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Focus on our Feedback
C/O Spirit! Magazine
20 Robert Pitt Drive, Suite 214 Monsey, NY 10952
or fax to 1.845.425.7853,
email editor@spiritmag.org

Dear Editor,

I love your magazine. Thank you for all your effort in producing it. I am a grandmother of a brain-damaged child on life support. I would love to see articles and grandparents notes on these situations.

Thanks again.
B. L.

Dear Editors,

Thanks for the information on Make-a- wish. We never knew this concept existed and we wasted no time in contacting the organization for our child. Rivkah is developmentally delayed in all her gross motor skills, as well as in chronic renal failure; she is dependant on dialysis. Make a wish was unreal, and within 2 weeks we had wish volunteers over to our house to see what Rivkah’s wish was. She asked for a trip to Disney with the entire family and is scheduled to go at the end of August. It’s thanks to your magazine that we are given this opportunity.

I would appreciate it if you could include different resources in future issues, as parents don’t know what’s out there for them.

Z. H. via email

Dear Spirit!

We had recently been contacted by a local agency regarding becoming a family care provider for a special needs child. We’d been agonizing over this decision for many sleepless nights. I walked into our local Judaica store and saw a bright colored magazine that caught my eye. I had never seen the Spirit! Magazine before, the boy on the cover looked familiar so I picked it up to see the feature story: Give and Get – The unexpected Blessings of Being a Foster Parent (Volume 5, number 2). I have to say this was the article that helped us make this very life-altering decision. I am happy to say that we have taken in an adorable four-month-old child with Down Syndrome. Thanks for this excellent resource for the special needs community.

Mr. and Mrs. Weisz

Dear Editors,

I was happy to see the article on “Bubby Support Network” by Miriam Liebermann. I wish you lots of luck in this endeavor. I think all grandparents of children with special needs need to attend such a group at one time or another. Perhaps when grandparents have support, they will be able to be there for their children in the right way.

Now, for the million-dollar question… How do I get my mother-in-law to attend???.

Fraidy P.

I read your letter in the Spirit! summer issue regarding sleep problems. My one-year-old son was born with a condition called atelencephaly and he also has problems falling asleep. I found, after trying many techniques, including melatonin and risperdal, that a combination of risperdal and klonopin helps him fall asleep and stay asleep.

Good luck!
Esty Israel

Dear Editors,

I really appreciate the article “Listening to Siblings of Children with Special Needs”. The advice to parents was down to earth, practical, and very informative. It was helpful that examples were given by siblings of special needs children. As an adult sibling of a disabled child, AND the parent of a baby with a metabolic disorder, it was a very helpful article. Thanks for the information and inspiration you constantly provide.

Susan T.
Flemington, NJ

The article “Liam’s Journey” (fall 2007) reminded me of a situation that made our family appreciate our special needs sibling. Yerachmiel was 7 years old, diagnosed with hydrocephalus and had many shunt revisions over the years, which caused severe behavioral issues and developmental delays. Being one of eight children, it was very difficult to juggle raising our family, Yerachmiel’s special needs, and working to support our family. Needless to say, our other children greatly resented helping with Yerachmiel. They were embarrassed by his outbursts, and angry about the havoc in our home.

One day, Yerachmiel came home from school vomiting incessantly. A visit to the doctor and subsequent testing resulted in another shunt revision. This time, however, we ran into serious complications on the operating table. Yerachmiel ended up on a respirator for two weeks, trached, and doctors could not predict brain damage, if any, to what extent he will be impaired.

The tefillos and tears that my family shed those two weeks are indescribable. Those weeks in the hospital made us appreciate the noise and havoc Yerachmiel wrought when he was home. How we hoped he would tantrum just one more time.

Baruch Hashem, after months of therapy and medical intervention, we brought our tzaddik home. The change in our home, as we appreciate his being, is unreal. It’s a shame we had to almost lose him in order to appreciate what we have.

Nechama B.
London, UK

Dear Zahava L. (Author of Living with the Unknown (Fall 2007)

This article brought tears to my eyes, as I too, have a child with an undiagnosed disorder. The child you describe sounds just like my son. I would love to get in contact with you and hear about the specialists that finally made the diagnosis for your child. Your article gave me hope that we might too find a diagnosis for our child some day.

Please contact me via Spirit! Magazine.

E.S.
Passaic, NJ

Dear Editors of Spirit!

I found the Bubby Support Network an amazing undertaking!! I’m not a bubby of a special need child, but I am a mother. And part of our being able to parent a disabled child is the importance of parental support. To all grandparents out there: Please--- attend support groups, talk to other Bubbies in your situation, and consult with professionals how you can best support your children and grandchildren.

Thank you Miriam Lieberman and Anna Kest for undertaking this very important program!

Chaya S.
Brooklyn, NY

Thanks for including the wish foundation list. (Summer 2007) This list has been helpful in giving us information about a wish for our daughter. Make a wish made her dream come true by providing the entire family with a trip to Disney World. It’s been heaven sent! Shaindel absolutely glowed for a full week as every tiny detail was taken care of. They were amazing, as they arranged her medical supplies to be delivered in Orlando, transportation by limo to and from the airport, and even gave her spending money for her trip. I honestly never even knew this concept exists. Please include in future issues more informational resources. For those of us that are uninformed, this is heaven sent!

Rachelli M.
New Hemstead, NY

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