All About Oliver (and his family)

A Sanfilippo Story by Grammy L

A BUSY DAY IN MARCH…

Mom and Dad get their first dose of the Moderna COVID vaccine.


Mom works on the front porch project, installing the floor…


Frankie and Stephanie visit from ABA Therapy (Applied Behavior Analysis), an in-home service for Oliver.


Miss Kelsey visits Reagan…


Reagan has a “sleepover” with Grammy L downstairs…


A great day living and enjoying each moment! (Even if behind the scenes we are sometimes having difficult feelings…)

All About Oliver

A Sanfilippo Story by Grammy L

SHOWING OFF

Jen created a muscle and sensory area downstairs for Oliver and Reagan.


But the best snuggles of all are the ones at the end of the day in our jammies…

All About Oliver (and his family)

A Sanfilippo Story by Grammy L

We ring in another new year filled with cautious hope that we can reunite with our families soonish.

That’s right, Oliver… 2020 was a booger of a year!

2021

My New Year’s Resolution is to fly out to Ohio ASAP!

Meanwhile, here’s what’s been happening yesterday, today, and tomorrow with Oliver…


On January 6th, Governor DeWine signed a bill designating November 16th
as Sanfilippo Awareness Day in Ohio

Jen updates the profile picture for Oliver’s Tomorrow on Facebook.

“Every day given is reason enough for joy.” …Oliver’s Mom

Sundays at Magaw’s… (Jen’s Mom)

And Valentines (courtesy of Magaw) sent to me in California from Reagan and Oliver…

And here’s a shiny reflection from all the colorful stickers on the ceiling in the RV:


Speaking about Valentines Day…


Oliver’s Kindergarten school picture…


And finally, my longed for wish comes true! On March 16th I land in Columbus, Ohio and see and hug and play with my love-loves in person!


Jeff and I had received our first dose of the Moderna vaccine and I made an appointment for a rapid COVID test immediately upon landing in Hilliard, Ohio… I flew Southwest from Palm Springs to Phoenix to Columbus…

So good to be “home” with my family!!!

All About Oliver

A Sanfilippo Story by Grammy L

“I knew this day would come…”

Jen shares…

“I knew this day would come, and I know the day has long passed where Oliver’s younger sister Reagan has become the big sister. We often find ourselves asking Reagan to give Oliver a chance to answer questions on colors, letters, sounds, counting. I ask her to slow down singing her ABCs so Oliver can add a few letters to the song. These were all things he knew when he was two.

When he initiates play by taking her stuff, when he pulls and tugs and wrestles her with no sense of safety, she takes it in stride.

She says she’s a ‘capable girl’ – she has no idea the depth of her strength that she has and will continue to need. Her love for Oliver asks for nothing. They root fiercely for each other. They love fiercely for each other.”

February on the Preserve

Cutting a Trail in the Wetlands and Tagging Tamarisk Trees


Tamarisk trees aka salt cedars are not native to California or the American Southwest. These wispy bushes and trees with pretty feathery pink flowers attract bees, dragonflies, and hummingbirds. But they are also a scary sight, so scary that Matthew Chew, an Arizona State biology professor calls them monsters. (smithsonianmag.com)

Tamarisk were brought into the United States from Europe in the 1800s, with the approval of the federal government, to help control erosion. As the plant established itself along stream banks, nature conservancy groups discovered its harmful effects of sucking large amounts of valuable water from the ground, turning desert streams and ponds into salty dry basins. Tamarisk consumes so much water and takes over spaces where grasses to feed cattle grow. The tamarisk is now listed as an invasive plant by the U.S. Department of Agriculture. (smithsonianmag.com)

selectree.calpoly.edu
arizonesis.org

Last spring and summer, Jeff and I pulled tamarisk seedlings and small bushes along the stream behind Squaw Hill and across Thousand Palms Canyon Road heading south toward Washington Street.

And we continued “streaming for tamarisk” throughout this season (October through April) always on the lookout for trees in the wash or camouflaged in the brush. Tamarisk seedlings were always present!


When Ginny asked me if I would like to help her blaze a trail through the wetlands, parallel to the McCallum Trail, to access invasive tamarisk trees… I jumped at the chance to participate! She used a power saw to chop through small trees and roots while I followed her with trimmers to whack away the overhanging reeds and help stomp down the rest that cushioned our pathway over the water.

We discovered our efforts were being supervised by…

Can you see who?

Who…hooooooooo is a long-eared owl!

There’s always something unexpected and exciting around the corner on the Thousand Palms Oasis Preserve!


And always something dependable and educational on Sunday mornings…

Docent Don explains the geology of the Oasis Preserve caused by the San Andreas Fault on which everyone is standing.

A New Year Dawns in the Desert

Welcome 2021!

On January 1st, Jeff and I take a drive to Dos Palmas Preserve, another CNLM habitat managed by our boss, Ginny Short…


Unfortunately, we never made it into the Preserve because the hike in was about a mile from the parking area and Jeff’s knee was not up to walking this far…

Fortunately, I captured this great picture…

Salton Sea

January Sunrises…

And Sunsets…


Jeff’s Pandemic Haircut… with his beard trimmer!

Not too bad…
Well, maybe not too good…
Oh my…
Yikes!

Snow-Covered Mountains…

All About Oliver

A Sanfilippo Story by Grammy L…


On January 6, 2021, Governor Mike DeWine signed House Bill 32, the larger bill that Senate Bill 275 was added to, recognizing November 16 as Sanfilippo Awareness Day in Ohio forever.

Woohoo Jen and Brian! This bill happened because of you.
You have so bravely been sharing the story of Oliver’s tomorrow.
And people have listened and responded in amazing ways!

In October 2019, Oliver’s Sanfilippo Syndrome diagnosis was confirmed. Our hearts stopped beating.

“Sanfilippo is a terminal, neurodegenerative disease that causes children to lose all the skills they’ve gained, suffer seizures and movement disorders, experience pain and suffering, and then die. Simply put, it is like Alzheimer’s in children.” (Glenn O’Neill… Dad, Donor, and President of Cure Sanfilippo Foundation)

How could this be the fateful future for our love-love boy… a single gene defect? Genetics can be cruel. Oliver’s little body lacks one necessary enzyme… one! But this missing enzyme creates

a toxic buildup in every one of his cells. This toxic storage is especially harmful to his brain. Currently there is no FDA-approved treatment or cure for Sanfilippo Syndrome.

Our family cried, hugged, cried, mourned, cried, grieved, cried, collapsed, cried, reached out, cried, found support, cried, picked ourselves up, dried those tears and turned them into more controllable sniffles… and went into action mode sharing Oliver’s Tomorrow and spreading an awareness of Sanfilippo Syndrome.

At this time Oliver attended Christ Lutheran Children’s Center Preschool where the staff, teachers, and administrators sponsored a Sanfilippo Awareness Day on November 16th. The school called all the parents in Oliver’s class and purchased purple Sanfilippo shirts for all the children to wear. It just happened that Dave Salisbury, who works in government relations, had a daughter who attended preschool at Christ Lutheran. (I know what you’re thinking!) And yes, Dave got the ball rolling to expand the arena of Sanfilippo awareness from the community to the state of Ohio.

And this is where Frank Strigari came into the picture…

Ohio Senate Chief Legal Counsel

Frank and Brian attended high school together in Cincinnati and was in Jen and Brian’s wedding. (And now you get the bigger picture…)

Oliver’s diagnosis inspired Dave Salisbury and Frank Strigari to leverage their professional expertise to get November 16th officially recognized as Sanfilippo Awareness Day in Ohio. State Senator Stephanie Kunze agreed to sponsor the original bill, Senate Bill 275, having learned about Sanfilippo Syndrome a few years before at a local constituent’s lemonade stand fundraiser for Cure Sanfilippo Foundation. The cause touched her heart then and now she was inspired to follow her heart.

State Senator Stephanie Kunze (R-Upper Arlington)

Glenn O’Neill, Dad, Donor, and President of Cure Sanfilippo Foundation participated, via Zoom, in the virtual bill-signing ceremony, along with Jen and Brian.


”This bill is a great reminder of the power in every single action, every effort to spread awareness… Thank you to Dave, Frank, and Sen. Kunze for all the work you did to make this bill a reality… And to each and every one of you who keep spreading awareness about this terrible disease. Every action, every moment makes a difference. And it means the world to all of our families.” — Glenn O’Neill

Ditto that from Grammy L…


A few days later, Jen and Brian received a handwritten note in the mail from Governor DeWine.

2020… Here’s Lookin’ At Ya

Most blog posts are ordered newest-oldest, but I am not your ordinary blogger. Actually, I am not a blogger at all. I am just me, “Wandering Gypsy Laurel” aka Grammy L, preserving an online journal of my adventures with my husband Jeff as full-time RVers for the past 5 1/2 years now.

So… here is a list of all my 2020 posts in chronological order. This is more for me, and maybe my family, than anyone else as this blog site serves as my online journal. And someday I will revisit our 5 years-plus homeless adventure living in a tin can:

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!