Sanfilippo Awareness Day

Every November 16th…

But in our family everyday is Sanfilippo Awareness Day.

Yes, that’s my grandson, Oliver, who was just diagnosed with this degenerative syndrome. One out of 70,000 babies are born with a change in their DNA that causes a very important enzyme to be made improperly or not at all.

Because Oliver does not have this critical enzyme, his body cannot breakdown and recycle natural cellular waste. His cells become clogged with toxic levels of heparan sulfate.

While every cell in his body is affected by Sanfilippo Syndrome, his brain cells suffer the most. The effects on the brain become apparent between the ages of 2 and 6 and are displayed by speech problems, developmental delays, challenging behaviors, extreme hyperactivity, and poor sleep. Oliver is 4.

Imagine Alzheimer’s, but in children. Our precious little cutie boy will fade away and lose his skills and knowledge, eventually not able to talk, walk, and swallow.

Children with Sanfilippo Syndrome often pass away in their early teenage years.

This is my precious love-love boy.

We just recently received confirmation about this devastating and relentless diagnosis. My daughter-in-law, Jen, sums up the feelings of our family the best. We are gutted! It is so difficult to write about this and wrap my head around how cruel life can be. My son, Brian, needs me to be strong for him, but I am barely holding on some days. My heart is shattered into a million tiny pieces. I ache. It hurts sooooooo bad! I can’t fix this! I don’t want to accept this! But I will and I do. Our family is strong. Our motto is… We got this (even though we don’t want to got this.) The good news is that my love-love gil-gil, Reagan, is NOT missing this enzyme. I have to be strong for her as well and make sure that she is a part of all this.

So… for now I am still a wandering gypsy but I will finally roll into Bexley, Ohio at some point and stop permanently. Luckily we are back in Thousand Palms, California, outside of Palm Springs, where an airport is only 20 minutes away. I plan on becoming a frequent flyer and frequent visitor of Oliver and his family.

You can follow Oliver’s Tomorrow on Facebook.

Learn more about Sanfilippo Syndrome by clicking on this link.

This is so difficult and emotional to write about!

One Last Walk on Agate Beach…

…Before Heading Back to the Desert Oasis

We leave Port Orford in 2 days to return to Thousand Palms Oasis in the Coachella Valley in Southern California.

As we scurry around saying goodbye to friends, sharing last meals, doing laundry, planning our 3 overnight stays, packing up the RV,  planning meals and buying groceries for the road… we take time out to breathe and take one of our favorite 3 mile walks to Paradise Point, down to and along Agate Beach to Tseriadun State Park, and back again to Camp Blanco RV Park.

Unlike me, I only snap a few selective photos to save and savor until next May.

Naked Ladies

These pink to white flowers, from the genus amaryllis, bloom before the leaves develop, hence the naked stems. Amaryllis belladonna is native to the Western Cape of South Africa but has naturalized in many Mediterranean climates throughout the world and is especially popular in California and Australia. Apparently, it also thrives in the seasonally moist soil of the Oregon Coast. Naked Ladies sprout from large bulbs, the size of a softball, and grow with the top of the bulb at the surface of the soil. (

These blooms just happen to be in the yard of another library volunteer, I happily discover as he and I exchange greetings!

Pampas Grass…

This weedy pampas grass, called Cortaderia jubata, has thin plumes held high above the leaves. It is not native to the South American plains but to the mountains of Ecuador, Peru, and Chile, and a more suitable name for it would be Andean plume grass. This invasive plant, supposedly introduced to the horticultural trade via France, has made its way to the coastal areas of the Pacific Coast.  (

As we reach the parking area of Paradise Point, these plumes, invasive or not, wave to us against a pure blue sky in pure innocence.

Ribbon Kelp… immaturely washed ashore…

Also called bull whip kelp, this seaweed is made up of a round hollow bulb, or air bladder, from which ribbon-like blades emerge. The air trapped in the bulb pulls the kelp up so that the blades float close to the surface and receive adequate sunlight. The blades or stipes of mature plants are shiny and leathery, while younger plants have thinner, shinier brown blades or stipes. The stipes are hollow tubes, up to 120 feet long. (

Their lower end, however, is a solid root-like structure that tenaciously clings to a rock on the bottom of the ocean. Native Americans of the Pacific Northwest Coast used this ribbon kelp to make fishing lines, nets, ropes, harpoon lines, and anchor lines. (

A driftwood sculpture…

A baby Sasquatch was here!

Agates, shells, and rocks we collect along the way…

See you next May, Port Orford!

The RV Goes to the Doctor

And Stays Overnight in the RV Hospital

The RV is just over 4-years-old now and has travelled over 32,000 miles.

Lots of little and not so little things have gone wrong and caused us concern and cost us a few pennies, like a seatbelt, a new door, 3 new locks, and 2 replaced slide toppers. We still need 2 new window screens, 2 puck lights, and 2 overhead lights that the manufacturer no longer makes.

So… We scheduled an appointment to get the lights and screens taken care of as well as an overall maintenance check on August 1st before heading to the Olympic Peninsula, Mt. Ranier, and Glacier National Park.

The nearest RV “doctor” is in Coos Bay, 50 miles north of Port Orford.

The RV needed new caulking which meant the old stuff had to be removed and replaced. The wrong sized puck lights were ordered so new ones had to be re-ordered. The overhead lights could not be replaced and Tony’s doesn’t do screens.

We made an appointment for September 17th hoping that the caulking and 2 puck lights would be an in-patient procedure and that our home would not have to stay overnight.

We spend the windy and wet day in Charleston, a quaint fishing village 8 miles from Coos Bay and North Bend.

Charleston is located just inside the entrance to the bay of Coos Bay. It is home to a large commercial fishing fleet and to some of the finest recreation and most beautiful scenery of the Northwest. (,  courtesy of Donna Smith

Cape Arago Highway leads to Shore Acres State Park…

Bastendorff Beach County Park…

Sunset Bay State Park…

And dead ends in a loop around Cape Arago State Park…

When we arrive at the tip of the loop, we attempt to walk out to the ocean view but are barely able to stand up! We are literally almost “blown away” by the wind. So, we lunch on the fish and chips special which includes a cup of chowder at Portside Restaurant in Charlestown.

The restaurant sends its own boats out to catch the fresh fish of the day.

Upon returning to Tony’s RV Service & Repair, we learn that the RV needs to spend the night. We can either drive back to Port Orford, 50 miles south, and return tomorrow or stay overnight in a motel.

We decide to find a room in Coos Bay instead of driving back and forth again.

The next morning we return to Charleston and revisit the Cape Arago Beach Loop. Much calmer now…

A whale arches it’s back.

And let’s off “steam”…

We have lunch at Sumin’s Asian Restaurant and Sushi Bar in Coos Bay., courtesy of Jenae Lien

Absolutely DELICIOUS!

After lunch we pick up the RV, pay the $850 for labor and materials, and head back to Port Orford. Once again, the wrong sized puck lights were ordered. Maybe next summer we’ll finally get the right size and have these 2 lights replaced! Meanwhile we will head down to Thousand Palms, California on the 24th of September to volunteer as hosts again on the Coachella Valley Preserve.

The Coast with the Most

Volunteering in Port Orford

Cape Blanco Lighthouse

Every Monday I take folks up to the top of the tower, aka lantern room, and explain the history of the Fresnel Lens continually operating in this historic lighthouse since December 20, 1887 when it was first lit.

The view from here is incredible…

On Thursday afternoons, Jeff is the cashier for the  Visitors’ Center…

Port Orford Library

This summer I assisted Cheryl, the Children’s Librarian with the summer programming. The theme was Outer Space in honor of the 50th Anniversary of the first time humankind walked on the moon.

Learning how to find which way is North…

Comparing the sizes of the planets…

Telling time with our sun clocks…

Making rockets…

The best part of Port Orford is the people!

Good Times in Port Orford

Fun, Friends, Food, Fishing, and a Fair…

The house of our good friends, Kenneth and Paulene…

The girls: Elmo, Big Bird, Fly Girl, and Paulene…

Paulene and I have a girls’ outing in Bandon…

A mini-golf tournament with Paulene, Faith, Allen, and Kenneth…

Sharing a meal…

Can you guess where these eggs came from?

The Ring Game, invented by Kenneth…

Kenneth takes Jeff fishing…

Celebrating Jeff’s 66th birthday…

When you purchase freshly frozen fish from the Food Co-op, you know when it was caught, how it was caught, by whom it was caught, and even the name of the vessel from which it was caught.

We always run into friends on Battle Rock Beach…

And finally, the second annual Street Fair organized by our  friends, Steve and Kathee Dahl. Unfortunately Jeff and I missed it this year because we spent August exploring Olympic National Park and Peninsula, Mt. Ranier, and Glacier National Park. Kathee is a local artist and Steve, Jeff and I volunteered at the Cape Blanco Lighthouse together last year.

This is the Best of Port Orford!

I’m F-A-L-L-L-L-L-L-I-NG

Multnomah Falls

Back in Oregon, we rest for a couple of days in Troutdale and revisit the Columbia Gorge before returning to Port Orford for several weeks and then heading down to Thousand Palms, California.

Today we head to Multnomah Falls, a 611-foot-tall double tiered cascade just off Interstate 84.

Millions of years ago, volcanoes, glaciers, floods, and the uplifting Cascade Mountains formed the Columbia River Gorge. Massive floods from the last Ice Age scoured out the Gorge, creating the Multnomah Falls which were literally left hanging there. (plaque at Falls)

As liquid basalt from volcanoes transformed into rock, the resulting rock formations were dependent upon their environment and cooling rate.  Three types of basalt can be found in the rock layers behind the Falls.

Pillow Basalt results from the encounter of basalt flows with water which causes immediate solidification and creates “bubbles” or “pillows” of various sized rocks. (plaque at Falls)

Entablature Basalt is the result of relatively fast cooling lava that fractures into irregular patterns and joints. (plaque at Falls)

Columnar Basalt forms when lava cools slowly and fractures to create 5-6-sided crystals. It is usually found underneath entabulature basalt. (plaque at Falls) The picture below shows examples of columnar basalt behind Latourell Falls in the Columbia Gorge.

The powerful cascading waters constantly erode the softer layers of rock below and behind the Multnomah Falls, creating a plunge pool and cave. The upper tier recedes faster than the lower falls.

A short walk from the parking area leads to the best view of the Falls.

Another several hundred feet up a paved trail takes you to Benson Bridge which spans the first tier’s misty base. Looking up you can see the full 542-foot height of the top tier. Looking down you overlook the 69-foot drop of the lower tier. (

Benson Bridge is named for Simon Benson, a Portland businessman who owned the Falls in the early 1900s. Upon his death he bequeathed the Falls to the City of Portland which later transferred ownership to the USDA Forest Service. (

A trail continues past the 45-foot-long bridge for another mile to ascend an elevation of another 785 feet to reach yet another incline 100 feet above the Falls. The trail then descends to an observation deck overlooking the edge of the Falls. (

This is as close as I could get to the falling water. There’s no view of the drop, so I have to admit I was somewhat disappointed. Gee, if I had known this before trudging up a mile of 14 switchbacks, I might have reconsidered the hike! Not really…

But our plan was to hike further for another .8 miles to visit 3 more falls before turning back.

This small cascade slightly upstream from the upper tier of the Falls is called Little Multnomah.

From the observation deck you get a bird’s eye view of the Columbia River and across from it, Washington State.

As we ascend the trail from the observation deck, I am fascinated by these tree roots.

Instead of heading back and returning to Benson Bridge and the base of the Falls, we continue along the southeast trail beyond.

We encounter these examples of Entablature Basalt rocks beside us as we walk along the trail. Relatively fast cooling lava fractures into irregular patterns and joints forming entablature basalt.

We cross the scenic Multnomah Creek.

We continue hiking parallel to the Creek.

We encounter Dutchman Falls, the colloquial name for this waterfall that dashes down a wide basalt ledge of Multnomah Creek. (


This is an interesting stretch on the trail.

After researching the name for Dutchman Falls, I discover that this precarious basalt overhang just upstream from the Falls is called Dutchman Tunnel.

Multnomah Creek washed out a large semicircular cave from underneath a lava flow. In 1915 trail builders constructed a stone-walled trail through this cave.

A plaque honoring Forest Service Ranger Albert Wiesendanger rests on a wall of the overhang.

Next, we arrive at Wiesendanger Falls named after Albert Wiesendanger who lived from 1893-1989. For more than 71 years he worked in professional forestry and fire prevention jobs that spanned a lifetime career.  Albert worked 39 years with the USDA Forest Service in the Portland, Oregon regional office and in the Mt. Hood National Forest. He then “retired” to another 32 years as executive secretary for Keep Oregon Green Association, a privately funded organization with the objective of preventing people-caused fires in this timber state. (

The trail ascends onto 4 switchbacks.  But first I turn around and take this picture.

Less than 10 minutes later we pass Ecola Falls.

According to, the most prominent feature of this waterfall is the ambiguity of its name. At first Ecola Falls were grouped with the downstream Wiesendanger Falls and listed as one waterfall, often called Double Falls. Later publications listed Ecola as Hidden Falls because of it’s hard to see position and the fact that the Forest Service had recently placed a plaque marking Wiesendanger Falls by name in the late 1990s. Today the Forest Service officially recognizes these falls as Ecola, the Chinook word for whale.

We continue hiking along the Multnomah Creek.

We reach another switchback and these trail signs, after hiking more than .75 miles from the top of Multnomah Falls. It’s time to turn back.

The views on the way back…

As we return to the base of Multnomah Falls, I am half tempted to tell people that the best views of the Falls are from below.

As we make our final descent back to the viewing area at the base of the Multnomah Falls, I look up and capture the blue sky peeking through this umbrella of leaves branching off its trunk hugged by moss.

One Hike, Three Waterfalls

Glacier National Park

We find a space for our car at the Sunrift Gorge parking area and head across the Going-to-the-Sun Road to start the 5.4 mile out and back hike to Baring, St. Mary, and Virginia Falls. Actually, we find out later, we didn’t have to cross the street. A set of stairs leads down to the trail from the southern side of the road.

But I’m glad we did because we encounter the rushing waters of Baring Creek plunging down the steep and narrow canyon of Sunrift Gorge.

The gorge flattens out into shallow waters that polish the rocks with a brilliant shine.

Meanwhile, above the creek, gray clouds and the scorched remains of once-green trees dominate the landscape, the yellow-greens of the forest floor adding a welcome contrast.

Another sign reminds us that we are encroaching upon grizzly territory. This is no walk in the park.

Baring Creek guides us along the trail.

We arrive at the junction of Sun Point and Baring Falls Trails and veer to the right toward the falls.

Almost 1/3 mile later, we arrive at the footbridge crossing Baring Creek. Can you find it in the picture below?

We cross the narrow bridge over Baring Creek…

…And behold Baring Falls, a 25 foot high waterfall.

Baring Creek flows another 100 yards or so before spilling into St. Mary Lake.

We pass the small boat dock used by Glacier Park Boat Tours, a company that’s been running lake excursions on their wooden boats since 1938.

We continue walking along the southwestern bank of St. Mary Lake.

There has been a fire in Glacier National Park almost every year of its existence. The year with the most fires was 1936 with a total of 64. So far the only year with no fire on record was 1964. The summer of 2003 was the most significant fire season in the history of the park. Approximately 136,000 acres burned. (

It’s cloudy and gray but the colors surrounding us from the mountains, lake, and vegetation along the trail do not disappoint.

At the junction with the St. Mary Falls Shuttle Stop we keep left.

This plant with the spiky serrated leaves and cluster of blue berries looks like Oregon Grape.

Fire has painted this picture on a tree trunk. It reminds me of the surrealist style of Salvador Dali.

As we reach the St. Mary River, we hear the thunderous roar of water crashing down rocks.

The footbridge crosses the river where we stop for a view of St. Mary Falls in all directions.

St. Mary Falls drops a total of 35 feet in 3 separate tiers.

Once past the bridge, the trail continues for another 1.8 miles to Virginia Falls.

We follow Virginia Creek and encounter 2 more series of cascades. After hiking 1.2 miles from St. Mary Falls we reach the first series and discover 4 tiers of falling waters.

Back on the trail…

…We stop again after another .25 miles to enjoy the second series of cascades.

Ten minutes later we come to a side spur leading to a viewpoint for Virginia Falls. We decide to take the spur later, after heading up another 1/10th mile to the footbridge leading to the base of the 50 foot main fall.

Here’s a view looking down at the secondary chute that leads to a short cascade at the bottom…

…And a view of the landscape on top of Virginia Falls…

We cross the footbridge again and descend back down the trail to the side spur we missed before.

It’s time to retrace our steps and head back to our car tucked in the Sunrift Gorge parking area.

The trail in this direction offers more photo opts.

Do you see the tiny white streak in the middle of the picture below? That’s Virginia Falls!

I cannot identify this flower.

Aspen tree berries?…

My photo doesn’t capture the silver color of this tree trunk. I kid you not, these trunks look like they have been spray painted with silver!

An up-close look at charred trees, silver trunks, and scatters of slate rock shards…

A very yellow caterpillar…

Back at the car, we decide to continue east to St. Mary and take a different route back to Coram where our RV awaits us.

We take 89 South and 2 West along the southern boundaries of Glacier National Park.

Gray clouds crown the mountains overlooking the conifer forest as we drive away.

But then the traffic stops for 20 minutes for street rebuilding. After the construction area we travel unpaved roads for miles. Whose bright idea was it to take a different route home?