Cruel

The cruelty of this disease consumed me this morning. Some of its wickedness is obvious. She can't walk or even crawl. She can't talk to us or see us across the room. Celia can't feed herself, sleep through the night, help her brother learn new things.
What might not be so obvious is how this disease slowly attacks the parents, too. It has brought out the worst in me. I'm irritable, callous, and impatient. Sometimes I'm not nice to my wife. I get mad at my dog for barking when the mail comes. Cruelest of all is the pain I get in the pit of my soul after I lose it... when I realize that someday she won't be here.

I pray for patience. I pray for peace. And some nights the only thing I pray for is that we all get some sleep.

One of my favorite naps with Cel - May '07

Andy

Tissues

I’m a cautious driver. I buckle her in and look both ways and stick to the speed limit. Still, lipopigments build up in her body’s tissues. I do alright in the kitchen. I make decent, well-balanced meals, and I feed her local and organic when I can. Still, lipopigments build up in her body’s tissues. I am a teacher. I know that reading and signing and talking and singing are important, and I do those things routinely. Still, lipopigments build up in her body’s tissues.

I am not a neuroscientist. Or a gifted researcher. I am not a magician or a miracle worker. Even if I were a wrestler, I couldn't take them down. No matter what I do, lipopigments build up in her body's tissues.

All this makes me think I'd better buy stock in boxes of tissues...

JEB

Clearly

Andy got new glasses recently.
Clearly they make him look younger...

JEB

Laps

When I dive in to what used to be, the swimmer in me wants to stay and do laps.

JEB

Core

Something strange has happened. I woke up today and my newborn was suddenly three months old. Tucker seems to communicate with us more now; when we speak to him he smiles and bicycles his legs and Jazzercizes his arms. And he spits out new sounds almost as often as he spits out milk. His fists don’t maintain their signature balled up position all the time, his hands grasp and shake toys, as his eyes, big as lollipops, track their movement. A pair of notches settle between his brows as he examines his hands, our faces, the world. He is learning, studying the core courses he's outlined as his own little three month old curriculum, taking everything in. He's growing, in more ways than one.

And my little girl is growing, too. On my lap she likes her legs pulled up, toes tucked in. The soles of her feet are as smooth and as soft as the paws of a kitten. She buries me beneath a heaviness I enjoy, the weight of my child against my chest. I love you, Celia. I think these words over and over, willing them to the core of her being. She knows. I know she knows. And although she can't echo the words, can't give us hugs and kisses any more, she loves us back. Her daddy's good looks aren't the only thing reflected in her precious face. Our affection is reflected there, too. She loves us. And I feel it in my core.

JEB

Seeing Double?

Guest Blogger

With only eight weeks of training left until Ironman Lake Placid, I wanted to take this opportunity to give you an update on my efforts toward the awareness of Batten Disease, the Care For Celia Fund, and my training progress.

First and foremost, I want to personally thank all of the generous and kind-hearted individuals who have donated approximately $3,000 to the Care For Celia Fund. Many of you have written me letters saying, “Thanks so much for giving all of us a chance to be helpful”. I have to say, I have received an outpouring of love and support for the Betz family. Remember, any size donation you make will help the Betz family continue to make a difference in the quality of life for Celia. Recently, Andy and Jenni told me about adaptive seating they're working on getting for Celia, that will be purchased with money from the Care for Celia Fund, and that will help her sit comfortably and bathe safely. For details on how to make a donation, please visit www.careforcelia.com. My goal is to raise $10,000 by the time I compete on July 26, 2009.

TriLife IRON TEAM 2009, practicing the Lake Placid course

When I decided to train for the Ironman, I wanted to compete for more than just myself; I wanted to compete for Celia and go for the ultimate challenge of helping raise awareness of Batten Disease. I hope you will continue to support my fundraising efforts and encourage me along my training journey to the Ironman.

Mandy