December 2020 Fades…

Into 2021

The sun sets….

The moon rises…



The last day of the year shines down on the Preserve…

And in Ohio…

And in London…


And finally fades on the Preserve…


And an evening video chat with Texas ends our last day of 2020… Happy New Year to us all!
May 2021 bring us kindness, healing, and togetherness!

I’m Dreaming of a…

Nope, not a White Christmas…

We live in the Colorado Desert, part of the Sonoran Desert extending southeast from California to northern Mexico. The Colorado Desert is the lowest, hottest, most arid region of the Sonoran Desert. Wishing for snow is non-negotiable unless hell freezes over. By definition, a desert receives less than 6 inches of rain per year. The desert in Southern California barely receives 4 inches per year. 😳

So, taking liberties with Irving Berlin’s bestselling “White Christmas” song, please bear with my desert adaptation set to the tune of his iconic holiday classic:

I’m dreaming of some rain on Christmas,

So that flowers bloom and grow.

And later in the Spring,

The blossoms shall bring,

Colors delightful to show…

I’m dreaming of some rain on Christmas,

With every week that passes by.

May the mountains be snowy and white,

And melt down to make the desert bright.


And then… what to my wondering eyes did appear?
A sudden rush of dark clouds, And 8 raindrops right here!

Ah, every raindrop has 15 minutes of fame, to paraphrase Andy Warhol… Not long after Jeff and I did our happy dance, the sky’s canvas brightened into a muted sunset.


Merry Christmas! Happy Holidays! Whatever you prefer… I realize I say Merry Christmas but I really mean Happy Solstice that we celebrate. Somehow this whole year had been a winter solstice hanging over our heads. But, for now, let’s be children again and look forward to bright surprises dropped down the chimney or brought by Hanukkah fairies or shared on Zoom calls with our families.

Lots of Love to All, and to All a Goodnight!

When Jupiter Aligns With Saturn

A Special Solstice

Jeff and I drive to Joshua Tree NP to watch the sunset and observe the “great conjunction” aka, the closest alignment of Jupiter and Saturn since July 16, 1623, a little more than a decade after Galileo first used a telescope to discover Jupiter’s 4 largest moons. Unfortunately, because of the planets’ position to the sun, this great conjunction was virtually impossible to see. So that takes us back to March 4, 1226, when Genghis Hahn was still roaming Asia, as the last time the planets were this close and as visible. (scientificamerican.com)

What makes this event even more special is the fact that is taking place on the Winter Solstice of 2020.

We enter the NP from the west entrance around 4:00 and are surprised that the rangers are just ushering all cars through. Jeff heads to Keys View overlooking the San Andreas Fault and Thousand Palms Oasis where we live right now. (We packed sushi, olives, cheese, a baguette, and nuts to eat when we arrive, but snacked on them on the drive up to the high desert.) Apparently lots of other people decided to choose this spot too.


We find a makeshift parking spot and ascend the walkway…


We hear a beautiful voice singing “Oh, Holy Night” and then “Ave Maria”…

So special and such a clear, angelic voice… Wow!


I start taking pictures of the setting sun…

And the Salton Sea…

And the moon…


A shared heavenly experience… And a shooting star! While Jeff was looking at Mars through his binoculars, I saw a shooting star approach the two planets, visible with the naked eye. A collective, “Ahhh” erupted…


That’s the Coachella Valley below and the lights are from Palm Springs. The road riding into the sunset is Interstate 10.

And here’s a view of Palm Desert and some of the other desert communities…


It gets darker…


And finally, it’s dark enough that I can capture the 2 planets with my iPhone… look closely…


The next rendezvous, according to scientificamerican.com, where Jupiter and Saturn are separated by just six arc minutes will arrive on March 15, 2080.

All About Oliver

A Sanfilippo Story by Grammy L…

CAPTAIN HUGS



THE SUPERHERO PROJECT

Lisa Kollins launched the Superhero Project in 2016. She interviews children with challenges to learn about their inner superhero qualities, then connects with professional artists across the world to bring the character to life.

The Project began when Kollins volunteered as a program specialist at Camp Sunrise, a former camp for children who were affected by HIV and AIDS, near Cincinnati, Ohio. In 2015 she asked all the children to describe what their superhero alter-egos would be like. She then arranged for artists to draw quick sketches and presented the children with depictions of their superhero characters in a slide show at the end of the camp.

Within 20 seconds I was weeping, half the counselors were crying, and the kids were just going nuts. I had stumbled into something more powerful than I could imagine.

Lisa Kollins

…Too powerful to be a one-time thing… (cleveland.com)

So Kollins spent a year developing a plan for her Superhero Project transforming children into superheroes with vibrant posters created by artists from around the world. And she does all this in her spare time. By day she is an administrator at the Social Justice Institute at Case Western University. (thedaily.case.edu)

It’s important, I think, to recognize that every kid deserves to see themselves reflected or depicted in a positive way. People are marginalized in our society for a lot of reasons—for race, for disability, for illness, for class, for education—and it’s really wonderful to have the opportunity to create these characters that really reflect the spirit and the soul of the kids I meet. It’s an honor and a privilege that these families allow me into what, for some of them, are the worst moments of their lives. I know some of the kids that we’ve interviewed have passed away after our interview. It’s a privilege to walk with these families for a short time and to bring some joy into a really difficult time.

Lisa Kollins

Oliver’s mom saw Will Byers’ superhero picture posted on his Sanfilippo Facebook Page, Willpower. His mom, Valerie, encouraged other families to reach out to the Superhero Project, so, Jen did.

And Lisa quickly responded and set up a time to talk with Jen on the phone to learn about all the wonderful qualities that make Oliver a bonafide hero. Jen described his love of books, getting kids their water bottles as they left preschool for the day, giving big hugs, his love for Larabars, Paw Patrol, his love for his little sister, his big smile, his enjoyment of being chased, playing at the playground, going down the slide, snuggling, giving Eskimo kisses, how he loves the letters of the alphabet, knows everyone’s names and who belongs with who… well, he is just a bundle of love! Jen sent Lisa some photos as well. They decided that his superhero name would be ‘Captain Hugs’, originally coined by his teachers at Christ Lutheran Preschool for a similar project…



Lisa composed the story of Captain Hugs and Ana Gusson drew the superhero poster:

A kind soul, a silly spirit and a tough-as-nails attitude — Captain Hugs has it all! This brave superhero inspires people with his strength and courage. He works every day to make the world better for other kids, whether he’s beaming his beautiful smile, sharing story books or helping find a cure for Sanfilippo Syndrome. Captain Hugs flies through the air, powered by his determination and a never ending supply of LARABARS. He passes them out to whoever needs an extra energy boost, along with one of his famous hugs. Nothing makes Captain Hugs happier than making other people smile and rooting for them when they’re being funny. Truly his joy and sweetness are a gift to the world!

written by Lisa Kollins, designed by Ana Gusson, inspired by Oliver (age 5)

Big Morongo Canyon Preserve

Within the Sand to Snow National Monument*

Nestled among the Little San Bernardino Mountains, this desert oasis is one of the 10 largest cottonwood and willow riparian (stream) habitats in California. The Preserve is an internationally-recognized birding site. It includes 2 desert vegetation zones: the Mojave and the Sonoran. The lush vegetation of Big Morongo Canyon stands in sharp contrast to the surrounding desert slopes. A high water table in the canyon has made possible the growth of tall trees in a desert climate. (bigmorongo.org)

Big Morongo Canyon Preserve is located in the Morongo Valley, a community between Palm Springs and Joshua Tree National Park.

bigmorongo.org

The Preserve entrance is located off of State Hwy 62 on East Drive. Adjacent to the parking area is an information kiosk. On the ceiling are pictures of the various birds you may see inside the Preserve painted in their actual colors, as if you were looking up into the air and seeing the bird fly over. On the ground floor, beneath each flying bird, you’ll discover each bird’s own unique shadow. This shadow is how the ground animals recognize which predator lurks in the skies above. (bigmorongo.org)

bigmorongo.org

All trails begin at the Info Kiosk.

Trails range from 3 tenths of a mile to an 11-mile round trip hike. Elevations on the Preserve range from 600 feet on the canyon floor to over 3,000 feet at the ridge tops. The Morongo fault running through the canyon causes water draining from the surrounding mountains to form the creek and marsh habitat. (bigmorongo.org)

This color-coded map sets the trails apart and also offers a one-way COVID-19 compliant loop to follow:

We take the Marsh Trail to the Mesquite Trail where we pick up the Marsh Trail again and complete the Desert Willow Trail. And then we complete the entire loop of the Marsh Trail. We will return another time to “take the high road”of the West Canyon Trail, Canyon Trail (maybe), and Yucca Ridge Trail.


Here are pictures from our hike:

The Marsh Trail meanders over and along a stream under Fremont cottonwood trees, red willow, and white alder. This wetland area supports the 2nd highest density of breeding birds known in the U.S.. (bigmorongo.org)

left to right: willow, cottonwood, alder (I think?)

The Mesquite Trail continues along the stream through a marsh habitat…

snow-capped San Gorgonio Mountain rises in the background

… then briefly travels along the base of the Yucca Ridge…


A large outcropping of ancient gneiss rock, along this trail, is the result of the Morongo Valley Fault.

A post-war Ford, supposedly pushed off a cliff above, and pummeled by a large gneiss rock… (timingtower.com)

More views of the Yucca Ridge…


Boardwalks along the trails are environmentally appropriate. Composed of 60% recycled plastic milk containers and 40% sawdust, they last longer than wood. (bigmorongo.org)


An airy canopy of twisted limbs and branches…

This mistletoe is a perennial parasite that invades the bark of some desert trees and shrubs
where it takes in water and nutrients to survive…

“Spikerush” growing along the trails can grow to 7 feet high. When the stems can no longer support themselves, they tip over forming a dense ground cover providing small animals a home and protection from predators. (bigmorongo.org)


The Desert Willow Trail is a dirt trail wandering through open fields and honey mesquite thickets that drop down into a desert wash.


More mistletoe… Notice how green it is.

On Thousand Palms Oasis Preserve the mistletoe is red and found clinging to mesquite bushes.

The non-sticky berries ripen in winter and are a feast for birds.
Mistletoe fruit becomes sticky in the birds’ digestive tracks, allowing the seeds to stick to the bark of the host plant and germinate.

Even dead trees add color and ambiance to the desert habitat…


Mojave yucca

Fourwing saltbush
…a closer look

Cool views…

Yep, more mistletoe…

And now we are back where we started, outside the Visitor Kiosk, as we retrace our steps and complete the Marsh Trail, a 6-foot wide boardwalk trail accessible to everyone who is other-abled. There are 3 decks for relaxing along the .65 mile trail.

California fan palm, washingtonia filifera
Old cottonwood leaves still clinging to the branches paint the tree in fall colors.
The “all accessible” Marsh Trail with boardwalk and bench…
The view from the Jess Sherwood Memorial Deck…
A California fan palm takes root…

*Sand to Snow National Monument

Established by President Obama on February 12, 2016, the Sand to Snow Monument stretches from the sands of the Sonoran Desert to the top of San Gorgonio, the highest mountain in Southern California. With an area of 154,000 acres, Sand to Snow ranges from 1,000 feet to 11,000 feet in elevation. It protects a wildlife corridor connecting the San Bernardino National Forest/San Gorgonio Wilderness area, Joshua Tree National Park, and the Bighorn Mountain Wilderness area. (desertusa.com)

courtesy of desertusa.com…

All About Oliver

A Sanfilippo Story by Grammy L…

Oliver’s Mom writes:

Enjoying these leafy, Fall days with Oliver. He knows how to add a splash of brightness to overcast days. He loves nothing more than to go outside and explore.


And a bike ride to the park…

Reagan and Oliver play hide and seek. (I capture these images from Jen’s video so they are quite blurry…)

All About Oliver

Following Diagnosis Day…

Oliver’s Mom, Jen, writes…

Following diagnosis day, Brian and I met with the Geneticist. The doctor was so loving, and even she’d some tears with us. He said there were reasons to be hopeful. There were clinical trials underway for Sanfilippo Syndrome Type A and Type B that he believed would improve both lifespan and, most important, quality of life. Life. More hugs, more laughs, more meals together, more playing chase, more “Ugga Mugga” Eskimo kisses, more hand holding, more snuggles. He gave us great hope that Oliver’s story isn’t written yet. His words carried me, gave me strength, filled me with hope. There was significant medical progress for his Sanfilippo Type.

I also remember all the brave parents in my new community who reached out and offered their support. I remember one parent saying, “The beginning is SO HARD.” I needed to hear that. That it doesn’t get progressively harder but instead, you’re hit by a truck, and then hold on for dear life over the rocky terrain. I remember seeing a beautiful mother with a photo of her and her friends. She was smiling. It encouraged me that one day, I’d smile again. I remember a dad Michael Dobbyn adding a 💪 emoji to all of his posts, and I needed every one of them. There was strength and even lightness that I so desperately needed.

For that dad, when he got hit with the truck, he was told there were no clinical trials for his son’s Sanfilippo Type C. His son Connor is fighting for his life. As his dad says, “He’s just all love, it’s all he has in him.” Another Sanfilippo child running at the Speed of Love. And a parent running at the Speed of Love to save him. If you have it in your heart, please watch, please share his video:


All our love for continuing to be with us.

It’s a beautiful Fall day in the neighborhood!
The ONE and ONLY Aunt Jess reading to her nephew and niece…

All About Oliver

The Anniversary of His Diagnosis

Oliver’s Dad writes…

On this day, the anniversary of his diagnosis, I wanted to share my thoughts with everyone who has shared our journey and supported us along the way. There are so many people to thank and if I listed all of you, I fear you might stop reading from the long list! So, I won’t do that. But what should I share? I have so many thoughts and reflections and emotions — there is no singular place to start.

This is a heavy duty day. I remember the crying phone call from Jen in my office— seconds before my very last moments of blissful normal life. The only words were: “Come home now.” The drive home, not knowing anything, but knowing it was bad, but hoping, begging, it was not that bad, strangely wanting the drive to be longer, delayed. I mean, how often I wish he had something that was not life-ending . . . those, those thoughts don’t leave.

They root.

They endure.

But you can’t let them take over. And I don’t. And we don’t. You prune. You cut back. You weed. Of course, you make sure to never mulch or soil. A certain narrative, as they often do, oh the stories I have in my head seem countless, has bubbled up. It’s simple. It’s pure. And so, I just thought I would let you know about Oliver and his super strength because it’s an absolute privilege to spend every day with him, spend every struggle with him, spend funny moments with him . . . be his dad.

One of the most coveted phrases in the English language is the three-worded “I love you.” I prefer a fourth-word phrase that Oliver likes to tell friends and strangers: “This is my dad.” Oh, if you could only know because he’s beaming, and he’s pointing and not everyone can understand what he’s saying.

This is not a statistically proven fact because there is yet to be invented such an instrument that can measure it, but believe me, when there is, the results will tell you that Oliver runs at the Speed of Love. With that, I have no doubt.

He loves baths so much that if you don’t watch close, your kitchen ceiling will start leaking.

He loves movies so much that he shrieks at impossible decibels at his favorite parts.

He loves the outdoors so much that he will run outside . . . even if there is snow on the ground . . . even if he doesn’t have a jacket on . . . even if he doesn’t have shoes on . . . even if he doesn’t have socks on . . . even if it’s still dark . . . even if it’s 5:30 in the morning.

He loves people so much that he always says hello to anyone walking by and asks “what’s your name?” — always.

He loves his sister so much that the main way to tell her is in a HUGE tackling-hug. And he loves telling me ‘that’s my sister, be nice’ if I am trying to discipline Reagan.

He loves his family so much that he points to pictures around the house and says “that’s my family.” He smiles with pride. It’s infectious.

He loves school so much that he runs into the building, backpack bouncing, water bottle erupting, lunchbox jostling, him almost tripping, up the steps.

He loves life so much that to him there is nothing better than looking at one of his favorite books, in the sun, munching on a piece of pepperoni.

He loves people so much that he tells the nurses at Nationwide (Children’s Hospital) ‘thank you’ after they are finished with another one of his numerous blood draws or procedures; and this is after all the screaming. What a tough kid. What a brave boy. What a compassionate kid. My personal hero. I shall never have another.

He loves . . . he loves all of you, he loves being here, he loves being present, he loves being hugged, he loves giving hugs, he loves being where the action is, he lives trying to help, he lives saying “I love you” at the end of the day, and in the middle, and in the beginning and all of those many, many, many times in between. I will stop here. I am crying and I fear my list is getting long.

We need more people like Oliver in this world. Wouldn’t it be so healing and curing if we just said I love you more and accepted things for their good? It’s truly unconditional. It is not an easy love but it has sheer muscle and it breathes and it is relentless — oh dear God is it unstoppable.

Why then do these special people with Sanfilippo get such little time? Maybe all this active love actually breaks their heart. I think that it is not surprising that Oliver’s favorite color is Red.

I also think that it is wondrously fitting that his name is in fact, Oliver. Quite telling really. Rearrange the letters if you will. I see: I, Lover.


All About Oliver

One Year Ago…

Oliver’s Mom writes:


A year ago today was the worst day of my life. Oliver and I were simply going to an initial genetics appointment for what I thought was ‘ruling things out.’ I had no fear, no concerns going to this appointment. I answered endless questions about his history — when he started sitting up, walking, talking… his difficulties sleeping, his constant congestion, and eventually some of the regression we had seen. The doctor asked me to pull up photos of Oliver at different ages. I was happy to flash photos of his ear to ear grin at different ages. The doctor left the room and came back several times. Finally, he came back with a packet for me to take home and read. As I held it and listened, I heard “Sanfilippo” for the first time. I didn’t grasp what the missing enzyme… the accumulation of GAGs… the neurons dying…meant… I didn’t understand the magnitude, but I could tell by how slowly he spoke and his kindness in delivery that it was bad. I couldn’t form the words to ask, “Is this life-shortening?” When he left the room briefly again, I flipped through the packet, desperately searching for “Lifespan”. There it was…

“most children die in their late teens.”

I heaved big sobs and clung to my sweet boy. When the doctor came back in, Oliver held my crying face in his hands and looked at the doctor and said, “My mom needs a nap.” He said it over and over, showing love for others as he always, always has.

The doctor wanted to give Brian a chance to talk to him, so we set to meet again the next day. I waited in the lobby with Oliver for a blood draw that would eventually confirm that he had Sanfilippo Syndrome Type B. I texted Brian that we had an appointment the next day. When he texted me back, “Sure. How’s Oliver?” I couldn’t respond.

Oliver and I went home. It was a beautiful fall day and Oliver and our dog, Faelan, played in the backyard while I called Brian.

“Come home.”

“Is it bad?”

“Yes.”

I waited for Brian, as I watched my beautiful boy, so happy, so happy, so full of life, running, laughing, throwing the tennis ball around.

I don’t remember much more about that day, except holding Oliver and crying. Reading the packet through tears, everything matching up — even physically — the coarse hair, the thick eyebrows. I googled Sanfilippo and my screen filled with photos of children who looked just like my son. His Sanfilippo brothers and sisters who would journey together — through losing their ability to speak, losing their ability to walk, suffer pain and seizures until they join the Sanfilippo angels that have gone before them, gone too soon.

But here he is today, looking for his friends — enjoying today for what it is — a gift.

Oliver waiting for his school friends to arrive on the bus…