Thursday, May 24, 2007

Out of the Blue

It was a typical day.

In usual fashion, Meghan had woken up earlier than expected. Gracie was still buried under her blankets refusing to leave the warmth of her bed. Meghan woke up happy. She seemed pleased to start her day. "Mornin' mama."

To put it mildly, I'm not a morning person. I don't deal well with my girls in the morning. I have to consciously think about treating them kindly and displaying patience. I have to resist the urge to be my true self. You may not know that me, but I do. She is horrible to be around.

What I really want is to be left the hell alone. When I wake up, it takes a while for my senses to re-engage. Lights are too bright, sounds are shockingly sharp to my ears, and work clothes against my skin distract me. I can't filter my experiences well, and when the whining begins, it is all I can do to not run screaming out of the house.

The morning was sliding downhill as fast as a California mud slide. I had dragged my lazy butt out of bed late, and well, as a result, the whole schedule was off. My bad attitude seemed to be predestined.

We were already 15 minutes behind schedule.

The girls were perched in their child sized chairs. Elmo was singing (in my ear) on the television. The hair brush in my hand streamed through Grace's blond locks until I'd hit another snag. "Ow! That hurts." As I moved around the front of her, Grace said, "Mommy, why do you have a bruise on your arm?"

"I had a blood test yesterday, Grace."
"I have a doctor's appointment today. I had a blood test to see if I'm when you have tests to check your liver, Grace."

Out of the blue, there it was again: Alpha-1.

"It is not fair!"
"What isn't fair?"
"I don't want tests. The other kids don't have tests," she said emphatically.
"Grace, are you mad you have tests because you are an Alpha?"
"Uh huh. It's not fair."

I swallowed hard, and took a breath. Meghan cocked her head slightly, and seemed to wait for my response. Grace pouted and folded her arms with a hrumpf. My mind searched its recesses. I was foggy, and hadn't quite woken up yet. What could I say? What would help her? What could help her? Damn it, she has a life threatening genetic disorder. Somehow, somewhere I'd have to come up with something to show her she wasn't that different from her friends.

"Grace, you know that we have to watch your liver with tests. Did you know that Grandpa Sandy's pancreas doesn't work good either? He has to have tests too. There are lots of people who have parts of their body that don't work well. My blood goes too fast in my body. Your liver doesn't work quite right, but lots of people aren't perfect honey. Test help doctors to make sure we stay healthy."

"Oh," she said blankly. "Ouch Mommy! You are pulling my hair."

"Do you understand what I told you Grace?"

"Uh huh, but I hate tests. It's not fair!"

This is getting harder and harder to explain to Grace. I feel ill-prepared, and my guilt overwhelms me at times about her Alpha-1. Anyone want to mentor an Alpha-1 mommy through stuff like this? I feel like I'm flying in the dark with this. I'd better get my head on straight about this soon, or she'll pick up on my internal worry.

Today, I loathe Alpha-1.


~Denise~ said...

I'll loathe it with you Jen. I'm not sure I can say anything else but to tell you that you and the girls are always in my mind and that the hope a cure is found so that precious little girl doesn't have to have those stinkin' tests.


Anonymous said...

I'm with Gracie....It's not fair!!!! You have nothing to feel guilty about. Chin up, remember it's all about attitude. You're a great mom.
Take Extra Good Care,

Sarah said...

hey jen,

my sister has the betes (type 1.5) and she tests all the time. maybe she can talk to grace a bit too. and i'm not a mom, but from what i've seen, you are a darn good one!