Today was a weird day. I lost perspective. It happens.
Jonah not eating is driving me crazy. My Mommy Gut is telling me that it's just a control issue and that he's just being difficult. I don't think it's physical. I don't think he hurts. He just WANTS. TO. HAVE. CONTROL. I have no idea where he gets that from. Ahem.
I cannot believe we went from him eating two to six ounces of solids in the last couple of weeks to not even eating ONE bite. Every single time I think he's figured it out or we're over a certain hurdle, we always backslide. ALWAYS. It is exhausting, frustrating, and it really, really, really makes me want to cuss... which I've done today but I'll withhold from all you innocent bystanders. You're welcome.
THEN, we finally got out of the house after two long tube feedings, bath, dressing change, morning nap, and a pee-all-over-the-place-and-through-two-layers-of-leg-bandages incident to go to ... the pharmacy. Yeah, I know. We are really living it up over here. So we go to the pharmacy, and I had to go in because I needed some over-the-counter things, and this older lady is staring us down. She came right up on us (like, NO personal space whatsoever) and asked what happened to him. So I explained about EB and she sort of acted really skeptical. And then she said (wait for it...):
"I bet a lot of people look at him and think you've done really bad things to him."
(MOUTH AGAPE)
I said (very sweetly), "Yeah, I know he looks pretty bad. You wouldn't believe the mean stares we get."
What I wanted to say was, "Bad Word You, Lady. If I didn't already worry and wonder if that's what people thought, I know it's the truth now. Thanks for making it so clear. DO YOU KNOW WHAT I'VE BEEN THROUGH TODAY?!"
And I KNOW (seriously, I know) that she's just kind of lost her filter and that she wasn't trying to be mean or hateful or even insensitive. I'm not mad about it (anymore). I guess, more than anything, it just confirms to me my worst fear... that (some) people think I AM THE CAUSE for all his pain. I can't tell you how sad that makes me. Many EB families have been turned into Social Services. I know that people think they are doing the right thing. But it is such a heavy, emotional thing to be accused (even if only in someone's head) of child abuse when you give your heart and soul and literally ALL of your time to care for your hurting child. Twist that knife real good, whydontcha?
(And yes, I know I need to get little cards made up. It's on my list.)
But then I went to my friend's jewelry party (she makes BEAUTIFUL stuff), bought myself a pair of earrings, turned on Country on the way home and belted out Any Man of Mine like my life depended on it, and I'm feeling much better now. Thankyouverymuch.
Going to watch Friday Night Lights, head straight to bed, and sleep up to regain perspective. Nothing like seven hours of staring at the backs of your eyelids to help put things back in focus. I love you, sleep. You never let me down.
