A Young Man’s Bucket List

When we talked about where Justin would like to take his road trip, without hesitation, he said Canada.  He wanted to see Niagara Falls and Toronto. Justin’s form of muscular dystrophy is progressive, so we have traveled all over the world with him, knowing there would be a day when travel would be difficult. 

It became clear on this trip that we had reached that point.  At home, transfers from wheelchair to bed or bathroom are made with a mechanical Hoyer Lift.  We do not have space in the wheelchair van for a mechanical lift for hotel transfers.  It’s getting too difficult for me to pick up Justin and position him safely, for him and for me.  Both of our backs were messed up by this point of the trip.

Julia had booked a really nice suite for us at the Embassy Suites in Niagara Falls, Canada.  You didn’t have to look any further than the valet parking to tell that we weren’t at the Red Roof in Kentucky anymore.

I’ve told both of my kids that no matter who you are, there’s always going to be someone richer, faster, and better looking than you are.  But none of those advantages necessarily  make you happier. In fact, the guy who owns that orange Lamborghini probably cries himself to sleep wishing that he had the red McLaren.  And I’m sure there is something that makes the McLaren owner covet something.  I just can’t think offhand what it is.

The Embassy Suites room was supposed to be accessible per our reservation, but that didn’t work out.  It’s a huge hotel with only six accessible rooms.  One was taken, and the other five were under “renovation.”  Embassy Suites blamed Expedia for the mix up. The accommodations were beautiful, expensive and not at all accessible. We made it work, but things shouldn’t have to be that hard. One accessible room in a large, fancy hotel is disgraceful. I will say that service in the common areas was excellent, and we encountered no problems with service dog acceptance.

Before crossing the border to the hotel, Justin and Julia took a ride on the Maid of the Mist from the American side, while I hung out with Elvis the dog on the observatory platform high above.

I’m not a fan of crowds or boats, but I had an unexpected experience while hanging out with Elvis on the observation platform.  A family from India asked to take a photo with Elvis.  I reluctantly agreed.  Then another family asked. 

And pretty soon, a whole group of families starting lining up to take a photo with the dog.  One little girl stuck her hand in Elvis’ mouth.  I tried to explain that it wasn’t a good idea because the next dog might not be a gentle service dog trained to put up with such nonsense.  The girl’s mother responded by advising me that the little girl didn’t understand English.  I decided that would be the last photo, and we retreated to less crowded conditions off of the platform.  Of course, children cried.  Elvis had left the building.

On Day 2, Julia and Justin took a tour behind Horseshoe Falls on the Canadian side.  This short video captures Justin’s glee.

Later, Justin gave poutine a try, while I sampled the local IPA.

Julia and I hadn’t been in Niagara Falls since our honeymoon many years ago.  We both enjoyed our return visit, and Justin had a blast.

North Heading

June 2nd:

In Lexington, we stayed at a Red Roof Inn, known for cheap rates, marginal rooms and questionable housekeeping but excellent wheelchair accessibility.
On the night before we checked out, a drunk but honest young man pounded on our door and confessed that he accidentally dropped a full beer can off his balcony and dented our van parked outside the room.

I looked outside at the dented van. It was someone else’s van. Our van was parked two spots down.

Our next stop was Erie, PA and a Quality Inn, which was supposed to be accessible. We took a big step up in price ($129) but somehow ended up with similar questionable cleanliness and less accessibility.

Our portable shower chair would not work on the toilet or the bathtub.. We made it work by doing manual bathroom transfers (which means I pick Justin up and move him around). There was a flimsy bath stool that made things a bit easier.

The highlight of our evening in Erie was dinner in Little Italy at a small Italian restaurant. BYOB was the only option, and we were unprepared, so one of the workers volunteered to run up the street to the liquor store with our $20 bill and buy a bottle of red wine for dinner. He showed excellent judgment. Our dinner was delightful, and the service was excellent in all respects.

After dinner we drove down to the lakefront, ate some soft serve ice cream and watched the sunset.

Except for the motel, we liked Erie, but our final destinations were north of the border.

Lexington, Ky

May 30th to June 1:

We were in Lexington for our niece Anna’s high school graduation. She will be attending Brown University.

I am not a gregarious, social person, and this was a large (wife’s side) family event lasting several days. I won’t spend a lot of time discussing the graduation, except to say that we are all proud of Anna. She is a very intelligent young woman with a bright future.


On the day after graduation, my brother-in-law Scott suggested a trip to West Sixth Street Brewing, which Scott describes as one of his favorite places in the world. It was an excellent suggestion.

I had a Lowbeam New England IPA, while Scott enjoyed the Meadow Berliner Weiss. Then we ambled next door to Smithtown Seafood. I had the catfish & grits. He had the shrimp & grits. Dessert was a cocoa porter for me and a heffeweisse for Scott.

This concludes the southern portion of the road trip. We are headed north.

Nashville Raindrops

May 28-29

Our stay at the Music City Embassy Suites was outstanding: views of the city from the 8th floor, walking distance to many attractions, and great wheelchair accessibility. However, the weather did not cooperate.

There were a few breaks in the rain, and we took full advantage. On Monday, we walked about 30 minutes to the honkeytonk bars that line the streets for about three solid blocks.

At the first bar, we stood at the door and looked in to see if there was room for our motley crew. The singer on stage called us out to come in to a nearby open table. The country music and the beer was good. Although the band didn’t know any Townes Van Zandt, they did fulfill my request with an old Johnny Cash tune from the Folsom Prison album.

Monday night, Julia and I walked over to the Parthenon replica at a park near Vanderbilt University.

On Tuesday, we all walked downtown to view the state capitol and other state government buildings.

After all of that hard work, Justin was ready for a hot dog, and we were ready for a beer. The Nashville farmers market provided the perfect respite from the rain.

I was drinking a Bearded Iris Homestyle IPA, which might be the best IPA that I have had this year.

The rain continued that afternoon and evening, although we did sneak out for some Ben and Jerry’s ice cream between showers.

Next up: Lexington, Kentucky.

Walking in Memphis

May 25-28

To celebrate Justin’s high school graduation, we are on a wheelchair van road trip with the first stop in Memphis.

Traveling with Justin can be a lot of fun but sometimes also very frustrating. We had trouble finding accessible accommodations in every city stop on this trip.
Julia booked us at the Hilton. When we arrived, we discovered that all of the handicapped rooms were in the basement/parking level.

Our room was accessible for perhaps an older person who could walk but needed a rail support for the toilet or bath. However, we had asked for a wheelchair accessible bathroom with roll in shower. The bathtub, narrow door and tight spaces didn’t work.

An hour later. We were settled into a room that worked. It was located in the very back of the basement floor next to the staff break room door. But it worked.
The pool had a lift for disabled people but could only be reached by negotiating a flight of stairs. We asked how a power wheelchair user could access the pool. Each employee we asked looked at us like we were aliens. No one knew.

This is often business as usual for wheelchair consumers in our country. Things are better with the ADA (Americans with Disability Act). But we have a long ways to go with regard to access and respect. It isn’t as though our room was cheaper.

Think for a moment how races or genders would feel about being segregated in hotel basements or restaurant side rooms. Or ushered into the back room or freight elevator representing the handicapped entrance.

We were pretty tired when we finally got settled into our room and got unpacked. Still, we had time for some Memphis barbecue.

On Saturday, Julia and Justin toured the Civil Rights Museum while I took a long stroll to downtown, Beale Street, and the riverfront. I ended up drinking a 201 Poplar IPA at Earnestine’s and Hazel’s.

We met up for an afternoon stroll around downtown, stopping for gyros, and listening to music at a riverfront festival. On Saturday night, we dined on delicious fried catfish at the Soulfish Kitchen, along with sides of fried okra and collard greens.

On Sunday, we returned downtown and toured Old Dominick Distillery. Our guide did a great job, and the location provided excellent accessibility for Justin who enjoyed it all including fresh squeezed lemonade at the end of the tour. Julia and I sampled some of the distilled stuff.

Sunday evening, we ate burgers at Huey’s and listened to live music. Although it was crowded, staff did a great job of finding us a table and creating a path to get there. Food, service, and music were awesome!
Next–Nashville.

Changes

“Well, I’ve been afraid of changin’
‘Cause I’ve built my life around you
But time makes you bolder
Even children get older
And I’m getting older, too.”  (Fleetwood Mac-“Landslide”)

 

 

Yesterday, my son graduated from high school.  For many reasons, education for Justin has been a battle.  He overcame many physical and social obstacles.

 

 

Today, we spent a couple of hours at his new school and home:  University of Wisconsin-Whitewater.  He plans to major in social work and will start a summer transitions program in July.  There are still unknowns and obstacles ahead, but we will take those day-by-day.

 

For now, we can sit back and celebrate his victories.