Independent Means

Standard

IMG_4641“I’m going to say three words. Can you repeat them back to me? Sock. Blue. Bed.”

Yesterday, I was sitting on the couch next to Sierra as the nurse who supervises the personal care assistant who started working with Sierra in August came out for a periodic home visit. Now that Sierra has turned 18, the visiting nurse is required to ask Sierra to engage in a series of verbal tasks and answer a few questions each time she meets with her in order to assess Sierra’s mental acuity and her ability to care for her own needs.

“Sierra, can you repeat the words back to me that I just said,” Bernadette gently asked.

Sierra turned to me with a look of panic on her face. “Mommy, help me,” she begged.

“Si, it’s okay,” I reassured her. “There is no right or wrong. Do you remember any of the words?”

Sierra shakes her head no.

“None? How about the first one?”

Bernadette offers, “You wear them on your feet.”

Sierra, tentatively, “Socks?”

“Great, Sierra,” Bernadette continued. “What about the next word?”

Sierra grabs the front of my shirt and tugs at it. When Bernadette had rattled off her word list, she’d pointed to her own shirt as she said “blue” as her shirt was navy blue.

“Yep, Si,” I said. “You’re on the right track.”

“It’s a color,” said Bernadette. “The color of my shirt.”

“Blue,” Sierra finally offers.

“Last one. Do you remember it?” Sierra shakes her head no again.

“Sierra, it’s where you lay down to go to sleep at night,” Bernadette feeds her helpful.

“Bed,” says Sierra.

“Great job. Can you tell me what year it is, Sierra?”

“Mom!” Sierra yells at me with concern as she buries her head into my shoulder. “Mom, help me! I don’t know.”

“That’s okay, Sierra. It’s 2013,” says Bernadette, smiling reassuringly at Si. “This is the final question and we’ll be all done. What month is it?”

Sierra looks at me sadly. I kiss her forehead and rest my hand on her back.

“Si, it’s really okay,” I say. “Don’t worry. Do you know the month where Thanksgiving happens?”

“Turkeys,” Sierra says with confidence.

“Yes, turkeys and stuffing. Do you know what month that is?”

“No.”

Bernadette tells her the answer: November. And then she asks Sierra again, “Do you remember the three words I told you earlier and can you tell them to me now?”

“Mom!” Sierra shouts again. “I don’t like this. No,”she says with frustration as she begins to pick at the embellishment on the front of her sweater.

Two weeks ago, I filled out Sierra’s annual special needs adoption subsidy recertification paperwork, recording social security numbers, obtaining letters from her primary doctor regarding her current health status, bringing forms in for the school to sign to verify her continued enrollment. Last week, I filled out her annual Medical Assistance renewal documents, listing the insurance and prescription plans I and my husband also carry her on through our employers. As is typical, I’ve been arranging medical appointments for her, scheduling her annual CT scan to check for cancer and an exam with her oncologist, obtaining an order for an echocardiogram to monitor her congenital heart defect, requesting referrals so insurance will cover the procedures. At her pediatrician visit three weeks ago, he and I discussed the implications of Sierra’s most recent lab work, particularly her A1c level, and if those results warranted changing the frequency with which we monitor her blood glucose at home each week. Based on that conversation, I needed to reach out to Sierra’s endocrinologist to plead our case for reducing the number of needle sticks, my view now validated by the pediatrician. I’m not sure if I’ll win that argument, but I’ll certainly try to negotiate less blood lettings, as long as that doesn’t compromise Sierra’s health.

Sock. Blue. Bed.

My daughter, now 18, considered an adult by the law. We, needing to hire attorneys to represent her and us, spend our abundance of free time and profusion of excess cash, to go to court and argue Sierra’s need for us to continue to be her health representatives and legal guardians.

What month is it?

Sock. Blue. Bed.

What year?

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s