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.
Jeff and I first visited Amboy Crater, located on public land managed by the Bureau of Land Management, in July during the triple digit heat of summer. Today we return for a proper hike into the cone itself to explore the caldera and hike to the rim.
This National Natural Landmark, an anomaly of black rock rising in the earth-toned desert, is formed of ash and cinders. It is 250 feet high and 1,500 feet in diameter. The crater is situated in one of the youngest volcanic fields in the United States. It is located in the Barstow-Bristol trough, an elongated tectonic depression running west-northwest, which approximately straddles the boundary between the Mojave Desert and Sonoran Desert tectonic blocks.
To get there from where we live in the Coachella Valley, we take Thousand Palms Canyon Road north to Dillon Road and head east on Highway 62 toward Twenty Nine Palms past Joshua Tree. We turn north (left) on Godwin Road and east (right) on Amboy Road. Amboy Crater is about 45 miles from Twenty Nine Palms. We cross Bristol Lake, once a prehistoric sea, now a dry lake mined for the calcium chloride used to de-ice roadways in colder climates. (desertusa.com)
The volcanic field was created by at least 4 distinct periods of eruptions, resulting in a coaxial nested group of cinder cones. (I understand this to mean that the group of nested cinder cones share the same center or axis.) The most recent eruption of Amboy Crater was about 10,000 years ago. The lava flows consist of basalt rich in minerals of magnesium, iron, and calcium. If you look closer, you might observe minute green-colored olivine crystals. The red color indicates the presence of ferric iron, the result of steam on heated rock. (from kiosk in parking area)
The trail to the crater is only 1.1 miles from the parking lot/day use area. This well-marked trail leads to the west of the cinder cone, taking you to a wide opening where an explosive eruption breached the crater wall. From here you can descend into the caldera and/or climb to the top. Round trip, the trail is about 3+ miles, depending upon how many trails you descend and ascend within the cone before returning to your car.
The trail leads you through sand and lava fields:
Up close and personal, the crater is less intimidating. (I know it looks like there is a trail here leading to the rim. Trust me, this is not the way up…)
The trail wraps around the back to the right and then starts to head up. Here the uphill is steep and uneven but fortunately this part is a rather short climb.
Once you climb up, you are inside the crater.
Four trails lead up to the ridge.
Naturally, Jeff and I choose an “iffy” and steep trail to the top. These pictures are deceiving in that the trail looks well-established and an easy climb… NOT in my humble opinion. I am scared to look down. I am scared to lose my footing. I am just plain scared. I end up crawling my way to the top, latching on to any secure rock I can find.
Whew! I hug the ground when I safely make it to the rim! Then I stand up. And look back down.
More views from the ridge…
Here we descend into the caldera again on the most friendly trail.
I pause and look back up to the top…
And down again…
One last curve…
And we are in the caldera. I look back one last time…
And we descend onto the trail leading back to the parking area.
We walk back toward our car and turn around for a last close-up and personal look at Amboy Crater.
Looking ahead again, a train runs parallel to Route 66.
Amboy Crater is so worth the “off the beaten path” drive! There is no shade or civilization at all as you travel through the desert. The feeling of solitude is intense, but welcoming, if you know what I mean. But if you need to feel connected again, head to the town of Amboy before returning back to Twenty Nine Palms. Look for the giant neon sign on Route 66 that advertises Roy’s Motel and Cafe.
The exact population of Amboy, originally founded in the 1850s by salt miners, is less than 10. It was the first stop in a series of railroad stations constructed across the Mojave Desert in the late 1800s. In 1938 Roy’s Motel, named after Roy Crowl, opened as a rest stop for travelers, the only respite from the desert heat for miles and miles around. With the rise of automobiles, Roy’s Motel included a gas and service station. At it’s heyday, the town of Amboy, owned by Herman “Buster” Burris, had a population of 700. Buster eventually sold the town and moved away. Albert Okura, a businessman, Historic Route 66 activist, and philanthropist purchased the town of Amboy in 2005. (roadtrippers.com)
According to desertusa.com, Amboy is a time capsule of 1950s Americana. After Albert Okura purchased the town for $425,000, he has slowly been restoring it. Roy’s is open for gas and there’s a little store where you can buy water and a postcard and use the restroom. On November 16, 2019 the iconic neon lights of the Roy’s Cafe & Motel sign were lit after 20 years of darkness, lighting up the roadway again for travelers on Route 66. In the future there are plans to restore the 20-room hotel and 6 bungalows.
“There is an old cemetery, a church and a post office nearby — all closed now — but the grave markers remind us of the history and the residents who used to live there.” (desertusa.com)
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.
…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.
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:
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.
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)
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)
The Mesquite Trail continues along the stream through a marsh habitat…
… 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.
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…
“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.
Even dead trees add color and ambiance to the desert habitat…
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.
*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)
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:
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.
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.
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.
“Is it bad?”
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.
It’s the eve of the 1-year anniversary of Oliver’s diagnosis. Before we had a name for what Oliver was experiencing, we lived in a state of anguish and confusion.
Simply having one parent take two kids around the block proved too challenging most days. I remember telling a co-worker I couldn’t take both kids to the zoo by myself, and he said “What? You gotta work on that.” He didn’t mean anything by it, neither did loved ones saying we disciplined too much, too little, not the right way, or telling me that trick that worked that one time with Oliver.
I remember going to a kid’s birthday party with Oliver. When the kids went upstairs to play, I panicked having Oliver be out of my site in case he had a meltdown and hit another kid or destroyed a kid’s toys. I felt weird, though, inviting myself upstairs in their house. I stood awkwardly at the bottom of the stairs. And when he did have his impulsive meltdowns, I always quickly scooped him up and tried to get him away from where ever we were. I could often see the parent’s face saying, “What happened?” I couldn’t explain it. I also didn’t know the extent that my child was so much different from other kids. At that same birthday party, when I went upstairs, with inklings of Oliver starting to escalate, my first reaction when I saw the kid’s bedroom was amazement—there were toys?! How does the child not throw/break/eat them?! There was a GLASS vase?! GLASS?! GLASS?! That wouldn’t last 5 minutes in Oliver’s room…
And school, Brian always dreaded pick-up, as there were always the required incident reports he had to sign. Sometimes multiple in a day. I remember one time in particular, I was talking to the teacher as I dropped Oliver off, and he went right over and dumped a box of felt toys on an unassuming little girl playing by herself. His school was endlessly patient and loving, but I didn’t have any fixes for the problem. I felt like such a failure.
With the vast network of Nationwide Children’s, Brian and I attended regular behavioral therapy sessions, then moved to Mental Health services. I did an online Positive Parenting course; I plastered the walls with these visual charts to help Oliver identify his feelings and choose an action item to help him feel better. We did time out, we did time in, we did breathing. Shortly before diagnosis, I holed up one weekend with an armload of behavior books from the library. That weekend, I self-diagnosed Oliver with Oppositional Defiant Disorder and wallowed thinking how he could be so train his 4 years on Earth. I uttered more times than I can count, “What are we doing wrong? How are we such parenting failures?”
Yes, one year tomorrow, the confusion was replaced by grief. Deep, agonizing grief. However, this grief came with a community. We belonged. The confusion kept us in a state of “What are we doing wrong?”. The grief gave us names and faces of families who were celebrating the good moments, navigating the murky days, fighting with every fiber of their being for a cure, and selflessly sharing their experience to help others navigate this journey,
Receiving the clinical trial gene therapy treatment means follow up tests and visits to the hospital for Oliver.
Three really long days for Oliver this week. He was able to come home each evening and play and spend each night snuggled with us. He knows the hospital and let’s me know I missed the garage entrance. We have familiar faces there who know how to find Paw Patrol for him. And he’s charmed all the incredible nurses who know him from his blood draws. He says ‘thank you’ and ‘hello’ to the valets and doctors. And he still hates that bandage with the red dot, always refusing it and suggesting ‘maybe later’.
Our boy is tougher than nails and sweeter than pie!