Saturday, February 18, 2017


Grammy & Turtle Girl, June 2016

Many of you know that my granddaughter, Georgia "Turtle Girl," has a rare genetic disorder called Adenylosuccinate Lyase Deficiency.  It's one of those recessive genes, which means that both her mom and dad have it - a real genetic fluke, as it has never showed up on either side of the family until now.  Turtle Girl will turn four next month on the 13th - hard to believe!  She's gotten long and leggy, growing out of her baby fat, but those curls are still just as amazing as ever, as is her wonderful smile.  She continues to battle seizures, and her hard-working mom travels all over the Tacoma/Seattle area every week, taking Turtle to PT, OT, vision and feeding therapy, neurologist appointments, regular pediatrician appointments, and of course, the ER visits when a respiratory virus hits, or some other issue arises.

In fact my daughter, Miranda, does all of Turtle's full-time care, 24/7/365, without too many breaks.  It's impossible for her to go back to work, so a few years ago we decided to start up an Etsy store called Turtle Girl Jewels, and sell the earrings, necklaces and bracelets that we each make at home.  Our style started out with lots of California Indian influences - abalone, dentalium, shell - and has grown to include semi-precious stones like amethyst, turquoise, lapis, garnet, aventurine, jasper, unakite, hematite, as well as fresh water pearls, coral, and of course, crystals and glass beads.  Recently I've been playing around with Krobo beads from Ghana, as well as brass pendants and beads from that area.  I'm also starting to bring in small "coin" pendants from one of my favorite artists, Andrew Thornton at Allegory Gallery.

Thanks to Turtle Girl Jewels supporters, we've been able to buy some adaptive equipment for Turtle, her special formula, pay a few bills, and in general, ease the financial crush of having a special needs child.  

Turtle in the Child-Rite chair purchased with Turtle Girl Jewels proceeds.

Over the summer of 2016, Turtle got very ill - what is just a virus to us is life-threatening for her little system - and spent a month at Seattle Children's Hospital.  It was a scary time, and I'm grateful that I was able to be there and help out for part of the time.  Turtle spent a lot of time on oxygen, having chest percussion to help her cough, sleeping, and dealing with the seizures that inevitably accompany fever and illness for her. 

She couldn't eat pureed foods or the bottles of high-calorie formula she usually gobbled, so she was on an IV and had to have a naso-gastro tube for feedings. 

When she finally recovered, her parents decided to go ahead with g-tube surgery so Turtle could stay hydrated and fed without having to go to the hospital during illnesses like this.  Although it took awhile, Turtle and her mom have now mastered the feeding pump and g-tube life - she's a brave "two-button" girl.

Turtle lives in Tacoma, and I live in SW Virgina - so between real visits, we stay in virtual touch via Skype and phone calls, and every once in awhile, I record myself reading stories and poems, or singing, to Turtle Girl.  (Her mom has sworn never to share these publicly.  I'm holding her to that!  The world does not need to hear me singing "Baby Beluga.")  Some nights when Turtle can't sleep, she'll listen to and watch her "Grammy videos" over and over.  We have a deep connection; I'm so glad she recognizes my voice, and that it calms her.

One of our Skype conversations.
Of course, to have those Skype conversations or play those videos, Turtle Girl needs a laptop or similar device (she also plays a few preschool games on it, watches her favorite Dora the Explorer, and Frozen, and listens to a lot of music).  For several years, she's had a Chromebook that has filled those need - and it's been through some amazing hospital stays, car trips and various traumas, including a cracked screen that Bob the IT guy at my university miraculously fixed.  This month, however, the Chromebook finally bit the dust.  Despite hours of following up on download fixes, and pursuing phone suppport with Chromebook's tech people, Miranda was unable to save it.  

This is a blow; Miranda uses the Chromebook for managing the Etsy store, printing off postage and receipts for TurtleGirlJewels, and also for research about Turtle's condition, adaptive equipment, treatments, on-line forms for doctor's visits and the huge amount of paperwork a special needs child's life generates. I'm keeping my eye on President's Day sales for a replacement, and we hope to raise about $250 through our Turtle Girl Jewels to fund that purchase.

Hence, this blog post!  Please take a look at our Etsy site, check out the pieces (lots of new stuff recently), and maybe make a purchase or two!  All proceeds go toward Turtle Girl's new laptop. 

Skyping with Grammy is good for both of us - who wouldn't want to see this beautiful face as often as possible?!

Mommy and Turtle Girl discuss important things . . .

Bye now!  See you soon! Come see us at  Turtle Girl Jewels!

Sunday, February 12, 2017

Real Story

Image may contain: 1 person, textartwork by Andrea Carlson

Real Story

I’m reading Susan Power’s Sacred Wilderness in a local cafĂ©,
as anonymous as possible in a small town on Saturday
when students crowd the tables with books and laptops,
and tourists drop by between Lee’s tomb and Jackson’s grave.

A silver-haired woman sits next to me at the crowded counter,
props up her Kindle, reads while picking at her blueberry scone
like a little chickadee looking for the best bits.  She eyes
Andrea Carlson’s “Bear Medicine” on the cover of my book;

she thinks I don’t notice.  I do.  I wait.  Finally, she says,
“Can I ask you about that book?” And I give her a bare synopsis.
Four women, lost sons, separation and healing.  Indigenous
literature, I say, of exquisite beauty.  I should have known

better.  “Oh, have you ever read a book called Jaguar Woman?
It was about Indian medicine.  The author’s name was Something
Andrews, I think.”  Without missing a beat, I provide that author’s
first name, outline the problematics of White Shamanism,

including economic colonization.  “You mean she’s fake?!”
The woman pulls back a little.  “Yep,” I say.  After a few more
awkward pleasantries, we return to our respective reading. 
I think to myself, if I were a good person, I’d ask what she’s reading.

If I were a really good person, I’d offer a reading list.  But some-
times in a small southern town, surrounded by Confederate
shrines and cadets in gray uniforms, hiding out from ICE raid
reports at home in California and down in Texas, from videos

of BIA officers beating an Indian woman who dares protest with
a #NODAPL sign, or a President who is re-writing the Constitution
in Tweets, or even just the arrogant email message from a student
blaming you for his own incompetence, well, sometimes

you want one hour, just one hour please, in the company of women
with names like Maryam, Gladys, Jigonsaseh, Ruby Two-Axe;
some days, I swear, you cannot give one more explanation, one more
lecture.  Some days you want what is sacred to stay sacred –

and this, this is one of those gorgeous, medicinal days.  Amen.

Deborah A. Miranda

Thursday, February 2, 2017

"The New Colossus" = "The New U.S.": a Redacted Poem

Sometimes called black-out or erasure poems, this process involves finding a "new" poem inside a pre-existing piece by covering up parts of the original poem; this "exposes" the new poem.  Here, I've used transparent bars so that the original poem may still be read, heightening the sense of loss and so that the violence to the original poem is, in a way, highlighted rather than hidden.

In this case, I have chosen to call "The New U.S." a "redacted" poem.  The definition of redact in current culture generally means to edit out sensitive or dangerous content (Merriam defines redact as "transitive verb. 1 : to put in writing : frame. 2 : to select or adapt (as by obscuring or removing sensitive information) for publication or release; broadly : edit. 3 : to obscure or remove (text) from a document prior to publication or release.)  Redaction is often associated with material released by the government.

It seems obvious to me that the welcoming embrace of Lady Liberty in Lazarus' poem has been redacted by current Trump administration political moves.