Decoded, again

Through the vicarious window of your computer screen, the truth about Celia’s disease comes only in fits and starts, clouded by physical distance and by our reluctance to share too much. Our blog is merely a mostly-polished fragment of our reality. We try to balance the positive with the hard stuff, to use discretion.
We last shared specific details almost nine months ago in March, shortly after Celia turned two.

 Celia, March 2008, age one

Now, she has more difficulty holding her head up and has lost muscle tone in most of her body.  She's been excused from the car seat law, and rides on someone's lap, or in a beanbag if another adult is not available to ride along and hold her.
She keeps her fists clenched and her arms are usually curled in, her torso balled up along the curve of her spine.  Although she's not quite as heavy as she once was, it's a challenge to carry her because her body is so limp and her neck so weak.  Her once meaty thighs aren't nearly as snug in her pants, and waistlines are now loose around her middle.
Her prescriptions continue to be changed and tweaked, and we're working down toward two daily doses so as to eliminate the need to wake her for medicine.  We use a pill crusher to grind everything into powder (several bites worth) and usually serve it with yogurt or pureed peaches, applesauce or oatmeal, with lots of cinnamon and sugar to mask the medicinal taste.  Sometimes she spits the pharmaceuticals and food right back out, and we carefully scoop them back in, hoping she'll swallow.  The process of feeding her just a few bites can feel like it takes all day.
She doesn't eat and drink regularly, perhaps because she's not hungry or thirsty, but sometimes because she is unable to coordinate the necessary process.  When she's interested in drinking, we mix nutritional supplements and thickener, and sometimes cocoa, in with milk.  When she's not able to drink, we use a syringe and drop liquids in ounce by ounce, slowly over the course of the day.
She sleeps a lot.  She rests in a variety of places, usually in the same room as the rest of the family and our noisy routines don't often disturb her.  Her circadian rhythm isn't very rhythmical, and we haven't been able to discern any patterns.  She's frequently awake through the night.  Sometimes she's content though, and the person whose turn it is to sleep with her is able to rest.  And sometimes, no one sleeps.
She'll share a rare, random smile, mostly when she's dreaming.  But more often her face contorts into cringes that we interpret as pain.  Her Hospice physician explained that her whimpers might give more information regarding her distress than we had considered -- when she feels really rotten and can't even muster the energy to sob, she whines softly and moans quietly to indicate severe discomfort.  And our hearts break into pieces even tinier than hearts should be allowed.
Some days, when she's awake, she cries a lot. So much that we wonder how there can be any cry left in her. Cries that, more than two years later, feel like they come from somewhere deep inside us. Cries that no longer call us to action, because there is nothing we can do -- our parental instincts to help calm the cry muffled in the way we wish the cry could be.  Cries that Valium and Morphine and Oxycodone can't always pacify.  Cries that make us hurt almost as much as she must be hurting.

Most days we wait.  Wait for her to wake up so that we can offer food and drink, so that we can push meds.  Wait for her to urinate, so that if she does, we can change her diaper.  Wait to see if the pain and anxiety meds will kick in so that she may stop crying. Wait to see whether she'll sleep at night, so that we can too.  Wait and wonder whether she'll wake up in the morning, because we know that some day she might not.  And although there's lots we won't miss about any of this, we've gotten a taste of what it will be like to miss her, because really it's not Celia here with us any more, it's just the shell of the little girl who once danced and giggled and kissed and hugged.  And we already miss her.

J&A