"Well, what we're gonna do is put a mask over your face, give you this really yummy syrup to drink, and it'll make you sleepy like you're in the clouds…then when you're sleeping we'll put the I.V…."
"So you're gonna give me a shot."
This wasn't Adelia's first rodeo.
This was our UCLA sleep over. Adelia underwent brain testing to try to get a handle on her illness.
"We think its Ataxic Cerebral Palsy. We don't know for sure. We think it's Ataxic Cerebral Palsy and something else. We don't know what else. We don't know why. We think she has hundreds of mini seizures a day, but we don't know."
After multiple MRI's, CT Scans, genetic testing, blood tests, x-rays, physical therapy...
We don't know, we don't know, we don't know…the mantra.
It never hurts them…every time they do it to someone else they never feel a thing.
Kayla says. " She can't hold still long enough. She has hyper sensitivity so even if it doesn't hurt, she thinks it does. She has a long road ahead of her and I don't want her to feel more terrified than she already does every time she comes to the hospital."
"Let's ask her. We can always stop and sedate her if it looks like its not gonna work."
Adelia goes along. She nods yes, she can do it, she's got this.
Part of the process is holding an air gun over each taped plug to dry the glue for ten seconds.
Adelia did the counting.
Half the time in Spanish.
Yeah, she's got this.
Kayla and I made soothing sounds, talked to her. But, as always, Kayla did most the heavy lifting. She let Adelia count her freckles, measure her fingers with a measuring tape, played number games, letter games, held her hand. It was almost more than I could take, which is why there are no photos.
There's nothing worse than seeing your child sick, scared, in pain. To see your child's pain as she watches her child 's pain is a double dose of the most abject misery.
But, like Adelia, Kayla's a thoroughbred who can pull it out when the stakes are high. And she did, all the way to the finish line.
Now we're talkin.'
No. So I won't try to find any.
Yeah, those are my sock monkey jammies. Don't judge me.
Smiling her big Adelia smile, letting us know all is well with her.
She looks happy, content, without a worry.
So why does it still feel hard to breathe?