All About Oliver

A Sanfilippo Story by Grammy L…

The end of 2019 was cruel to my family as we feared in October and then learned positively in November that my grandson, Oliver, is suffering from an untreatable and fatal genetic disorder.


I have not been able to write about and post pictures of my life as a wandering gypsy until recently. For a long time I felt guilty finding joy in nature.

But then I think about  my precious love-love boy so full of life, laughter, and love! And I live vicariously for him, soaking up all the experiences I dream about sharing with him.

I know Oliver doesn’t want me to be sad. And he is unaware of his fate. But this hurts sooooo bad! Why, why does this have to happen to him? This is so unfair.


My 2 other sons support me, of course, and I love them and their families to the moon and back!

Andy lives in London and I have an almost 6-year-old grandson, Reuben I have yet to meet (along with his silly brother, Henry, and baby brother, Otto, and cousin Logan). I hope to meet Reuben sometime soon.

John lives in Austin with Olivia who is writing her PhD dissertation. They have a wedding date set for April 2021. Jeff and I are visiting them the end of this month.


So…. My wanderlust journaling of retiring into full-time RVing will continue, however, I need to share another journey in my life now too. This journey is a tribute to Oliver James Kelly whose love and laughter has already touched the hearts of so many, and whose life has and will continue to make us better and richer persons just for knowing him.

Meanwhile, please, please check out the Cure Sanfilippo Foundation website!

And if you have a Facebook account, which apparently everyone has except me, please follow foroliverstomorrow.com

Help us search for a cure for Oliver and his friends…

Thank you for supporting Oliver and his friends with your love and support and for helping us stay strong…


I will continue posting about Oliver. Writing helps calm me and keeps my mind busy. I need to share and remember all the silly, precious, and joyful moments our family has shared with our sweet boy and sassy Reagan so I can freshly imprint them in my mind and pull them up when I feel sad.

Meanwhile, we continue forging ahead thinking positive thoughts and enjoying every single moment even when we aren’t!

Under The Palm Trees

Out of the Sun (and in the Sun)

We’re having so much fun!


November 12th Volunteer Potluck Dinner

Outside of the Palm House…

Unexpected guests…

Wiley, the Coyote

A Tarantula Hawk…

Just so you know, tarantula hawks are the largest members of the spider wasp family of some 5,000-species strong that prey solely on spiders. And you guessed it, tarantula hawks prey upon the largest of all spiders, tarantulas. (sciencefriday.com) According to Justin O. Schmidt, author of The Sting of the Wild, “Stung by a tarantula hawk? The advice I give in speaking engagements is to lie down and scream. The pain is so debilitating and excruciating that the victim is at risk of further injury by tripping in a hole or over an object in the path and then falling onto a cactus or into a barbed-wire fence. Such is the sting pain that almost nobody can maintain normal coordination or cognitive control to prevent accidental injury. Screaming is satisfying and helps reduce attention to the pain of the sting.” (Yeppers, that’s just about the way our Preserve Manager, Ginny Short, explained it! Thank goodness this tarantula hawk was DOA.)


Thirsty Thursdays

We share some brewskis after “work” with Gregg, our neighbor and co-host, and Tyler, our aquatic biologist. Tyler is restoring McCallum pond to its natural state to provide the perfect refugium for pup fish.


Our Big and Little  Backyard

Sit back, relax, and enjoy as you scroll through the world we live in…

The Crescent Moon…

This summer I learned how to use the moon as a compass at one of the Summer Reading Programs in Port Orford sponsored by the library and organized by my good friend Cheryl, the Children’s and Teens’ Librarian.

Imagine a line connecting the endpoints of the crescent. Where this imaginary line projects to the horizon, points South. Therefore…

White-Crowned Sparrows identified through my binoculars… And yes, birdwatching is becoming a new hobby, but proving frustrating…

Cigar rings over Squaw Hill…

McCallum Trail and Moon Country…

Smoketree Ranch Trail…

Joshua Tree National Park in the distance…

A Cooper’s Hawk…

Approaching the Palm House Visitor Center from the Smoketree Ranch Trail…

Views from the parking lot…

The “Palm Monster from the Oasis Preserve”…


A White Christmas

On the lower elevations of the mountains…


The Stool Bus

The day the septic tank blew up…

These emoji are hilarious!


New Year’s Eve

Wiley the Coyote wishes us an “auld lang syne.”

And the year rides off into the sunset.

Farewell, 2019.

Sanfilippo Awareness Day

Every November 16th…

But in our family everyday is Sanfilippo Awareness Day.

curesanfilippofoundation.org

Yes, that’s my grandson, Oliver, who was just diagnosed with this degenerative syndrome. One out of 70,000 babies are born with a change in their DNA that causes a very important enzyme to be made improperly or not at all.

Because Oliver does not have this critical enzyme, his body cannot breakdown and recycle natural cellular waste. His cells become clogged with toxic levels of heparan sulfate.

While every cell in his body is affected by Sanfilippo Syndrome, his brain cells suffer the most. The effects on the brain become apparent between the ages of 2 and 6 and are displayed by speech problems, developmental delays, challenging behaviors, extreme hyperactivity, and poor sleep. Oliver is 4.

Imagine Alzheimer’s, but in children. Our precious little cutie boy will fade away and lose his skills and knowledge, eventually not able to talk, walk, and swallow.

Children with Sanfilippo Syndrome often pass away in their early teenage years.


This is my precious love-love boy.

curesanfilippofoundation.org

We just recently received confirmation about this devastating and relentless diagnosis. My daughter-in-law, Jen, sums up the feelings of our family the best. We are gutted! It is so difficult to write about this and wrap my head around how cruel life can be. My son, Brian, needs me to be strong for him, but I am barely holding on some days. My heart is shattered into a million tiny pieces. I ache. It hurts sooooooo bad! I can’t fix this! I don’t want to accept this! But I will and I do. Our family is strong. Our motto is… We got this (even though we don’t want to got this.) The good news is that my love-love gil-gil, Reagan, is NOT missing this enzyme. I have to be strong for her as well and make sure that she is a part of all this.


So… for now I am still a wandering gypsy but I will finally roll into Bexley, Ohio at some point and stop permanently. Luckily we are back in Thousand Palms, California, outside of Palm Springs, where an airport is only 20 minutes away. I plan on becoming a frequent flyer and frequent visitor of Oliver and his family.


You can follow Oliver’s Tomorrow on Facebook.

Learn more about Sanfilippo Syndrome by clicking on this link.


This is so difficult and emotional to write about!

“A Living Breathing Movie Set”

Pioneertown

About 40 miles away from Thousand Palms Oasis Preserve is a community built to resemble an Old West movie set.

google maps

To get there, we take Dillon Road to Highway 62, pass through Morongo Valley, and turn left on Pioneertown Road in the Yucca Valley before reaching the West entrance to Joshua Tree National Park.

We are in the High Desert and the scenery resembles Joshua Tree NP…

We drive past Mane Street and its 1880s Western movie set facades to explore the landscape.

A scattering of Joshua Trees…

The sun burns off the haze and the sky brightens into a sea of pure blue.

On our way back to Mane Street we park our little car to give our legs a little stretch.

And take pictures!

Golden Cholla takes center stage against a backdrop of rust- colored leftover blooms.

The rocks guard the hills.

A tiny pink flower hangs on from summer.

Piles of rocks look like the remnants of a castle or a once mighty fortress.

Embedded minerals swirl colorfully through the rocks.

A giant cairn formed by nature…

Foliage slips through the cracks.

The shaggy dupa mushroom, I mean the desert shaggy mane mushroom… 😂

More swirls, resembling cinnamon buns, iced with desert vegetation…

Oh the rocks, the glorious rocks! What stories they tell…

Pin Oak Bush…

Amazing scenery…

Mojave Yucca standing tall and proud…

Puffy pillows of tissue paper pods…

A pop of purple…

A Joshua Tree rests in peace.

Farewell, pin oak.

Farewell, leftover rust-colored blooms.

Farewell, cholla.

We head back to Mane Street, just over a few city blocks long, where only horse and foot traffic is allowed.

visitpioneertown.com


The Story of Pioneertown

Richard Dye, an American actor known professionally as Dick Curtis, dreamed of creating a live movie set, a functioning 1880s themed town where fellow actors, family, and friends could work and play.

en.m.wikipedia.org

He was looking for a place easily accessible from both Los Angeles and Palm Springs that would serve as a filming location, vacation destination, a residence for people working in the entertainment industry, and a permanent home to ranchers and desert lovers.

Shortly after sharing his dream for a living breathing movie set, he and 16 other investors, including Roy Rogers, Dale Evans, Russell “Lucky” Hayden (from the Hopalong Cassidy series), Frank McDonald (television director of many Westerns starring Roy Rogers and Gene Autry), Tommy Carr (actor and film director), Terry Frost (actor in numerous Western films), and Bud Abbott (straight man to Lou Costello) each contributed $500 to form a corporation. As a company, they purchased 32,000 acres of land that became known as Pioneertown in 1946. (visit pioneertown.com)

visitpioneertown.com

Dick Curtis’s original plan was to create a fully functioning Wild West town. Ranch sites with utilities and road access were available for $900 an acre. The first structures built were fully functioning businesses such as White’s Grocery Store, the Townhouse Motel, the Red Dog Saloon, the Golden Stallion Restaurant, Maggie’s Feed Barn, Nell’s Ice Cream Palace, Pioneertown Likker, the Klip N’ Kurl Beauty Shop, Pioneer Bowl, Trigger Bill’s Shooting Gallery, and the Pioneertown Gazette.

By 1948, however, the corporation voted to abandon its priority of community expansion in favor of catering to production companies. Dick Curtis resigned as president of the corporation. Immediately both land sales and productions plummeted, until Philip N. Krasne, the producer of the Cisco Kid series happened to travel through Pioneertown. He liked it so much that he signed a 25 year lease to the land.

During the 1940s and 1950s more than 50 films and serials were filmed in Pioneertown and over 200 productions were produced here. The Pioneertown Post Office is said to be the most photographed P.O. in the USA.

However, plans for a 40 acre lake, a golf course, airport, and shopping center were crushed due to the lack of safe drinking water.  Then, as the golden age of western films came to an end, so did the once abundant filming industry.

Today the town remains a fully functioning production set where movies, independent films, music videos, and commercials are filmed every month.  (visitpioneertown.com)


We “hoof and foot” our way along Mane Street…

The rustic, single story 20-room Pioneertown Motel, built in 1946 for movie stars of Old Western films, still stands. Gene Autry played poker until sunrise in Room 9!  

Updated with fire pits, hammocks, and an outdoor cantina, you can still, for $195 a night, “catch a meteor shower, happen upon a sold out show, dance under the stars, or simply pass time around a fire.” (pioneertown-motel.com)

Up close and personal with a Joshua Tree…

Creamy white flower clusters form at the tip of the branches from late February to late April. They dry into clumps of large seed pods, and when dry, the black seeds can be harvested and used to sprout new trees. Joshua trees are pollinated by the yucca moth while laying eggs inside the fertilized flower. (desertplants.org) So, now you know!

Fun, puns, and ambience…

Gary Suppes, a wood worker, designer, and furniture builder, grew up in Pico Rivera, California. In 1981 he moved to Pioneertown where he learned the art of saddlemaking. In 1989 he opened his own business. But the Sawtooth fire in 2007 burned his workshop to the ground. With the help of family and friends he rebuilt his business, Chaparossa Outfitters, on Mane Street in Pioneertown, designing and creating hand-crafted custom saddles and western tack. (pioneertown.wixsite.com)

A Saguaro Cactus…

Purple Beavertail Pricklypear Cactus…

Through the “eyes” of a mesquite…

A Chinaberry Tree…

According to gardeningknowhow.com, the chinaberry tree is native to Pakistan, India, Southeast Asia, and Australia. In the 1930s it was introduced to the United States as an ornamental darling of landscapers. Chinaberry trees are prized as shade trees. They grow between 30-50 feet tall and produce light yellow fruit drupes that are toxic to humans when eaten in quantity. Many birds, however, enjoy the intoxicating juicy pulp of the drupe. Because these trees spread easily, they are classified as an invasive tree.


Pappy and Harriet’s

What is now a legendary indie music venue and amazing restaurant, featuring mesquite-grilled concoctions, began as a cantina set for filming Hollywood Westerns well into the 1950s. In 1972 Francis and John Aleba opened the Cantina as a biker burrito bar.

When the Cantina closed in 1982, the Alebas’ daughter, Harriet, and her husband Claude “Pappy” Allen, reopened the burrito bar as Pappy & Harriet’s Pioneertown Palace.

They created a more family-friendly atmosphere that still attracted bikers. With Tex-Mex cuisine and live music featuring Pappy, Harriet, and their granddaughter Kristina, the restaurant became a local gathering place for an eclectic blend of folks. When Pappy died in 1994 family and friends flew in from all over to remember him and celebrate his life. Harriet sold the business to a family friend who gave it up after a few years. Then, in 2003, Robyn Celia and Linda Krantz from New York, fans of Pappy & Harriet’s, purchased the venue hoping to restore it to its days of good food, music, and a place where friends, family, and folks from all walks of life could gather under one roof.

Robyn and Linda have succeeded! Pappy & Harriet’s continues the tradition of live music, great barbecue, and good times in memory of Pappy and all those who came before him. (pappyandharriets.com)

On October 13, 2016 Paul McCartney performed here for an intimate audience of 300 in between his two scheduled appearances for the Coachella Music Fest at the Empire Polo Club in Indio.


Farewell, Pioneertown.

pioneertown.com

We return to our humble abode on Thousand Palms Oasis Preserve leaving behind Pioneertown and its lasting memories in the dust.

Happy trails to you!

This Is Now…

When we arrived back at Thousand Palms Oasis in the Coachella Valley Preserve on September 27th, this is what was happening under the palm trees…

Palm fruit started blooming.

Buddy and Bear were waiting for us.

And Gregg…

Sonoran Desert Spiny Lizard…

A rattlesnake dining on a Norwegian mouse…

Gregg and Tyler ride the new Preserve all-terrain work vehicle, the Kawasaki Mule.

Gregg’s son, Matt, hacks my iPhone to take a selfie with his Dad.

Matt’s girlfriend, Amanda, joins in…

Outside Tyler’s office/lab I snap this photo of dead palm trees. The one on the right is modeling the haystack look.

The Washingtonia Filifera, aka California Desert Fan Palm, displays its skirt and ripened palm fruit.

The palm grove surrounding Simone Pond…

The Indio Hills pushing upward between the Mission Creek Strand and Banning Strand of the San Andreas Fault…

A collared lizard…

The robins return!

This photo is dedicated to my grandson, Oliver, who shares the rareness of the arrival of these robins.

Spider webs captured in the morning light on the boardwalk…

A walk along the boardwalk wetlands…

A glorious morning sunrise painting the clouds pink and orange…

The long-eared owl returns to his perch on the palm trees along the boardwalk.

Nestled under the palm trees against the backdrop of the Indio Hills, lie our RV and Gregg’s trailer. You are looking at the San Andreas Fault, well, the best evidence of…


Hidden Palms tucked away…

No, water is not visible on the surface, but it lies 6-12 feet under the sand.

A scorched palm tree recovers its life because the crown of the tree has not been damaged.

We hike up onto a social trail on our way back from visiting Hidden Palms.

Beaver-tailed cactus…


Car Crash Canyon…

Pushawalla Palms…

Just look at the luscious palm fruit dripping down!

The Native Cahuilla ate the juicy fruit from the trees, mashed it into a pulp for fermentation, and ground it into flour.

Mineral-stained water trails show the evidence of water lying beneath the surface.

These straw-like tendrils reach down into the water source below to encourage the propagation of these indigenous California palm trees.

That Was Then….

When we left Thousand Palms Oasis in the Coachella Valley Preserve on May 1st, this is what was happening under the palm trees…

A Cooper’s Hawk starts hanging around on the power wires outside of our RV. We named him Coop.

 audubon.org


A Long-Eared Owl stares back on the boardwalk.


Ginny, our Preserve Manager, rescues a barn owl near the boardwalk…


Peter Cottontail, outside of our RV… He visits us every evening after all the cars and people leave the parking lot.


Leapin’ Lizards! These guys love the warmer temperatures and hot sand.

Where’s the rest of my tail?

A desert iguana…

Zebra-tailed lizard…

This one does push-ups.

More desert iguanas. They love munching on creosote bush leaves.

A desert spiny lizard…

Jeff finds a rare leopard lizard.


A rattlesnake slithers through our campground.

Very cool!


Caterpillars munch on Brown-Eyed Primrose…

… before they turn into a White-Lined Sphinx Moth…

butterfliesandmoths.org (courtesy of Gary Walton)

…that flutters like a humming bird.

   butterfliesandmoths.org


An Arizona Blister Beetle lunches on Lupine.


The last of the super-bloom…

Brittlebush on the Pushawalla Trail…

Fiddleneck…

Cheesebush starts blooming.

desertwildflower.com (courtesy of S. Sampson)


Creosote explodes.


Mesquite fuzzes out in yellow.

Dyeweed blooms purple.

A pretty bush in shades of pink…

Mary, Frank, and I look for the last of the Desert Lilly and find it on the Smoke Tree Ranch trail.

Gilia…

White Rhatany and Skeleton Bush…

Woody Bottle-Washer…

Fremont Boxthorn…


Donna the Docent’s “portal to another world”…

Can you see it now?


Goodnight, moon…

Goodnight, Thousand Palms Oasis…

Thank you, John!

3 Days On the Road and a Most Wonderful Birthday Dinner With My Son…

On September 24th we take off to see the oasis, the wonderful oasis of Oz… I mean the Coachella Valley Preserve. Thousand Palms is our Emerald City without all the glam and glitter. It is an emerald in the rough. The California Fan Palms shine brightly against the deep blue sky while the subtler tones of green from creosote, mesquite, arrowhead, cat’s claw, indigo, smoke trees, alkali golden bush,  cattle bush, cheese bush, dye weed, quail bush, desert holly, four-winged saltbush, and sandpaper bush pale by comparison. But in my eyes all these greens sparkle like gems.


Follow the 101 Highway…

The first night we stay at Giant Redwoods RV Park just off the Avenue of the Giants in Meyers Flat. We don’t encounter a scarecrow who wants a brain, but giant trees that are grateful that smart people have allowed them the freedom to live.

google maps

I don’t take any pics, so here’s one I “borrowed” from the website.

giantredwoodsrv.com


Follow the 101 highway…

The second night we stay in Pleasanton outside of Oakland at the Alameda County Fairgrounds.

thefairparkrv.com

thefairparkrv.com

We don’t meet a rusty tinman who wants a heart, instead we meet up for dinner with my handsome son, John, who HAS a GOOD HEART 💜!

He is in Oakland, the headquarters for Dictionary.com, where he has been promoted to Senior Research Editor. Yay, John! As a matter of fact, John came up with the Word Of The Year for Dictionary.com at one of the company’s brainstorming sessions. (No brainless scarecrows here either.) Of course he won’t tell us the word. We have to wait until December 2nd to find out like the rest of the world.

John is staying in a hotel near Jack London Square, a landmark and symbol of Oakland’s history as a seaport. The Square faces a natural estuary that leads to San Francisco Bay. This site was the heart of Oakland’s port operations linking the industries of shipping and agriculture. Today Jack London Square remains a vibrant working waterfront plus an entertainment and commercial site, home to stores, restaurants, hotels, and more. (jacklondonsquare.com)

jacklondonsquare.com

Jack London (1876 – 1916), the American writer who wrote The Call of the Wild, White Fang, and The Sea-Wolf, spent much of his boyhood on this waterfront as an oyster pirate and sailor. Later he became a pioneer in the evolving world of profitable  magazine fiction as one of the first Americans to make a lucrative career exclusively from writing.

jacklondonsquare.com

He sat in Heinhold’s First and Last Chance Saloon penning notes for future books.

jacklondonsquare.com

Opened in 1883 by Johnny M. Heinhold, this waterfront saloon built from the timbers of a whaling ship, is named for the first and last chance sailors had the opportunity to heavily drink alcohol before or after a long voyage. Now a National Literary Landmark, Heinhold’s preserves its rustic character from an earlier era when it was frequented by eminent politicians, statesmen, authors, and artists, as well as humble sailors shipping out to sea. (jacklondonsquare.com)

We walk to the Square, which is a few blocks away from where John is staying.

I thought we were going for pizza and beer. Instead, John treated us to an amazing dining experience at Dyafa, a Middle Eastern restaurant of snacks and main courses to be shared.

dyafaoakland.com

dyafaoakland.com

dyafaoakland.com

The term “dyafa” is Arabic for hospitality: Our wish is to bring you into our home and treat you like family. (dyafaoakland.com)

We share quite a delicious and diverse array of delectable dishes and quite a few glasses of sparkling rose wine! John picks up the tab, his gift to me for my 67th birthday. Thank you, John!💜

And good luck with your new position with Dictionary.com! Seriously, I recommend you sign up for “Word of the Day.”


Follow the 101 highway…

The third night we stay at Lost Hills RV Park outside of Bakersfield, California, one block west of Interstate 5 at Highway 46.

losthillsrvpark.com

losthillsrvpark.com

No cowardly lion greets us. It’s my birthday, however, and I roar with the courage to embrace my approaching 70th in 3 years.

Tomorrow I click my heels and we return to Thousand Palms Oasis. There is no place like home… in the desert, or the northwest coast, or wherever family live!