January 21, 2008

So, it's possible that I made some kind of strategic error this morning.

For some time now, O's been pretty attached to the bear that she received in the Bag of Hope that was given to her at the hospital when she was diagnosed. (The bear, which differs in gender from the one shown in the link, has a Medical Alert bracelet and colorful patches where it gets "injections." Olivia calls it Shotsy. No joke.)

We've noticed that Shotsy seems to be a surrogate Olivia when it is convenient.

"Shotsy's tired."
"Shotsy's crying."
"Shotsy's in time out."

We have played along with this, because there really hasn't seemed any reason not to. We suggest that she get Shotsy a blanket, or perhaps have a talk with him about why we don't hit, and that has been the end of it.

This morning, after indulging another obsession, I played along with O's new imaginary friend and then watched incredulously as things took a turn for the worse.

Olivia saw a couple of scenes from A Christmas Story at my mom's house over the holidays, a few crucial scenes, including the one where the little boy loses a bet and gets his tongue stuck to a flagpole. She talked about it for days, until we got the idea that we could probably find that scene for her on YouTube. Mistake #1.

There has been no end to the talk about the flagpole and questions about the flagpole and requests to watch the flagpole, flagpole, flagpole, flagpole. And I'll admit that I have maybe let the flagpole watching go on a bit too long, perhaps on a day when I wanted to clean the kitchen or go to the bathroom by myself.

So, this morning, Olivia starts again with the questions about the little boy.

"What's the little boy's name?"

The only name from the movie I know is Ralph, so Ralph it is.

"Ralph. His name is Ralph."

"Ralph's coming to my house to play."

And so it begins.

"Where's Ralph going to sit? Can Ralph have some granola?"

At first I find this amusing and I am trying to get breakfast in her and if putting another bowl out on the table gets this show on the road, then I am game.

"Sure, Ralph can have some granola."

But, then....

"NOOOOOO, don't take that bowl. Ralph didn't get to eat."
"Is Ralph here, Mommy?"
"When's Ralph coming?"
"Are you going to play with Ralph?"
"Where's Ralph?"

On and on. And then on some more.

I'm immediately stumped. What are you supposed to do with the imaginary friend thing? Ignore it? Play along? Explain Ralph is in a movie and isn't real? Act like I don't speak English?

Trust me, over the course of the day, I got to try them all out. And of course, in that wacky, bent-logic way that two-year-olds have, Olivia had an answer to everything.

Ralph can't play because he's not real? But he's right there!
Ralph can't eat cereal because he's allergic? But he ate some of hers!
Ralph's in time-out? He'll be right back!

Finally, Marc came home, listened for about five minutes, told Olivia that Ralph had to go home for dinner, and that was that.

He hasn't been back since.

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January 08, 2008

It took me the better part of Sunday to get through this story and the accompanying videos. The time that wasn't spent reading and watching was spent thinking about Walker, the author's son who was born with an extremely rare and singularly devastating genetic disorder. I then spent the better part of yesterday trying to express how this story, these people made me feel.

globeandmail.com: The Boy in the Moon

There is strength and grace and courage like nothing I have ever seen in the way these children and their families live and in the way this father tells his child's story. If you only have time for part of it, watch the video in Part 3, Chapter 1: Blink of Light.

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January 01, 2008

Given the opportunity, I would take '07 back and do the whole thing over again, making the one change that would change everything. Instead, we just keep moving further away from that day, taking with us what we've learned, how we've grown, and the blessings that have found us.

Despite everything, Olivia thrives. As difficult as her illness is on her, I have come to realize that she will never in her life be as unaffected by it all as she it right now. Right now, we do the worrying for her. It hurts my heart to know that it won't always be so, but for now, I love that she is such a happy (albeit napless) kid.

Marc and I have weathered storm after storm and have a relatively unscathed marriage. It isn't perfect, but it is stronger.

I continue to miss NYC and fantasize about life in the city, but if we were still there, we wouldn't be here with our families and I honestly don't know what we would do without having so much family so close. It's beyond nice having two grandparents, seven parents, and seven siblings within a day's travel from home. (If you need for me to diagram this for you, just let me know. It's only complicated until you hear the explanation.)

Friends have offered to learn how to care for Olivia so that we can have some time to ourselves; a certain someone has even taken a class. We've made some new connections here in our neighborhood and Olivia loved the weekly playgroup that we went to for several months before the holidays got too hectic.

We have two extremely helpful women in our corner, constantly helping us out with the day to day of diabetes care: our nurse practitioner at the endo's office and our pharmacy tech at the local pharmacy. I can always count on them to go the extra mile and do what they can to make things run smoothly.

All in all, when I think back on this year, these are the things I think about. I am nostalgic for the year that could have been, how different things could be, but I am not sorry for the way that we have dealt with it all. Symbolically, I am glad to see 2007 go, for the feeling of having something new coming up. I hope beyond hope for new advances, for a cure.

So, onward to 2008...

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Happy New Year!

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