Nevertheless, She Persisted



I received a Valentine’s Day card today from my sister Amanda.

Amanda has Down syndrome. She is 46 years old and, following the death of our Dad in 2013, she went to live with our older brother in Arizona. He was assigned guardianship following a dispute with our eldest sister.

At that hearing, Amanda was allowed her First Amendment rights. She went into a private meeting with the judge and made her request.

I didn’t know it at the time, but she was asking to live with me.

Had I understood that she would do this, I would have thrown my hat in the ring and prepared some kind of proposal. But the judge denied this request. Since I was Dad and Amanda’s primary caretaker, his death rendered me homeless. His home was immediately seized and ransacked by siblings, who basically stripped it of everything of value, including a lot of my own possessions.

But I digress.

That whole story is told in the book Amanda and I wrote together, “The North Side of Down.”

The book won an award.

North with BRAG

As often seems to happen when power is bestowed, and especially with people who suddenly get religion to go along with it, Amanda’s guardianship has turned the corner into the land of Cray-Cray.

During a phone conversation, she told me that our sister had “starved” her during her visit there. She lost 17 lbs during the two or three weeks she stayed there. She was cornered and bullied and yelled at. She was afraid to tell this fact to her guardian. She turned to me instead.

As a result, she no longer gets to talk to me by phone.

She wrote me a letter asking if she could come and stay with me during her 2016 trip to Michigan, and saying “don’t give up on me.”

As a result, she no longer gets to write me letters.

I took the matter to court last summer, so she could express her wishes to another judge. After all, during her first hearing about guardianship, she was given a chance to speak her mind.

As a result, she wasn’t brought to this hearing.

The judge basically threw us under a bus, giving the guardian free rein to do whatever he wants to do, to or with Amanda.

But Amanda, in her gentle way, persisted in trying to reach me.

Amanda and I have been told to sit down and shut up.

I can’t help but draw the parallels here, with a big ol’ bright red Sharpie.

All Amanda and I want to do is continue on with our lives, peacefully, without interference. We want to have pizza and see a movie. .We want to talk about our friends, and commiserate with memories of Mom and Dad. We want to talk about the Golden Globes and the Academy Awards. We want to play loud music in the car and shout from the top of a hill. You know, normal sister stuff.


I have tried to compromise.. We were even asked to interview for the Dr. Phil show, and let him act as mediator. This seemed like a great idea especially since the guardian is under contract to allow Amanda to promote our book.

I wanted to ask Dr. Phil about the effects of the stress of separation on a person with Down syndrome. Studies indicate that it can lead to dementia.

Just one more thing for me to fret about.

But when you are dealing with people in power, all that matters is the power. There is no room for empathy or consideration in the mind of a narcissist.

On February 27, it will be seven months since Amanda and I have spoken. This will be the longest stretch in our lifetime that we gone without talking.

I have Amanda’s Valentine’s Day card. I have a picture of her this time. I told someone that the photo just feels like evidence from the kidnapper that she is still alive. The horror of the situation is indescribable.

I know Amanda, who is much more stoic than I, and I know in her patience, she is waiting for this B.S. to end.

Why this punishment? What did we ever do that was so wrong?

We spoke up. We asked to be together.

If we had only been good little girls, with no opinions of our own.

Yes, there really are people this heartless, this crazy. Amanda and I love movies and I imagine that she is hoping, as I am, for an epiphany or plot twist that lets the good guys win.

As our country careens along into this weird phase of the pseudo-administration, I see heroism every day. I watched Sally Yates stand up for what was right in the face of white men in suits, and she was fired from her job as Attorney General.

I watched Elizabeth Warren try to read a statement in Congress that was written by Martin Luther King’s wife, and she was told to sit down.

I wrote emails and made calls trying to make Amanda’s visit happen, and I was accused of a “temper tantrum.”

Amanda and I are in good company.

My wish is not to promote infighting or trouble within this hopelessly dysfunctional family. My wish is for Amanda and me to be left alone. Sure, my fury is colossal. My fury shakes the walls and chews nails. My anger busts out of every self-righteous stereotype and judgmental package of lies they want to seal me up in. I could power a bus with this anger.

I cannot be silent about this. My sister has no voice. It’s my job to speak for her. I will shout for her rights from our hilltop until there is no breath left in me.

But I understand the profound need for peace in the world. I know Amanda would love for everyone to get along. I am completely open to an apology and any small sign of contrition from any one of those who have wronged me. I would love to just go about my business and not have to make any more blog posts like this. But I have to know Amanda is okay, and that will not happen until she is allowed to speak her mind.





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!
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