Little Did We Know…

As we left Thousand Palms Oasis Preserve on June 8th, we planned on visiting family in Colorado, Texas, and Ohio and returning in September. We hadn’t planned on driving away forever.

Oh, but what a final journey we had! The refrigerator inverter was not working, so for 10 hours each day, the refrigerator was off until we could plug into electricity overnight. And one of the brackets for the rear end sway bar was broken, causing the RV to shake, rattle, and roll along the highway and byways. Then we discovered one of the tires on the tow dolly was losing air. We were lucky to arrive in Colorado safely and in one “peace” via New Mexico and Arizona roadside politics.

But arrive we did. On June 10th we made it to Jernigan Land.

We had a lot of RV repairs to take care of, however, so we canceled our plans to drive the rig to Texas and Ohio. (Did I mention that our built-in propane tank needed a new carburetor?) Staying put in the Colorado Desert in the Coachella Valley for 21 months really took a toll on our vehicle. We even needed to reupholster the captain chairs and couch as the synthetic leather was flaking off in the dry desert heat.

Unfortunately these are the only pictures I have from the many ones I took of our family and grandkids. (I will explain later.)


I decided to fly to Ohio on June 25th to visit my family in Columbus. My grandson Oliver has Sanfilippo Syndrome, a rare and fatal genetic disorder. But when I called my son, Brian, I realized the sooner I could visit the better… Jen was starting a new job at Forge Biologics, a gene therapy manufacturing and therapeutics development company working to “accelerate transformative medicines to reach those who need them the most”…like Oliver and his buddies with rare genetic diseases…) Brian was still working from home. Reagan was in full-time preschool. Oliver was home for the summer. Jen’s new insurance was in flux about covering the ABA aides who spent daily in-home time with Oliver. Since Oliver is neuro-atypical he requires constant supervision and stimulation to do his best each day. Well, you can fill in the blanks. I was needed. So, I flew to Ohio on June 19th. The night before, however, I lost my phone! Jeff and I tore apart the RV and car. The only other place it could be was at David’s. A precursory lookie-loo by Jeff and Patty turned up nothing, So, I bought a new phone and lost most of my pictures from Jernigan Land. (Later, my old phone showed up at David’s behind the couch!)

I purchased a one-way ticket to Columbus because Jeff was planning on driving out when our RV was scheduled to be in the shop for the reupholstering. We booked a nearby hotel for 10 days in the beginning of August and then we were supposed to drive back to Colorado together. In the meantime…


June jumped into July.

Oliver wants pancakes for lunch.
Grammy L delivers.
Yum…
Reagan’s condor…
…lays an egg. We wait…
…for the egg to hatch.

The 4th of July!

July 5th…

We met Glenn and Cara O’Neill, the founders of the Cure Sanfilippo Foundation and their older son Beckham and 11- year-old daughter Eliza diagnosed with Sanfilippo Syndrome. Another Columbus area family joined us. Their 9-year-old daughter, Reagan, also has Sanfilippo. And finally, Katie Walton, the Foundation’s VP of marketing was also there with her neuro-typical family.

This was the day I knew I had to trade in a home on wheels for an apartment in Columbus close to Oliver, Reagan, Brian, and Jen. I need to celebrate Oliver’s best everyday while he is still active and talking and laughing and playing… While he still calls me over to give Papa Jeff a hug… While he still runs up to me with an enormous smile and takes my hands and makes me clap… While he still jumps into my lap and looks at books with me.

And of course, Reagan too!!!

One thought on “Little Did We Know…

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