Tuesday, February 16, 2010

Paranoia, when does it go away? Does it go away?

I look at Bean every day.

Well, to be fair I look at ALL my children every day. I give them a once over, checking on parts, boo boos, hairs, nails, toes, noses...it is a two fold mission...I want to make sure they are ok, safe and healthy.

Really though, I try to make sure I soak them in. I want to remember their parts, know each "beauty mark," each freckle, each crevice, each spot.

Bob's two birthmarks - one that I noticed on the day that he was born and knew no one could ever mix him up...and the other the memory of his NICU stay...

Belle's gentle curve to her collar bone with beauty mark that seems to have been placed on her ivory skin by the model gods (a la Cindy Crawford),

Bean's long skinny fingers with beautiful long nail beds...a hand model as it were...with not a freckle on any of them, her beauty mark of prominence is just off center of her midline, right by her hairline....

Puppy's fantastically edible earlobes with an adorable beauty mark right in the middle of his right ear...

I myself remember looking down at my own hands when I was 12ish...looking over at my mom who was driving and noticing her hands...they were the same. I often look at my hands, my thumbs specifically and think that I have her hands....

For the past year I look at Bean a bit differently. I watch her walk, I watch her write, I check her knees, I look at her fingers, I watch her hips, I watch as she eats or doesn't eat. Anything for a sign that god forbid there is a sign of her disease.

Bean gained 17 lbs in the past year, granted she has grown too. Originally my 45lb child became a 42lb child as the disease reared it's ugly head...the steroids took her to 52lbs by May. She was distorted...didn't really look like herself. Her mother's day "card" and picture from preschool just didn't look like my little girl.

People come into my office at work, see that picture, and commented how cute her cheeks are...and all I can think, is yes her cheeks are too cute, but those aren't her cheeks.

By the time July 4th came around I began to recognize her again.

My best friend W mentioned that Bean looked a bit on the skinny side when we saw her in NY in September for Rosh Hashanah. I poo pooed it, as I thought it was just that W saw her the last time in April and couldn't have realized how swollen she was then...but when I look back on it I realized that I missed it. W was right. Beans clothes were falling off of her. As we returned home from NY later that weekend, the flare up of SJIA returned as well.

By the time Bean finished this round of steroids she weighed 60lbs. Again people commented on how cute her cheeks were...and I think I even said to someone..."yes she has great cheeks, but those aren't hers!"

Bean has started to loose her steroid weight gain, she is down to 58lbs. Her face is getting back to normal, her cute cheeks are back! I love seeing her smile...it is infectious!

But her pants are looking quite roomy on her...is she looking good? Is she looking like herself?

The paranoia has sets in.

Is the weight loss normal after being off the steroids? Is she looking sick? Is it part of the disease? Do I worry?

Of course I worry. I always worry. Does the paranoia ever go away? I don't know.

But for now...I continue the study of my four beautiful children and all of their amazing parts.

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