hayden in action

This was taken by Taylor (can't you tell?) on August 8th 2009.

not your mother's rant

Outsiders (and by outsider I mean any individual who does not live with the day to day reality of this disease) who tell me everything is going to be fine make me feel crazy.

This has been established. It's kind of like when you're bitching about your mom or some other family member who has gotten on your last nerve and whomever you are bitching to says, "Yeah, you're right. Your (fill in the blank with mom, brother, dad, spouse) really IS an asshole!" And something inside you screeches to a halt a says, "Hold on. It's okay for ME to say that, but it is NOT okay for YOU to say that. Back off, JERK FACE!" And now you're battling your friend who was just trying to commiserate with you. Yeah. That's exactly what it's like.

I say everything is fine to make myself feel better. Sometimes "Every thing's fine" is what allows me to get through whatever it is I'm trying to get through... But you telling me that every thing's fine somehow tells me you're minimizing what's happening in our big box of a two-story these last 9 months. And maybe you're not. Maybe you realize that the situation is precarious, but you can't say that so you use phrases that gloss over the difficulty like fluffy frosting on cake that has cracked and broken. Maybe you know that every time Mitchell has treatment, the aftermath gets worse. Worse to the point where I'm harassing him hourly to call the cancer center because he's been lying in bed for days and can't eat or really drink and he looks small and shrunken. And he's hating me because I keep asking (and I even hate myself) but I can't stop nagging him.

Then I have to step back and realize, people are going to deal with this thing the way they have to deal with it. And I'm going to either let that go or hold on to it. And remember that no one knows until it happens in their house what it means or how it hurts or how angry you can get at someone who really isn't at fault.

letter of complaint

Dear Excessive Emailer,

When I gave you my email address, I did not realize I was going to be bombarded with group emails containing your latest cake pics. I have seen a home made cake before and, while I'm sure you're extremely proud of your work, have no interest in viewing a slide show filled with your mediocre creations. If I wanted a cake that looked home made, I'd make my own.

Sincerely, me

Taylor gains confidence

Dylan continues to ramble

Taylor begging again

Now begging and playing coy

Mrs. Connelly & Dylan

Ms. Cronk & Taylor

Dylan in the midst of asking her gazillionith question

Taylor begging me to stop taking pictures.

first day of school 2009

Getting out of the car, Taylor seems as though she may vomit...Dylan's in rare form

Posing in front of the school

That's my undershirt not my stomach hanging out there...

Dylan's desk

question

How can you be a stay at home mom with multiple young children and NOT cook? Anything. Ever. Hmmm.....

Just wondering.