Thursday, December 11, 2014


Sometimes it's hard to be Positive.

I've tried to write dozens of times, but I like to keep it positive and I've been struggling.

Sometimes when you have chronic illness you teeter between wanting to be seen and how utterly invisible you become.

Sometimes when you are sick, everyone around you learns to function in the disappointment.

Sometimes when you don't feel well, you think of all the wonderful things you want to do when you feel even just a little better.

Sometimes you are crushed when that time doesn't come.

Sometimes I feel bad that my family is impacted by this crazy lack of energy.

Sometimes I feel bad that me friends are called in to help more than to play.

Sometimes Bella runs around chanting that she believes with a bell that does not ring. sometimes she hits the wall.

Sometimes Lily makes me books and tells me she hopes I feel better- every time she sees me. Her moods are like a yoyo.

Sometimes Kiera cleans the entire house. I hear from other parents that she is constantly helpful and offering to help back stage.  She understands. Or at least is acting like it. She washes her hands 50 times a day.

Sometimes Phillip will hug me and fills my water. He'll play piano for hours and switch gears every time I yell a new song at him. He hides.

Phil is my everything. He cooks, he shops, he cleans. He is exhausted yet he gets it done. He comes home with new rank sewn on his flight suit and a printout that says it's so.

I wanted to be there. I want to pin the silver leaf on his shoulder. But there was no ceremony. Such is our life these days.

Parties and pomp and circumstance swirl around us. And yet somehow the important bits get glossed over. It makes me sad because he works so hard. At work and at home. He notices. He would never say anything.

Sometimes my heart breaks most for those around me.

Sometimes I feel like it's my fault.

Sometimes I try to write and find the positive. But sometimes it's just too hard.

So sometimes I just stay quiet.

Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)