Friday, August 08, 2003

I want to take some time to talk about my daughter, Sophie. With this marathon and all of the information about CF and my feelings being laid out, I wanted to make sure that my wonderful little daughter isn’t EVER forgotten.

Sophie has been so wonderful with Jacob and she really shows so much compassion for what he’s going through. I often worry that she may think we’re paying special attention to Jacob when we’re not dealing with the CF related issues.

Sophie had her own little scare when she was born. In fact, she stopped breathing the night she was born and spent 10 days in the ICU. In a strange sort of way, our experiences with Sophie’s birth actually prepared me mentally for when Jacob was in the ICU. When she came home from the hospital, she had to wear a breathing monitor that wrapped around her chest. An alarm would go off every time she breathed irregularly. It was a really distressful time for us. Every time that alarm sounded, you thought you think your child has stopped breathing.

Needless to say, there turned out to be nothing wrong with her. She’s as healthy as they come. Sometimes a little shy, I’m always impressed with how much information she takes in (and how much she tunes me out when Rugrats, or, lately, Spongebob, are on the TV).

I think her greatest attribute is that she is so caring for everyone’s feelings. She's so protective of her friends; of Julie and me if we’re arguing; and especially of Jacob. For a four year old little girl to have to grasp that her brother is not like other kids and that he’s going to have to receive special attention all of the time, that’s a lot to ask. But she has been great and really watches out for Jake.

The first night we got the Vest, Jake cried when we put it on him. Jules and I understood that it wouldn’t hurt him, but Sophie is too young to grasp that. In a stern, commanding voice, she said, “Just take it off him. He doesn’t like it.”

If she could, I know Sophie would take this disease out of Jacob’s body. She’s asked Julie a couple of times, “When is Jacob going to get to stop doing breathing treatments?” and “I wish Jacob didn’t have to take medicine all the time.” How do you respond to something like that without tearing up?

I read a pretty well known book about CF last year that I thought was very well done. I won’t name it because it’s a helpful book to so many people. Julie loved it. In it, a family of four deals with their youngest child having CF. I enjoyed the book and found myself saying “A-ha… I’m just like that”. Yet, halfway through the book, I started to notice that the oldest child was suddenly not spoken about and her accomplishments were never mentioned until the end. I was pissed.

Look, I know that the book was about the youngest child with CF. But we’re talking about a family of four. I couldn’t finish the book because I felt like there was a voice missing in this story. The voice of that oldest child.

In the Malchus family, Sophie’s voice is as important as anyone else’s. We try to include her everything and have her help out with the breathing treatments so that she’ll better understand what Jacob’s going through. I just don’t want her to feel like she’s ever forgotten. I love her so much.


Rode the bike today and took the DeCoro (sp.) hill near Vill’s house. It’s like a 1/4 mile up, and then straight down (really scary coming down, I wore my brakes out). I’m looking forward to tomorrow’s group training.

Finally: This week's CD’s in the player….

Jayhawks “Rainy Day Music” (Love that album)
Wilco “Yankee Hotel Foxtrot” (Haunting and beautiful)
Springsteen: I’ll go with “The River” only because I finally learned the lyrics to “Sherry Darling”, “Cadillac Ranch” and “Ramrod”.
Men At Work "Essential Collection" (Again? Hey, at least I’m not listening to that 7 CD 80’s box set I bought…. wait, did I just admit I own that?)

Just so you all know, I put a moratorium on buying any new CD’s (effective August 1st) until after the Marathon. Trying to make the sacrifice and save some money for the trip (ooooh, big sacrifice, Scott).

That’s all.


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