To educate and teach your kids, and leave the rest to God, and He’ll take care of it. Framing the experience of raising a child with a disability in religious terms does not negate the challenges of that experience, as indicated by the other kinds of narratives these women told. Nor does every mother endorse religion as a means of support or way to understand her life. A few mothers even said that they were annoyed with hearing that they were “chosen.” Leslie, mother of a young son with FXS, said, “When somebody says, `Joey’s blessed to have you,’ I’m like…`So, what in my life have I done that I deserve this much work?'” Yet, even Leslie said that she had a sense of a larger cause for having FXS in her family, one that she attributed to “bad karma.” What Leslie articulated clearly in her narrative was the deep conflict that she felt between resenting the challenges placed on her and appreciating that her son “made me a better person.” Even for mothers who saw their challenges from a religious perspective, troubles and anxieties did not, of course, simply evaporate. Beth made that clear, saying that, in “real depressed times when I feel hurt I question God. I do ask Him, `Why did you do this to me?'” Yet, she concluded, “There are days that I thank Him. Because, I think, because of it, it makes me stronger.”NIH-PA Author Manuscript NIH-PA Author Manuscript NIH-PA Author ManuscriptDiscussionWomen in this study experienced their religious lives from the unique perspective of being a caregiver to a child with disabilities and, in turn, experienced disability through a religious lens. For some, the very act of narrating their stories of living with disability became a religious practice, as they found meaning in their children’s disabilities and in their roles as caregivers. Those mothers who provided religious narratives made reference to notions of purpose or blessing even as they spoke of their challenges and disappointments. These seemingly conflicting narratives, of the struggles of caring for a child with disabilities and of purpose and positive blessings, never canceled one another out. Rather, they existed side by side: for some mothers, merging almost seamlessly, and for others, vying for the narrative foreground. This juxtaposition is the crux of the reconciliation narrative; it brings difficulties and a sense of purpose into focus together, within a larger scheme of meaning. If anything, the multiplicity of stories women told reminds us of the importance of narratives for articulating, reinforcing, and even building a sense of identity. Narratives of illness and disability are particularly NSC309132 web important to their tellers because they speak from and about a position outside the mainstream, challenging both hearer and storyteller to understand an occurrence that may seem unfair or even inexplicable. In situations like the ones these caregivers face, constructing a religious perspective–piecing it AZD-8835MedChemExpress AZD-8835 together out of personal experience, institutional supports, and resources from friends and the larger culture–is anIntellect Dev Disabil. Author manuscript; available in PMC 2011 July 5.Michie and SkinnerPageeveryday activity that infuses even mundane and painful tasks with a sense of meaning and purpose.NIH-PA Author Manuscript NIH-PA Author Manuscript NIH-PA Author ManuscriptThere are limitations to this study. Mothers’ perspectives and experiences were the main focus of the study and we lacked data on fathers’ perspectives. Although we h.To educate and teach your kids, and leave the rest to God, and He’ll take care of it. Framing the experience of raising a child with a disability in religious terms does not negate the challenges of that experience, as indicated by the other kinds of narratives these women told. Nor does every mother endorse religion as a means of support or way to understand her life. A few mothers even said that they were annoyed with hearing that they were “chosen.” Leslie, mother of a young son with FXS, said, “When somebody says, `Joey’s blessed to have you,’ I’m like…`So, what in my life have I done that I deserve this much work?'” Yet, even Leslie said that she had a sense of a larger cause for having FXS in her family, one that she attributed to “bad karma.” What Leslie articulated clearly in her narrative was the deep conflict that she felt between resenting the challenges placed on her and appreciating that her son “made me a better person.” Even for mothers who saw their challenges from a religious perspective, troubles and anxieties did not, of course, simply evaporate. Beth made that clear, saying that, in “real depressed times when I feel hurt I question God. I do ask Him, `Why did you do this to me?'” Yet, she concluded, “There are days that I thank Him. Because, I think, because of it, it makes me stronger.”NIH-PA Author Manuscript NIH-PA Author Manuscript NIH-PA Author ManuscriptDiscussionWomen in this study experienced their religious lives from the unique perspective of being a caregiver to a child with disabilities and, in turn, experienced disability through a religious lens. For some, the very act of narrating their stories of living with disability became a religious practice, as they found meaning in their children’s disabilities and in their roles as caregivers. Those mothers who provided religious narratives made reference to notions of purpose or blessing even as they spoke of their challenges and disappointments. These seemingly conflicting narratives, of the struggles of caring for a child with disabilities and of purpose and positive blessings, never canceled one another out. Rather, they existed side by side: for some mothers, merging almost seamlessly, and for others, vying for the narrative foreground. This juxtaposition is the crux of the reconciliation narrative; it brings difficulties and a sense of purpose into focus together, within a larger scheme of meaning. If anything, the multiplicity of stories women told reminds us of the importance of narratives for articulating, reinforcing, and even building a sense of identity. Narratives of illness and disability are particularly important to their tellers because they speak from and about a position outside the mainstream, challenging both hearer and storyteller to understand an occurrence that may seem unfair or even inexplicable. In situations like the ones these caregivers face, constructing a religious perspective–piecing it together out of personal experience, institutional supports, and resources from friends and the larger culture–is anIntellect Dev Disabil. Author manuscript; available in PMC 2011 July 5.Michie and SkinnerPageeveryday activity that infuses even mundane and painful tasks with a sense of meaning and purpose.NIH-PA Author Manuscript NIH-PA Author Manuscript NIH-PA Author ManuscriptThere are limitations to this study. Mothers’ perspectives and experiences were the main focus of the study and we lacked data on fathers’ perspectives. Although we h.
