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…

Oops… I meant to post this quite a while ago!

The Columbus Blue Jackets hockey team is having a game day for Oliver Friday, February 28th. They play against Minnesota Wild. Portions of the proceeds from tickets purchased through bluejackets.com/oliverstomorrow will go to The Cure Sanfilippo Foundation to help fund a cure. Sanfilippo is described as Childhood Alzheimer’s and, with no cure at this time, is terminal.


My son, Brian, sent out this email:

Hello friends and family of Oliver!

First of all thank you, thank you, thank you for your love and support of Oliver.

We hope your new year is starting off healthy and happy! Oliver, himself, has started off 2020 in his usual good spirits. He is happy to be back in school with his friends and doesn’t miss his morning Larabar. He’s having fun playing with his sister, Reagan, and he’s constantly politicking us to watch Paw Patrol. While we anxiously await to see if he will be included in the clinical trial at Nationwide, we are doing everything we can to make sure his cognitive skills stay as sharp as possible and also get in as many of his classic, big, running-start hugs as we can.

But in the meantime, Oliver wants to invite you to a special night:

On Friday, February 28th at 7pm we are celebrating Oliver’s Tomorrow at Nationwide Arena at the Columbus Blue Jackets vs Minnesota Wild NHL game. The Blue Jackets have partnered with us to help us spread awareness and all children affected with Sanfilippo, especially MPS III B. To top it off, $10-$20 of each ticket purchased will go back to the Cure Sanfilippo Foundation!!

This is going to be an amazing event that will help spread the word and allow us to meet many of you in person. We are asking all in attendance to wear white to have a White-Out for Oliver.

Please check out this link to find out more if you are interested and to purchase tickets:

bluejackets.com/oliverstomorrow

So thank you all again and we hope to see many of you there.

Jennifer & Brian


bluejackets.spinzo.com


Unfortunately, Grammy L won’t be there, but I will wear white that day in honor of Oliver, his family, my family, all of our friends and the Blue Jackets for bringing attention to Sanfilippo Syndrome and for so generously sponsoring this fundraiser to help find a cure.

But I will especially be honoring all the children and their families who are living through this devastating experience! These are the warriors in the trenches. Thank you for having their backs!


To learn more about this syndrome go to http://curesanfilippofoundation.org

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.

What I Like About Austin

I Could Tell You… But It Would Take All Night Long

So, let me just tell you about today…

We get a late start this morning and as usual we begin another great day at Olivia and John’s place. This is the only pic I have of their house, the daffodils blooming under the front yard tree…


First order of the day is food, of course, so we hit the NeWorlDeli on Guadalupe Street in downtown Hyde Park.

google.com

This family business started with a couple who wanted to create a restaurant where their 2 young daughters could come to work with them and they would not have to rely on day care.

In the early days you would often see little Abigail taking a nap on the bread shelf while Claire glided around visiting customers on her red scooter.

When you enter NeWorlDeli you are greeted by the aromas of simmering sauces, homemade soups, and roasting meats wafting from the kitchen. This casual cafe caters to those who crave an old-fashioned  sandwich piled high with fresh deli meat, cheese, and all the trimmings. (neworldeli.com)

courtesy of Matt Guthrie

courtesy of Robert Malka

courtesy of Seth Johnson

courtesy of Madie Leon Riley

I don’t remember what everyone else orders, but Olivia and I have the tomato basil bisque soup… Sensationally sumptuous!


After picking up Hugo we hike along Shoal Creek, a stream and urban watershed flowing through the heart of the city. According to shoalcreekconservancy.org, a watershed is a geographic area within which all water drains to a common source. Any water that falls to the ground in the Shoal Creek Watershed eventually reaches Shoal Creek (if it doesn’t evaporate first)!

austintexas.gov

Shoal Creek is an 11-mile natural waterway in a 13 square mile watershed. The creek meanders through neighborhoods, skirts the campuses of St. Andrew’s Episcopal School and Seton Hospital near 38th Street, borders the western edge of the University of Texas, travels through Pease Park, and ribbons through downtown Austin. The mouth of Shoal Creek, and the southern terminus of the trail, is located at Lady Bird Lake. Nearly 10 miles of trails and bikeways follow the creek from Highway 183 to Lady Bird Lake, providing a pathway for  cyclists, walkers, and runners. (shoalcreekconservancy.org)

Old oak trees line the trail and provide the perfect setting for photo ops…

And an occasional riparian plant with yellow berries…

Ball moss on oak trees…

Olivia, John, and Hugo check out this oak tree literally growing sideways…

Ah… Laurel Cherries pop with color…

This part of the trail is closed due to a landslide. Unfortunately people still hike through here, ignoring and disrespecting the closed trail signs.

Horse Tail plants?

A perfect spot for a picture of Jeff and me…

I think these trees are actually Live Oaks…

Hugo makes a friend…

Prickly Pear Cactus…

Spanish moss hangs like tinsel on oak trees…

Spanish moss and tangles of ball moss…

Mexican Buckeyes…

A memorial bench with a dedication plaque that will freak you out…

After food and a hike, you got it! It’s time for a short siesta before we start the evening.


First stop is BookPeople because, well our whole family is book people!

courtesy of Chih-Horng Kuo

Located in the heart of downtown at the corner of 6th and Lamar, this independent bookstore has been catering to the cravings of the bibliophiles of Austin since 1970. In 2005 BookPeople was voted Bookstore of the Year by Publisher’s Weekly. (bookpeople.com)

courtesy of Sateesh Peddini

The children’s and young adult section of BookPeople is enormous, vibrant, and playful. Kids of all ages attend story times and book clubs. The bookstore also sponsors book fairs and author visits at local schools and hosts over 300 literary and author events a year.

courtesy of J LaCour

courtesy of Sateesh Peddini

And of course there’s a cafe called CoffeePeople serving warm and cold beverages, sandwiches, tamales, empanadas, breakfast tacos, pastries, and healthy snacks. It’s open 9AM-9PM 364 days a year, every day the store is open. BookPeople is closed Thanksgiving Day and may close early on some holidays. (bookpeople.com)

We all leave with some books we purchased! Book stores are so addictive!

Later, Olivia surprises me with a book she bought for me, one of her favorites…

It’s about Tara Westover, a girl born to survivalist parents in the mountains of Idaho, so isolated from mainstream society that the first time she ever sets foot in a classroom is when she is 17 years-old. I look forward to reading this, Olivia, thank you! We’ll have a mini book club session and I will post more after I finish this memoir…


Happy Hour takes place at the Whole Foods Bar, a hop, skip, and a jump away from BookPeople.

wholefoodsmarket.com

We sit on high stools around a high circular table and sip on several glasses of:

We’re in the middle of a grocery store enjoying delicious selections of fermented grapes!

Before we leave, John and Olivia select 2 bottles of wine to take home with them. (Hmmmmm… just saying… for future reference and special occasions… worth remembering?)


Dinner tonight is at Black’s Barbecue on Guadalupe Street, located just north of the campus of the University of Texas, familiarly known as The Drag.

blacksbbq.com

I have to confess that I took these photos the next day…

But here’s the nighttime ambiance…

blacksbbq.com

blacksbbq.com

blacksbbq.com

According to the website, the Black family has been actively serving the barbecue community for over three generations, originally making a name for themselves at the Black’s BBQ family-owned restaurant in Lockhart, Texas.

The Guadalupe Street “Outpost” of the Original Black’s BBQ serves barbecue cooked fresh on the old Lockhart pits and hand delivered to the Austin location hot and fresh everyday.

Number of miles Austin is from Lockhart: 30

Number of hours Brisket is cooked: 14

Number of Sausage Rings made per week: 6,000

I don’t remember what we all eat, but it was delicious and we all leave with full and happy tummies.


What I like about Austin?

This is what I like most about Austin:

Beautiful, Beautiful Texas

And Delicious Too!

We survive the night without blankets and a lampshade. Shady characters come and go, more cigarette butts accumulate outside the room 2 doors down, and we discover the lock to our room is loosely attached to the door frame. But, we’ve got leftover Via 313 pizza squares in our mini freezer-fridge!


Our day begins at the Omlettry on Airport Blvd., an old-fashioned place that’s often equated with the old Austin where gingerbread pancakes, huevos rancheros, and hot coffee is served 7am-5pm daily. Kenny, the owner, insists on serving real food with natural ingredients. Everything is cooked to order and everything stays on the menu. (theomelettry.com)

…primal comfort food!

photo courtesy of Ron Mader


After picking up Hugo, we head to Zilker Park… 350 acres of hiking, biking, field sports, and scenic views. The Great Lawn is home to the Austin City Limits Music Festival, held annually since 2005 on 2 weekends in October.

We take a pleasant walk along part of the Ann and Roy Butler Hike and Bike Trail.

austintexas.gov

Here are some highlights of our 3 mile out-and-back hike along Barton Creek and the section of the Colorado River known as Lady Bird Lake:

Scenic views of downtown Austin…

Aquatic wildlife…

A Cherry Laurel evergreen…

Heading to the Lamar Pedestrian Bridge along Lady Bird Lake…

The Pfluger Bridge, aka Lamar Pedestrian Bridge… Or as John named it for me, the “Hugh Jass Bridge”. Say that out loud.

The City of Austin Power Plant…

This building is the former Seaholm Power Plant commissioned in 1948 to meet the growing need for electricity in Austin. Originally called Power Plant No. 2, in 1960 it was renamed posthumously for Walter C. Seaholm, a prominent administrative figure of the city’s municipal facilities.

Seaholm served as Austin’s sole source of electric power from 1950-1959 until demand outpaced the 120 megawatts the plant could produce with all 5 boilers running. In 1989 the plant stopped providing power to the city and was used as a training facility until it closed entirely in 1996.

Today the building is listed on the National Register of Historic Places and designated as a Recorded Texas Historic Landmark. (en.m.wikipedia.org)

According to an article written by David Weible in 2016 for savingplaces.org, the power plant was shut down for good in 1992.  The site sat nearly untouched for almost a decade becoming overgrown, disheveled, and forgotten. In 1997 the city of Austin decided to demolish the structure until a local group sprang into action to save it.

In 2005 a team was selected to redevelop the 7.8 acre site including the power plant itself.  Recognizing the historic significance of the building, the team saved as much of the old infrastructure as it could.

Redevelopment began in 2013 and was completed in late 2016. Today the old power plant site consists of residential spaces, commercial spaces, office spaces, green spaces, retail shops, and restaurants. (The History Behind One of Austin, Texas’ Hottest Development Properties)

savingplaces.org

After a coffee/water break, we head back…

A glimpse of the University of Texas Tower where Charles J. Whitman took control of the observation deck on August 1, 1966, and mass murdered 17 innocent people including his mother and his wife…


It’s cocktail hour and we are on our way to Hotel San Jose, a South Congress Avenue gathering place for locals and visitors alike, per its website.

google.com

Built in 1936 as a motor court, the property reopened in 2000 as a transformed 40-room urban bungalow-style hotel tucked behind stucco walls and set amidst lush garden courtyards. (sanjosehotel.com)

According to the hotel website, Liz Lambert left her job as a prosecutor in the Manhattan District Attorney’s office in 1994 and returned home to Texas. While working in the Attorney General’s office in Austin, she used to hang out at the Continental Club on South Congress Avenue and fantasize about doing something with the old rundown 1930’s hotel across the street.

bunkhousegroup.com

At that time South Congress was a haven of drugs, crime and cyclical poverty. On a whim, Liz approached the owners of the San Jose motor court and found out they had just put the property up for sale!

Liz bought the hotel with the intention of renovating it one room at a time, but she ended up running the place in its existing state as a low rent residence for 3 years as she gathered funding for what was eventually a $3 million project. She chronicled her experiences with her residents on video camera creating a 90-minute documentary entitled The Last Days of the San Jose.

photo captured from trailer on You Tube

photo captured from trailer on You Tube

An article by Anne S. Lewis in the Austin Chronicle 2005 entitled, Anybody’s Home?, describes the documentary as “on the surface, a seemingly straightforward tale, but oh, the wash of contradictory emotions this doc sets in play and the layers of knotty unanswerable questions – moral, ethical, sociological – and city planning issues it raises.”

You can view a 3-minute trailer on YouTube.

The outdoor bar is the perfect venue for its signature drink, a charcoal margarita. Of course I have to have one!

The frozen rose is another delicious favorite. Olivia and I say cheers!

As I approach our table with another round, I am carrying my charcoal concoction…

Can you tell we’re having a really good time together?

And Hugo too…


We regroup and refresh at our own residences for a bit, and grab dinner at Taco Flats on Burnet Road. Yum!

tacoflats.com

tacoflats.com

tacoflats.com


We end our gloriously beautiful and delicious day just down the street at Ginny’s Little Longhorn Saloon, one of Austin’s honky-tonk country music venues.

Oh, and before I forget, you need to know that The Little Longhorn Saloon is home to Chicken Shit Bingo. I’m not making this up.

do512.com, courtesy of Carrie Kuenzi 

According to theculturetrip.com, all ages are welcome to participate in this unique version of bingo which involves chickens and chicken feed. For a few dollars donation, participants purchase tickets in line. Each ticket corresponds to a number on the bingo table. If the chicken poops on your number, you win a cash prize.

austinchronicle.com

And that’s the rest of the story!


So, it’s a wrap! Laughed out, tummies full, tired… we all go home to a good night’s sleep. No doubt about it, we are having a wonderful time in Austin with John and Olivia! Thank you for being such wonderful hosts.

One last pic… the Capitol Building as seen from Burnet Road…

Deep in the Heart of Texas

Van Horn to Austin… Ki-yip-pee-yi!

google maps

Fortunately, today’s drive is easy peasy compared to yesterday’s. Unfortunately, as we pack the car and hit the highway, I discover shards of red plastic on the ground next to our car. I specifically remember only seeing tangerine peels lying on the ground in the parking space last night, so the red pieces of plastic were new. Fortunately, the shards are not from our car. Unfortunately, however, someone with a white vehicle backed into us while we were parked here overnight.

Really?

The Motel 6 where we stayed didn’t look too sketchy until we went inside to register, park the car, and open the door to our room.

 google.com

Fortunately, we only needed a bed and bathroom.


The stretch through central Texas on I-10 to US-290 is rather desolate and uninteresting but every mile brings us closer to John and Olivia.

About 80 miles from Austin, we reach Fredericksburg in the Texas Hill Country. The town was founded in 1846 when the first German immigrants arrived in Texas and settled here. Nicknamed Fritztown and The Burg, the town of some 10,500 residents was named after Prince Frederick of Prussia and is home to Texas German, a dialect spoken by the first generations of German settlers who refused to learn English.

Fredericksburg is the birthplace of Admiral Chester Nimitz, commander of the United States Pacific Fleet in World War II.

worldwar2facts.org

When Lyndon B. Johnson became President of the United States on November 22, 1963, the world focused attention on the Texas White House at nearby Stonewall, LBJ’s birthplace. Stonewall, just 20 minutes away from Fredericksburg, is also where he is buried on his beloved ranch that has become the Lyndon B. Johnson State and National Historical Parks. During his presidency the Johnsons attended church in Fredericksburg and personally escorted dignitaries around the German town, thus attracting tourists to the area and placing it on the map as a destination to visit.

tpwd.texas.go 

Today Fredericksburg is described as “the quaint town… comfortably nestled between… San Antonio and Austin. It is dripping with old world customs and traditions and authentic German roots… from the city square to the sprawling vineyards and beirgartens.” Climb Enchanted Rock, visit the National Museum of the Pacific War, stay in fancy, German-style digs, tour LBJ’s ranch, sip your way along wine trails, pluck wildflowers at Wildseed Farms, stroll through Main Street, indulge in German cuisine. (southernliving.com)


At last! We arrive in Austin around 3:30.

Fortunately, the Super 8 Motel, where we are spending the next 4 nights, is less than 2 miles from Olivia and John’s place. Unfortunately, the clientele is questionable, to say the least… as in: a lot of heavy-set girls with bare midriffs in high heels carrying overnight bags are constantly coming and going, the walkway outside the rooms are littered with cigarette butts, a bare- chested man with long gray hair sits outside his room, facing his door… you get the picture, right?

google.com

Fortunately, we are only sleeping here. Unfortunately, our room has 2 lamps but only one has a lamp shade. Fortunately, the nightly fee is $60. Unfortunately, we discover we have no blankets, only a sheet and bedspread. Fortunately, the management is friendly and courteous. Unfortunately, they do not do anything about it. Fortunately, the nights are not cool enough that we need a blanket. Unfortunately, the mini-fridge needs defrosting.

Fortunately, we have a mini-fridge.


We drive to Genard Street where John and Hugo are waiting for us. Olivia is at UT and will join us later. Their house is adorable, but I now realize that I didn’t take one picture, neither inside or out, of their place! Eat-in kitchen, living room, 2 bedrooms, and 2 baths… So great to be here!

Off we go with Hugo to Spider House, a dog friendly patio bar and ballroom blanketed in Christmas lights.

Olivia walks over from the University of Texas, which is about a half mile away, and joins us. Did I already mention how great it is to be here?

I keep looking around and Jeff and I are absolutely the oldest people here! So cool!


John pops in to a local food mart to pick up some wine and snacks before we return home and relax. We end the evening with a takeout order of Detroit-style pizza from Via 313.

According to their website:

“This is why Via 313 exists: to ENJOY the pizza we grew up with. It’s called square, but it’s really rectangular, and baked in metal trays, just like the ones used on the automotive assembly lines at the Big Three. But instead of being filled with metal parts, ours are filled with the finest pizza ingredients we could source.” (via313.com)

All I can say is wow! What deliciously decadent pieces of pizza! John ordered 3 different kinds…

The Cadillac

austinchronicle.com

The Rocket

yelp.com, courtesy of Sarath P.

The 500

zmenu.com

Are you sure I already mentioned how great it is to be here?

Texas is Calling

And We Must Go…

google maps

Actually, John and Olivia are calling, so Jeff and I take a road trip, in our car this time, and head to Austin to spend 3 full days with my youngest son and his high school sweetheart who will become my daughter-in-law next year.

We take the I-10 East through the rest of California and continue driving through Arizona and New Mexico until reaching our final destination.

Even from the freeway, this is beautiful country!


Ten hours later, we stop for dinner in Las Cruces, New Mexico at Dick’s Cafe. (I barely recall arriving here because my brother, Ken, and I reconnect once again by phone. Ken calls me about my grandson, Oliver, and we briefly catch up. It’s been several years since we talked. I owe you a call this time, Ken!)

google maps

google maps

This popular local diner serves everything from burgers and sandwiches to Mexican food, and barbecue.

courtesy of Maiava Ohana, 2019

courtesy of Maiava Ohana, 2019

courtesy of William Matthies, 2018

courtesy of Sam Torrez, 2019

In 2019, Dick’s Cafe celebrated 60 years of serving good meals at decent prices.

courtesy of Cristian Strawn-Monarrez, 2019

This family-owned restaurant started out as a small hamburger stand owned and operated by Dick Perez. In the 1970s the business moved from the Tortugas area to its present location on S. Valley Drive in Las Cruces.

Today, Ace Perez is the 3rd generation owner of Dick’s Cafe and has hopes that his son, Dylan, will take over the family business in the future. (lascrucesbulletin.com)

lascrucesbulletin.com

After dipping tortilla chips in the hottest salsa I have ever tasted, Jeff eats the best burger ever and I enjoy my Mexican dish smothered with salsa verde.


Rested and satisfied, we head southeast on the 10 to El Paso, Texas. Not used to the traffic and lights on a major city, the drive through the city is unnerving and stressful. What a shocking difference from the desert daytime driving!

google maps

Finally through the city, we continue on I-10 in the dark toward Van Horn. Towns are few and far between for the next 90 minutes. We need gas and, of course, no gas stations are available.

google maps

After a very long day of driving, we conk out at a Motel 6 in Van Horn.