A Sanfilippo Story by Grammy L…
Balloons, Bubbles, and Bedazzle
Oliver enjoys chasing and catching bubbles.
All About Oliver (and his family)
All About Oliver and Sanfilippo Syndrome
All About Oliver
A Sanfilippo Story by Grammy L…
A great birthday party with great friends!
Sunday April 4th, (yes it’s Easter Sunday) Oliver celebrated his birthday with his 3 special friends from school: Jack, Henry, and Zev…
…at Tree of Life Play & Cafe…
And of course Reagan invited her special friend, Lily…
What a great place for a party! The slide and ball pit area let Oliver, Jack, and Henry bounce, climb, and run off steam. Zev really enjoyed the slide and was a good sport as the other 3 amigos kept corralling him. Oliver, who does not realize his own roughhousing, made sure to let Henry’s dad know, though, when Henry was out of control.
Zev’s mom was so touched that Zev was invited to Oliver’s birthday party. “This is the first birthday party he has ever been invited to!”
What a great birthday party! We even did a take 2 on singing happy birthday because Grammy L thought she was videoing the song, but, alas, oh, Grammy L wasn’t. Henry’s dad, Steve, (the same dad Oliver kept calling and finding and taking his hand to “tattle” on Henry), calmly said, “Let’s do it again.” So we did!
All About Oliver
A Sanfilippo Story by Grammy L…
HAPPY BIRTHDAY, DEAR OLIVER!
HAPPY BIRTHDAY TO YOU!
Oliver is 6 years old! He doesn’t quite grasp the fact that today is his birthday, we guess, since his party with friends won’t take place until Sunday, the 4th of April. We remember, a little sadly, how excited he was to wake up on his birthday and celebrate his special day in the past. “It’s Oliver’s birthday,” he would shout with a great big smile on his face. Today is different. Maybe on Sunday he will realize we are celebrating his birthday.
Later in the afternoon, Oliver attended the birthday party of Jacob, one of his friends from pre-school last year. It was held at a gym with sports areas. Jen said he had a wonderful time running around and throwing balls. The best part though was that Jacob and his friends played with Oliver. They chased him and joined him in the various areas as he flitted here and there the way he does. They INCLUDED and ACCEPTED him!
Sadly, this is not usually the case when Oliver is around kids his own age. They label him strange because he acts differently so they don’t engage with him and leave him all by himself. It’s not their fault. But maybe it’s time to start having conversations with neuro-typical children about all the Olivers of this world they have yet to meet. How can we explain that Oliver is doing his very best even if it looks different than their very best? As Oliver says, “hmmm… I KNOW!” isn’t this a lesson for us adults too? Hmmm… I KNOW I need to learn to practice this!
All About Oliver (and his family)
A Sanfilippo Story by Grammy L
HE GETS BY WITH LOTS OF LOVE FROM FAMILY…
All About Oliver
A Sanfilippo Story by Grammy L…
CAPTAIN HUGS BAR
Oliver is the poster child for Larabars! He has been devouring several of them daily ever since he tried his first one at 18 months. Today he just asks for chocolate. His favorites are:
Sooo… the good people at The Superhero Project created and sent this framed Captain Hugs Bar to Oliver!
Along with several boxes of Larabars!
The next time you are at the store and run across a single bar or box of Larabars (or perhaps enjoy one yourself…), please think of Oliver and his Sanfilippo buddies and the children who haven’t been diagnosed yet.
All About Oliver (and his family)
A Sanfilippo Story by Grammy L
WE GET BY WITH LOTS OF LOVE FROM FRIENDS…
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 (and his family)
A Sanfilippo Story by Grammy L
SHOWING OFF
Jen created a muscle and sensory area downstairs for Oliver and Reagan.
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.
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…
as Sanfilippo Awareness Day in Ohio
Jen updates the profile picture for Oliver’s Tomorrow on Facebook.
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.”
wandering gypsy Laurel 