Home Away From Home

by G. Gundle

18 years ago, our 3rd child was born 5 days before Rosh Hashana. Our daughter, Chaviva, had difficulty eating and sleeping and cried continuously. My husband and I barely slept as she required care all night long. At 6 months old, she stopped breathing and was rushed to the hospital.

2 months later, after a long-awaited MRI, we got her diagnosis and were thrust into the unfamiliar world of Special Needs. Up until that point, my only exposure to special needs was on Simchas Torah, when the young adults from the Jewish residential facility in Cape Town, would arrive at Shul, collect their chocolates, and promptly disappear for a year.

I did some research on my own (always a risky thing to do!) and was met with the worst case scenario. The situation seemed dire and I wondered how could I allow myself to become attached to a child who could leave us at any moment.

At that time, there were few special needs educational frameworks in Bet Shemesh and certainly no after-school services. At age 1, Chaviva started to attend Gan Meshi in Jerusalem where it took a staff of 8 to manage her.

Each morning, after yet another sleepless night, I would count down the minutes as I waited outside for her school van to arrive, and would literally dread the return of the van at 3 PM, due to the overwhelming stress of taking care a child who could not be pacified, while trying to care for my other children simultaneously. With no respite at all, Shabbos was always the hardest day of the week.

It was a very lonely time for us. My husband and I are by nature very private people who were reared to be self- sufficient and were used to putting our best foot forward. It was difficult to be faced with a challenge that set us apart from the rest of our community.

While we knew that everyone has struggles behind closed doors, our challenges with Chaviva were fully visible and I felt extremely exposed and vulnerable.

Chaviva defied her prognosis. The two year mark came and went and we made plans to move to a home with a ground level entrance as we were told that Chaviva might not ever walk.

However, by the age of 5 1/2 Chavi started to walk and at age 7, she started to eat regular food. By the time she was 10, in the absence of speech, Chaviva began to learn alternative ways of communicating.

Yet when Chaviva was around, home life was still stressful. It was difficult to do homework with my other children, spend time with my husband, attend a Kiddush or simcha and plan family outings, let alone a vacation.

Chaviva needed help with all “activities of daily living” in addition to constant supervision.

All of this changed 8 years ago, when a friend told me about a local organization, Ezrat Achim, which was running a Special Needs summer camp. For the first time, Chaviva went to camp like our other children. She loved it!

Today Chaviva attends Ezrat Achim programs literally every single day of the year.

We are awed by the all-encompassing service and the staff and volunteers who provide daily after school programs as well as programs on Erev Shabbos, Shabbos and Yom Tov, Chol Hamoed, even on Rosh Hashana and Yom Kippur.

Thanks to Ezrat Achim, we are no longer in a state of hypervigilance and have BH been able to transition out of survival mode, into a place where we can enjoy and nurture our family.

We now have enough breathing space to acknowledge and appreciate the multiple blessings that Chaviva brings to our family.

Chaviva has turned into a beautiful and fun loving, young adult and an integral part of our family, while we feel blessed to have become part of the greater Ezrat Achim Family led by Rav Kop.

Ezrat Achim provides a service which is unique and more comprehensive than any other program of its kind nationally and internationally.

In fact, people are moving to Bet Shemesh from other cities just so that their child can benefit from a service which offers thousands of hours of relief and respite to families challenged by special needs and is like a second home to so many children like Chaviva.

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