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.