Poet • Educator
Thank you for visiting my blog! I write on many topics and your comments are always welcome.
What to do when your kid(s) is driving you crazy and you are doing your best to be the “good enough” mom and take care of her needs?
This picture is worth more words than I can possibly string together. And the best part? Looking at it reminded me that it was taken by my kid, and that there are better moments. It’s good to remember, we all need a break..
You know those 2 am post traumatic stress moments? You know, when the “worst case scenarios” come out of their closet, throw open all the tidy drawers you kept closed in the light of day, strewing the folded ‘what ifs’ and sullying the newly laundered, ‘maybe we’re past the worst’?
Last week I was this basket case, wondering if the physical therapy my daughter was now engaged in to help strengthen her muscles, was doing damage rather than good. She had come back from an appointment earlier in the day complaining about how sore she felt. Usually, sore muscles are a sign of pushing beyond one’s comfort level or norm. But in the recent past, too much stress on her physically (trying out a new sport) had most likely led to a relapse in her illness. Now awake and thoroughly surrounded by those guilt tripping needlers in my mind, I was giving in to my fear.
How did I not make myself more anxious than I already felt?
I had to get out of bed so as not to wake my husband, find my notebook and write down those fears. Also, I wrote down the facts of what had happened that day and in so doing remembered what her physical therapist had told me about how long she might be sore. 3 days he said, (and he was right), but I had to live through those days and see for myself, all the while listening to her “ow’s” and needs for neck or back massages, (which I was glad to accommodate). Each day the pain subsided a bit and I kept this, and my 7 years of experience, as my mantra.
Writing has been one of the most important things I’ve been able to do when I can’t do much else. I was able to go back to bed and sleep. And in the morning I went to look for a poem I remembered by a woman named Anne Harrington. The opening stanza is piled like a stack of laundry and reads:
Jammed/Crammed/Damned
Emotions piled in a corner
One on top of another
Stuffed in
Crammed
Jammed
Heaped high
Overlooked
Too busy to get to…
I could get to them, I just couldn’t make them behave until I could put them on paper.
Someday I hope to be stacked more like this: 
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..
A friend of mine, Kim Poston Miller, is the mother of two boys who both live with forms of Juvenile Arthritis. This is a similar, but somewhat different disease than Juvenile Myositis, but many of the same medications are used in treatment, steroids and methotrexate to name two. What is even more common are the sort of experiences we go through as parents of children with an inflammatory, autoimmune disease. Kim’s way of coping with her circumstances led her to write a book for parents called Living With Juvenile Arthritis: A Parent’s Guide and to maintain a blog.
She graciously asked me to write a short section for her book and has now included me in her blog. This recent blog post describes how I came to write and publish my newest chapbook, The Moth Eaten World, due out in May, by Finishing Line Press..