Light in the Silly-Act Disease

Today's crisp fall weather called me away from the dishes and laundry, away from the gluten-free recipe search, the job-hunt, and the doctors' phone calls that I was waiting to receive. After watching Naomi disapear on the yellow bus, I loaded Hannah, Emma, and Toby in our van. "Where are we going, Mama?" Hannah asked. "Ere ee go-ee?" Emma echoed. "It's a surprise," I smiled. "Bye-bye," Toby said cheerily, not caring at all what the destination was, only that we were going.

When we pulled up to the large, wooden, castle-style park, Hannah launched into a melodramatic presentation of thankfulness, "Ooooh, thank you, Mommy! Thank you, thank you, I love this park soooo much. Oh, I'm sooo happy, Mommy! I'm as happy as I ever could be!" She continued, but her line of cheesy appreciation faded away as I stepped out of the van. It reappeared as I opened her sliding door. "Thank you, Mommy! Thay-ay-ay-aynk you!" she sobbed in overly-done sobs of joy. It almost made me feel guilty, like I hadn't taken her to parks enough times before. "Just go play," I laughed.

For nearly an hour Toby couldn't get enough of climbing through the narrow secret passage-ways and up and down endless sets of stairs. Then he spied the picket fence that enclosed the playground, and beyond that: endless adventure. He bounded up a park bench that sat beside the fence, then on to the back of the bench, then to the top rail of the fence. I caught him as he teetered precariously over a four-foot drop, but he wasn't at all grateful for my rescue efforts. He lurched and screamed at having been denied access to the great beyond, and would no longer settle for child's play. There were no choruses of thankfulness to gild our parade back to the van.

Good news greeted me on the answering machine when we arrived home. The GI doctor's office had been able to move Hannah's biopsy up to next Thursday. This means less time for a tired, whiny, malnourished Hannah to wait until she can join Noami on a gluten-free diet for life and hopefully begin to put on some weight and regain some energy. When I told Hannah that she was going to be able to have her biopsy as soon as next week, she opened her mouth wide and with a stunned-speechlessly-happy expression collapsed to the floor in a dramatic pseudo-faint. "Um...are you excited?" I asked dryly. "Oh, Mommy, I'm soooo happy!..." she began again.

Naomi came home from school today equally cheerful. She bounded off the bus with a grin, then raced her sisters for the door, leaving them in her dust. "Wow!" she laughed, "My legs and feet have just been wanting to run and jump all day!" Inside she skipped down the two steps to the snack-stash in our garage, then leaped back up. "My!" she giggled, in apparent amazement at herself, "My legs just keep wanting to run and jump!" She downed some fruit and cashews, then dashed out the back door and ran as fast as she could to the end of the backyard. You cannot grasp the full significance of this if you don't understand that for the last year Naomi has almost always exited the bus after a day at school like a zombie. She would stare blankly, walk slowly, head straight for a snack which she'd chew absent-mindedly, and usually would talk as little as possible. She is wasted, completely empty after a full day, and only maintains composure as long as she is left alone to regain her strength. Any little break in this quiet, monotonous routine would send her into a tailspin of tantrums. (See my previous note: Willing to Try.)

I was so astounded at Naomi's bright eyes, her chatty demeanor, and her leaps of energy that I grabbed my camera and followed her into the backyard. This is the clip I caught of her:



You also can see that I'm being entirely truthful about Hannah's melodramtic ways ("My whole body feels happy because I'm gonna have a surgery!" Matt told her it would be better termed "Silly-act" disease for her). It was a hopeful day. Naomi did have a near melt-down when bedtime went long tonight, but she recovered quickly, and that is a great improvement for her. I would glady spend my days fighting with xanthum gum and sorghum flour to see the spark in my daughter's previously blank eyes; to know that she's had an entire week without headaches, tummy aches, or joint pain; to see her leap around the backyard with life in her again. It is a joy you cannot understand fully unless you've lived it, but anyone who's had a sick child can imagine. I fear writing it down for the possibility that the delicate bubble may burst, but it would be a greater loss not to share my joy today.