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We’re starting to see the clouds parting on this last CVS episode… little glimmers of Jacqui peeking through the fog now and then.

During one of her brief ‘awake times’ today, she mentioned that she might be interested in eating tomorrow…

“Mommy… I fink maybe I will like to eat a snack tomorrow.”

I peered down at the sleepy head in my lap and smiled. “Well, that would be great! What do you think you would like to have for a snack?”

She arched an eyebrow and gave me a fleeting glimpse of a sleepy dimple. “Hmmmm… how ‘bowwwwwwt… SUSHI!!”

“Sushi??” I was completely thunderstruck. The word ’sushi’ is never uttered at our house. We’re not sushi people. We’re not any kind of seafood people. Not even fish-stick people. Maybe a-tuna-sandwich-now-and-then people, but definitely not sushi people.

She flashed a toothy grin up at me and repeated, “SUSHI!”

“Do you even know what sushi is?”

A comical attempt at a serious scowl crinkled her brow as she answered, “Course I do. Itsa kinda not-cooked fishy. Probly reely slimy. Don’t worry, it won’t make me gag too much. Yummy!” She made a loud slurping noise for emphasis.

I just looked at her in stunned and bewildered silence.

“You’re ‘posed to squish your eyebrows all up like you’re mad and say, ‘Ha, ha. Very funny’ “.

I was completely lost. “What??”

She sighed in dramatic frustration. “I was bein’ sour-catty, Mom.”

I rubbed my temples trying to locate a fragment of the conversation that I could make sense out of. “You’re what?”

“Mooooom! Sour-catty… you know… it’s like a not-funny joke. Wen sumbuddy is bein’ sour-catty, you’re all-ays ‘posed to say, ‘Ha, ha. Very funny.’ Like dat. But only don’t laugh. Now you say it.’

“Sarcastic? You’re being sarcastic?? For crying out loud — you’re five…”

“Mom. Pay da tenshun. Say, ‘Ha, ha. Very funny.’ ”

“Ha, ha. Very funny.”

“Dat’s better. Sometimes you take a very long time to figger thins out, doncha?”

… Ha, ha. Very funny.

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Today wasn’t supposed to be like this. Not another storm so quickly on the heels of the last one. We were going to go to the library today… she wanted a book about flowers. She was laughing and giggling after breakfast, but as we slipped on her shoes to leave, that awful switch flipped. The light in her eyes snuffed out as a new CVS episode stormed through her… before the pink even had a chance to return to her cheeks from the last one.

So once again, I mingle my tears with the rain and pray that she will come back to me soon. As she slipped away into another week of sleep, she whispered with a faint teasing grin, “I fink dis means I get to sleep in your room ‘gain.” My little girl is so much braver than I…

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Like the sun dispersing the clouds after a storm, Jacqui returned from her CVS episode this afternoon. And my heart rejoices!

Now we begin the task of weaning her back off tube feedings to eating on her own again. Thank you to all of you for your wonderful words of encouragement, warm thoughts, and priceless prayers. Our family is so blessed by each and every one of you!

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One of the hardest things about CVS is the waiting. Waiting for your beautiful child to come back from nothingness and pain. The days of an episode stretch on… a windswept beach with no end in sight. But you cling to what you know. Remind yourself that it will pass. Stare at the faint scribbles in the sand and will yourself to remember… she will come back.

Soon she will light up the sky with her brilliance… begin writing once again on your heart.

And your heart will soar. Storing away all the precious moments…

The wonderful laughter.

So that the next time, and there will be a next time, you can draw out each memory. Treasure it. Evulse hope from each shred, scrap, stitch. And assuage your broken heart with the credence that laughter does indeed await still… she will return.

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Image Courtesy Pet Food Direct

I’m not a typically over-emotional person… really I’m not. I can usually stare straight ahead and shrug my shoulders as the world comes crashing down around my ears. Sometimes I can even manage the faintest hint of a smile. But… not when I’m sleep deprived. Which I apparently am. Why else would a forty-pound back of dog food set me to bawling in the grocery store when I stop by for milk. It was an end-of-the aisle display of the same brand we used to buy for our dog… but she died THREE YEARS AGO. Three. Years. Ago. It’s dog food for crying out loud…*sigh*. I really, really need a nap.

I looked longingly at the La Quinta Inn on my way home from the grocery store… but no. Ken would have figured it out and come after me. I know he would have, because he’s told me he’s had the same crazy wish. Just a quiet room with some comfy pillows for a whole luxurious eight hours. No interruptions. Is that too much to ask? I’m typing this at two am by the way. Because I’ve given up on my pillow. It’s just not to be. About every 10-30 minutes, Jacqui has been needing me to hook up her decompression tube to her G-Tube during this CVS episode. And I feel like a big whiny baby when I see what she’s going through, but wow… this is really bordering on a torturous level of negative quantity sleep.

During the two-and-a-half hours when she did sleep last night, Kyle didn’t. He had a bad dream or something and woke up terrified. What in the world could a twenty-three-month old who’s never known anything but butterflies and rainbows find so terrifying and why did it have to come and bug him at four am??? Honestly.

So we sat and sang songs and I held him close, whispering in his ear all the wonderful things he could grow up to be one day, all the while longing for my pillow. I reminded myself how someday I would long for nights when I could cuddle my baby boy, that they are growing rapidly short. And this logic might make sense to my sleep-deprived brain sometime two weeks hence. But not right now. Try as I might to savor the moment, my body screamed out, “Just go to sleep kid!! PLEEEEEEEEZE!!” So I sang yet another song, then finally laid the sleepy little monkey back in his crib at ten minutes to five am.

I had just touched my ear to the pillow and Jacqui’s feeding pump alarm started beeping, red LED screen flashing frantically, “DOSE…DEL, DOSE…DEL…” So I got up, rinsed the bag and added more formula, re-primed it, threaded the tubing back into place, made sure all the clamps were opened, cleared the dose delivered, re-set the dose volume, got Jacqui up to go to the bathroom, decompressed her G-tube, hooked her back up to the feeding tube, started the pump, re-filled her warm water bottle and tucked her back in.

5:20 am. I face-planted into my pillow and slept like a rock. For twenty minutes. Then Jacqui woke up needing her decompression tube hooked up again. Then Kyle decided it would be a good day for an early breakfast. And now it’s two am Tuesday morning and I’m half-way through a repeat of last night.

Ken’s sleeping in the family room so he can be semi-alert at work. He did take the eight pm to midnight shift for me, but for some maddening reason, I laid there just looking at the clock, utterly exhausted, telling myself “JUST GO TO SLEEP!!” And I only managed to sleep the last hour of it. I want to run up the white flag, but I’m the reinforcements… wait, no… that’s not right… “We have met the enemy, and he is us?” Something like that. I’ll be exceptionally pleased with myself if I read this next week and it makes even the remotest amount of sense. Good night to all you lucky, lucky people who get to spend more than thirty consecutive minutes with your pillows this week. I’ll try really hard not to be jealous.

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