If this seems like something that doesn’t concern you, as my sister Amanda would say, “Think again.”
Amanda has Down syndrome.
How does this relate to you? Let me explain it.
At some point, God willing, you will grow old. You will lose some of your faculties. You will know what it is like to be dependent upon someone else, such as someone who has Power of Attorney over you.
Or, a Guardian.
With the way the law stands right now, the guardian could decide not to let your wife, children or siblings visit you. Even if you ask for them. Even if you beg for them. The guardian chooses.
If the guardian has a grudge against one of your family members, who has called him out for being an asshole, guess who pays?
He will also have complete and free access to all your finances and possessions. If he decides to empty your bank account and take himself for a joy ride to Seattle, he is free to legally do that.
You can do nothing about it.
If he decides to give you drugs to “keep you calm” and shut you up, guess what? You have no recourse.
My brother Jon, who died August 5th, gave my narcissistic siblings an opportunity to play a little game with Amanda and me.
And oh boy, did they play it well.
They knew full well that Amanda and I had waited over 3 years for a chance to do a Girl’s Day Out… A movie and pizza.
We both hoped this was our chance.
We also both loved Jon, whom as it turns out, was the only decent person in the remaining immediate family.
This was our chance to cry together, have our memories together, and help each other through the horrific loss.
The key word is, “Together.”
At Jon’s memorial, I first spot Amanda, and she gets up and hobbles across the room. She is having a lot of problems with her knee, which apparently are not being addressed. She is using a cane. She grabs me and hugs me so tight, and we both weep, whispering that we miss each other and love each other.
(The other thing not being addressed, which I have noticed before, is her clothing. She is dressed like a sister wife. It’s horrible. Purple and black paisley from Polyester Town, and a bad wig. Really she deserves better. But I digress.)
Meanwhile her guardian TED BAILEY is hovering about six feet away, watching every move, not even allowing us this one private, healing moment.
We are having the conversation when the second oldest sister RAECHEL BAILEY KOLB who is for some reason compelled to stick her face in every situation, comes up and with a high, verging-on-hysterical-I-am-actually-trying-to-pull-you-away-from-her-under-the-guise-of-getting-you-to-participate voice, asks me to come and help her move some chairs.
I had sent RAECHEL an email specifically asking her to stay away from me at this event.
“I am talking to Amanda.” I do not look at her.
Then, the guardian’s wife, RUTHIE BAILEY comes charging over and barks at me. “She needs to get off her leg!”
Amanda covers with her typical graciousness. She turns to me. “Would you like to sit with me?”
She holds out her hand. I take it and we find a chair. We talk some more about travel. I tell her about my fiasco getting to Seattle, and staying in the motel with my 50-lb chest of drawers on wheels that I had to lunk down two flights of stairs. We laugh. Our conversation is monitored by RAECHEL’s HUSBAND, ED. I don’t care. Whatever.
It comes time for Amanda to find a seat. I help her get to the front row. RAECHEL informs me that Amanda is to sit on the end, and I can sit there too if I so desire. Great! Cool! I sit Amanda down and prepared to sit next to her.
The Guardian TED BAILEY marches up. “Nancy I am sitting beside Amanda.”
“Of course,” I say graciously. But I forget to genuflect.
Not wishing to sit near any other siblings, I walk to the back of the room.
I do not stay in the service. The first person to get up and start talking is ROBIN. The oldest. Jon could not stand ROBIN. I get up and walk out of the building. I decide to just hang out, outside, until the speaking part is over and maybe when the food comes out I can talk to Amanda a little more.
The speaking goes on and ON and on. I greet stragglers outside, introducing myself. Many of them are elderly and I help them through the door and guide them to the guest book. I then step back out.
Finally, the thing ends and people start getting food. Naturally, Amanda is surrounded by siblings and in-laws whom I have no wish to interact with. That’s okay. Everyone should be allowed equal time. Now and then she turns her head and gazes at me wistfully from across the room. I wave, give her thumbs up, and go on mingling. There is a great photo show featuring Jon in various stages of his life, that his son has made, so many memories flashing across the big screen.
One time, Amanda hobbles to the bathroom leaning on RAECHEL BAILEY, looking like a prisoner being marched out of the courtroom. As she passes, she mouths, “I love you,” at me. I laugh and smile.
At the end of the event, even though I do not want to talk with her, I politely ask RUTHIE BAILEY what day they are leaving for Michigan.
“I think Thursday.”
It was Sunday. Cool. “That gives us plenty of time for a Girl’s Day Out!”
RUTHIE BAILEY throws her hands up. “Don’t mention that!”
“What? Why? We want to do the movies and pizza. With Judy. The Three Musketeers. Like the old days.”
“Yes!” Amanda agrees.
“You will have to ask Ted. He’s the guardian.”
There are few people in the world I want to talk to LESS than TED BAILEY. These include all three of the R’s.
But it was for Amanda, so I suck it up. “Ted! I am instructed to ask you if we can have a day for Girl’s Day Out. Judy, Amanda and me. Pizza and a movie.”
“I’m sorry.” he snips.
He turns to walk away.
“So that’s it?”
“Wait a minute.”
I run outside after him. Judy hollers at me to stop. I am on a mission. I am not about to just lie down for this. I have not seen my sister in 3 years and that was for only two hours. Since then, we have been through guardianship Hell when we were forced to stop communicating for 9 months, until I filed a petition in court.
Amanda has suffered a lot. She has come a long way. I am not about to let her down.
“I don’t trust you,” he snips.
“That’s my blood sister!”
“I don’t approve of that terminology.”
“WHAT?!!! We’ve been calling each other Blood Sisters since she was eight or nine years old!”
“Look up the meaning.”
(The meaning for ‘blood sister’ is, ‘sisters related by blood.’ Which, we are. However, it probably has some weird superstitious implication these days, smothered under the hyper-religious, like other good things such as chocolate and R rated movies. TED AND RUTHIE belong to an evangelical church that apparently has fallen over the edge into the Cult abyss.)
By the way, he does not have the right to impose his religious beliefs on Amanda. Her freedom to worship as she chooses is protected by law. Therefore, she can call me “Blood Sister” until the cows come home. He can’t stop her. At least, not legally.
Just then, who approaches me for the third time, now after being specifically asked not to, but RAECHEL BAILEY. I am standing with my arm around Amanda. I am so shocked by the confrontation, I have left the building so suddenly, that I am still holding a glass of lemonade in my left hand. I am talking about how I raised Amanda and taught her to tie her shoes and walked her to school and taught her to read. Amanda is standing silently with her shoulder snugged in under my arm.
RAECHEL digs her talons into my wrist and starts trying to pry my hand off of Amanda’s shoulder.
“Don’t touch me!” I snap.
“Let her go!”
“You let ME go!”
“You’re not the guardian!”
“Get off of me right now,” I warn for the third time.
“Let her go,” she is still clawing and tugging.
I fling the lemonade. The contents of the entire cup splash on her face and head and dribble down. Some of it gets on Amanda’s shoulder, but because she is wearing ugly polyester, it is easy for me to brush off.
“You are horrible people,” I say to TED AND RUTHIE.
“YOU are a horrible person,” RUTHIE snaps back.
“To hell with all of you.”
I storm away. I walk up the street, leaving the lot of poisoned siblings behind, as well as my poor Blood Sister, who has been cast with the great misfortune of being assigned to people like TED and RUTHIE… People who only care for their own agenda, their own feelings, their own warped sense of propriety. People who abuse her in deep and emotional ways, who won’t let her see a movie with her sister when their brother dies. People who try to erase her past by forbidding phrases that mean so much to her, like “Girl’s Day Out” and, “Blood Sister.” People who won’t let her sit with the person she most wants to see in the world. People who have no qualms about doling out traumatic events like this, shoveling pain on her, and blaming everyone else but themselves, when in truth THEY are the ones who could so easily fix it.
Amanda and I wrote an award-winning book together, “The North Side of Down.” We share the meager royalties, 50/50. I expected the R’s to be angry about the book but Ted fully supported it at the time. I never thought he would betray me by jumping on board with them. Things became complicated when he got religion.
If you are not careful, when you are old, you could end up with a guardian like this. Be very careful where you sign your name.
And for the love of God, if you have a child with a disability, make provisions for them in case anything happens to you.
P.S. RAECHEL, who physically assaulted me in the parking lot by grabbing and jerking my hand, actually called the police and asked them to arrest me about the lemonade. I explained to the officer that maybe he should arrest her. He opted to just take the report.
You see, these people think the same rules don’t apply to them.
Be careful about giving away your power.
Amanda’s Blood Sister
…To be continued.