Nap

Annaka is a great sleeper.  She’s a champion at taking naps and often sleeps right through the night until morning.  While we often had to tip-toe around her brother and sister while they slept as infants, Annaka is often able to rest peacefully through some of the most absurd racket.

Unfortunately, she sleeps so well because she’s exhausted.  As I’ve mentioned before, the liver damage causes ascites in her belly, a watery swelling that pushes up into her lungs.  When she breathes, she often takes air as if she’s just run a sprint. Since she does this all day long every day, she literally wears herself out by just breathing.

Now we often look at our other two kids in disbelief, shocked by their remarkable health, a condition we had merely taken for granted most of their lives.

JaLana and I often ask ourselves, and each other, “If she’s happy now, with an organ that barely works, with tubes jutting out of her body and a belly the size of a volleyball, what is she going to be like when she’s, well, ‘fixed?’”

Because Annaka doesn’t know it’s not normal to have a feeding tube sticking out of her nose.  She doesn’t understand why people wince the first time they see the Broviac catheter hanging out of her chest.  Her belly has always been in the way, stunting her physical development, limiting her ability to move and  learn about her world.

This is all she knows.

What will she be like when she can know much, much more?

I’ve always considered myself a pretty optimistic, relatively positive-thinking person, but living with Annaka this summer, as her personality has started to come into its own, I’ve had to reconsider how limited my so called “upbeatness” really is.

I look at my baby girl, and I know she’s uncomfortable because I can see it in her eyes, yet she smiles.

She smiles and she reaches for my face and then pulls it to her own to offer me her sloppy, baby-version of a kiss.  She lights up at just the sound of her mom’s voice.  She’s happy.  She should be miserable, right?   She should be afraid, anxious about her future, angry at God for making her the way she’s made?

But she isn’t.  She smiles and she plays, fascinated by her ability to move the bright red block from her left hand to her right.  She watches her ridiculously loud siblings karate kick each other across the floor; she listens while her silly parents argue about another silly grocery list.

She smiles, she closes her eyes, and she once again falls asleep.