Saturday, August 22, 2009

Is this a battle of wills, or something more important?

I picked up the amino-acid concoctions ordered by the geneticist and made by our local pharmacy for Queen Teen. Three separate bottles of liquid vitamins: LCarnitine mixed with one other I can't remember, Thiamine, and Ascorbic Acid. We're waiting for CoQ10, but so far insurance is refusing to pay for it. Three bottles of fuity flavored, sticky, vitamin rich liquid Queen Teen must take three time a day.

Let the battle begin.

Queen Teen came home from school and sat at the table for her after school snack. She eyed the bottles suspiciously.

"These are your vitamins, the special vitamins the doctor ordered to feed your brain," I told her.

She eyes me suspiciously.

"You need to take them three times a day, so let me pour you some juice to help wash it down."

She crossed her arms and looked away.

Uh oh.

I poured her juice and then pulled the dose of Thaimine into the plastic syringe. Gently testing it with my tongue I was relieved that it didn't taste bad. Not great, but not bad.

"Okay, here's the first one. Open up."

She wrapped her arms around herself tighter and wouldn't budge.

"Please baby, this is important. I wouldn't ask you if it wasn't important. And look, it tastes good." I licked the syringe again. "Yumm. It's kind of fruity."

She rested her head on the table and started to cry.

"Honey. What is it? What's wrong?"

More crying.

"Look. I'm putting it in your juice so you can just drink it without having to taste it."

She shook her head and kept crying. Then she said, "I don't understand why I have to do that."

"This is the special vitamins your doctor ordered to help your brain. You said you wished you didn't have ataxia. Well, these vitamins are supposed to help." I leaned closer. "Come on. Just take the vitamin and get it over with."

Raising her head from the table, she glared at me with all the venom she could muster through tear filled eyes.

I stared back. "You're not getting up from this table until you take your vitamins."

She looked away.

"Fine," I said. "Then sit there. But you're not getting up until you do."

"I don't understand!" Queen Teen cried harder.

I got up from the table, feeling frustrated and angry. Why does everything have to be a battle? Her hearing aids, her glasses, her rocket boots, getting blood drawn or a shot... everything! I'm so sick of fighting all the time! Well this is one battle I'm going to win. It's important. She needs to take these vitamins or her cerebellum is just going to keep shrinking and then she'll be sorry!

I looked at my child and wanted to start crying too. I would win this fight! She would take the vitamins!

Then a little voice in my head said, this is ridiculous.

What am I really fighting for? That she comply with my wishes, or that she take the vitamins?

I remembered there was a chocolate donut in the refrigerator so I found it, warmed it up in the microwave, then sat the plate in front of her on the table. I said, "Scootch over," which thankfully she did. I sat down beside her on the bench and put my arm around her. "I'm so sorry this is so hard for you, honey."

She looked up at me and then buried her face in my chest. "I don't understand why I have to take it."

We had a long conversation about her ataxia and how her brain isn't getting the right information from her hands so they shake and that these vitamins can help with that because they make her nerves more healthy, and nerves are what the brain uses to understand what the body is doing, like the way calcium makes bones stronger. She still didn't get it (neither do I, really) but she calmed down enough to eat her chocolate donut.

When she was finished she looked at her cup and sighed. "Well, I'm thirsty." She drank some juice. "It tastes funny, but it's not bad." She drank some more. Finally she drank the rest of her juice.

"Thank you, doll." I hugged her tight and let her get up.

That night, she drank her amino-acid infused juice without much more than a big sigh in protest.

I had to remember just how much Queen Teen has to put up with from doctors and how little of a say she has. She's had surgery on her feet, orthotics tied to her legs, hearing aids shoved into her ears, glasses pushed on her face, blood work three times a year on average, and lots of different doctors poking and prodding her, asking stupid questions while testing her reflexes over and over. She's been sedated, irradiated, MRI'd and scanned. And none of that has made anything better. She still can't hear very well, or see very well, or walk any better, nor have her hands stopped shaking. She's getting worse, not better, and still doctors want to do things to her.

She wasn't being an ornery teenager out to defy me, she was telling me she's had enough.

1 comment:

a said...

It must be difficult to ride the waves but just do your job as a good mom. It takes a lot of energy, doesn't it? Perhaps what is new and frightening will become routine or at least less of a tug-of-war with Rhia. Hope so! a.w.