For now, we are employed. And grateful for it. And sending prayers today to the workers who will be laid off.

Monday, December 1, 2008

Thankful redux

We had a crazy, loud, fantastic Thanksgiving. Our house was filled with family, and it overflowed with laughter and love. There was no drama, no squabbling. Just happy moments and good memory-making. Jeremy asked me last week what I wanted for Christmas and my birthday, and I couldn't think of a thing. Truly. I have everything and everyone I need.

The last few weeks I've had rumblings running around in my head. I've sort of been holding out on the blog, but I hope to get to them soon.

Finally, an update on the surprise party for my brother. One of my sisters read that blog post and wrote me a very long email in which she rather eloquently added her perspective which both challenged a few of my assumptions and validated a few of my feelings. And I love her for it.

Tuesday, November 25, 2008

If Brody had a blog

If Brody had a blog, this is what he would write:

Mommy asks me two questions every day. She asks me, "Are you a silly wiggle muffin?" whenever I make her laugh, and "Are you the cutest boy ever?" when she stands me up after dressing me in the morning. I don't know why she asks me over and over. I don't think she knows whyeither. I always smile. I don't think I mind her asking me those questions.

Daddy asks me "Who's the best son ever? Is it Brody?" I would have to say my answer to that is, "YES."

When the three of us are in the car together, I make my mommy and daddy sing to me. Together. Daddy doesn't know the words to many of my songs, but if he tries to stop singing and just let mommy do it, I say "Daddy sing!" and he does. Because no one wants to hear me cry.

Sometimes I say to them, "Mommy, Daddy, watch!" and I run in circles around the house. If they try to stop watching, or clean or something, I get their attention again, until all of their attention is back onto ME. Then I run more.

Last night I tried to share my legos with the doggie. I put the lego in front of him on the floor, but he just looked at me like he didn't know what it was. I think it's sad that mommy and daddy didn't teach the doggies about legos. But I will.

I have recently become aware that "I" means me, Brody. And that I have a lot of opinions. When mommy wears a top I like (like if it's soft or shiny) I say, "I yike it" because L's are hard to say, and mommy smiles and says "thank you, Brody." Then I say "Thank you mommy" a few times because "you're welcome" is hard to say. I also tell mommy and daddy when they are pretty. They should know. Also, they kiss me after I say that. If you want my mommy or daddy to kiss you, you just say to them "pretty" and they will.

I really like to tickle daddy's goatee. It makes me laugh.

For the second day in a row today, mommy left early for work. Usually I leave the house first when daddy takes me to school. I don't like it when mommy leaves first. Today I told her over and over "Mommy stay. Mommy carry me" but she didn't take me with her. I cried and was very sad.

Monday, November 24, 2008

Insomnia

Seriously. Why am I up?

Brody cried a bit at 1:15, then again at 2:15. The second time was because he was missing his lovey - aka, the plastic sippy cup. Yes, in addition to the monkey and 400 stuffed animals he has, he prefers the plastic water cup. Maybe he is afraid of being thirsty and that provides him comfort?

Except that, in light of past spilling experience, I just give the cup to him with about 1 T of water in it. He doesn't drink it, he cuddles it.

Now it's 4:15am. I'm UP. I have folded laundry, mentally cooked Thanksgiving dinner, filed my nails, and read a book.

I have a stressful 3 days at work ahead of me. It all depends how my clients testify - and since I can't control how they testify, I thought it would be useful just to sit up all night wondering what they will say. Yes, I know what they told me they would say. But sometimes, that changes when there is a court reporter nearby. At any rate, that's the reason I'm up. Also, one of our dogs snores really loudly.

Also, is it just me, or when you eat right before bed, are you famished when you wake up?

Friday, November 21, 2008

The pumpkin as usurper

We've been trying to get Brody to say "I love you" to us, but so far, he won't, unless we prompt him. He will say it, and he does it in this little sing songy voice. It melts my whole heart when he does, even if I know we had to prompt him to say it.

The day of Brody's surgery as we were driving to the hospital, we drove through a neighborhood that had many fall decorations on porches: pumpkins, scarecrows, corn, etc.

I hear him say from the backseat, as we drive by another porch of pumpkins, in that sing songy voice, "I love you punkin."

Wednesday, November 19, 2008

Success! Well, we think so. . .

I just got home from the hospital (9pm) and wanted to write a quick update before going to blissful sleep.

Everything went well. Brody cratered about the last half hour before surgery, but I think it was more because he was overtired (no nap) than no food. One of the nurses took him and entertained him while I spoke to the urologist.
I like the urologist (Furness) more and more. We sat down and he said "I've been thinking alot about Brody's case since we last spoke." He then went into this long expanation but basically, because Vacterl kids can have issues even when it doesn't appear they have issues, Furness took a different, more conservative, more complicated approach to do the same thing we talked about before, in order to avoid "making the bladder go to sleep." I was pretty tired at that point, and I don't really know what he said, but there you go. I knew Brody was his last case of the day, so I kind of joked (and kind of not joked) and asked him "Are you feeling good? Feeling fresh?" And he replied, "Actually, I've been looking forward to Brody's case all day." It was then I decided that I like a surgeon who thinks Brody's issues are fun and challenging, instead of daunting.

I walked Brody into the OR again. That just never gets easy, leaving him there, even if he is passed out. He was very glad that he got to take in his Oma blankie (what he named the blankie my mom knit for him) to the OR. Anyway, the surgery took less than 2 hours. Furness came out and cut right to the chase: "It went great. He's already peeing like a racehorse." No problems, no surprises, no issues. He combined the two urine tubes, and the reflux issue should be resolved. Brody will have bloody urine for a few weeks, and that's normal. He didn't get an epidural but a regional block thing. It should wear off tomorrow morning.

Brody did have a rough time waking up from the general. He was pretty violent and crying, and no matter how many times he squirmed or thrashed, he never got comfortable. He didn't care when Daddy or his nana arrived (Jeremy's mom) and he refused apple juice and popsicles (his two favorites after surgery). The nurse said it's a reaction to the anesthetic. Basically, after thrashing for 90 minutes, he went to sleep around 6pm, and as of the time I left, he hadn't woken up. He also hasn't eaten since 6:30am, but we have mac n cheese, rice krispie treats, cheerios and yogurt on standby in case he does wake up. He is getting so many fluids that he's not dehydrated, and he's not surprisingly just exhausted. I left him sprawled out on top of Jeremy in the "parent cot" (aka torture device) in the room.

thank you thank you thank you

Tuesday, November 18, 2008

Twas the night before surgery, and all through the house

It's the night before surgery, and Brody has just gone to sleep. As is our custom now, the night before a surgery Brody gets anything he wants to eat. That means tonight he had pizza, cheetos and a toffee covered popsicle. And 16 ounces of milk. And lots and lots of tickles.

I just got off the phone with the anesthesiologist. She called to do the pre-op consult over the phone. With Brody's complicated medical history, they are always interested (as they should be) about his tracheo-esophageal fistula (TEF) (the esoph didn't go all the way to the stomach) This is because for most surgeries, Brody is intubated, and every anesthesiologist gets wiggy about intubating TEF kids and kids who, like Brody, have an overbite. Thanks to one anesthesiologist at Shriners, who told me what to say, now I know to just tell the subsequent anesthesiologists that Brody has a big mouth. I don't know why, but after they hear that, I get no more questions and they seem much more relaxed.
The anesthesiologist also said that she may give Brody an epidural. Yeah, the same kind as when you give birth. She said it works really well, and helps because she needs to put in not just any IV, but a "really big IV." She said after this kind of surgery, they want to see Brody peeing a lot, and to do that, obviously, they pump him full of fluids.

The plan tomorrow is that we keep Brody at home, since he can't eat after 6:30am. Surgery is at 2:30 (mountain time). Tonight the doc said no clears after 11am, because they usually run early. That's right - early. So to be on the safe side, no apple juice after 11am in case they can take him earlier. I will wake him up at 6am and offer him everything in the house in the hopes he eats something. Keep your fingers crossed.

Brody and Jeremy will be staying overnight, then I'll take over again Thursday morning when Brody is discharged in the afternoon. Our awesome friend Stacy has offered to take Brody on Friday so I can go back to work (not surprisingly, Jeremy and I are both completely out of leave).

Now that you know the anesthesiologist story from above, you will appreciate this story even more: Tonight, Brody and I are sitting and cuddling, and eating our pizza. He turns to me, and puts his fingers in my mouth while I'm chewing. "Mommy . . . eat," he says. Then the little darling says, with his fingers still resting on my lips, "Mommy. . . big. . . . mowf." Jeremy, like many of you, just laughed and didn't say a thing. Of course, when Brody saw I was laughing, he just kept repeating "big mouth, mommy, big mouth." All I can say is that, obviously, (a) my son knows me well, and (b) the apple does not fall far from the tree. But the night before surgery, when I am most anxious, Brody knew to make me laugh.

This is the last you'll hear from me (hopefully) until after he's out of surgery. The surgery involves stretching and reimplanting those urine tubes, and is supposed to be over two hours long, which is one of the longest ones he's had. You know how I get. Jeremy is the voice of reason and tries to talk me off the ledge, since I'm worst case scenario chick. So please say some prayers and/or send good thoughts that Brody's surgery is a success and that he comes out of it safely.

Friday, November 14, 2008

Taking the fun out of dysfunctional

I understand no one's family is perfect.

I understand that in light of the family I do have, I am luckier than most.

But I just had a conversation with my brother that made me sad.

Sad because the first thing out of his mouth were racist jokes about the president-elect. I tried to steer him off of politics, and he kept veering back. Finally I told him our father would be very disappointed in him if he could hear what he was saying but that if he needed to make those jokes in order to feel better about himself, I guess he had to do what he had to do. Only then did he stop.

Sad because this was the first phone call in a long time between us, and the first one after I found out I wasn't invited to his surprise birthday party last month. And it was awkward. Of course, I was also sad because, like every other time I talk to him, I was fairly certain he was drunk.

Before I called him tonight, I received a letter from my brother that was a form letter, thanking me for participating in his 50th birthday party. (We sent him cigars). He thanked his wife, and two of my sisters, but not me (since I wasn't there) and not my other sister (who also wasn't invited). He asked me if I got the letter. I said yes. He said that's what he sent to everyone who went to the party, but a little different, because there were somethings that I just wasn't a part of.

That statement spurred me to tell him I was disappointed I didn't get an invite to the party. Because I would have come. He didn't believe me. Little does he know, I was checking flights and time off from work.

The invite never came.

I suppose I could have just flown out there, but I honestly never thought that for my brother's surprise 50th, I wouldn't at least get an email telling me the details. I felt odd inviting myself to his party. We don't agree on politics, or social issues, I think he's abusive verbally to almost everyone he knows, and there's the whole alcoholism thing, but I'm his sister. I'm his family too. And I should have been given the choice of whether or not to come to the party.

No, I have not been a perfect sister. Nor has he been a perfect brother to me.

But it's times like these I remember my dad the most. He held our family together. He always called everyone on every birthday, holiday; invited everyone to every party; we were one family with him at the head of it. My siblings out of state are my "half" siblings. My sibling in my state is my "full." We all share a father.

I never felt the distinction until after our dad died.

Now there's a dividing line. I don't know what I did that caused the rift. Maybe it's simple lack of attention on all of our parts.

But it's there. And it shows. And that breaks my heart because I miss my brother and sisters, and my dad would be devastated by the distance between us.

After he died, I found one of his journals. In it, he wrote "There should be less 'me' and 'I.' There should be more 'we' and 'us.'" He's still right.

Part of it is life stages. My oldest sister is 66. She has grandchildren. My other sister's kids are in college. I have a two year old son.

Part of it is differences in politics, and part of it is geographic distance.

But the rest of it is. . . something I don't understand.

And I don't know how to fix it.

Let it snow. . .

This morning, we woke up to see snow falling.

First snowfall of the year.

Brody is vibrating with excitement.

He ran from the sliding door facing the back to my lap looking out the front window, smiling "Snowman! Snowman!"

Jeremy said it was the first time Brody had seen snow. And I guess, in a way, that's true because he just didn't seem to care about snow last year.

Jeremy cautioned Brody that we needed more snow to make a snowman. I explained to Brody about snow angels. Brody even asked to wear a hat.

When I was driving into work about an hour later, I realized that without Brody, I'd probably be grumbling about the weather, the traffic, and the cold. Instead, I was happy and excited to watch the snow continue to fall.

And now I cannot wait for Christmas eve, when we leave cookies for Santa and carrots for the reindeer and read Twas the Night Before Christmas.

And Christmas morning, when the three of discover what Santa left for us.

Having a child is more fulfilling than I ever thought it would be. The biggest part of my joy comes from helping Brody to experience the fanciful and watching his eyes twinkle while he discovers whole new worlds. And he takes us on the ride with him.

Wednesday, November 12, 2008

So far, so good

Dante made it through the first 24 hours of MiBG.

Brody's reflux surgery scheduled for a week from today!?!?! I'm astounded at how fast this urologist, Peter Furness, can get us scheduled.

It's a sad state of our health care system that not waiting for months on end to get an initial appointment is surprising.

Tuesday, November 11, 2008

Prayers and good thoughts for a real trooper

A little boy in Philadelphia is fighting for his life today. His name is Dante. He is 17 days younger than Brody.

He has neuroblastoma. His mom, Jo, has already had one son die. Dante has been fighting this awful cancer since December 2007.

We thought Dante was about to turn the corner, then last week the bottom fell out. The cancer has spread. There is one treatment left: MiBG. Jo was given the choice of doing no treatment at all, and taking Dante home to die. Or doing the treatment, knowing it might kill him.

They chose to fight, and are doing the treatment, starting today.

The next 24 hours are critical for Dante, to see if he survives and can handle the radiation levels of the treatment.

If you pray, please pray for Dante. And if you don't pray, please think good thoughts for him.

Sunday, November 9, 2008

If I owned my own Children's Hospital. . . . .

If I owned my own Children's Hospital,

1. I would make sure that there was an adults only bar where parents could come and just get a little nip to take the edge off. Nothing alcoholic-y, no drinking til intoxication. I'm talking one drink per person - a glass of wine, a pint of beer, a vodka cranberry, etc.

One drink, because after you leave your child passed out in the OR, no matter how confident and positive you feel, you really just need a drink.

2. I would require full size actual beds for parents to sleep in if they stay in their child's room overnight. No pull out couches that torture backs, and no chairs that become beds. Parents are stressed out enough. Uncomfortable enough. And sleep is paramount because parents are already probably not going to sleep well, and so the least the hospital could do would be to give you a comfie spot to lay your head.

3. Roving masseuse. I think that in addition to the nurse who checks on your child every 30 minutes after surgery, all through the night, that if they wake you up, you get a 10 minutes neck and shoulder massage from a professional.

4. The pulse ox monitor would NEVER ring in the room. If the oxygen is getting lower, it does NO ONE any good for the fracking thing to beep in the room, and wake up the child so that he cries and cries, which in turn continues to lower his O2. Make the stupid thing ring at the nurses' station, where people who can actually fix a desat can hear it.

Ok, these are all the special things that would be at my Children's Hospital. Can anyone think of others?

Saturday, November 8, 2008

High

Jeremy took Brody for the first half of the day, and at around noon, he dropped him off at my office so I could take him to the hospital. Neither of us have any leave left so we had to split the day up.

As we were walking into the hospital yesterday, I received a call from the hand clinic saying that they were running behind, and so instead of appointments, they were just going to open the clinic at 2pm and see patients first come first serve.

Why, then, did we have to wait 6 weeks for an appointment if it's just going to be a free-for-all?

Sigh.

So I make the decision to ditch the hand clinic and go straight to pre-op. Brody was still in a wonderful mood, despite not having eating since 7am. We checked into the hospital, and I wheeled Brody in the radio flyer wagon up to the pre-op waiting area. They took us right in, but at this point, Brody wanted to pull the giant wagon with all of his stuff in it by himself. He refused help from me. "Brody do it, Mommy." So I let him. And he pulled the wagon through the waiting area, through the first hall and down six doors to our room. Naturally he loved the attention this stunt got him, and all the nurses saying "Oooh, what a big boy!" and "Look how cute he is!"


At this point it was around 1:30. I thought at some point Brody would remember the purple hospital gown he wears while here, or the rooms, or the "bracelet" (hospital id tag) but he didn't seem to have a negative memory. (He is 35 1/2 inches and 27 1/2 pounds, by the way. Not bad for preemie whose had 9 surgeries).


While waiting, Brody and I played football in the hallway. Everyone was impressed with his throwing ability. Catching not so much. But he was giggling loudly and we even got a few nurses in on the game.
Then they told us about the play room. I think after we got to the play room, and the hour and half we spent in there was probably the best time Brody's had in a few months. There was a giant playhouse, with a real doorbell, and doors and windows that opened and closed. And a train table wiht tracks, and a doll house, and legos and blocks and cars and books and pillow blocks. . . Brody squealed and ran with a smile right to the house. "Mommy! House!" He probably went in and out of that house 25 times, ringing the doorbell each way each time. Amazingly, he remained in a great mood, despite not having eaten for 8 hours.


Around 4:15, I took Brody back to surgery. We cantered back to the OR, and he laughed the whole way. The nurses said I really knew what I was doing, because that made going to the OR a fun experience instead of scary. Practice makes perfect.


The OR was very bright and Brody was getting apprehensive. I told him there would be no owies (at least not while he was awake) but he still resisted the mask, until I broke out the Brody song. Unfortunately I had to sing them with an audience of the surgical team, but no one made fun of my singing voice. They marveled that he calmed right down when I started singing. Well, who doesn't like to hear songs about themselves?

Surgery was about 90 minutes. Here are the findings:

1. I can stop wanting to harm the techs who did the failed cath on Monday. Brody has a tricky area - he has what looks like two tubes: but one is the urethra, and one is just a fake indentation. They were trying to cath the indentation. So the doc fixed that issue right there - he snipped the webbed skin making the two holes, and now there is one, but to make sure the area stays wide while it heals, he also has a plastic stent in his urethra that is acting like a catheter. We'll leave that in for 2 weeks.

2. Brody has two urine tubes. Not a good or a bad thing, but most folks have one. However, this means that he will not grow out of the reflux, and he does need surgery. That surgery to fix the reflux - to basically unkink the garden hose is what the urologist said - will happen in hopefully the next couple of weeks. When I marveled at the swiftness in him scheduling this and the next surgery, he said he was trying to focus on being more of a service oriented professional, since that was what medicine was. Novel idea. So we'll talk to his nurse scheduler on Monday and see what's what.

3. Brody has hypospadea and I'm not sure that is how you spell it. But he will need a subsequent operation, probably in the spring and a skin graft to straighten. The doc called this the "pretty penis" surgery.

4. Better news - neither of these two upcoming surgeries is urgent and neither of these conditions is life threatening.

5. Best news - Urologist reviewed the renal ultrasound. This is what he said: "Ok, so I looked at his ultrasound and the kidney looks fantastic."I think that is just sinking in right now. I was so tired at that point all I could do was smile. But I woke up this morning with an extra level of glad when I remembered that.

6. Bestest best news - none of the things I've talked about will have any lifelong effect on Brody. So we fix them, then we (eventually and hopefully) forget them.

Moment of levity: The doc was talking about Brody's tiny urethra, and tiny urine tubes, and I think jeremy made a comment and the doctor said, "Actually, his penis is pretty long." Jeremy beamed. It's not information I needed to know, or think about, but even the doctor laughed and said "Yeah, that just made dad proud."


We took Brody home last night. He's having a few bladder spasms, and we have meds for that which seem to be working. He seems to be fine - he slept almost 12 hours last night - but riding his bike is out of the question, because it causes "owie owie owie."

Thursday, November 6, 2008

Roller coaster

Low: Monday, when the hospital used feeding tubes to try to cathaterize my baby while he screamed. please forgive me

High: Obama winning. Brody is safe and will have health insurance. And a president who knows there is a constitution.

Lower: Brody having surgery for something we hadn't even thought was an issue, a stricture in his urethra. please keep him safe and healthy And getting anxious to hear results of how his one kidney is functioning. please let it be working well

Slightly higher: At least he can have solids until 7am, and clear juice until 1pm on Friday. please don't let him think we are being mean to him

Lowest: Just now, found out 2 year old Dante's neuroblastoma cancer has spread. To his spine, and possibly his bone marrow and there are lesions all over his body, including his head. And there's one treatment (MiBG), and if he doesn't get well from a respiratory infection in his lungs (which could also be cancer) within the next 4 days, then there is no treatment.

please please please

Please.

The afterglow

Jeremy, Brody and I were eating dinner with the TV on last night, discussing vacation and holiday plans (and not Barack Obama). President-elect Obama was on TV at various points, replaying his speech from Tuesday night.

Brody was happily eating his spaghettios.

Then he interrupts us to say very urgently: Mommy, daddy!

Me: Yes, baby?

Brody: Rockobamama coming!!!

Jeremy: Yup, Barack Obama is coming.

Brody: Yeah, Rockobamama coming

Naturally, this assured us yet again that Brody is, in fact, a genius.

Wednesday, November 5, 2008

President-Elect Obama

I argue and write for a living, and I have no words today.

Some photos of reactions from around the world after Senator Obama became President-Elect Obama.

India:

Sydney, Australia:

Jerusalem:


Greece:


The Netherlands:


France:








Monday, November 3, 2008

Vote vote vote!

If you are an American, it is your obligation, duty, honor and privilege to VOTE.

Do so.

I will be at an elementary school precinct, serving as a voter protection watcher for the Colorado Democratic Party. If there are people intimidating voters, or too long of a line, voter suppression, I call the "boiler room."

And then they do something about it.

It's like having all the benefit of insider information with really none of the responsibility.

Thursday, October 30, 2008

Brodyism

Last night, we were eating dinner.

Brody: Mommy go bye bye.

Me: Mommy bye bye? Where?

Brody: Mommy go shopping.

Me: Shopping? Is Brody coming with me?

Brody (grinning): Yeah, Brody Mommy shopping.

Me: Where are we going shopping?

Brody: Mommy Brody shopping ice cream.

Wednesday, October 29, 2008

We voted today

Jeremy and I voted today. There was a line. Not long. I took a moment after I touched the box for Obama/Biden. I triple checked that my vote was where I wanted and then I waited a space and said a prayer. Please. This is my first presidential election as a parent.

The election workers said yesterday, the 8th day of early voting in Colorado, was the busiest by far. They said voters were steady streaming, all day long, 7:30am - 5:30pm.


Then a friend just sent me this, the CNN political ticker of today's electoral college projections and in particular, Obama is up in Colorado:


I'm getting that nervous sick feeling like this guy. I'm nervous about the informercial tonight. I'm nervous about wily GOP operatives suppressing the vote and my paralegal reminded me today that both of the touch screen voting system vendors have been hacked into previously and "were able to manipulate data."

Please oh please oh please oh please let Obama win this election and have 8 long, wonderful years . . . .

Monday, October 27, 2008

I get it now.

I get it now.

I finally understood.

On the grass, in the middle of 100,000 people, holding my son.

Sure, I advocated for Obama, I've campaigned for Obama. I've been a Democrat my whole life.

But on a Sunday in October, in downtown Denver, I finally understood why this election is essential (and I do not use that word lightly) to Brody's life. More on that in a minute.



First, however, let me just tell you, you have not said the Pledge of Allegiance until you've said the Pledge of Allegiance with 100,000 other people surrounding you.

Brody and I were on a grassy knoll, and the speaker announced the Pledge of Allegiance. Everyone around me instantly put their hands over their hearts, and said those words. I got chills, and a little teary eyed. This was before Obama spoke, before anyone spoke I think. It's quite awe-inspiring to hear strangers beside, before and behind you reciting words along with you describing your joint allegiance to your nation.



Also, even before then, there was an energy in the crowd of anticipation, excitement, hope and community. I had Brody in the stroller and no fewer than 6 different people helped me with him while we waited in the security line (he was fairly cranky after the first hour of waiting).

Eventually, after Brody sat on my shoulders eating crackers, had a meltdown and fell asleep on me, and after some folks offered us their lawn chair, Obama came to the podium and delivered his speech.



It was right around the mid-point that I had the epiphany. I finally understood what this election means in my heart, and how critical for Brody it is that Obama be elected. Brody was still asleep on my shoulder, and Obama started speaking about health insurance, and how his mom was denied cancer treatment because the insurance company said it was a pre-existing condition. And he said that he will make it so that insurance companies have to cover pre-existing conditions. And I looked down at my sleeping son, and a wave of realization crashed over me and overwhelmed me.


One of the issues Jeremy and I were most worried about when Brody was born was health insurance. He was born with multiple medical issues. All pre-existing. Brody is on Jeremy's health insurance through his work (it's better than mine). What if Jeremy gets laid off and we have to switch Brody to my health insurance? Everything he needs care for is pre-existing. What happens when Brody is an adult and gets his own health insurance? Would it cover an operation on his kidney? Would it cover a dilation surgery on his esophagus? No.


I've known about Obama's idea to require coverage of pre-existing conditions for over a year. But when Obama said what he said at the rally, something about being right there, in the presence of so many people, so many other kids, and having witnessed the serious illnesses of other children with Vacterl association and just the notion that, finally, someone thought it was time to change insurance companies' utterly unfair control over the health of children like Brody, especially Brody. . .


I started crying. Completely. Tears streaming down my face. I squeezed sleeping Brody in my arms and whispered to him "This is for you, baby, this is all for you. We will get this for you."

Saturday, October 25, 2008

Decision, photos and trial video

This is how Brody felt during the first presidential debate (these are old photos). He got a fever. Mocha the dog got protective. He woke up almost immediately after the debate. I think he was too nervous about the debate and it manifested itself in a fever.


There is nothing better after shoving fistfuls of french fries into your mouth than an ice cold milk.


After eating his first funnel cake, Brody ran for about 20 minutes. Daddy had to follow behind him.

An "action" shot of Brody, surprising the dogs while playing "Hide." There is not seeking in Brody's version of Hide. Just hiding.


And . . . . we're going to see Obama tomorrow. Here's why: when I was little (under 10?), my mom took me to see the Ice Capades. Part of the show was that a sled was brought out, and kids could get on the sled and be led around the ice arena. I remember when my mom asked me if I wanted to get on the sled, I cried because I was too scared. Then the other kids got on, and the sled pulled away, and at that instant, I wanted to be on the sled.

But it was too late. There was nothing anybody could do. The sled was gone. I cried and cried.

So I'm going tomorrow.
Finally, I just wanted to see how a video would look on the blog. I took it while we were at one of Jeremy's lacrosse games about 2 weeks ago.
Needless to say, after watching it, I have confirmed my suspicions that Brody will never walk the straight and narrow.



Thursday, October 23, 2008

Guys' night out and Obama dilemma


I had drinks after work tonight, so the boys went out to dinner at the pizza joint. Brody had a whole slice of cheese pizza, some garlic knots, and a bag of potato chips. And lemonade. Not the healthiest meal, but pretty good for having TEF.
Now the Obama dilemma.
He's coming on Sunday to Denver. I just got the email. The gates open at 10am. That means he will probably speak around 12:30, right?

The wrinkle. Jeremy has to work this weekend, doing inventory. His company is about to lay off 700 workers (not him, thank God) but still - he has to be there.
Which means I have Brody. Which is normally fine except. . . .
I'll be by myself,
at a large political rally in downtown Denver,
during Brody's nap time (11:30-2:30pm).
Here's the thing. Brody comes first. I didn't caucus for Obama, because Brody needed to be asleep, it was freezing and icy.
I haven't seen Obama before in Colorado because it was during the work week.
I had to refuse tickets to see Obama's acceptance speech during the DNC because we were in Salt Lake not having surgery at Shriner's. Instead I watched the acceptance speech in the kitchen of the Ronald McDonald house. By myself. Eating a stale donut.
Now I feel there's a sense of urgency if I ever want to see Obama in person, even from half a mile away. There are 2 weeks left in this election. I sincerely doubt Obama is coming back to Colorado after this weekend. (Especially now that McCain is pulling most of his ads on the local stations and the GOP is pulling its money out of the congressional races here - at the same time, the Obama campaign did just open TWO more offices this week in our little suburb of Denver).
So I feel like it's now or never, right?
But. . . when he was here in the spring, he filled up a stadium, there were lines weaving around the stadium, and people waited a couple of hours to hear, let's face it, a stump speech. I've probably already heard the speech he'll give on Sunday, right?
But. . . it's a chance to see Obama speak live. Obama, whose speeches invariably give me chills and make me think of my dad (a great American) and Brody's future (as a great American).
But. . . toddler at a political rally during said toddler's nap time? Would toddler have fun? Is it safe? Responsible?
Thoughts?

Reasons I know Brody is my son...

We both like to watch tennis on TV, especially the Grand Slams....

We both like brie cheese on french bread....

We both love Obama....

We both like it when the dogs lick our feet....

We both like to read books.....

We both like to look at the pictures in US magazine.....

We both like spicy Thai food but not necessarily spicy Mexican food.....

We both like sparkling lemonade.....

We both like to cuddle with daddy in bed and watch cartoons.....

We both like to watch cooking shows on Food Network.....

We both like to make jewelry/play with the beads.....

We both smile when we say "Oma" or "Obama"......

We both like to sing lullabies while cuddling in the rocking chair with a blankie over us.

Wednesday, October 22, 2008

PETA would be pissed. . . .

When I was little I loved playing with roly polys - remember those little bugs that curl into a ball?

As an adult, when I have seen them, I have walked in the opposite direction. I'm not actually scared, but they are bugs for chrissake and I'm 33 years old (shut up, you can't prove I'm not 33 still).

But then I had a son. Who is now fascinated with bugs. We saw a roly poly in the park the other day. I took hold of my senses, and crouched down with Brody to look more closely at it. I even tried to sound happy that I was putting my hand on the ground and encouraging the thing to crawl into my hand while Brody watched the scene unfold.

However, the roly poly was not trusting my hand, and refused to climb into it. So I sat back a bit, and gladly retracted my hand from the roly poly's path.

"Guess he didn't want to play with us," I said to Brody, who had been oddly silent during the whole encounter.

Brody then stomped on the roly poly. "Bug, mommy. All gone."

So much for roly poly.

Monday, October 20, 2008

If I was God. . .

Ok, no I'm not God.

But in my dream this morning I was, and I was telling "my people" that everyone had to do 3 good things that they had been thinking about doing for other people but just hadn't got around to do doing.

3 things that would improve the world in some way, make someone's day brighter or easier.

If I was God, and I had to have commandments, that would be one of them: Thou shalt do good things.

Well, if I was God I'd be able to write something more clever than that, but you get the idea.

I am off to figure out my 3 things. . . .

Overreact much?

Brody has scars on his arms from his surgeries.

At one point over the summer, the scar got infected, and infection puss built up around it, until it drained. It was fairly disgusting but Jeremy and I were glad that it drained. Draining infections will soon no longer be infections.

The other day, I was changing Brody's diaper.

I saw some discharge on one of his scars on the under part of his right forearm. I freaked out, because I hadn't noticed any redness or infection. I grabbed his arm, and gasped.

I really did. I gasped. I couldn't believe he had another infection, so long after surgery. I started calculating which doctor I would call and whether I should just start him on the antibiotics I have in his room, how this could have happened. Was it a leftover stitch? Something worse?

Then, I touched it. To see if there would be more drainage.

At which point I realized it was snot.

Friday, October 17, 2008

Nightmare on Estes

I think Brody had his first nightmare last night.

He was screaming that "I'm terrified of something" scream, which I knew only because I had never heard him scream that way before.

I went into his room a few hours after he went to sleep. He almost leapt out of the crib into my arms, and then gripped me with arms and thighs of steal. Not letting go, Mommy. Don't let go!

He asked where Spiderman was - the stuffed one who could talk when you pushed its belly. I thought he wanted to cuddle with it. I told him it was right here, in his room.

He screamed. I'm scared, I'm scared.

Then he asked me to take the Spiderman and the Elmo (which is really Ernie, but he talks) outside.

So I did.

Well, I walked downstairs with them, put them on the back of the couch, and then opened and closed the back door, so Brody would think they were outside. At the time, I determined that, in what I thought was a rare display of late night intelligence, that I didn't want the coyotes in our neighborhood to get Spiderman and "Elmo" so I didn't want them to truly be outside. Because everyone knows coyotes would hunt stuffed dolls almost as much as they would hunt small animals.

Go figure.

I went back upstairs, Brody leaping into my arms again, and held him while he calmed down. I told him Mocha would protect him, and Kahlua would protect him, and even Whiskey the cat would protect him, that he was safe, and that Mommy and Daddy would protect him and that we would never let anything bad happen to him.

He slept through the night. No more nightmares.

On the bright side, I never liked those talking dolls anyway.

Tuesday, October 14, 2008

I feel like I'm on candid camera but on the phone.

I am trying to schedule an appointment with the local orthopedic folks at the Denver Children's Hospital.

We don't have a local ortho surgeon, because we go to Shriner's in Salt Lake.

I go to the website. There is a Limb Deformaties Team. Not one of my favorite words, but the page on the website says to call and ask for an appointment for the Tuesday Limb Clinic. I call the number.

The woman who answers has never heard of the Tuesday Limb Clinic. Eventually she says "Oh, ortho is what you need. Please hold."

Then I arrive on the extension of another woman. I repeat I want the Tuesday Limb Clinic.

"What's your referral?" She asks.

"Ah. . . my son has bilateral radial club hands. We go to Shriner's in Salt Lake for the surgeries, but I need someone to splint his hand before the surgery in January."

"No, but who is the orthopedic surgeon at Children's?"

"We don't have one. I just need a splint."

"Ok, well you can't come to the Limb Clinic. You have to get a full workup by the PA before a surgeon will see you to see if (garbled)"

"To see if what? I didn't hear what you said."

"To see if it's a true limb discrepancy."

"My son does not have thumbs and he is missing radius bones in both forearms."

"Is this with his arms or his legs?"

"His. Arms."

"Oh, well then you need the hand clinic."

"Ok. Do you have that number?"

"No. That's me too. Ummm. . . .we have an opening on November 7, at 1:30pm."

This phone call is exactly why I avoided contacting them. Honestly, people who say that socialized medicine is frustrating due to bureaucracy have never actually been truly ill with the current scheme.

On a positive note, we are may be participating in this study by the National Institute of Health, although I just called the number that the intake person said to call, and they hung up on me.

Hmmm . . . . . . .

Monday, October 13, 2008

Brodyism

I took Brody to school this morning. On our way to the car, both of us bundled with coats and hoods, he spots the neighbors' pumpkin across the street.

He smiles, waves and shouts "HI PUNKIN!!!!"

Somehow this helped

I was talking to my husband over the weekend about Elias and Dante. I told him it wasn't fair.

He said, rubbing my back, "No, it isn't fair. That's why we have to be so thankful for Brody."

And somehow, that helped.

Sunday, October 12, 2008

Rose colored glasses. . . .

Brody was reading US Magazine with me the other day. He pointed to a photograph of a man with a goatee, and said "dahdee, dahdee."

The man in the photograph was Brad Pitt.

Then we kept thumbing through the pages, and we saw a photograph of a dark haired woman. He looked at it and said "mommy, mommy."

The woman in the photograph was Eva Mendes.

Brody got an extra box of animal crackers.

Friday, October 10, 2008

Upsetting news x 2

One of the blogs I read regularly is about a boy named Elias. He was born May 1, 2008 and because of the Vacterl Network, they found us or we found them. Michael and Katharine are his parents, and Elias is their first child. Elias has been in the NICU since he was born. They have just found out that Elias does not have Vacterl association, but Fanconi's Anemia. They are devastated, and Michael called it a "crushing blow." I'm in tears right along with them. I remember Brody getting tested for that, and being so afraid of it. I cried when they told us it was negative for Fanconi's.

As Michael said on his blog, Fanconi's anemia is characterized by physical abnormalities, bone marrow failure, and increased risk of cancers. Progressive bone marrow failure typically presents in the first decade, usually around seven to eight years of age. There is also high instance of tumors of the head and neck, esophagus, and liver. People with Fanconi anemia often develop leukemia and other cancers.

Then there is Dante. Dante is Brody's age, 2, and has been battling neuroblastoma for 10 months. And his family just learned that the cancer is back, or spread, to his eye socket and leg. He started radiation immediately. We were hoping the scans would come back with good news. Not this.

Then I look at my Brody, and I wonder if there are any children anywhere who are healthy. I can't believe I didn't have my first surgery until I was 33. How naive I was. I get updates for 9 carepages and 6 caringbridge sites. Even with Brody's medical issues, how naive I was until this week.

I cannot bear these children being so ill.

I am so angry. I am so angry right now. I don't understand. I don't understand why some children are never sick and some are always sick. I don't see what purpose that serves or what good goes into the world from that.

If anyone is reading this, please follow the links above and post a message of support to those two famliies. They received the news that no parent can bear to receive this week and need every piece of support they can get.

Thursday, October 9, 2008

Brodyisms

Jeremy left on Tuesday morning. It's now Thursday morning, and Brody has been talking nonstop about Daddy and the airplane. Thank the gods Jeremy gets back tonight.

Brody saw the same make and model of car that Jeremy drives in the parking lot last night and I had to physically restrain him from running across the parking lot to see "Daddy car! Daddy car!"

As a result, Brody called his daddy last night, and he just kept saying "Hi Daddy! Hi Daddy!" It was especially poignant because usually Brody does not like to talk on the phone if there is an actual person on the other end. But for his father, he did. Jeremy said "I miss you, buddy! Daddy loves you! Can't wait to see you!" And Brody just kept repeating "Hi Daddy! Hi Daddy!" and then he abruptly switched to "Bye Daddy! Bye Daddy!" I could tell from Jeremy's suddenly hoarse voice that he wanted to keep talking. I can't wait to see their reunion today.

**************

I noticed something the other day that Brody does when I am sitting next to him. If we are seated side by side, on the couch, in a restaurant, in the car (if I'm in the back seat with him, not the other way around) he places his arm on my arm. Last night we went out to dinner, and I noticed while he was eating his grilled cheese with his left hand, he had his right hand on my arm. I gently removed it, to see if it was a fluke. Nope. Brody said, "No mommy" and put his hand right back on my arm. When I noticed he was doing it purposefully, I asked him for a kiss, and he gave me one.

***************

We had a great dinner, except Brody doesn't yet understand the waiting period that is a necessary part of each restaurant experience. When we walked into Red Robin, he was very happy and couldn't wait to sit down. But when he looked at our empty table, and the other tables with food, he started screaming "Ummies Ummies!!!!" Until the waitress brought him some oyster crackers. I appreciate his sense of equality - if others eat, he should have food too - but it really was a bit embarrassing.

***************

Brody stepped on my bare foot last night with his shoes on. He did it on purpose so I told him, "Brody, you hurt mommy. Please don't step on my feet." He then kneeled down and kissed my foot, and looked up proudly at me. I thanked him and said my foot was all better. He grinned. I think he stepped on my foot just so he could make it all better.

And he did.

Wednesday, October 8, 2008

Herzlichen Geburstag, Mutti!

My mom turns 70 years old today.

Why, I remember when she was just 38. (I really do).

1938
~the year when Saudi Arabia began producing oil, a natural resource that would transform a virtual dust bowl of a nation into one so wealthy that the King's main problem was what to do with too much money.

~US postage stamp cost 3 cents.

~Helen Moody and Don Budge win the Wimbledon Championships.

~Academy Award for Best Picture goes to The Life of Emile Zola

~Teflon is developed at Du Pont.

~George and Ladislav Biro invent the ballpoint pen.

~A blond baby girl is born in Karlsruhe, Germany in the middle of a war. She will grow up to be my mother, my friend, my cheerleader and my example. Despite the terror of being bombed and Post-war grief and poverty she knew as a little girl, or maybe because of it, I grew up always knowing I was safe and loved by her. Even if she didn't always like my fashion choices.

Ich liebe dich, mutti. Du bist schön innen und außen. Ich freue mich sehr, Sie sind meine Mutti.

Tuesday, October 7, 2008

Daddy apane wwwwerrrrk

Jeremy flew to Texas today for work. He got up before Brody was awake.

Naturally, Brody wondered where daddy was, and I told him Daddy was in an airplane for work.

At which point, Brody started to chant, "Dahhdeee apane wwwerrrkkkkk....dahhdeee apane wwwerrrkkkkk...."

Last night I was actually glad when Brody mispronounced moon by saying "noom." Then this morning he is making 3 word sentences.

It struck me that parenting is a constant dichotomy between simultaneously bursting with pride at your child's accomplishments, and yearning for the time he did not have so many.

Monday, October 6, 2008

Brodyisms

Brody demands that I sing "Rock a bye baby" to him.

I never sang this song to him because I think it's a fairly unhappy, violent song. I think he learned it at daycare. So one night, when I was singing to him and rocking him to sleep, every song I picked he interrupted and said "no, no." Then he started saying "baby, mommy, baby." It dawned on me what he wanted and so it began.

Lately when I sing it, even if he is almost asleep, he sings it with me. In his soft, lilting, high pitched gentle voice. He doesn't know the words really, but he still sings it. And after I sing it once, I usually hum the music for a time, then go back to the words.

Brody will even hum it with me.

Every time he does it I think my heart will burst with joy and I tear up and squeeze him as tightly as I dare.

Wednesday, October 1, 2008

Photos from the Littlest Heroes Project

Here are the photos from our session with Jamie, a photographer who donates her time and talent to the Littlest Heroes Project, a national network of professional photographers providing photos for families with children who are battling various illnesses.

Photos were taken at Chautauqua Park, Boulder, Colorado. All natural light - no flash.

They take my breath away. I never knew how important it was to have family photographs until yesterday, when I saw these for the first time.

"Photography is a way of feeling, of touching, of loving.
What you have on film is captured forever...
it remembers little things,
long after you have forgotten everything."
-Aaron Siskind



















Friday, September 26, 2008

I figured it out!!! I figured it out!!!!!

We have a fantastic pediatrician's office. Children's Medical Center in Denver. Our first ped, Dr. Mary, just left the practice and so we chose another one of the peds.

This is our new ped: Dr. Jay (are all pediatricians referred to by their first name? It's so weird to me. I don't even know the first name of most of my doctors. Well, one I knew: Dr. Tracy Hofeditz. Jeremy saw Dr. Hofeditz a few times for various maladies, then when I had an ear infection, I saw Dr. Hofeditz. You should have seen my face when Tracy turned out to be a man. Cruel, cruel parents.)

At any rate, Brody's new ped is Dr. Jay:


Recognize him? Because that is a photo of Harold Ramis.

I saw Dr. Jay Tuesday, and it finally dawned on me that he looked familiar. And today I figured it out.

And I don't mean that Dr. Jay resembles Harold Ramis, or looks like he could be a relative of Harold Ramis.

I mean that, as I sit here right now, remembering Dr. Jay's voice and mannerisms, I kind of think that Harold Ramis is actually a pediatrician in Denver masquerading as Dr. Jay Markson.

And I have to write about it here, because it is so obvious now, that I can't say anything to Dr. Jay because I am sure he gets the comment at least daily. I would bet money he has been asked for his autograph by people thinking he is the guy from Ghostbusters. And now I really want to tell him -- which is a weird impulse anyway -- but I want to tell him "Hey, you look like Harold Ramis" as if Dr. Jay could not possibly know that and I would be telling him something new.

Thursday, September 25, 2008

Photos photos photos

Last one first. Brody has such a good time in the mountain air of Dillon, Colorado, that he passed out on his Oma. My stepdad Jacques on the left is pretending I'm not taking his picture.


Jeremy, Brody and me after our brief sojourn in the canoe. I remembered why they called canoes tippy. We didn't, but I was surprised we didn't. Toddlers are not stabilizing factors in a canoe.

Purposes of this photo: Scenery. Also, my mom and sister. My almost 70 year old mom is the blonde on the right. Not bad, Oma!

Brody took this photo. I don't think he meant for it to be a bit crooked, but honestly, I kinda prefer it that way.
My 8 year old nephew took this photo.
This is just gratuitous from Brody's bath tonight. Anything can be a hat, even a disposable salad bowl. Also, I think he's giving me the finger.