All About Oliver

A Sanfilippo Story by Grammy L…

My daughter-in-law, Jen, has amazing friends! Meet Whitney Abraham,  a business and life coach…

When Whitney found out about Oliver, she told her fella coaches Stephanie, Simi, and Regan about him and they sponsored an event to raise awareness and funds for Sanfilippo Syndrome.

The picture above is from a clip of a video where all these wonderful warrior women are shouting, “We love you, Oliver!”


This Capture Confidence event in January was entitled, Modern Motherhood, open to busy women where the discussion centered around the challenges, tips, and tricks in managing life as a mother and professional. Women shared their feelings of comparison, guilt, and judgment, their struggles and wins with each other.

But this Capture Confidence event was a little bit different. Besides special guests, the purpose of this gathering was also in honor of their friend, Jen, and of course Oliver, as a fundraiser for Sanfilippo Syndrome. They put every red cent they made for this event to the Cure Sanfilippo Foundation to support Jen and raise money for a cure!


Here’s what Jen shared on her Facebook Page, Oliver’s Tomorrow:

My love and thanks to Whitney Abraham, Stephanie Hanna, Simi Botic, and Regan Walsh, Life Coach, for such a wonderful, candid evening – leading this full room of amazing women through conversations of motherhood, life, work, and mindset.

I reveled in the comraderie and felt we could have talked until dawn. I was touched by all the familiar, beautiful faces – thank you for coming out! Oliver gives his love right back at each and every one of you!


My Jen is a warrior woman! And Oliver is always going to know that he is loved beyond his family! How awesome is that?

All About Oliver

A Sanfilippo Story by Grammy L…

My daughter-in-law, Jennifer has a Facebook page entitled Oliver’s Tomorrow. I invite you to connect with her on Facebook.

On January 14th she posted this:

This past week has been emotional.

Oliver’s school celebrated ‘100 days of school’ – a popular tradition in schools right now. Part of that tradition is an age-processed photo of the children.

How I would love to see Oliver, an old, wrinkled-faced man.

When Oliver was 2.5 years, we listened to “A is for Apple” and “The Animals Sounds Song” in an endless loop. We would dance and sing and run around the room, and get especially silly when Grammy L was visiting.

Out of the blue, he’s been asking to play these songs again. He observes, with that sweet Oliver smile, and let’s Reagan and I do the singing and dancing these days.

Ahh, yes! We were silly! Oliver and I snorted and mooed, acted like animals, and twirled and danced. All of the dance moves were choreographed by Oliver! My favorite move was running to the wall in the living room, slapping the wall, and returning to “our spot” as we anticipated the next verse.

All About Oliver

A Sanfilippo Story by Grammy L…

This story is more than Oliver! It includes his whole family… Jen, Brian, and Reagan… Great-Grandparents, Grandparents, Aunts, Uncles, Cousins, Friends, Neighbors, Employers, the Cure Sanfilippo Foundation, Extended Family, Casual Acquaintances, and all of our children under its umbrella… And you! Thank you for becoming aware of this rare genetic disorder that steals the future from Oliver and his friends. And for letting me share with you precious, joyful, and candid moments in Oliver’s life.


This is my sweet love-love boy and his family today:


You see a happy family. And, oh they are! Lots of love, laughter, and living in the moment!

But behind the scenes, what you don’t see are the sleepless nights, the increasing hyperactivity, and angry outbursts that Oliver cannot control. You don’t hear his speech becoming harder to understand. You don’t witness him falling behind developmentally.

It’s hard to imagine that Oliver’s sunshine will fade away before he has a chance to grow up.

But for every Oliver there are so many more children affected by this rare genetic and metabolic neurodegenerative disorder. Right now there are 87 more of his friends on the Cure Sanfilippo Foundation website alone. And this is only one website, albeit a powerful one!


Glenn and Cara O’Neill created the Cure Sanfilippo Foundation in 2013 within 2 months after their daughter, Eliza, was diagnosed with Sanfilippo Syndrome, at the age of 3.  Glenn left his position in the corporate world and Cara gave up her practice as a pediatrician.

Cure Sanfilippo Foundation does more than raising funds for research and the development of treatments leading ultimately to a cure. The Foundation is a support community for Oliver and his friends.

As co-founders, Glenn overseas the Foundation as a business and a parent. He is the voice of support, love, understanding, and information when contacting him with the gut-wrenching diagnosis of your child with Sanfilippo Syndrome. He embraces you and then goes into super-warrior mode. He’s got your back and never ever lets you forget this. He walks with you every step of the way. You are not alone ever. He cares and unites you with the other families.

Cara runs the scientific side of the Foundation by overseeing research grants, developing relationships with biopharma, and creating the improvement of clinical management guidelines to better inform physicians and drug development companies of patient and family needs.

Since its inception, Cure Sanfilippo Foundation has raised over $5.2 million dollars and funded over 14 research programs around the world.

Check out Cure Sanfilippo Foundation to find out all about Oliver’s friends and learn more about this life-limiting diagnosis.

Hum, Hum, Hum, Hum, Hum, Hum

Hummingbirds…


Jeff and Harlan hike the Indian Palms Trail one morning…

and discover the purple blooms of the Fremont Box Thorn…

buzzing with bees…

courtesy of Tyler Goodearly 

and Costa’s Hummingbirds…

ebird.org (courtesy of Laura Ellis)

ebird.org (courtesy of Herb Elliott)


The next day Jeff escorts Elise, docent extraordinaire and birdwatcher, along the Indian Palms Trail to observe this phenomenon.  When she returns and reports this “charm of hummingbirds”, well it’s my turn to go see this for myself! I know exactly where the Fremont Box Thorn is located on the trail.

So, Harlan, Mary, Ginny and her friend Noel, and I head for the Fremont’s Box Thorn  to observe hummingbirds a day later…

Also known as Wolfberry, Lyceum Fremontii is a species of flowering plant in the nightshade family. Fremont Box Thorn is native to northwestern Mexico and the southern mountains and deserts of California and Arizona. It often grows in areas with alkaline soils, which are clay soils with a high acidic level, poor soil structure, and a low infiltration capacity. Alkaline soils contain a great deal of sodium, calcium, and magnesium. (gardeningknowhow.com /en.m.wikipedia.org)

The numerous native palm groves in the Coachella Valley Preserve are fed by water pushed to the surface by underground pressures from the San Andreas Fault. (Docent Don, our geology expert)


A minute later, after capturing these photos of Hummingbirds on my humble iPhone,  I look up and… wow! … I find this beautiful photo op I just can’t resist. The desert is filled with hidden wonders, subtle colors, and natural landscape architecture!


Meanwhile, back at the Fremont Box Thorn…

I am amazed that my iPhone can take such good pictures.

Costa’s Hummingbirds are small, short, and stocky- looking when perched or at rest. They are easily recognized by their vibrant iridescent blue or purple throat. Without appropriate lighting, they appear black and colorless. The female, of course, is quite bland. The Costa’s is a true desert-dweller and can be observed in the Coachella Valley throughout the entire year. (Anita K. Booth)

A “Paint Out”

On the Preserve…

Today a group of artists arrived with box easels and paint tubes for a “paint out” excursion.

I couldn’t wait to see what this meant and looked like!

It meant plein air painting and it looked like this:


The practice of painting “en plain air” or “in the open air” goes back for centuries but was truly made into an art form by the French Impressionists who were intrigued with capturing outdoor light and its changing ephemeral qualities.

On a clear, sunny day, 3 different sources of light are at work: the sun, the blue sky, and the reflected light from illuminated objects. So, to paint in direct sunlight it is important to understand that the sky and illuminated objects derive their light source entirely from the sun and should, therefore, be painted convincingly subordinate to its brightness.

On an overcast day, the layer of clouds diffuses the sunlight and eliminates the extreme contrasts of light and shadow. Overcast light allows the artist to paint objects in their true colors without dramatic contrasts of light and shade.

Painting outside is challenging because of the transient lighting and constantly changing atmospheric environmental conditions. Plein air paintings are prized for their spontaneity and freshness. (artistsnetwork.com)


Here’s an 1868 oil painting by the American artist Winslow Homer entitled, Artists Sketching in the White Mountains. His subjects… plein air painters, no less!

winslow-homer.com 


Artists have portrayed the landscape for hundreds of years. Landscape sketches were certainly turned into paintings in the studio, and many believe the artists could not have so accurately represented these scenes without having done some painting outdoors, on location. Leonardo Da Vinci and Rembrandt are thought to have painted outdoors, but this is more a conjecture than fact.

The first documented outdoor painters were Italian artist Agostino Tassi (1578-1644), who taught French artist Claude Lorrain (1600-1682), who is considered by many as the father of outdoor painting.

Agostino Tassi’s Landscape with a Scene of Witchcraft

commons.wikimedia.org

Claude Lorrain’s Pastoral Landscape

theartstory.org

Within the 16th Century the landscape itself became an accepted subject for artists. Pierre-Henri de Valenciennes (1750-1819) in France and John Constable (1776-1837) in England encouraged their students to go outside to draw and paint, working quickly against the changing light and rapidly moving clouds.

Artists known as the Barbizon School painted scenes of the everyday life of farmers in the fields of Barbizon, France from 1830-1870.

British-born Thomas Cole (1801-1848) moved to the United States in 1818. As he became a recognized landscape painter from New York, he founded the Hudson River School of painters, which was not an actual school but a group of artists. After his death, a second generation of the Hudson River School evolved and continued to paint landscapes on location in the open air.

In the early 1860s, 4 art school students in France convened in the countryside together to paint in the open air, but not for the purpose of making sketches, to later be developed into carefully finished works in the studio as was customary during the Barbizon movement. Claude Monet 1840-1926), Pierre-Auguste Renoir (1841-1919), Alfred Sisley (1839-1899), and Frederic Bazille (1841-1870) painted complete works on location. Considered rebels in the art world, these young painters had discovered that by painting in sunlight and making use of the vivid synthetic color pigments that had recently been invented, that they could produce a lighter and brighter style of painting.

At this time in Paris, however, an artist was not accepted or considered important unless his work was juried into an annual show of artworks called the Salon de Paris. Rejected by the Salon, Monet and his friends organized their own month-long show of their paintings.

During this show, Monet displayed his painting entitled Impression—Sunrise. (paintoutside.com)

nytimes.co

An art critic at that time reviewed this avant-garde exhibit of paintings in a local satirical newspaper of 1874. He derogatorily referred to the works of Monet and his friends as impressionism. As a result of this article mocking the artists, an estimated 3500 people attended the small show to criticize the works as well. But many ended up embracing the paintings, some of which were sold to those in attendance! Thus began the Impressionists’ style of loose, spontaneous brushstrokes that would soon become synonymous with modern life.

Theodore Robinson was the first American artist to visit Giverny, France where Monet built a home and his famous gardens after becoming a successful and wealthy painter. Robinson and Monet became great friends and painted together. After living next door to Monet for 10 years, Robinson returned to the United States where he heavily influenced the American Impressionist movement.

As Impressionism and plein air painting spread across America, art colonies popped up in:

  • Cos Cob and Old Lyme, Connecticut
  • Taos, New Mexico
  • Laguna Beach and Carmel-by-the-Sea, California
  • New Hope, Pennsylvania
  • Brown County in Indiana

Though the practice of plein air painting has never stopped, it seemed to die down for a few decades until a resurgence began, mostly in California, in the 1980s.

Today tens of thousand of professional and amateur artists have taken up plein air painting across the world. The movement has become a kind of sport called “the new golf.” (paintoutside.com)

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!

The Waaaaaaay Back

Pushing the Boundaries with Mary

Speaking of boundaries, this is the most confusing detail to get across to our guests! (And for me to understand as well.) The sign from the road says we are the Coachella Valley Preserve, but our RV is parked on the Thousand Palms Oasis Preserve. (And don’t get me started on the city of Coachella itself or the Coachella Valley Music and Arts Festival which is actually held in the city of Indio at the Empire Polo Club…)

visitgreaterpalmsprings.com

I like this map of the area too…

dogtrekker.com


The Coachella Valley Preserve is the bigger boundary.


coachellavalleypreserve.org

The Coachella Valley Preserve is not owned or managed by any single entity. It is  a model of cooperation between federal, state, and private conservation efforts for preserving sensitive natural areas:

  • Bureau of Land Management
  • United States Fish and Wildlife Service
  • California Department of Parks and Recreation
  • California Department of Fish and Wildlife
  • Friends of the Desert Mountains
  • Center for Natural Lands Management
  • Coachella Valley Conservation Commission
  • Coachella Valley Water District
  • The Coachella Valley Association of Governments

(coachellavalleypreserve.org)


Thousand Palms Oasis Preserve is the smaller boundary within the Coachella Valley Preserve.  The Center for Natural Lands Management (CNLM), founded in 1990 in California, is a nonprofit tax exempt organization that assures the perpetual protection of  the Thousand Palms Oasis Preserve by establishing stewardship endowments. CNLM protects sensitive biological resources through professional, science-based preservation. (coachellavalleypreserve.org)


Here’s what we look like on Google Maps:

Here’s what we look like on our map of trail systems:


So, with all this map stuff in mind, Mary, a tenured docent, took me, with our manager’s permission, on a trailblazing journey to the outer limits of the Thousand Palms Oasis Preserve.

At times we had to bushwhack our way through arrowweed and slide down a sandstone wall into the wash. But we had a blast as we giggled our way off trail. This is just one of the perks of volunteering here.

SO, PLEASE DON’T EVEN THINK ABOUT DOING THIS AS A VISITOR! PLEASE RESPECT THAT WE ARE A WILDLIFE NATURE PRESERVE!

PLEASE STAY ON THE DESIGNATED TRAILS! WE HAVE OVER 28 MILES OF HIKING ON THE COACHELLA VALLEY PRESERVE.

THANK YOU!

Just enjoy the pics from 2 silly, senior, sassy-assed gals, former schoolteachers I might add, having fun and enjoying the dazzling sights of the Sonoran Desert.


Pure unadulterated desert…

A smoke tree in the wash…


We finally arrive at the end of our CNLM property. Note the stakes in the pictures below.

Ahead of us, to the northeast is Dillon Road and Sky Valley.


We head southeast now toward Thousand Palms Canyon Road.

We approach the hills commonly referred to as “The Indian Fort”. I’ve only ever seen them from the ridge of the Moon Country Trail.

And now I get a closeup view from the base of the hills.


We head back now, but first I take a pic of the other side of the road…

And slowly capture some more photos of Indian Fort as we retreat…


The palm grove surrounding the Simone Pond appears ahead of us.

But first we pass through a small cluster of palms

Just look at this tree “druping” with palm fruit!


It’s tough being a volunteer here. But somebody has to do it! 💜

And speaking of doing it… I am currently researching the history and life of the Native Americans who first lived in this magical sacred place that I now have the privilege to call “home” for the winter just as their tribe did centuries ago. I look forward to sharing what I learn.