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April Update

  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

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.


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