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August 29, 2014 / 3 Elul, 5774
At a Glance

Posts Tagged ‘Down Syndrome’

Reflections From A Yachad Parent

Wednesday, October 26th, 2011

“Hi Tammy. It’s Penina. It was so nice meeting you and spending Shabbos with you guys last week.  It was such an amazing weekend. I wish we were going back on the shabbaton this coming Shabbos!” This was the message I received on my answering machine the Friday after the Yachad Family Shabbaton. It was from one of the friends I had made over the weekend, a mother of a special-needs child, just like myself. When I heard this message, it put a smile on my face. It also made me want to go on another shabbaton.

Every spring, Yachad, a division of the OU, runs a retreat for families of children with special-needs. As a mother of Tova, a thirteen year-old with Down Syndrome and four other children B”H, I have had to juggle the needs of my special-needs child with the needs of the rest of my family. There have been family outings where I’ve had a shadow come along with us; times I’ve left my daughter with others, and times where we’ve just stayed home.  The amazing thing about the Yachad Family Shabbaton is that there is nothing to juggle. You just show up and Yachad has orchestrated everything.

This year, when we arrived at the Hudson Valley Resort, Tova’s advisor came right up to us and introduced herself.  From that moment, I knew that Tova would be well taken care of for the duration of the weekend. From that point on, I knew Tova would always have a session to go to or an activity to participate in.  For a parent of a special-needs child, this is essential. Even if you have some respite on Shabbos, unstructured time can seem especially long for a child with special needs. This freedom allowed my husband, my other children, and me to use the hotel facilities and get ready for Shabbos with the comfort of knowing that Tova was in good hands.

Sometimes we don’t realize how much our other children need extra attention and special treats.  Yachad understands this and hence provides these things for all of my children on the Family Shabbaton. There were sessions and games for Tova, day camp for my younger boys, sibling sessions for my sixteen year-old daughter, separate swimming times, ping-pong, and a magic show on Motzai Shabbos for everyone.

When we arrived on Friday, I felt like I had come home.  Every family spoke our language. They all had a child with special needs.  All the masks came off.  There was nothing to be self-conscious about. We were able to let our guard down, even if it was for just one weekend.  It was so moving to see how excited the Yachad members, our daughter included, were to be at this shabbaton. It was equally moving to enter the dining hall on Friday night and see so many families with children just like Tova.  More than 600 people came together to share and learn from one another. Thanks to Yachad, we were able to connect with each other in a way that would have otherwise been impossible.

At the Shabbos meals, Yachad sat us with different families so we would have an opportunity to meet a variety of people from a number of different places.  Families came from all over the New York/New Jersey area, but also from as far as Baltimore, Boston, Montreal and Chicago.  The zemiros resounding in the dining room truly enhanced the Shabbos meals.

Throughout the weekend there were multiple sessions offered that were both educational and inspirational.  One particular session was given by Dr. Karen Summar, a developmental pediatrician who specializes in children and adolescents with Down Syndrome and their behaviors.  As we sat in this workshop and heard other families describe challenges similar to ours, we truly felt understood.

Feminine Soul

Wednesday, August 18th, 2004

Dear Mrs. Weisberg,

I enjoy your column and was deeply touched by the “bittersweet” simcha at the bris of your friend’s Down Syndrome child that you wrote about several months ago. I especially was inspired by how you portrayed life: all human beings experience joy and sorrow in our lives, and we can find our love of Hashem even in the midst of our difficulties.

One life difficulty that particularly troubles me is how so mothers cope with the emotional and physical trauma of having a sick child. I have a friend whose baby was born with a serious heart defect. The mother was warned of this problem during the early stages of her pregnancy, and now the doctors have no hope for this child’s future. The mother spends every spare minute at the baby’s cribside. She, her husband and her several young children are suffering terribly. It makes me wonder how or why must these people cope with such problems?

Ruth


Dear Ruth,

Thank you for writing. I am touched by your sensitivity and caring for your friend.

We are taught that every child has a neshama, a special soul that descends to this world for its particular mission. Chassidic philosophy explains that “special children” have extremely high souls. So high, in fact, that when they descend to this world, their body cannot contain this high revelation. Consequently, the body – or the vessel if the neshama – “breaks.” This “breakage” can be manifested in a physical, emotional or developmental deformity. For this reason, some great Torah leaders would rise when a “special child” passed by – out of great respect for the elevated soul housed within this “broken” body.

This is all on a theoretical level, of course. It takes a unique and special individual to implement these ideas in the everyday reality of dealing with the myriad obligations faced in caring for a special needs child.

When I was growing up, I had a classmate whose sister was born late in her mother’s life and had many mental and physical problems. The family treated this sibling with the utmost of normalcy and took her with them to all programs or events without the slightest degree of embarrassment or discomfort.

This classmate once explained to us, in a rare moment of openness, how at first, it was difficult for her and her older sister – both extremely bright and talented girls – to accept their new sibling. “There were so many things that she needed. So many things that she was unable to do, so many deficiencies. It was difficult for us to see past her disability to the special neshama that she possessed.

“But over the years, we came to appreciate something incredible. We thought we were giving to her, but in truth, she gave to us so much more than we could ever fathom. She taught us the meaning of love - true, unconditional love. She loves us all so deeply, all the time. No matter what kind of day we had, or how exasperated and moody we become.

“And she taught us joy. She showed us how to be happy. Always to smile, despite the challenges or difficulties of life.”

I have another friend who had many misfortunes in her life – health issues, problems with parnassa (earning a livelihood) and a non-stop slew of hardships that kept on falling on her shoulders. When things finally seemed to be getting under control, this friend gave birth to a child. The newborn was born with several deformities.

I marvel every time I see this friend at the checkout counter of the grocery, walking her children in their strollers or taking them to the park. She has a continual smile on her face. Her demeanor is always positive – sincerely positive. She always has a nice word to say to everyone she meets and she’s genuinely concerned to ask how others are managing with the everyday issues of life!

These people – super mothers, sensitive family members with hearts of gold – are the unsung heroes and the inspiration to so many of us.

Chassidic teachings tell us these special children have special neshamas. It seems that this applies to their inspirational family members as well.

A few years later, I attended the bar mitvah of this same friend’s son. After many speeches, my friend explained, “Today is a momentous day for us, in that my son has reached his bar- mitzvah. But it also has significance for another reason. Today, my youngest sister has also turned bas- mitzvah. And to celebrate her special day, I would like to call her up to the podium to recite aloud a bracha.”

Her sister hobbled up to the podium. Her words were mispronounced and sounded almost like gibberish. She recited hamotzi, and as she concluded and we responded “amen” in unison, there wasn’t a dry eye in the reception hall.

When this same friend just a few months ago gave birth to her own Down Syndrome son, I wondered how she was coping, but I didn’t have the courage to call. Instead, I opted to buy her a card. I deliberated on what would be appropriate – a card congratulating and wishing mazal tov on such a happy occasion, or a condolence card wishing sympathy and strength and almost ignoring entirely that this was even a simcha.

Finally, I chose a card with a short poem saying something to the effect of how with every situation we confront in life we can choose to use the opportunity for growth for ourselves and those around us, who are undoubtedly watching us to see our reactions.

I then wrote a personal note saying how impressed I was with her talk years ago about her mother’s courage to have her sister, and what she and her siblings learned and gained from this special child.

I wished her mazal tov on the birth of her son and acknowledged that she must be feeling very torn at this very bittersweet simcha. “I’m not sure if I should write this at all, or whether this is the time to say this,” I concluded, “but I wanted you to know that I am sure that just as you used your sister’s birth as an opportunity to enrich your life and teach those around you how to face challenges successfully, that you will do the same with this special son of yours. You have been inspirational to so many of us and I am sure you will continue to be.”

And she, as well as the many other families you write about, continues to inspire us.

Chana Weisberg is the author of The Crown of Creation and The Feminine Soul. She is the dean of the Institute of Jewish Studies in Toronto and is a scholar in residence for www.askmoses.com. She is also a columnist for www.chabad.org’s Weekly Magazine. Rebbetzin Weisberg lectures regularly on issues relating to women, relationships and mysticism and welcomes your comments or inquiries at: weisberg@sympatico.ca

Printed from: http://www.jewishpress.com/sections/jewess-press/feminine-soul/2004/08/18/

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