As a volunteer in our NGO, you have no doubt perceived that the mothers of the sick children are usually the primary caregivers, and often the only ones. The Palestinian children whom we bring to Israel for treatment have been ill with serious and chronic diseases for many years; many have suffered since birth. The residences of the families are often distant from the hospitals. They must travel considerable distances to reach a checkpoint and then continue to a hospital. Traveling back and forth together with lengthy treatments involves long days. Children who require dialysis come to the hospital anywhere from three to six times a week, usually accompanied by their mothers. And these mothers are simply exhausted due to the heavy workload involved in carrying for a sick child while continuing to function as a mom for the other children at home.
Humans without Borders decided to provide a bit of support to some of these mothers who spend their days at the Shaarei Zedek Medical Center. We organized a workshop for them so they could talk about their roles in the family and their very special circumstances. The workshop was moderated by Susan Abu-Wassal, from the “Women and their Bodies” organization and was also attended by two social workers from the hospital. We held two 2-hour sessions on 27 August, attended six women, and on 1 September in which 15 women participated. Each woman received a book in Arabic dealing with women's health, published by “Women and their Bodies”.
These meetings were held while the children were undergoing dialysis. Before the first meeting the women were quite hesitant about attending and expressed some concern about the implications of such an encounter. Indeed only six women came to this first get-together. The second meeting was attended by 15 women, probably because they heard about the success of the first session.
At these gatherings, the women talked about the loneliness they experienced as mothers of very sick children. Dedicating most of their time to sick children causes a disconnection from the extended family and their neighbors.
“I could not celebrate the holiday; we were unable to visit the family.” “I have no one to rely on; the family does not appreciate my situation.” I simply stopped trying to talk to my neighbors about our circumstances.” “The family is no longer interested in listening.”
The women repeatedly stated that their lives center on a deep concern for the welfare of their sick children (and some of them have more than one child requiring treatment). They feel that no one really understands their situations, sometimes not even their husbands. “I suffer emotionally. He (the husband) does not understand my efforts. He doesn’t help at all.” “There are things that you cannot tell anyone, so I talk to myself.”
They conveyed the fact that concern for their children does not give them time to take care of themselves, or worry about their own health. “I have obligations that I must fulfill; I have no time for myself. I do not recall doing anything for myself, just taking care of a sick child.” “I'm afraid to go to the doctor, maybe I will find out that I am sick.”
The workshop facilitator spoke at length about the importance of giving themselves some prime time and taking care of their own health. The Women expressed a sense of relief just from the opportunity to share their feelings with other mothers in similar situations, and the knowledge that they are not alone. They openly talked about how to ease their daily lives and encouraged each other.
These two sessions clearly showed the pressing need of the mothers to meet and talk about practical matters and their feelings. The Social Services staff at the hospital decided to establish a monthly group meeting in order to allow mothers to have a place where they can openly discuss the complexity of their lives as mothers of sick children.
Funding permitting, Humans without Borders will consider organizing more workshops of this nature in other medical centers with which we are in contact.
Alona Baidani Auerbach
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