Suzanne – Page 4

May 22, 2014 By Suzanne

The Healing Art of Poetry Reading

Seven kids from the workshop Teens Writing from the Heart of Illness & Healing read a selection of their poems the other night to crowd of parents, friends, community members, medical doctors and staff at Odessa Brown Children’s Clinic in Seattle. They read with power and conviction and wowed everyone in attendance. Parents were surprised at the strength and insightfulness of their words, at the deep emotional clarity and risk-taking. The audience was supportive and appreciative and I think the teens themselves were proud and maybe amazed, at the effect their words had.

Here are a few excerpts from their work:

from Lost

I’m lost in my mind spinning around.

I’m lost in my memories still to be found.

I’m lost in my heart deep inside.

I’m lost in my smile so sweet and kind.

I’m lost in my past I’m lost in my present.

(Elijah Jones)

Where I’m from smells of fresh-baked bread

and rosemary rubbed between

warm hands.

I’m from dancing like drunk people

on the altar platform

twirling through

Christ is born

and Christ is risen

from Rejoice! and the corners of creation.

I’m from the perfect

is the enemy of the good

and good enough

is never really good enough….

(Kat Santarelli)

from Sickle Cell

…Constantly in hospitals accompanied by televisions and books

as best friends

tears became my voice, fear was my only choice

at the age of eight.

I was given opportunities to only be turned down

as the pain arised and the devil tattooed the word, “demise.”

my life had reached it’s point…

(Laelah Ndifon)

You can find the full body of their work in the chapbook Based on a True Story: Just Beyond the Gate, available through the Online Store.

March 19, 2014 By Suzanne

What to do when you are steamed

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..

March 10, 2014 By Suzanne

What to do When the Closets Open

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:

February 25, 2014 By Suzanne

Finding common ground: Writers & Parents of kids with chronic illness

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..