It's been awhile since I've posted. Justin's situation is hard to write about, but I know there are people who want to know what's going on with Justin, my son. In truth, he is getting sicker and weaker. For awhile,he made great progress, talking, eating, and getting back into his power wheelchair. Then he started getting weaker. His left lung became covered with secretions, and he needed surgery to scrape things out. Then a CT scan revealed more new spine fractures (total of 7). After that, he just hasn't been able to get over the hump. This week, Justin decided to discontinue the weaning from the ventilator. He is on full breath support and can no longer use the voice valve to talk without dangerous oxygen drops. Pain medication has been significantly increased to help him deal with the pain. It's a tough thing for a 23-year-old to confront one's mortality. We will continue this journey with Justin to the end to the best of our abilities. We
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.
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