By COLlive reporter
“When I had my daughter, Nechama Roza, it was as if she was born with little tags attached to her that said things like: lazy, stubborn, heart condition, low functioning, high functioning, tongue thrust, mental retardation, slow, low muscle tone, happy, social, overweight and on and on.”
That is how Alisheva Givre, a member of the Chabad community in Baltimore, MD, begins to describe life with her daughter Rosie who was born with Down syndrome.
Speaking to Nshei Chabad Newsletter, a periodical for Lubavitch women worldwide, Sheva Givre says that while her daughter is now 3-years-old, “these statements, these generalizations, have not budged. They sit there like a weight on my shoulder, making me second-guess my daughter all the time.”
“Let’s pretend that the medical world has discovered a genetic marker, which indicates that children born with brown hair and blue eyes are likely to be more aggressive,” she suggests in an article part of a 16-page supplement on Down syndrome.
“So you have just given birth to a beautiful baby boy and the doctor walks over to you and says, ‘Your son is perfectly healthy, but I need you to know that it looks like he may have brown hair and blue eyes. Here are some pamphlets on aggression, and a social worker will be in shortly to speak with you.’
“You look down at your little one and you can’t see the striking beauty of the brown hair and blue eyes anymore. You can’t swim in the pools of blue looking up at you. All you can do is worry. How will he go to school? Will he ever marry? Will he hold down a job? Your moment was taken away, all because of a generalization.
“To top it off, everyone else will see his physical appearance and associate it with aggression. Welcome to the world, little one, you are now a statistic.”
Her upbeat outlook on life (and her stunning photographs), which she openly showcases on her blog My Shtub, has been an inspiration for many in the Orthodox Jewish community in Maryland and beyond.
Nshei Newsletter’s associate editor Chaya Shuchat says the first eight pages of the supplement will appear in the new Tammuz issue, and the second eight, in the Tishrei issue.
Shuchat says the articles discuss “what it is like to have a child with Down syndrome; what are the best and worst pieces of advice; what those on the sidelines should and should not say and do; and what the future likely holds for adults with Down syndrome.”
Additional articles in the Tammuz 5773 issue:
• The medically inexplicable recovery of Gali Aminoff, who fell asleep in her stroller in the beating sun at the pool, and what happened to her parents Jonathan and Charlene Aminoff as a result of this traumatic event.
• When Rabbi Manis Friedman was a young father and taking his children for a ride in the car, he wouldn’t turn on the music tapes they wanted. Why not?
• The advice the Rebbe gave to a bride who got into a fight with the groom over whether to have mixed dancing at their wedding.
• Dr. Deb Hirschhorn thought she had weeded out the “extra stuff” she owned when she moved from Florida to Woodmere, NY. That was before Hurricane Sandy hit.
• World-famous operatic tenor Jan Peerce was a Jew who loved the Rebbe. But when his wife Alice took on keeping Shabbos, his didn’t. It had to do with someone withholding his mail.
Buy the Tammuz issue in Crown Heights stores or subscribe at NsheiChabadNewsletter.com
I love the neshi news letters! Can’t wait to read this one!
GO ROSSIE!!!!
She is beautiful, just like my beautiful four-year-old sister similarly blessed with an extra chromosome.
That kid is absolutely gorgeous! I luv her!
‘what those on the sidelines should and should not do’
Important for all of us to know. I am always in awe of the parent’s of special needs children and often not certain what is right to say or do. Neshie Newsletter really touches on the big life issues.
You will have to read the article in its entirety to understand why defining people by there limitations and generalizing them is not ok.
If anyone is interested…Galia “Messages from Heaven” is a profound book written by a Jewish girl who was 100% brain damaged and her mother (through facilitated communication). Amazing perspective on special need children and the mission of Klal Yisrael today. A must read!
Can’t wait to read it. Yaasher koach for highlighting these very special people.
She is beautiful. Her limitations are just what society puts on her. Giver her wings and she will fly.
https://www.facebook.com/NsheiChabadNewsletter
every n’shei i read lately gets more and more beautiful. beautiful content and beautiful graphics.
Yasher Koach to the staff of the Nshei Newsletter!
Issue after issue the articles are always interesting and informative!
I need a n’shei NOW!!
can’t wait
Can’t wait to read the issue. The Nshei never leaves me wanting!
I am sorry to say I am disappointed with devotion of magazine to a segment of our humanity. To define a person by certain qualities seems to be moving backwards as the world moves closer to personhood.
.