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.|
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.|
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!|