Welcome to Spirit Magazine

Fall 2008 Vol 7 / No. 1

Yedei Chesed is a contract agency certified by the New York State Office of Mental Retardation and Developmental Disabilities.

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Dear Editor,

I have enjoyed reading the past few issues of Spirit! Magazine and I must say that most of the articles are inspiring, uplifting and cause me to stop, think and do some introspection.

It was therefore with great dismay that I read “Painful Questions” (Spring 2006). I, too, have dealt with a seriously ill child and I certainly can empathize with the author that there are many painful, thoughtless questions that people should not ask. One must control their curiosity and think not twice, but three times before asking a question pertaining to one’s illness, handicap or medical condition.

When my daughter was undergoing medical treatment, I would cringe every time a volunteer would enter the waiting room, because most often, I was asked my name, neighborhood, and so on. It was usually innocent enough, but I couldn’t help but think that my family would be the topic of the dinner/telephone conversation, “Nebach, do you know who I met in the oncology ward today…”

I was also worried about assumptions. My child was too weak to open her eyes, so would people presume she was asleep, or maybe deaf? I would be asked, “So, where does she have it?”

All the wonderful organizations that our community is so blessed with, do an invaluable service. We appreciate their work tremendously, but their volunteers should be taught that confidentiality is a MUST and chessed, a good word, a hot meal and medical advice do not have to go hand-in-hand with prying questions.

On the other hand, I admit that we, who are overstressed, overtaxed, overtired and underfed, must realize that sometimes we do overreact and become overly sensitive. We can also lash out unreasonably in our counter attacks.

I feel the author could have dealt more kindly with her sister-in-law by inviting her over politely and sitting down with her, explaining each point she made in her eloquent article with softness and patience. The fact that she never got along with her sister-in-law and had previous spats with her does not justify the mean-spirited behavior she describes in the article, and she should not have been allowed to vent her negative feelings in Spirit! Magazine.

I agree that her sister-in-law may have been insensitive, but we should never allow loshon horah, sinah and malice to overtake us. To state that she “will send her a copy of this article” is really wrong, and I hope somebody stopped her from doing such a thing. Spirit! should not be a forum to spew loshon horah, anger and vengeance at anyone. Again, the author does bring up a valid point about people asking painful questions, and this issue should be addressed to well-meaning albeit impulsive people, but it should be done gently, softly and with goodness. Because underneath it all, that’s what Klal Yisroel is about.

Tziporah R.
Monsey NY

Editors note: The author of Painful Questions changed all identifying details so that her article would not be loshon horah. The article was written to convey an important message so that other parents should not have to go through the agony this writer has experienced.

Dear Editor,

As usual, I really enjoy Spirit! Magazine. I find it informative, interesting, and get lots of chizuk from moms in similar situations.

Lisa Shapero’s article, “Painful Questions,” struck a chord in my heart. I, too, am a victim of painful questions time and time again.

When my son was diagnosed with a genetic syndrome, we got countless phone calls from relatives around the world--all concerned about their future as well as their children’s.

We did not have a gene identified for his syndrome at that time, and we couldn’t even offer genetic testing options for family members. It was painful enough for us to have to make life-altering decisions regarding our immediate family’s future. But to deal with the myriad insensitive phone calls we received was too much to bear.

I’m sorry that you, too, had to go through this. Thanks for bringing this very important message across.

Sarah D.

Dear Spirit!,

I read your last issue with great interest. I paused at the article “Painful Questions,” by Lisa Shapero, and I would like to give your readers the other side of the story.

My daughter married a very fine boy from a wonderful family. When we went into the shidduch, we were told that the family has a child in a chronic care facility with an unknown disorder. When we asked what the disorder was, we were given very vague details, and whenever we inquired, we were given evasive answers, told that the doctors don’t know much, and so on. None of my machatenista’s sisters, sisters-in-law, friends, and neighbors could clue us in to the details, because the information was never shared with them, and the subject was considered taboo.

11 months after the wedding, my daughter gave birth to a very ill child.

It was then that her in-laws “admitted” to her that their child has a rare genetic disorder and that the newborn should be tested for the same disease. After meeting with geneticists and rabbonim, we were informed that this specific disease has to have two carriers, which can be tested for easily before a shidduch takes place. These parents did a huge injustice to their son and to their extended family by not sharing the details. They could have spared so much pain and suffering. We later found out that a niece had an affected child recently as well.

As much as the in-laws pushed aside any painful questions, they would’ve spared the pain they’re living with now, watching their grandchild and niece suffer. In situations where diseases can be tested, it is important to face those painful questions and deal with them appropriately.

On the same note, I understand Mrs. Shapero’s pain and I hope she’s resolved the issues with her sister-in-law. At the end of the day, there’s no one like family!

Anonymous

Editor’s note: As explained in Mrs. Shapero’s article, her child’s condition was most likely the result of a spontaneous mutation and not a foreseeable and preventable genetic disorder.