Emily Landow slowly walks towards the front of the court room. It isn’t technically a court room, of course. It is just a chamber for a hearing. As befitted such an administrative function, it isn’t large or fancy. It is small, with plain walls and cheap office furniture. Fluorescent lights glare from the low ceiling. There is seating for only a few observers behind a makeshift barrier. In front of the barrier, there are two desks for the attorneys, a slightly raised desk for the judge and a small enclosure with a waist-high barrier meant to hold a witness for questioning. The stenographers that might once have graced such a proceeding have recently been replaced with audio recordings and AI transcriptions of witnesses’ testimony.
There is no romance here, just cold, procedural, law.
As Emily walks the short distance to the witness stand, she suddenly identifies the smell that has been permeating her senses. It is the smell of dry rot mixed with human sweat. They have been merged, as if the scents of physical and spiritual resignation have both been baked into the fabric of the building.
Emily takes her seat on the tired-looking chair in the witness box. The dull red fabric has been worn through in a few places. She takes her seat and looks around the room from her new perspective. The lawyers are still there. The State’s attorney looks almost bored. As far as he’s concerned, this is just another custody hearing. They’ve experienced a million of those. Her own attorney looks mildly excited, but she suspects this is his first case.
She looks at the empty rows in the back of the room, there is nobody there to witness her testimony – not even her ex-husband. And then, finally, she looks at the judge. He looks back at her.
He is a large man, with a cold and just slightly disgusted expression.
As she sees his dislike, a chill runs through her. She realizes then that she has never, in her life, been afraid of a man. But she is afraid of this man. So much lies in the balance; and his power is immeasurable.
She raises her hand, and takes her vow – as directed by an automated voice.
Then, the first of the attorneys, the man representing the State, steps forward. He is a haughty-faced middle-aged man who seems to resent her. She turns to face him, anger briefly flashing in her eyes. This is the man trying to take Ethan away from her. But despite her flash of anger, she is not filled with fire and fury. She is filled with prayer. She is praying, silently, that it will all work out.
She is praying because she has so little real hope.
“Is your name Emily Landow?” the attorney asks. It is a pro-forma question. He’s been here before. He’s done this before. He’s just going through the motions.
“Yes,” Emily answers, quietly.
“And what is your son’s name?”
“Ethan,” Emily says. She considers mentioning that she has three sons, but she certainly doesn’t want to bring the others into this proceeding.
“Ethan… thank you,” says the attorney, almost as if he hadn’t known. It is possible he hadn’t.
“And Ethan is a down-syndrome child?” continues the attorney.
“No.” says Emily, flatly.
“Excuse me?” says the attorney.
The judge peers down at her and in a deep baritone he says, “May I remind you that you are under oath.”
It isn’t a question.
“Ethan is a child who has down syndrome,” says Emily, “He is not a ‘down-syndrome’ child.”
“Okay,” says the attorney, glossing over the difference. He doesn’t see the humanity in her boy. “How old is Ethan?”
“Six,” says Emily.
“According to the records,” says the attorney, flipping through a legal pad, “Ethan has had a number of medical issues.”
“Yes,” says Emily.
“Can you tell the court about a few of them?”
“Yes,” says Emily. She’s been ready for this. “He had Tetrology of Fallot, and that has to be corrected every few years while his heart is growing. He has hearing and vision issues. He has a lower than normal intelligence in some respects, although he does some intellectual tasks on par with his peers. He has weight issues and a lack of muscle mass. But he is doing well, in general.”
“I see,” says the attorney, “Has he ever not ‘done well.’”
“Yes,” says Emily.
“Can you tell us about the time he had pneumonia, when he was nine months old.”
“Uh, yes,” says Emily, “He got sick. He had had heart surgery only a few months before. He was still recovering. When Ethan developed a fever and a cough, I brought him to the hospital. They treated him with antibiotics, but they didn’t help much – or at all. And he got quite a bit sicker. Just moving made him hurt. And he was tired and had a hard time breathing. But he came through. He recovered.”
Emily ends on an almost hopeful note. She doesn’t mention how high his fever had been. Or how bad his cough had been. Or how scared she’d been that he wouldn’t live. And she doesn’t mention that he’d just laid there, for days – to tired to even protest his pain. She doesn’t mention that as she’d watched him, his pain tore at her. She cried then, constantly. And she prayed he would recover. ‘Helpful’ relatives came and suggested that maybe it would all be for the best, if Ethan died. And she shouted at them, and she drove them away. She remembers all of that. But she shares none of it with the court.
“Hmm…” said the attorney, ignoring the positive tone of her voice. “Well, we’ve heard from medical experts – as have you – that Down Syndrome children have weaker immune systems. Do you agree?”
“That’s what I’ve read,” says Emily, “But I’m not really an expert.”
“But you are an expert on Ethan – on his state of mind?”
“I guess so,” says Emily.
“Was Ethan in pain when he had pneumonia?”
“Yes,” says Emily. She wants to lie, but she felt that pain. Just remembering it almost brings her to tears on the witness stand. Emily bites her lower lip, trying to bring herself back under control.
“And it is less likely he would have had pneumonia, if he hadn’t had Down Syndrome.”
“I suppose so,” agrees Emily.
The lawyer flips a page, “Can you tell me about the heart surgery?”
“Yes,” says Emily.
“Was Ethan weak, before the surgery?”
“Yes,” says Emily.
“Can you describe more?”
“Yes,” says Emily, reluctantly. She draws in a deep breath, trying to stay narrowly technical. “Ethan was diagnosed with the Tetrology of Fallot when I was still pregnant with him. It showed up on the ultrasound. Tetrology involves a combination of four heart defects. They had to wait six months for him to be strong enough for the surgery. But then they operated on him, and they repaired the defect.”
The attorney nods.
Emily remembers Ethan’s time in the Neonatal Intensive Care Unit. He spent months there, hovering on the edge of survival. He was so weak. And he was growing so slowly. He couldn’t grow faster. Even as it was, his skin had a bluish pallor, from a lack of oxygen. She prayed for him then, just as she had before. He had survived. As always, Ethan had survived.
“Was he in pain then as well?”
“I think so,” says Emily, as flatly as she can manage.
“Does Ethan have intellectual issues?”
“He is different,” says Emily.
“How?” demands the attorney.
“He doesn’t learn like the other kids. He learns whole words. He sees things differently, that’s all. So he doesn’t test well, in a normal way.”
“Can you tell the court his approximate IQ?”
“I have not let him take an IQ test.”
The attorney seems genuinely surprised. “Why not?” he asks.
“Because I don’t want to put him in a box. He isn’t just a score on a test.”
“But everybody else puts him in a box, right?”
“Almost everybody,” the attorney insists, “How can they not? He looks different, he acts slow. He sticks out.”
“Objection,” mutters Emily’s attorney from the back of the room, “I don’t believe the attorney is the one testifying.”
“Strike that,” says the State’s attorney, “Do some other children regard your son as being limited?”
“Yes,” says Emily.
“Do you feel he feels ostracized?”
“No,” says Emily. But she knows she is lying. Ethan is the happiest person she knows. She loves to watch him cross a room. His smile is infectious. He is a warm and loving person. But she knows he feels alone. She’s seem him crying and bashing the walls in frustration and anger and pain – not physical pain, but something far deeper and more damaging.
Emily closes her eyes, for just a moment.
And then she hears the next question.
“Does Ethan wears hearing aids and glasses?”
“Yes,” says Emily.
“Do his peers?”
“No,” says Emily.
“Don’t you agree that he can’t run, that his speech is unclear and that his body is shaped differently?”
“Yes,” says Emily.
“You are aware that State Psychiatric examination has found him to suffer from disruptive and oppositional behavioral patterns?”
“Yes,” says Emily.
“And you still don’t think he feels ostracized?”
“No, I don’t. He is loved by those who know him.”
The attorney nods. He knows she hasn’t answered his question.
“Has he been sick, since that pneumonia he had as a baby.”
“Yes,” says Emily.
“According to my records, he has been hospitalized 15 times in the last five years. Is this correct?”
“Yes,” says Emily.
“And, in your opinion as his mother, has he been in pain?”
“Yes,” says Emily, reluctantly.
“Mrs. Landow,” says the attorney, “Are you aware of the TGRT therapy. The Trisome21 Genetic Repair Therapy.”
“I am,” says Emily.
“Can you describe it to the court?”
“Yes,” says Emily. She pauses for a moment and then says, “The TGRT therapy removes the extra copy of chromosome 21 from individuals who have Down Syndrome.”
“Does it cure Down Syndrome?”
“It removes it,” says Emily.
“Emily,” says the attorney, almost condescendingly, “The state is demanding custody of Ethan in order to administer TGRT. We want to cure his Down Syndrome. Why don’t you want to cure his Down Syndrome?”
“Objection,” comes the voice of Emily’s attorney, “Leading.”
Emily stifles a sigh of relief. For all of her fight against the imposition of TGRT, she doesn’t know how to answer the State’s attorney’s question.
“I’ll retract that,” says the State’s attorney. “My records show you have spent $430,000 – most of it the State’s money – on therapy to deal with your son’s various health and mental issues. Is this correct?”
“Yes,” says Emily, “That seems about right.”
“What are you aiming to fix, with all that therapy?”
“I want to help Ethan overcome his physical and mental challenges.”
“But you won’t allow the state to conduct TGRT therapy?”
“No,” says Emily, flatly, “I will not allow it.”
She doesn’t want the lawyer to challenge her. She has no idea how she can justify her decision. She just feels like somehow she is protecting her son.
“I want the court to note,” the attorney says, turning to the judge, “That by Emily Landow’s own admission, her son Ethan is often in pain, has mental challenges and has a wide range of physical disabilities including a severe and recurring heart defect. She also refuses to allow the administration of the TGRT therapy that could repair all of these issues. It is the State’s position that this is precisely why Ethan should be placed in State custody, at least for the duration of the treatment and possibly permanently given the troubling and uncaring resistance towards Ethan’s well-being that Emily Landow has shown… I have no further questions.”
The attorney takes a step back. Emily breaths in again, holding her hands in her lap, trying to keep her composure. Anger, fear and pain are all bubbling up against her poorly composed exterior. Somehow, although she can’t explain it, she is failing her son.
Her own attorney steps forward. The man is working pro-bono, he is a rookie attorney for a small firm – sacrificing a day’s work for a hopeless cause. He is all she could retain. Her hopes, in this impossible fight, rest on the shoulders of a man who looks like he’s seventeen.
“I only have a few questions,” her attorney states. His voice is high-pitched and immature.
“First,” he continues, “Why didn’t you abort your son?”
“What?” says Emily, shocked.
“You heard me,” says her attorney, “I’m sure many people have asked you this question. Both at the time and now.”
“Have you met Ethan?” she asks.
“Yes, briefly,” says her attorney.
For a moment Emily let’s her anger show, “What kind of *** would want to kill that kid?”
“Thank you,” says her attorney. Emily just looks at him, even more confused.
“And can you tell me,” continues her attorney, “Why are you rejecting the Trisome21 Genetic Replacement Therapy?”
“I don’t really know,” says Emily. “It just doesn’t seem right, somehow. I feel like I’m protecting my son.”
Her attorney pauses. And then he asks, “At the beginning of your testimony you drew a distinction. You said Ethan was a child who has Down Syndrome, not a Down Syndrome Child.”
“Yes,” Emily agrees.
“But isn’t Down Syndrome a core part of who he is? Isn’t a part of his human condition?”
Emily just stares at her attorney. At first, she’s confused. But then she realizes what he’s saying is true. All the pain, all the challenges, all the disabilities and all the surgeries and all the fears. They’re all a part of Ethan. She can fight them, one by one, but she can’t simply repair them – she can’t simply erase everything and be left with the same boy in the end.
“Yes,” she says, slowly, “The Down Syndrome is a core part of who he is.”
Her attorney continues, “So, do you feel that if you eliminate the Down Syndrome, you eliminate the child?”
“Yes,” says Emily, surprising herself.
She hadn’t thought of it before, but now she knows it. TGRT will effectively kill her baby.
Her attorney asks, “Would you like to share any words, for the record, about what you think of those who want to force TGRT on your boy?”
Emily thinks for a moment. And then she realizes what the young man is asking for.
“Yeah,” she says, “I’d like to ask him what kind of *** would want to kill that kid?”
The attorney just smiles.
“I have no more questions,” he says, simply. And then he backs away from the bench.
He backs away from the bench and leaves the fate of Ethan Landow in the hands of the all-powerful judge.
Is this Torah reading, Korach and his men of name foment a challenge to Moshe’s rule. After ignoring the prophecies of Eldad and Meidad and defending Miriam for her gossip against him, Moshe pleads with G-d to reject Korach’s usurpation. His specific claim is that he never took a single donkey from the people.
Why does Moshe defend against Korach when he allowed so many others to encroach on his authority? And why does he defend himself in this way?
With the Sin of the Calf, G-d says the people should be condemned because they are stiff-necked. He wants to eliminate them and replace them with a better people. But Moshe argues they should be saved for the same reason. In the simple reading, Moshe convinces Hashem they should be saved because they are stiff-necked. Our stiff-necked nature both condemns and protects us.
Tellingly, after the sin of the Calf, we learn we must redeem a first-born donkey. If we fail to do so, we are commanded to axe the back of the donkey’s neck. We are the donkey, the most stiff-necked of animals. If we do not redeem ourselves, then we serve no purpose and our necks should be severed.
We are the donkey, for both good and bad.
When Moshe argues that he has not taken one donkey from us, I think he is arguing that he has protected the donkey within us. He does not want us replaced. He wants us, with all our inbuilt shortcomings, to retain our essence.
Moshe fears that Korach and his men of name will not stand up for the imperfect people that we are. He fears that Korach will allow us to be replaced by something new and better – by something fundamentally different.
Moshe fought to have us improve ourselves in a million different ways – from Mitzvot (commandments) to blessings and curses. But when anybody threatens to replace us, Moshe plays the role of the protective mother – expressing his love for our flawed people and condemning those who would challenge our stiff-necked essence.
As we look back over the past 3,000 years, we can see a Jewish people who are small and weak and limited in so many ways. Our history is one of pain and near annihilation punctuated by brief periods of joy and success. Again and again, we have failed to hear G-d or see His miracles. The spiritual blood that pumps through our people does so imperfectly. We are ostracized by others and tortured by our own self-doubt. Even after 3,000 years of therapy, we are a deeply imperfect people.
We suffer from everything that Ethan suffers from.
But this is who we are. And it is only within that history, and it is only within the context of those fundamental challenges, that we can remain to carry out our destiny as the Children of Israel.
It is our obligation to overcome our challenges. But it is our obligation to overcome them, not to eliminate them. To do otherwise would be to erase the essence of our people.
May we see the coming of Moshiach speedily in our days.
p.s. I do not have a child who has Down Syndrome and even if I did, I do not think there would be a right response to the use of something such as TGRT. The appropriateness of even fictional interventions is as varied as the children, and parents, involved. I’m just using this one fictional case as an illustration of the challenges of human identity and suffering.
Image: By Vanellus Foto [GFDL (http://www.gnu.org/copyleft/fdl.html)