Wednesday, July 22, 2009

On Suffering

I don’t think of suffering when I look at my pretty girl. But you do.

Don’t feel bad. It isn’t your fault. The dictionary tells you that to suffer is... “to endure pain, disability, death, etc., patiently or willingly.”

Down syndrome is a disability, isn’t it? And Kimani seems to be willingly enduring it.

I took my child to her pediatrician and while there had the doctor complete some paperwork that included my daughter’s diagnosis. The doctor wrote, “Down Syndrome” on the line and then in the part for a description of the symptoms, she wrote, “developmental delay.”

Huh, that’s it. My girl is slow to learn things. This is considered suffering in our society.. a culture that values the intellectually and physically fittest above all. And here I thought we were simply a beauty obsessed culture.

Too bad we’re not because she surely is gorgeous. A face made of all the pretty things we prize the most, particularly facial symmetry. With sparkling blue eyes and a dainty nose and rosebud lips she is perfection.. oh no wait.. those eyes, if you look close, if you stare at them long enough you can see it. The slight tilt gives it away... her suffering.

When she was newly minted, a mere two weeks old, I wrote in my journal “And yet she does not seem to be suffering. It is me who is hurting and scared.” And so it remains today.

The suffering is mine and yours.

Note: I could have linked the "you do" to numerous places but I chose this one because it makes me even sadder to know that fellow Christians think this way about my child.

Saturday, July 11, 2009

Crossing the Chasm

For some reason when I look at this picture, I am transported in reverse across the chasm in time to the days when he was still all a mystery to me. A time when staring into those eyes could make my skin tingle and my heart race. Back then, I swear, my jaw would tighten and my incisors would stretch at the thought of sinking a bite into that neck.

Twelve years time has relegated those transcendent intimacies to mere memories triggered by the two dimensional, split-second capture of the abstract, yet sublime, husband.

Next week, in celebration of our tenth anniversary, we go away alone to a very romantic place. Yeah baby, 3D here we come!

Wednesday, July 8, 2009


We were drafted. My only way out would have been to take her as the first casualty. Before I played this game of Risk, I knew I wouldn’t deploy that sniper. So now, here I am, far from the battlefield still dreaming of little shattered bodies.

This time last year I was living in a NICU chair, angry and sad, but still unaware of the real battles that lay ahead. I didn’t know yet that my baby and I had entered a war. I didn’t know that her aorta was too narrow and wreaking havoc on her heart and lungs. I didn’t know that a teensy bacteria could find its way into her brain and eat away at it. I didn’t yet understand that death really does come for babies.

Sarah, Rita, Jasanna, Miracle, Jayshawn, Bella, Savanna, Ryan, Kimani, Ashlyn... our battalion... some died, some made it out, some are forever wounded, some are still enlisted. I wonder if their moms feel like I do. I wonder if their dads play Guild Wars and kill fantasy creatures in dark livingrooms.

I wonder if I can ever get the shrapnel out from under my skin.

(Thanks go to my dear husband for providing the screen shot of his Guild Wars character (named after me, awww) standing over her latest trophy.)