Baby Girl

I thought she'd be a second son.

A great smile, seriously.

In my husband's family,

that was all his brothers had had

up until that point.

But there she was, smaller than her

big brother at birth, but healthy. I had too many

blue onesies, not enough 

pink. I made curtains for her room,

matching dust ruffle for the crib. She learned

to pump her legs on the swingset before

her brother. Bittersweet smile, though.

Wasn't much of a warning, but 

maybe we just weren't paying attention.

That day at church, she sat on my lap 

clapping to the music. Her hands weren't flat.

Complaints about the stairs, I'd chalked up 

to five-year-old silliness. No. 

Juvenile Rheumatoid Arthritis. Not silly at all.

For 28 years she's lived with it 

(we've lived with it, too)

not one of the lucky ones to outgrow it.

Pain, her companion, pain

meds her best friend. She's

learning to live without the

drugs that did more harm than good.

Not the pain. 

The pain is always there. 

In her teens, the photographer said,

"That's the best smile in the whole school!"

I was there and she lit up the room in response.

I need to see that smile again. I know

it's still there, under the stress,

the wishful thinking, the why-me's.

Under the pain. It's still there, baby girl.

Prodded, poked, pricked by needles,

x-rayed, injected, made fun of, misunderstood,

exercised. Bad choices along the way,

but who hasn't made those?

She's forgotten how to smile

at times. Forgotten who cares. 

Forgotten to care.

Her first meds were baby aspirin,

mixed with Coke. Gold, names too long to spell, 

prayer, experimental measures,

remission that lulled us to sleep before we

woke one morning

to find it all crashing back into our lives.

A woman now, with children of her own.

Trying to regroup, focus, step out of

her comfort zone, but when you're 

uncomfortable every single second

it's hard to do. Tough love from us, 

sometimes. It's still love, though. 

You've got to know that. 

It's still love.

(c) Ellen Gillette, 2012

Our daughter Terri turns 33 today and may or may not appreciate having a poem about her posted so publicly! But we're proud of her for living with challenges most people can't fathom, for making some healthy, positive lifestyle changes for her own sake, for that of her children. Happy birthday!