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Thoughts + Light

Wee Shady Miracles

8/28/2020

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​Today I think⁣
We should all take a peek at⁣
A shadowy place⁣
And see if there may have been a seed⁣
Who was content enough to bloom⁣
Without trying too hard at all
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The Book With No Scruples

8/27/2020

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The Retaliatory Plan of a Narcissistic Mother
In February of 2020, I learned that a book was being written about my young daughter, who has Down syndrome.
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The book had been written unbeknownst to my husband or me, prior to seeing the author's press release splashed all over social media. So, since the author is my estranged mother, we requested to see a manuscript.
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The author really loves to use the word "splendid."
 
​In her tale, the author takes the form of an enchanted bird that assists a helpless disabled girl with the use of a 3D-printed flying machine (that breaks and has to go to the repair shop, even though the bird is magical?) and allows the disabled girl (based on my daughter) to vanquish all the bullies in her school, in a scene straight out of "Neverending Story."

The girl in the book (who had my daughter's full name until the author changed it) hides under a catalpa tree (our catalpa tree) whilst lamenting about the struggles of having weak muscles and poor eyesight, until a supernatural (but not omniscient; hence the repair shop) bird descends to save her from the perils of being "less than" everybody else.
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My piece in Medium

Naturally, my husband and I recoiled at the poorly written, absolutely unauthorized "book."

Gobsmacked, I emailed the author. "You do not have permission from John or me to use our daughter's likeness, description, family status, physical stature, school status, mannerisms, etc., in any piece that you write. This also includes social media."

Her response? "The book will be published. Mirabel, and many others, will love it. I don't need your permission to do anything."


Things have become so strained with my narcissistic mother that, in June, a judge granted me and my children a 1-year Protection Order against her. While that judgment offered me immediate relief and a wash of gratitude, I know, as any victim of someone with a personality disorder knows, that she is going to use this time for her "revenge;" and paying a sketchy vanity publisher to publish this book is part of her sick ploy.

The sloppy, tense-jumping narrative was written entirely in one drunken evening (Christmas Eve, 2019) by a sad and struggling self-published author. "I did it," she told a friend, "to hurt [Emily]. And I didn't care."

My mom is a reactive bully, a person for whom revenge is best served with a snaky little lick on her pointer finger which she then touches to her thumb tip while hissing "tssssssss." She can't do that to my face anymore, so she retaliated to my decision to go No Contact by sweatily disgorging her absurd hero story.

My mom's decision to write an "educational children's book" about Down syndrome is coming from a person who has never volunteered with, advocated for, worked with, or been educated about people with Down syndrome; in fact, my daughter is the only person with Down syndrome with whom she has ever had any contact. The book is smattered with hastily-Googled facts about the basic descriptions of people with Down syndrome, cringey passages like "Having handicaps came in handy, sometimes," and offers zero personal knowledge of a condition for a story that the author claims will give readers "a chance to learn about it."

Naturally, no reputable publisher would carry through with the printing of this book, especially after a rallying cry from family, friends, and the disability community about the poor taste and offensiveness of it.
But Brown Books is what's called a "vanity publisher," which means that self-admiring wannabe writers who can't get picked up by a legitimate company pay tens of thousands of dollars to then be burdened with boxes of their own books that they are responsible for offloading.
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A fascinating article about a shady business model

​​My husband and I, along with several friends and family members, messaged the publishers at Brown Books about the abhorrence of publishing a book that is not condoned by the parents of the little girl, and that is shamefully misrepresentative of people with Down syndrome. Their response was……. radio silence. That is, until they published a blog post (now removed) defending their right to publish whatever the hell they want, calling my daughter a "mentally challenged protagonist" (yes, it really said this), and announcing "we stand by our author." [I managed to print out a copy of the post before they took it down.] My family has still not heard a word from them, and apparently the book is still slated for an Autumn release date.
So here we are. I with the dripping leaves of the vibrant tree I planted from a struggling shoot and a daughter who is strong and capable and loved… and an estranged woman (my own mother) who is not even allowed to come within 500 feet of her for a year, who is proudly bragging about her upcoming tome that is unconscionably dedicated to her.

In a sane and kind world, empathy would not be so hard to come by, and perhaps my mother would be able to find within herself - after enough work was put in - the error in her manic and ruthless ways. 

But we are a people of finicky will and an abundance of struggle, shaping us into the creatures we become - with the ability to harm or help. The ability to soften or struggle. The ability to step back or push bullishly forward. And, perilously, the inability to choose the better option.
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I love you, Mirabel. You will ALWAYS feel safe, protected, and fully, brightly adored with me and your Dada.
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    by Emily Nielsen

    "I am determined to be cheerful and happy in whatever situation I may find myself. For I have learned that the greater part of our misery or unhappiness is determined not by our circumstance but by our disposition." 
    - Martha Washington

    I'm a lively, fun-loving mother of two and small fitness studio owner who may drink champagne in glitter one night and drink green smoothies and stretch the next. Hence, my studio is called Balance. I help women reach their best physical and spiritual selves through kick-ass workouts mixed with gentle yoga and joyful affirmations. It works.

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