When Your Guardian Acts Like a Creepy Stalker Dude

Amanda: Hellooooooo
Me: Holy moly where have you been?! Do you know how long it has been since I talked with you?
Amanda: I know!
Me: I mean like I was wondering if they threw you in a ditch or were looking for some other place to dump the body!
Amanda: Don’t worry. They don’t have that much insurance.

Dear Amanda,

Since we couldn’t talk freely due to your every move being monitored, I decided to write you a summary.

It’s too bad you missed the hearing. I was all dressed in a suit just like a real professional. The judge denied my petition for visitation without feeling the need to get your thoughts on the matter, but at least my hair looked good.

It was kind of you to assure me you are doing just fine. But I can hear that little edge of nervousness in your voice. That same one that used to be set off by the lunatic oldest sister who threatened to put you in a foster home. The edge telling me that spark of drama is glowing in the bottom of your life experience and any little gust of wrong words or too much excitement can set it off. As long as it is kept just the right temperature, shielded carefully from the wind, it will stay a small orange dot. A glowing warning.

What a way to live! It’s like going through a tunnel where a pack of carnival characters await, all wearing masks that resemble real people but each one has a twist, or a cavernous mouth and eyes like that Scream character. You float along on your ride in a little boat called Narcissus. It’s traveling too slowly and you just want to reach the end and go get some cotton candy. But you wait with dread for the next ghoul to jump out at you: a frizzy-haired fat cowgirl in gaudy plaid who screams at you for eating too much, or a belligerent, beer-swilling faded athlete who waves a pool stick and prods you with it. You know it’s going to be temporary, because the ride will end. But it’s nauseating all the same.


Your court-appointed attorney tried to blame you for our 9 month long separation. I just thought you should know that he wasn’t really on your team. He was faking. He asked me if you had my phone number or my address written down somewhere. It reminded me of the advocates who claim that they will help you if you just call them.

Yeah, Amanda. Why didn’t you do your research?

The one good thing is, we know the Carnival of Narcissus wants to be taken seriously. It doesn’t want to look bad. If the Arizona court accepts your case, you will be under the jurisdiction of the Falk Bill, which means your guardian will have to prove my insanity to the court in order to prevent you from calling me.

In theory, of course. Because they have not been preventing you from calling me all along. Ever! Because even though I have been blocked from all cell phone contact, they have this land line that I could have searched on the white pages and found the number. And maybe you just didn’t feel like calling me for nine months.

Silly me.

And the judge has reviewed the court documents and tells me he understands that you are a “lively individual”, and this somehow negates the need for him to have an actual, in-person, private conversation with you.

And they say I am blogging about you too much. Private issues should be kept private.

So you and I talk on the land line and the guardian is hovering around in the background hanging on your every word and correcting things you say to me. Don’t you just want to hit him with the phone? Like that scene in High Fidelity when John Cusack loses his shit on Tim Robbins and his friend hits him with the phone and his teeth go flying across the room.

It’s a fantasy, of course.

It’s like a Close Talker or having someone brushing against you, bumbling through the invisible wall of Personal Space.

I can feel you rolling your eyes. But I like the eye roll a lot better than the voice tremor.

I don’t know how you put up with it, Amanda. But I am truly grateful that you get to escape three days a week, and go hang out at Adult Day Care where people are sane.


Your Blood Sister Nancy

Here’s the thing. And here’s a Bible verse for you.

“Finally, brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things.”

I write these stories because there needs to be a change. You know it, and I know it. Nine months of no communication from Amanda is unprecedented and alarming.

I have been asked to, “Play nice.” To, “Play along.”

But to me, this is not a game.

You can count on me to stay honest.

Therefore,  “if there is any excellence, if there is anything worthy of praise,” where Amanda is concerned, I will be elated to share that.

So far all I have seen from this group is a bunch of self-righteous self-congratulation. No one has reached out to me with a single word of kindness since this 9 months started. What I see is Amanda being used as a pawn in attempt to assert dominance and teach Amanda and me a lesson.

What do you think this is teaching us?

And here is another thing. What kind of incentive is there for friends and relatives to send Amanda anything, when there is no acknowledgment that she received it? For nine months now, every letter I have sent, every gift, once or twice a week, has gone into a void. While people do not send letters and gifts and expect to be thanked, it is still good to know the article has been received, not lost, or stolen or kept from her.  It is easy to conclude if you hear nothing about any of your mail, and you get no replies, that she is not receiving it.

Besides, not bothering to say thank you or somehow reply is extremely bad manners.

When I hear a lawyer’s explanation, or anyone’s explanation, of how my sister feels, I immediately discount it as probably false. I will only consider things that come from the horse’s mouth, and then I have to consider the circumstances.

I see no charity work in any of my siblings. I am not talking about church. I am talking about a serious gesture to make life better for someone less fortunate. Start using your energy for good instead of trying to prove some kind of misguided point.

A little humility goes a long way.

Amanda and I did just fine on our own for 43 years. We do not need messengers, monitors, interpreters or censors. We know how to talk to each other. I am telling you that things will be better if you butt out.

In other words, if you want to be thought of in a good light, if you want to be remembered as someone who did the right thing, then give me something better to blog about.








About Nancy J. Bailey

Artist, author, bad karaoke singer. Woodsy ragamuffin. Mom of a horse named Clifford who plays fetch and paints with watercolors. He visits libraries and schools with me, to promote literacy and making the world a better place. Yes, he is house trained, no, he doesn't live in my house! I have written three books about Clifford. But my newest book, THE NORTH SIDE OF DOWN, is co-written by my awesome sister Amanda, who has Down syndrome. Her unexpected one-liner wisecracks can always make me laugh. If you make me laugh, you've made my day!
This entry was posted in abuse, amanda, disability, dispute, down syndrome, down's syndrome, empathy and tagged , , , . Bookmark the permalink.

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