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Dear Editor,

Thanks for a wonderful magazine. I look forward to each and every issue, and only wish it would come out monthly. My entire family takes apart every article like a piece of gemarah.

I would like to comment on the article written by Nancy Silberman Zweibach, MA. (Volume 5, number 3) The line she wrote, “Remember Nancy, you were here first; he has to fit into your world.”

These few words are the smartest words I’ve ever read! Every obstacle that’s come my way with my disabled child this month, I keep thinking over and over again how, “I come first, and he has to fit into my world” and that I must tend to my needs as well.

My house has become a calmer environment since I’ve realized I’m a person too. Parents should internalize her message – it’s not selfish, it’s the only way it can work long term without us moms burning out.

Thank you. Thank you. Thank you.
Sh. H.

Dear Editor,

Thanks so much for including the article Give and Get by Libi Astaire. (Volume 5, number 2)

The article has hit home in a big way. Seven years ago I placed my child at birth. Gabi was born with multiple disabilities, and due to our family dynamics, and my own medical health it was impossible to bring her home. At the guidance and advice of our Rav we placed our child through a Jewish agency in our state. I don’t sleep at night because of the guilt and worry that the family that took my child didn’t just do it for the money. I still don’t have the piece of mind I have worked so hard all these years to obtain. I would love to hear from other parents that have given up their child for adoption or foster care, if visiting and having contact with the child has brought peace, or if it was emotionally more difficult. From foster parents, I would like to hear if it is better or harder when biological parents are involved.

To all those foster parents out there: Kol Hakovod to you! For us, it saved our marriage, my health, and has prevented my child from going to a non-jewish home.

Thanks for a most inspiring magazine. Keep them coming!

Anonymous 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 need to comment on the article HIPPA laws by Sara Leiner (Volume 5, issue 2)

The author has raised an important topic, which has in no way been addressed regarding the HIPPA law. She’s right that all it has done is create more paperwork and documentation. To be honest, I don’t ask for many services which my child would be entitled to, because of the lack of confidentiality between so many of the providers.

If only doctors, therapists and others would actually get fined if they breach the HIPPA law, there might be some progress at that end.

Sharon F.

Dear Mindy,

(Re: Mountain Climbers – Looking Up, Volume 5, issue 2)

I read your article over and over and cried each and every time. How I can relate to every part of your well-written article! Thanks, [Author] Malky Feig!

My first-born was diagnosed with cystic fibrosis at four months of age. I too, went through the years of secret-keeping, hiding her condition, and hiding every medication and piece of equipment. I remember my in-laws coming for a visit and my daughter needing oxygen and IV medication at that time. We claimed the baby had something contagious in case my mother-in-law offered to hold the baby and noticed the IV port. We unhooked her oxygen to bring her out of her room every so often and as soon as she gasped for breath I ran up to “just diaper her” and “put her back to bed.” After an hour I was exhausted just over the hide and seek situation. I didn’t learn. I did this shpiel over and over again at different occasions with different people. We fought our battle alone and struggled through years of multiple hospitalizations in hiding. I have lost many friends due to my always being ‘unavailable’ for them without explanation.

When my daughter turned twelve and wanted to go to camp, I realized I had to network with other moms in similar situations to figure out how to go about it. It was then that I asked my pediatrician to help me find another mom to talk to. She gave me the phone number of an unbelievable adult with CF. I contacted this amazing woman (she has her own healthy child B”H) who explained to me that her biggest difficulty growing up was not her CF, but the fact that her parents hid her condition and didn’t allow her to talk about it. They never allowed her to have visitors in the hospital and denied her the support she would’ve gotten from her friends and family. (Her own married siblings weren’t let in on the fact that she had a serious condition). She begged me not to do the same to my daughter. I spoke to my Rav who explained that shidduchim are bashert and that I should listen to the young adult that was ‘putting me in place.’ It was then that I was able to accept my daughter’s situation. I started networking with a wonderful group of moms in the same situation. I not only received emotional support, I also learned about the latest medical advances from parents who have children older than mine and had ‘been there, done that’.

There’s nothing like learning from parents in the same situation. No doctor or therapist can give the advice a parent or affected person can. Take it from me please. Go out there. No, don’t advertise your child’s situation, but seek the support for you and your husband. Seek the support out there for your affected children, and seek support for their siblings. In the society we live in today, where there is so much support available, it’s a shame to be in your own shell, fighting this difficult battle alone.

May Hakodosh Baruch Hu give you koach, and may you children have a refuah shelaima!

Heart to heart,
A Mom

Thank you Tziri Frank for your amazing, humorous articles. Keep them coming!!
May we all find humor in raising our special needs children.

Dear Spirit and Sara Chaitovsky, (Volume 5, issue 1)

Thanks so much for your article. As a bubby myself, I know just where you are coming from. It was great to see an article from someone in our league; the challenge is so much different when you are juggling so many different roles. My son was born when I was 48 and had six grandchildren. He has Down Syndrome but also had a host of other medical issues, which required surgeries. During that time I had two new grandchildren and sure understood the line “The delicate art of juggling responsibilities.” It was a delicate decision to either be home with my kimpeturin first-time-mom daughter, or be in the hospital with my Down Syndrome child struggling for his life. It continues to be a challenge but the joy he brings our family is worth the struggle. May all our children and einiklach not judge our decisions and know that we love all of our children unconditionally.

Grandma Anon

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