For so many years having a child with a disability was a stigma. For some it was shameful, if not for the parents themselves, then often for other family members. Friends disappeared and if families were lucky, they met others like themselves or kept their “real” friends who made room in their hearts and minds for those of us, who may be considered, “other”.
I want to introduce you to three women who all parent a child, or children, living with a disability, and/or chronic illness.
Kim Poston Miller has two boys, both of whom struggle with Juvenile Arthritis. She has a terrifically informative website and has written a book for parents about how to not only survive but how to thrive, living with children with juvenile arthritis. This resource is not only useful for her book, Living with Juvenile Arthritis, a book for parents of kids with JA, but it is great for any parent who has a child with a rheumatic disease (Juvenile Myositis and Lupus for example) or other chronic illness. She also provides resources for families and kids alike, on her site.
Jeneva Burroughs Stone is a gifted writer, essayist and poet. She blogs on two sites, Busily Seeking and Busily Seeking 2.0, about her life with her profoundly disabled son, typically developing daughter, husband and their lives, including their search and eventual finding of, her son’s diagnosis. Jeneva also writes about larger social and political issues that effect healthcare and life with caretaking her son. In her words about how receiving a diagnosis effected their family after 14 years of not knowing she says:
“…not only diagnosis created turbulence (I guess you need to ask yourself how you feel about it, or that becomes a topic of conversation because nobody really seems to know how to respond when you say, hey, I got a diagnosis for my kid after 14 years–we live in a casually therapeutic society), but also changing work situations for both my husband and myself, uncertainties about health insurance both as a result of transition and the question marks of ObamaCare, Robert’s first year of high school, starting a Medicaid waiver with overnight nursing for the first time–and that was just the fall.”
My newest acquaintance, one I’ve really only “met” via Facebook, is Elizabeth Aquino. (To be completely honest, I’ve not actually shaken hands or seen the other women face to face, but I have corresponded with them more extensively and have spoken on the phone with Kim.) Elizabeth’s website, a moon, worn as if it had been a shell, is also a wonderful mixture of excellent writing, disability issues and soul sustenance. She says, “I love poetry and discourse and gallows humor. I like to say that reading voraciously has been the only constant in my life. I am a fierce advocate for my daughter who has a severe seizure disorder of unknown origin, as well as for all special needs children. This is a place where poetry, politics, parenting, and disability intersect.”
I hope you will take time to read these women’s words. Leave them messages, it is one of the few ways caretakers of children with chronic health issues get social interaction. I also hope reading them will expand your view of caretaking in the 21st century..