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.



video

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