All About Oliver

A Sanfilippo Story by Grammy L…

Little Sis

She’s always got her eye on him—whether imitating him, finding a guaranteed laugh for her poop jokes, seeing if he’s going to, as he always does, give her his cookie, or dive in with a hug and kiss and wrestle when he’s having a rough moment. She’s got the heart and strength needed for a special needs sibling. (This is what my daughter-in-law posted about Reagan on her Facebook blog, Oliver’s Tomorrow on June 7th.) 💪💜💪💜

She loves:

…dressing up as Elsa from the movie Frozen, while Big Bro is into Toy Story, Cars, and streaming Paw Patrol and Daniel Tiger on Amazon Prime.

…tutus, especially the ones Magaw (Oliver’s name for “Grandma” for Jen’s Mom and my sister from another mother) sews for her…

…drawing, coloring, painting whether on paper or herself…


…animals! (because they like her too)…

…being curious, as in “What happens if I poke this dinosaur’s tail in my nose?”

I observe Reagan growing, thriving, developing, just like Oliver… Until we knew something was not right. I will never ever forget my phone call with Brian in October of 2019 when he tearfully told me Oliver’s diagnosis. His words, “and he doesn’t even know,” still pierce my heart with a wound that will never heal. Our whole family’s world blew up! Sanfilippo Syndrome, a genetic disorder so rare and unheard of before, has now, unfortunately, become a household word. We can deal with rare,  but not terminal with no cure on the horizon. Not Oliver, our precious love-love boy whose smile lights up a room, literally!

Reagan has been tested and she is not lacking that single, yes single enzyme necessary to break down long chains of sugar molecules in the brain that, when they accumulate in children’s cells, the cellular machinery cannot work properly. Bottom line… cells die and vital brain tissue is lost. With Sanfilippo Syndrome, Oliver’s little body doesn’t have the necessary enzymes to break down the sugar molecules called heparan sulfate. (

Reagan will, sadly, surpass Oliver’s cognitive development. But, in the meantime, please find out more about Sanfilippo Syndrome and meet the rest of our “family”dealing with this fatal disorder at

All My Critters… Part 1

Great and Small on the Preserve


A member of the dog family, Canidae, desert coyotes weigh about 20 pounds as compared to their 50 pound cousins who live in the mountains. And because of the cooler temps in higher elevations, mountain coyotes have longer, darker hair and a bushier coat than the desert coyotes of the Coachella Valley Preserve  who are usually tan or gray with a black-tipped tail. (

At night we look forward to hearing their quavering howls which in coyote language translates into, “I am here. This is my space. Females, you are welcome to follow my voice and join me, but males, you need to stay away. Please answer me to let me know where you are so we don’t have any unwanted conflicts.”

Sometimes we hear a series of short high-pitched yelps. This noise may be from young pups playing or a pack of coyotes arguing or celebrating.

Coyotes will bark when protecting their den of pups or protecting the prey they just killed.

Canis latrans is the scientific name for coyotes and it means “barking dog.” I think our dog Casey was part coyote. (We miss you love-love dog… I hope you felt how much we loved you! We rescued you and you protected us.)

Very rarely will you hear coyotes huff. This subdued noise is reserved for calling to their pups. (

Coyotes, of course, have excellent hearing for detecting prey and avoiding danger. The movement and position of their ears communicate mood and rank.

Coyotes roam alone, in pairs, or in a pack. Like dogs, they mark their territory with urine. And they can easily leap over an 8 foot fence or wall.

In desert habitats, coyotes live and hunt within a range of 10-12 square miles. In the mountains they have both a summer and winter range as heavy snows drive them to lower elevations. (

Hunting both day and night, coyotes exist on a varied diet of mice, rats, rabbits, ground squirrels, insects, lizards, and the fruits and berries of wild plants. (

On the Coachella Valley Preserve they enjoy the fallen palm fruit from the California Fan Palm trees in the autumn and winter.

Coyote mating season begins in January when several lone males gather around one female with the hopes of courtship. The female, however, will form a relationship with only one of them. The new couple will then travel together for awhile before mating.

The female bears one litter of 3-9 pups a year in April or May when food is abundant. The gestation period is 63-65 days. (

courtesy of Ken Mix, co-host on the Preserve

courtesy of Ken Mix, co-host on the Preserve

The pups are born blind. Their eyes open when they are 14-days-old and a few days later, they emerge from the natal den. (

Coyotes prepare their dens in rocky crevices, under dense thickets, or by digging a burrow in the ground. After the pups are weaned the new family abandons the den but often return to it from year to year. (

courtesy of Ken Mix, co-host on the Preserve

Pups suckle for 5-7 weeks and start eating semi-solid food after 3 weeks. Dad supports his new family with regurgitated food, but Mom does not allow him to come all the way into the den. (

courtesy of Ken Mix, co-host on the Preserve

The pups live and play in the den for 6-10 weeks until Mom starts taking them out with her to hunt as a group. Gradually the family disbands. By autumn the pups are old enough to hunt alone and before their first birthday coyote pups are ready to go their own way to stake out their own territory. (

courtesy of Ken Mix, co-host on the Preserve

courtesy of Ken Mix, co-host on the Preserve

Pocket Gopher

This elusive little guy popped up one day so unexpectedly between the Palm House Visitor Center and the restrooms. First he dug a tunnel and plugged it up from underneath with a large mound of sand and dirt. Then within minutes, he suddenly opened another hole behind the original mound (a patio maybe?) and closed that hole. I was mesmerized so I stood still and waited. Sure enough, he emerged again, in front of the original mound (a front porch maybe?) and then escaped into one of its extensive underground tunnels, burying the opening once again.

Active all year round, these heavy-bodied animals measure about 9 inches long and weigh 6-8 ounces. Desert pocket gophers have very small ears and eyes, a short naked tail and large forelimbs with long claws… (The better to dig with, my dear.) Their lips close behind large incisor teeth so that dirt doesn’t get in their mouths while they dig.

Pocket gophers are found naturally throughout the Sonoran Desert region where there are easily dug soils, such as those in riparian areas (wetlands), washes, and mesquite groves. (

Pocket gophers are very shy and timid and seldom leave their underground tunnel system. They prefer to pull plants down into the tunnel from below. These animals are vegetarians and their diet consists of roots, tubers, grasses, green plants, and prickly pear cactus. Occasionally they will open a hole to allow some air exchange in the tunnel or to let tunnels dry out after heavy rains. (

These gophers are solitary critters and only get together for mating once, maybe twice a year, with 2-6 young born 19 days later. In 3 months these youngsters are sexually mature. (


The Greater Roadrunner, Geococcyx californianus, is probably the most famous bird in the southwest, featured in folklore and cartoons (Beep! Beep!) and known by its long tail and shaggy appearance. It walks and runs on the ground up to 15 miles per hour, only flying when necessary.

Roadrunners eat insects including tarantulas, scorpions, and centipedes. They also catch lizards, snakes, mice, young ground squirrels, and small birds such as sparrows, hummingbirds, and young quail. (

According to, a website created by the Cornell Lab of Ornithology, roadrunners kill rattlesnakes by pecking them repeatedly in the head, and from what I have gathered in my research, they most likely work in pairs with one roadrunner distracting the attention of the venomous viper. After snatching lizards, mice, and birds, roadrunners slam this larger prey against rocks or the ground multiple times to break down the bones and elongate the victim for easier swallowing.


The Common Raven, Corvus corax, is a massive, bird the size of a hawk, with a thick neck, shaggy throat feathers, and a heavy, dense, extremely powerful bill. This bird is entirely black including legs, eyes, and bill, and is often confused with a crow. But there are no crows in the Coachella Valley according to Anita K. Booth, an accredited bird biologist with Cornell University’s Lab of Ornithology and the author of the bird guide, Birds of the Coachella Valley, published in 2009.

Typically foraging in pairs, these bold birds will work cooperatively to flush out prey and search for nests to eat the eggs, hatchlings, or nestlings. Ravens are opportunistic omnivores and will eat just about anything including insects, lizards, rodents, berries, and garbage. The majority of the diet of these scavengers, however, consists of carrion, the decaying body of dead animals. (

Noisy and playful, ravens will put on an aerobatic performance of sudden rolls,  wing-tucked dives, and playing with objects by dropping them and catching them in midair. (

A large group of ravens (known collectively as an unkindness) starts descending upon the California Fan Palms on the Oasis Preserve in October to eat the fresh palm fruit and catch whatever treats they find within the fronds. After all the visitors are gone, a a raven or two will strut through the parking lot looking for dropped bits of food left behind.

According to the Cornell Lab of Ornithology, the reason there is a large group showing up in autumn is because these ravens are too young to start pairing up yet. This makes sense because as winter approaches spring, only one or two birds delight us with their antics.

Ravens and crows look a lot alike, but their are subtle differences.

Ravens are larger and make a low croaking sound. They usually travel in pairs, except when they are still young. Crows are more gregarious and favor the company of a larger group. Their call is more of a cawing sound.

A crow’s tail feathers are usually all the same length, so its tail opens like a fan. A raven has longer middle feathers in its tail, so it looks more like a wedge or a triangle. The crow has a smaller bill while the raven has a great big chunky-looking  beak. (, Ravens and Crows – Who’s Who?, adapted by Dominic Black from a piece by Frances Wood and Dennis Paulson)

Below is a picture of a crow, left, and a raven, right: Grey

And finally, ravens are more graceful and agile in flight, with light wingbeats and occasional soaring. Crows often appear to be swimming across the sky. (

Costa’S hummingbird

The costa’s is the hummingbird I am most familiar with in the Coachella Valley. When perched and at rest, this bird is small, short, and stocky-looking. Like most birds, the female is blandly colored… Fox

…but when the light hits the male just right, his crown and throat shimmer in a vivid iridescence that appears bright blue or purple… Fox

The costa’s diet consists mostly of nectar and insects. While hovering, it extends its bill within the flower to extract the nectar. Insects are often caught midair or plucked from foliage. (

These hummingbirds nest in late winter and spring, with one male mating with several females. Nests are 2-8 feet above ground, placed on horizontal or diagonal branches of sparsely-leaved shrub or small trees. Sometimes the females build their nests in yucca or cactus. (

Female costa’s typically lay 2 white eggs per clutch, the total number of eggs laid in one nesting attempt. And according to Anita K. Booth’s Birds of the Coachella Valley published in 2009, the eggs are laid 1-3 days apart.

Incubation lasts between 14-23 days (Anita K. Booth) and 15-18 days (

Within 3 weeks, give or take a few days, the newly hatched youngsters are ready to take their first flight with Mom. (

A Sacred Footpath

The Trail of the 57 Shrines

Jeff and I have been looking for this trail ever since Harlan told us about it when we first arrived at the Preserve in the fall of 2018. It’s not a marked trail on any of our maps. So, sorry, I will not share how to find this trail, but I will share the experience of walking along the over 500-year-old path of the Native Cahuilla Tribes whose lands we stole.

Harlan would explain to us how to find this trail, but we never did, that is until today when he hiked with us and showed us from a distance where we needed to descend and ascend to connect with a narrow footpath.

It is not obvious where to access this trail and even less obvious as to how to get there. (But, promise me! If you do, PLEASE be respectful. Stay on the trail and do not disturb any rocks or carry out a souvenir! Make this a memorable moment in your life and just take pictures.)

Once we stepped onto the narrow trail, I knew I was walking upon special ground and I felt connected to these indigenous people who learned how to survive and thrive in the desert heat and sand with a minimal supply of water.

As I respectfully moved forward, I so hoped that the sound waves from each step I took composed themselves into a song honoring the Native Cahuilla. You don’t know me and I don’t know you but I am your sister, your daughter, your student. You are my brothers and sisters, my parents, my teachers. (The only other time in my life that I felt this collective consciousness experience was when I landed in Africa and stepped off the plane. I was in Addis Ababa, Ethiopia. My first thought, that came out of nowhere was, “I am home.“)

Prehistoric Trails in the Colorado Desert

The indigenous people of southeastern California and western Arizona left a lasting legacy of their presence in the form of numerous trails crisscrossing the Colorado desert. Their more modern contemporaries also relied on these same footpaths to travel between permanent settlements for trade and warfare, to travel to seasonal base camps to collect stone and foraging resources, and to travel to temporary campsites along exploitation trails. These ancient Indian trails were also ritual routes leading to sacred sites.

Research conducted in 1987 and 1996 hypothesized that the repeated pounding of feet upon these trails pressed the rocks of the desert pavement into the soil or pushed them aside to reveal the lighter-colored subsoil. A 2003 study, however, suggested the prehistoric trails were deliberately cleared. (

Cleared circles of various sizes are often found along trail segments. In 1966 Malcolm Rogers referred to these clearings as sleeping circles, suggesting that they represented temporary camps. (

Rogers also suggested that the ruins of large circular rock cairns along these trails indicated their existence as shrines, “simple offerings, generally rock, presumably in the belief that they would prevent fatigue, sickness or injury while traveling.”

Andrew Pigniolo, Jackson Underwood, and James Cleland concluded in 1997 that “the religious and spiritual significance of trails, added to the well-recognized importance of desert trails for trade and travel, provides a portrait of trail patterns as an extremely significant heritage resource.” (

Trail Shrines

Rock cairns, circular mounds of stones, petroglyphs, tobacco pipes, broken pottery shards, and shell ornaments have been discovered along these interwoven trails.

I found an interesting and helpful 2003 article entitled “Trail Shrines in Native American Rock Art” by Galal R. Gough, a member of the Utah Rock Art Research Association (URARA). ( The URARA leads in the preservation and understanding of the value of rock art, encourages the appreciation and enjoyment of rock art, and assists in the study, presentation, and publication of rock art research.

Apparently in 1999 Gough received pictures of rock art from the Coachella Valley Historical Society. The pics were dated 1968 and were later discovered to be taken around the Salton Sea. At this time in his research, Gough was only familiar with what he called Safe Passage Trail Shrines as mentioned in Stephen Byrne’s 2011 article. 

Upon further study, however, Gough discovered differences in the petroglyphs of various shrine ruins, suggesting the likelihood of 2 more types of native shrines, the Harvest Trail Shrines and Hunting Trail Shrines.

Now, this is where the research gets fascinating. In June of 1951 Paul Wilhelm wrote an article for the local newspaper, The Desert Sun, describing a trail he discovered across from Thousand Palms Oasis. Wilhelm named this trail, The Trail of 57 Shrines because of the “record number of rock mounds-Trail Shrines of the ancient Indians who once camped“ at the Thousand Palms Spring. 

Thus, Gough hypothesized a 4th type of shrine, existed. Because of sleeping circles and other indications of ritual taking place over several days, he called these shrines and others he studied Sacred Gathering Trail Shrines

our sacred journey

Desert pavement… a stony surface without sand or vegetation covering an expanse of the world’s drylands… (

Seeing its presence on a wide desert vista, dark with age, gives a hint of the delicate balance of slow, gentle forces that create desert pavement. It is a sign that the land has been undisturbed for thousands and thousands of years. (Ahem, another reason why staying on established trails is so important!)

The darkish color of desert pavement is due to rock varnish, a coating built up over many decades by wind blown clay particles and the bacteria that live on them. 

There are 3 traditional theories explaining the creation of these stony deposits:

  1. Lag Deposit Theory suggests that the wind blew away all the fine-grained sand particles from sand dunes and left the heavier rocks behind.
  2. Moving Water Theory suggests that occasional rains in the desert splashed loose the sand and fine-grained materials so that a flash flood, in the form of a thin layer of rainwater or a sheet flow, swept away these tiny particles, leaving the rocks behind.
  3. Heave Theory suggests that repeated cycles of wetting and drying of the desert soil moved the stones to the top. 

But wait! A fourth theory from Stephen Wells suggests that “stone pavements are born at the surface.” Thus, due to heave, stones remain on the surface. However, a deposit of windblown dust must build up the soil beneath the pavement. I don’t even attempt to understand this, but for geologists this means that this dust is a record of ancient climate just as it is on the deep sea floor and in the world’s ice caps.

(Alden, Andrew. “Theories of Desert Pavement.” ThoughtCo, Feb. 11, 2020,

The footpath…

You are quite right noticing the rock piles beside the trails…

And yes, some sleeping circles lie ahead (pun intended)…

Desert pavement, footpath, and sleeping circle…


Remnants of Trail Shrines…


A view of Thousand Palms Oasis… Do you see the dark green palm trees in the distance?

A cactus “tale”… beavertail cactus, that is…

A barrel full of barrel cactus…

Back on the marked trails again… bird’s eye view of Thousand Palms Oasis and Thousand Palms Canyon Road.

And here’s a view of the trail and washes along Bee Mesa…

And this view of Mt. San Jacinto hovering over Palm Springs and the desert cities…

There is nothing dull about the desert! There is always more to discover!

Quarantined in the Desert

Staying Put During the Covid-19 Shutdown

On May 1st Tom, our neighbor and co-host leaves for Utah.

From left to right, Tom, Ken, Rebecca, and Jeff gather to say goodbye as I take a picture.

Be safe, Tom, and know you will be missed…

Ken opens and closes the parking lot gate for Tom and takes a video. We all hope he will return in October. Fingers crossed.

So now it’s just Jeff and me on the Preserve.

What are we doing to keep busy? Besides reading, eating, binge streaming Netflix, Amazon Prime, and YouTube, eating, getting on each other’s nerves, eating, and missing our family and friends? And of course, eating!


First, we finish lining a trail with rocks that starts at the Pushawalla Loop Trailhead parking  area and heads south along Bee Mesa.

There are so many washes in this area and established trails are confusing to follow, especially since rains that cause flash flooding constantly wipe away the original trails.

As always, our hard work pays off.

After laying the final most perfect rock to complete the hiking pathway, I walk the trail to admire our contribution to the greater Coachella Valley Preserve for future visitors’ hiking enjoyment. (And yeah, to remind guests to please stay on the trail.)

This amazing Sand Blazing Star, with its 5 satin-like pale yellow petals and serrated leaves, smiles up at me in gratitude.

We hike the Indian Palms Trail loop clockwise and counterclockwise pulling Sahara mustard and to establish a possible trail through the wash to line later with rocks, pending our Preserve Manager, Ginny’s approval.

We discover that desert holly turns a pale pink.

And these huge rocks with pock marks and layers… I mean, we have walked by these guys many many times, but today we notice them!

At the south grove of Indian Palms, Jeff is convinced that we can head back through the wash to reach the old Indian Trail. I’m not one for saying, “I told you so,” (fingers crossed behind my back… ) but I know better. I find a steep descent into the wash and…

…a sunbathing speckled rattle snake blocking the hazardous pathway. Jeff thinks the snake is dead because of the bees buzzing around it. I wait and watch. Sure enough, its  tongue flickers in and out and then it curls its head toward the end of its body.

Jeff now agrees that this grove is an in and out trail. (You know I told him so!)

Ginny, grateful and impressed with our Sahara mustard weed-pulling skills, shows us the summer weeds that need constant attention: tamarisk and pulicaria. 🥴😱🥴


According to, tamarisk is an invasive, non-native shrub or small tree. Also known as saltcedar, tamarisk thrives in alkaline soils where water availability is low. Ah, this means the streams of the Coachella Valley Preserve, created by the aquifer and the San Andreas Fault, are a perfect home for this unwelcome guest.

Tamarisk grows in dense, nearly impenetrable thickets, hoarding light, water, and nutrients that are precious to the desert ecosystem by replacing native cottonwoods, willows, and dry land plants that provide habitats for animals and birds. The plant’s  foliage and flowers offer little food value for native wildlife. Tamarisk also increases wildfire hazards. (, courtesy of W. Mark and J. Reimer, courtesy of W. Mark and J. Reimer 

Here’s a young shrub blooming on the Preserve. The pink flowers are quite lovely, however, don’t be fooled. Each plant can produce as many as 500,000 seeds a year. Seeds are small with a tuft of hair at one end enabling them to float long distances by wind and water. Seeds are short-lived and can germinate within 24 hours after dispersal, sometimes while still floating on the water. (

And here’s a better pic from the internet. courtesy of Steve Dewey, Utah State University,

So, where is tamarisk from and how did it get here in the desert?

Originating from the dry areas of Eurasia and Africa, tamarisk was introduced to the Southwest in the 1800s, predominantly as a windbreaker along railroads and riverbanks. Of course it’s tolerance in dry climates made it a popular ornamental landscaping plant. (


Another non-native flowering weed is Pulicaria, also known as Spanish false fleabane. ( Morse at

We follow the stream as it runs under Thousand Palms Canyon Road.

A Rush Milkweed is in full bloom.

This plant is also called Skeleton Milkweed because of its tall slender gray-green rush-like stems. Native to California, asclepias subulata, releases a sap that has been analyzed (way back in 1935) and found to contain natural rubber. This toxic milky juice was used to induce vomiting in some native cultures. (

And I remember reading somewhere in my milkweed research that Native Americans chewed on certain species of milkweed like chewing gum. No, they couldn’t blow and pop bubbles…

Milkweed is crucial to the life-cycle of the monarch butterfly. Female monarchs search for milkweed to lay their eggs as the larvae will only feed on leaves from the asclepias family. The leaves contain cardiac glycosides which, when ingested by the caterpillars, protects them from becoming prey to birds. This protection continues when they become butterflies as well. Predators learn to avoid monarch larvae and butterflies because they taste bad or make them vomit. (

We continue down the stream toward Washington Street feeling confident in identifying and pulling tamarisk.

So far we don’t think we have seen pulicaria until we recognize the red stems… Wow! We hit the mother lode of a patch…

More pics of the stream…

And some surprises…

I stumble upon the only Ghost Flower I have seen this season!

So beautiful and precious a find…

Gamble Quail squawk and scatter along the wash. And then I look up and am so surprised to see a quail calm and settled in a Smoketree.

Speaking of Smoketrees…

They are blooming!

Datura or Jimson Weed grows abundantly in the washes. Notice the round green spiny seed pods of this healthy guy…

And the blooms just barely ready to open…

The stream dries up and we make our way to the stone-lined trail that crosses the road to Willis Palms on the west side, leads to Hidden Palms on the east side, or makes a right angle turn leading back to the Palm House Visitor Center along the base of Bee Mesa.

As we head back to the Visitor Center, we notice something rusted and abandoned toward Thousand Palms Canyon Road. We leave the trail, (only because we can as we volunteer and work here…) and walk toward this heap of an old Volkswagen Bus riddled with bullet holes…

The bus, not the bullet holes, reminds me of Jeff’s son, Andy… When he lived with us in Cincinnati he was working on restoring one.

On Fridays Jeff and I take the Preserve truck and drive out to the pond which is still closed for the restoration and eventual reintroduction of pupfish.

Our job is to clean up the piles of dead reeds, that were cut down and pulled from the pond last spring and summer, and all the other piles of debris that were removed to fence the area in to protect wildlife from the restoration project.

It’s a slow process. We rake and fill the truck bed with a load of debris. Then we drive it back to the dumpster in our parking lot at the Palm House Visitor Center. The garbage  gets picked up on Thursday, so Friday is a good day to fill it up again with 2 truck loads.

Jeff jumps in the dumpster and tampers down the stuff we unload to make room for the weekly garbage of Ken, Rebecca, their daughter Megan, and us.

Of course we still take care of the Palm House even though it is not open. The mice still leave their little mouse poop and sand piles and the surfaces get dusty.

Outside the Palm House and behind our RV, we rake up fallen fronds.

Once a week we cut back the reeds growing along and under the boardwalk of the oasis. No visitors + infrequent foot traffic = lots of reeds needing a haircut.

No foot traffic does not prevent air traffic from enjoying the oasis, however… Look whooooo is supervising our work!

Two Long-eared baby owls!

Is this not the perfect place, except for the hot summer temperatures, to be sheltered in place? We have 880 acres in our immediate backyard surrounded by the rest of the 30,000 acres of the Coachella Valley Preserve.

I mean, look at this view from a bench on our Preserve. Imagine yourself sitting here.

And when you leave, you turn around and notice the words engraved on the bench…

So… We have decided to hunker down in the desert during the uncertainty of these times; the Covid-19 pandemic and now the racism pandemic.

Please everyone… Stay safe. Keep safe for others. Pass kindness forward. Look for sameness instead of difference. Ask questions to understand. Let’s love ourselves so we can love another. Reach out. VOTE! Vote for our children and our children’s children.

Before it’s too late…

All About Oliver

A Sanfilippo Story by Grammy L…

Jen shares her thoughts and a picture with Oliver.

A year ago, Oliver had his first dance recital. [Aunt Jess owns a dance studio.] He wore a white button-down shirt with a light blue suit. As he got dressed, his back was towards me, and I pictured him as a high school teenager getting ready for prom.

Just as he did on recital day, my hope is that he is able to dance at his prom, to charm the whole room with his ear to ear smile, to wave to all the familiar faces of those who love him. I want him here, healthy and happy, with the same overflowing joy we felt this day.

All About Oliver

A Sanfilippo Story by Grammy L…

Oliver Graduates From Pre-Kindergarten

His Mom wrote on Facebook…

He’s off to a new school in the fall for Kindergarten!

CLCC (Christ Lutheran’s Children Center) and all the teachers and staff have been such a rock for us—always—and ever since his diagnosis. They have been endlessly patient, kind, and joyful, and serve from such a place of love. They hold such a beautiful part of Oliver’s journey—the part where his empathetic and silly personality was blooming. Where he sang his ABCs with conviction. Where he wanted to know every parent’s name and get their child the right water bottle. Where he touched every photo every time he walked those halls. Where he easily played with other kids. Where he was just a little boy with a congested nose who was a little delayed jumping.

Oliver, sweet boy, your story isn’t written. Here’s to pre-K graduation, and the next graduation, and the next, and the next. I’m so proud of you. I am so honored to be your mom. 

Here’s my little love-love boy! Due to the Covid-19 pandemic, his graduation was a drive-through event. Dad decorated the car!

His pudgy little face is from the prednisone that he is taking after participating in a clinical trial treatment for Mucopolysaccharidosis (MPS) IIIB, known as Sanfilippo Syndrome.  On April 3rd Oliver received a gene transfer by way of a virus injected intravenously. Prednisone is a corticosteroid that decreases the immune system’s response to various diseases. We want Oliver’s body to welcome this gene that makes enzymes needed to break down sugar molecules collecting in his brain. The build up of used heparan sulfate (one type of sugar molecule) in his brain cells affects his growth, mental development and behavior, and damages his little organs. The trial dosage is a treatment, not a cure. There is no cure. Please go to to learn more about this life zapping genetic disorder. (Yeah, it’s heart-wrenching…)

I am so proud of you, Oliver! And I am honored to be your Grammy L. You are an incredible little super-boy who lives life in a big way with a big smile and a big heart. Here’s to all of your tomorrows!

So, speaking of virus, I am conflicted about flying to Ohio because of Covid-19. I want to, oh, I want to! But I don’t feel safe, especially now that more and more states that have reopened venues are experiencing a rise in coronavirus cases. Some states (NY, NJ, and CT) are requiring travelers, arriving from states with an upsurge in new cases, to quarantine for 14 days. California is one of these upsurge states and, yep, that’s where we are locked down. Is driving the RV across the continent a solution? I just don’t know. I just don’t know… My family can use my help, for sure. But will I place them in harm’s way? Will I place myself in harm’s way? I wear a mask and socially distance but I cannot trust others, who have become more complacent about this pandemic, to do the same for me.

In the meantime I send videos and second guess and reconsider and sleep on my travel decisions… I mean I have a love-love family in Ohio that I miss… Soooooooooo much!!!!! The last time I visited was in December. Besides Oliver, there’s Brian and Jen (his parents) and my granddaughter Reagan Rose who is almost 3 going on 13. Yikes! She too has a big personality. The whole family is one big steroid pumped up on love, laughter, and living life! And freezing the joy…

The Day the Lights Went Out

And Everything Else…

Jeff and I wake up to no electricity. Our co-host, Tom, greets us with an explanation. A car swerved off Thousand Palms Canyon Road, in front of the Preserve, and knocked over a utility pole. No one was injured, luckily.

Okay, but not… The temperature is going to rise to over 100 degrees today!

Luckily, our RV generator, which we are supposed to run for 30 minutes every month (and we don’t) still kicks on. For the next 9 hours we rely on it to keep us cool. Tom relies on his generator as well.

Our other set of co-hosts, Ken, Rebecca, and their daughter Megan live in a trailer RV about a half mile south of us on Thousand Palms Canyon Road. Unfortunately they do not have a backup generator. Fortunately, their power was restored by 10 AM because the power company could reroute the transfer of electricity to their power source.

But Tom and Jeff and I aren’t so lucky. A new electric pole has to be installed in order for us to get back on the grid.

Around 3 o’clock in the afternoon we notice a lot of equipment arriving and activity happening along the road. Jeff and I take the parking lot trail to investigate and take pictures.

A brand new utility pole is being hoisted up. The connecting pole’s wires reach across Thousand Palms Canyon Road. Apparently we are connected to this broken power line.

(But hey, I’m not complaining! We are in the middle of the desert and we have full RV hookup, WiFi, and an on-site washing machine and dryer… one of three spots reserved for Preserve Volunteer Hosts.) And since we have a motor home and Tom has one too, we both have built in generators to supply all of our electrical needs.

It’s fun to watch…

The guys above wave down at us as they wait for the new pole to be positioned correctly.

This disconnected loop of wire runs across the street to the next utility pole. The new wires are ready to be attached at the top.

Lots of big equipment… each truck has one worker wearing a mask, I might add.

Notice the pole equipped with a new set of electrical connectors. Did they build that and add it to the pole today? I am going to guess, yes… I mean how many ready-to-connect poles are needed on a daily basis?

The crashed pole splintered at the base.

The Imperial Irrigation District (IID) is the public agency that provides water and energy service to the Coachella Valley south to the border of Mexico.

Now the wires get attached.

Tom watches the trucks leave and we quickly check to see if the electric meter is running. Nope… ?

We find out through Ginny, the Preserve Manager, that it will take another 45 minutes until the power returns. I guess someone somewhere has to pull a switch.

By 5:00 we are back on the grid! Ah, the beautiful buzz of electric energy…

Meanwhile, we can only speculate on what happened for a car to crash into and wipe out a power line…

Driving too fast? Cars, trucks, motorcycles speed through the curves of Thousand Palms Canyon Road all the time. Impatient drivers cross the double yellow line and pass 2 or 3 cars at a time before heading back to their lane.

Texting while driving on a curve?

Drinking and driving? …as in hot coffee… We did notice a takeout cup of coffee lying in the road.

We’ll never know. What’s surprising, however, is that there aren’t more accidents on this stretch of road between Ramon/Washington and Dillon.

google maps

The Perks of Pulling Mustard Part 5

Beyond Indian Palms

On our official trail map, the Indian Palms Trail is an almost 2 mile out-and-back hike to 2 small palm groves.

But there is an old Indian trail leading out of the wash of the second grove, the southern one, that takes you into the wash leading to the Pushawalla loop or beyond to Willis Palms along the trail beside Bee Mesa OR  to the stone-lined trail leading back to the Indian Palms Trailhead and across Thousand Palms Canyon Road to our parking lot.

My point is, this off trail path eventually leads to several marked trails and our Preserve Manager, Ginny,  would like to incorporate this old Indian Trail into a connecting loop.

I am excited to discover this loop and, as I hike it, I combine work with pleasure by pulling and bagging Sahara Mustard along the way.

I think I went out 3 or 4 times myself before enlisting Jeff’s help. We hike the loop several times filling and carrying out 1 bag apiece and then 2 bags each.

I hope you enjoy these hidden splendors I encounter as I snap pictures while I work alone and with Jeff.

There is no actual trail leading out of the south grove of Indian Palms to the old Indian Trail which ascends beyond the wash. So, you can either backtrack to the wash and cut over, or backtrack and find a path of least resistance across the wash. Jeff and I do both as we pull and bag Sahara Mustard.

So, I’m hot, tired, and discouraged by the amount of mustard that still needs pulling… (Honestly, if a dumpster could somehow be dropped down here and somehow follow us along that would be so wonderful. And, if with a twitch of the nose or a sophisticated app, it could be magically picked up and sent to the Big Dump in the Sky, that would be even better.) We can’t get too tired or thirsty or hot because we still have to carry bags of mustard weeds out with us for another 1.5 miles! But I am not complaining. It’s actually a rewarding chore as I discover…

Mammillaria dioica, Nipple Cactus

I don’t even begin to understand the nuances of descriptions of the various cacti that sparsely grow in the Coachella Valley, but this is the consensus of my authoritative sources, namely Ginny, Harlan, and Jon Mark Stewartfrom his book Colorado Desert Wildflowers.

This red pepper protrusion is something I have never seen before. (Duh, like I’m an expert!)

My bag/our bags full, we ascend out of the wash. Luscious wildflowers line the old Indian trail leading out of the south grove.

Hidden hills smile over the rocks.

A secret canyon folds into the hills.

A Barrel Cactus hangs out among the rocks, perfectly posed beside Creosote Bush.

A Desert Dandelion and Chicory share this selfie among the thorns.

The only White Rhatany I’ve seen this season is along this trail.

Krameria bicolor, also known as Krameria grayi, is a member of the Krameriaceae Family, named in honor of the father and son Austrian botanists Johann Georg Heinrich Kramer and Henry Kramer.

Native to the arid regions of Arizona, California, New Mexico, Nevada, Texas, Utah, Baja California, and Mexico, White Rhatany are root parasites that depend upon nearby plants such as Creosote Bushes for part of its nutrition. (

(According to, “A parasitic plant is a plant that obtains all or part of its nutrition from a host plant without contributing to the benefit of the host and, in some cases, causing extreme damage to the host. The defining structural feature of a parasitic plant is the haustorium, a specialized organ that penetrates the tissues of a host and absorbs nutrients and water.“)

Instead of nectar, White Rhatany produces oil that attracts bees of the genus Centris which have specialized hind legs that enable the bee to scrape up the oil. Black-tailed jack rabbits rely on White Rhatany during the winter. As a browse plant, White Rhatany provides fodder for livestock, Mule Deer, and Desert Bighorn Sheep. (

A sky full of pelicans erupts over the hills.

A group of pelicans has many collective nouns, including: brief, pod, pouch, scoop, and squadron. (

And when they swoop and turn, the sun catches their white wings causing bright flashes…

On the ground, a robust Woody Bottle-Washer Primrose starts to bloom, the only one I have seen this season!

The old Indian Trail ends. I can see the trail leading up to the top of Pushawalla Ridge and the electric poles extending across Thousand Palms Canyon Road to the parking lot trail.

There is no established path here so we head toward one of several washes and eventually “mark” a trail with memorable landmarks, such as this healthy patch of Chia.

A member of the Mint Family, Salvia columbariae has tiny lavender to blue flowers clustered in several balls along the stems. The velvety leaves lie along the base of the flower stalks and apparently smell a bit skunk. (Hmmm… Next time I will be sure to get down and nosy…)

Dried seeds were harvested by Native Americans and ground into a flour called pinole. A type of porridge or gruel was made by adding water to this powder. Steeping the dried seeds in water produced a thick gelatin-like liquid.

This is one of the few species of Salvia used as an energy enhancing nutrient. The most popular health food chia is the Mexican Salvia hispanica. (

This mummified Cat’s Claw is another desert marker we use to navigate through the various washes off the old Indian Trail.

As I wonder and wander through the wash, I see bright orange patches ahead, lighting up the way contrasting with the blue sky, green shrubs, and light beige desert sand.

Desert Dodder is a slender-stemmed pale yellow to orange parasitic annual twining around and through shrubs, bushes, and herbs in the Colorado and Mojave’s Deserts. And yes, even some of the Sahara Mustard I pull is all tied up in strands of Dodder.

It starts from a seed. As it sprouts it weaves itself counter-clockwise around a plant’s stem or branch, tightening its grip on the host and pushing little wartlike bumps, called “haustoria”, into the stem. Now, the Dodder’s connection to the earth has been broken, and since it cannot make food on its own, it depends on the host to draw its nourishment through the haustorium. Dodder does not usually kill its host plant, but a heavy infestation in times of drought may cause significant damage. (

And then a perfect pop of pink! Desert Five Spot, a precious gem of the desert…

Eremalche rotunddifolia is a member of the Mallow Family and is native to the Colorado and Mojave Deserts. When open, each of the 5 pink petals has a large dark red blotch at its base. (Jon Mark Stewart from his book Colorado Desert Wildflowers)

Last year, during the superbloom, we barely caught a glimpse of opened Five Spots!

Checker Fiddleneck, with its curled tails, loves hanging out in the washes.

Bladder Pod greets us along the trail back across the street to our parking lot.

A member of the Caper Family, the yellow flowers give way to an inflated pod that contains several seeds. Yep, this plant is related to the commercial capers you buy in a jar in the grocery store. (Jon Mark Stewart from his book Colorado Desert Wildflowers)

Another Bladder Pod lies along the base of Bee Mesa.

As I continue through the wash along the base of Bee Mesa I notice a white canister hanging out of the side of the hill. At first I think it’s a water bottle and wonder who would leave one here. Upon closer examination, I realize this has something to do with a science activity. A few weeks later I notice more of these devices half buried, scattered throughout the washes, and marked with a pink flag near the Pushawalla Loop. Placed by geologists, they measure earthquake activity.

Further on, a young Cat’s Claw bush  starts blooming.

A member of the Pea Family, Cat’s Claw Acacia, or Acacia greggii, has sharp curved hooked thorns resembling the claws of a cat. (

Also known as “wait-a-minute” bush, this common shrub abundant in the washes of the Colorado Desert is nearly impossible to navigate through as the claw-like thorns catch, hold, and tear clothing as well as lacerating the skin. (Jon Mark Stewart from his book Colorado Desert Wildflowers AND

More mature Cat’s Claw bloom in fragrant bundles of sweet smelling deliciousness…

Later, the fuzzies turn into curly pods…

Just beyond, a “field” of wildflowers on the slope of Bee Mesa catches my attention.

This is amazing! I mean, this is the mini desert superbloom of 2020!

Among the Little Gold Poppies, Lupine, Notched-Leaf Phacelia and Chicory, I notice a flower unfamiliar to me with leaves that remind me of parsley.

I share this pic with our Preserve Manager, Ginny. She suggests this is Earth Smoke, a non-native desert wildflower.

Walking further south along the base of Bee Mesa, an “Avenue” of Smoketree lines a  wash meandering to the west. In the background you can see the Indio Hills that are being squeezed up by the 2 strands of the San Andreas Fault: Mission Creek in front and Banning behind.

Patches of Pignut pop up.

Hoffmannseggia glauca, also known as Indian Rushpea, Hog Potato, and “Camote de Ratón” or mouse yam, this plant is a member of the Legume Family. (

As Jeff and I continue pulling Sahara Mustard along the trail beside Bee Mesa, I discover desert dandelions towering over Frost-Mat. (Well, I didn’t know what it was at the time, but I sent these pics to our Preserve Manager, Ginny, and she identified them for us.

Thick greenish leaves and tiny white flowers, Achyronychia cooperi is a member of the Carnation Family.

Finally, Jeff and I head back home with 2 trash bags apiece filled with Sahara mustard. We look up and I immediately put my trash bags down and grab my phone from my pocket to take this pic of this Smoketree and  Sweetbush. It’s only later after reviewing my photos that I realize that I captured Squaw Hill and the palm groves around Thousand Palms Oasis in the background.

As we head back along the trail that leads across Thousand Palms Canyon Road, I smell a subtle and familiar fragrance and barely notice the flowering bush of pastel purple flowers.

Desert Lavender


I wish you could see the amazing blazing yellow color of these Desert Dandelions!

And the yellow-orange glow of these Little Gold Poppies  mingling with the bright white Chicory

And this, my favorite pic of all… the “token” white among the yellow.

I have entitled it, ACCEPTANCE.

I invite you to read Tana French’s novel, The Secret Place, to discover why.

All About Oliver

A Sanfilippo Story by Grammy L…

The Best Birthday Gift

It finally happened! Oliver pre-tested, tested again and again, qualified for the clinical trial dosage of ABO-101 and thanks to Dr. Kevin M. Flanigan (who jumped up, down, through, over, and under hoops to make this happen during the COVID-19 pandemic no less) Oliver checked in to Nationwide Children’s Hospital in Columbus, Ohio.

I knew this was a possibility as Jen and Brian sat on pins and needles waiting for the green light as the trial dosage shipped from the U.K. , arrived in NYC, and was held up in customs. The light remained yellow.

And then it turned green!

Text messages started dinging…

I was shocked, deliriously happy and overcome with love…

And in a private text I said…

I can’t help being Grammy L, the cheerleader for my family…

Sanfilippo Syndrome Type B, also known as mucopolysaccharidosis type IIIB (MPSIIIB), is characterized by the body’s inability to break down large sugar molecules called mucopolysaccharides, or glycosaminoglycans.

In patients with MPSIIIB, gene mutations result in a marked decrease in NAGLU enzyme activity, which leads to an accumulation of heparin sulfate in the brain and other organs, as well as progressive brain atrophy.

Essentially, ABO-101 is a virus that can cross the blood brain barrier after intravenous administration.

Dr. Flanigan is the trial’s principal investigator and Director of the Center for Gene Therapy at Nationwide Children’s Hospital.

“We are especially pleased to see reductions in several key biopotency markers, including the reductions in cerebral spinal fluid, urine and plasma heparan sulfate and normalization of plasma NAGLU enzyme activity at days 7, 14, and 30 post-transfer, added Flanigan, also a professor of pediatrics and neurology at The Ohio State University College of Medicine.” (, courtesy of Jose Marques Lopes, PHD)

Oh, Happy Day!

All About Oliver

A Sanfilippo Story by Grammy L…

Happy Birthday Love-love Boy!

Jen posted this message on the eve of Oliver’s birthday…

Tomorrow (4/2) is Oliver’s 5th birthday. I imagine I’ll be a bunch of emotions being that it will be his first birthday since his diagnosis. Prior to COVID, we had been staying away from new environments to keep Oliver as healthy as possible, so we were crawling at the walls even before this quarantine.

Oliver LOVES smiling faces, waving hello, and knowing people’s names. We have an on-going debate on whose birthday it is that starts mid-March (I say it’s my birthday right now, then he says it’s his and that mine is after his. Then we both break into song, singing happy birthday to ourselves. Then, one of us sings happy birthday to the other and vice-versa.)

If you could, I’d love to show him a bunch of videos of people singing him happy birthday. Whether you post here, tag me, or email me a link, or text me a video, it’d be such a treat for him.

Thank you for all the love ❤️

So, just saying… whether you know Ollie or not and you feel like sharing a little happy birthday song with him today, go for it! You’ll make his day, I guarantee it! If you have a Facebook account go to Jennifer Kelly’s Oliver’s Tomorrow. You can also email me at and I will share it with my grandson. (I promise not to view it!)

So, since our family cannot physically be with Oliver today due to his upcoming trial dosage treatment and the COVID-19 shelter in place, my son, John, suggested we send our own birthday videos to Oliver. I wish I could share the one Jeff and I made… you’d get a good laugh! But alas, I cannot upload videos into my site.

Here’s the script (yes, I have taken part in the whose birthday is it game in years past…)

Here are some highlights…

Jeff’s stoic side-kick role makes me laugh! Thank goodness, I didn’t wet my pants!

Yes, I love Oliver! He is pure innocence and love and has no clue how Sanfilippo is compromising his life. He is more than Captain Hugs to me. He is my superhero. He inspires me to live fully and fearlessly.