NOVEMBER 2013

That was the last time all four Barrisons went on a vacation together. We drove to Florida to spend a week at the Magic Kingdom and then spent another week in Hallendale to recover from the week at the Magic Kingdom.

Rylie was 5 and Dylan was 2. Back then, Dylan was still a thumb sucker and took his blue elephant blankie with him everywhere he went. At the time, our biggest concern was making sure everything he ate was peanut-free.

Just before our trip, I received confirmation that I was the victor in a 5-month long battle with the school board. It was a tough, emotionally draining and stressful few months but after it was all over, I felt like I had defeated the Evil Empire and was ready for some much-needed R and R. I cut off all my hair as an overly dramatic symbolic gesture, certain the worst was behind us.

DECEMBER 2014

I drowned my new iPhone in the toilet. I got it the day we left for Florida and spent almost the entirety of the drive there configuring it (I had previously been a devout Blackberrian). I lost all of the pictures I had taken on the trip, our last trip as a family, save for the few I posted to Facebook.

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JUNE 2014

That was the last time Mr. Bear and I went away on vacation together. We went to Sandals in Grenada, a trip I won from work on account of being awesome. My parents were watching the kids while we were away and I was a bit worried about how Dylan would behave. It seemed as though his bypassing the terrible-twos was bringing on a double dose of the terrible-threes, or so I thought.

My parents spoiled the kids, as they’re wont to do (and I think obliged to do by some ancient ‘grandparents-must-spoil-grandchildren’ Talmudic law). My dad sent me lots of pictures of the kids having fun at the zoo, riding elephants, playing in the backyard and generally having a great time. He also sent me some really funny pictures of Dylan falling asleep in the most awkward positions.

Asleep before he could get the second leg up
Asleep before he could bring the second leg up

AUGUST 2014

After having the most successful year of my career, I left the comfort and security of the job I had for the past 8 years with one of the largest and wealthiest companies on the planet, to start my own business.  Leaving behind my pension was certainly a consideration but giving up health benefits didn’t even cross my mind. And why would it? I had two healthy kids.

SEPTEMBER 2014

Dylan was diagnosed with narcolepsy and cataplexy. Fuck.

SEPTEMBER 2016

I am self-diagnosed with Vacation Envy by the medical degree I earned at the prestigious School of WebMD. If you’re unfamiliar with the disorder, it is a subset of Healthy Kid Envy.

Going on vacation with Dylan is inconceivable. Unlike Vizzini, I use that word because I know it means what I think it means. It simply cannot be done.

Just taking Dylan downtown to Fan Expo was a logistical nightmare and a gruelling exercise in self-control. Mr. Bear drove his car to the subway at 7:30am, to be at the Convention Centre for 8:30am, to ensure he could get tickets when the box office opened at 9am. Doors opened at 10am, so I drove Rylie and Dylan downtown for 10:15am where we met up with Mr. Bear. Two cars, a pathetic transit system and precisely timed operations, all just to avoid the excruciating agony of having to deal with an impatient Dylan waiting in a line-up. And mind you, all that preparation was merely for stepping foot into the building. Once inside, a meltdown was imminent and our only hope was to ward it off for as long as humanly possible. Dylan’s entire life revolves around Star Wars, superheroes, video games and blind boxes. Fan Expo should have been his mecca but instead, he behaved as though someone was forcing him to drive to Thunder Bay behind a Gold Corolla. Five minutes in, he asked to go home.

Travelling anywhere with Dylan, whether it’s downtown or down the street, is peppered with obstacles. A typical excursion will include the following, now predictable, moments of un-zen:

  • He will inevitably play the sleepy card (sometimes legitimately, sometimes manipulatively);
  • He is guaranteed to perseveratively demand a screen of some sort;
  • He will ask to go home or, in the alternative, ask when we will be going home enough times to make you suspect he is an FBI agent testing out a new form of torture;
  • And the tiniest thing is certain to set off his sleep-deprived irritability into an inconsolable paroxysm (at which point we have no choice but to take him home, begging the obvious question of why we didn’t just stay home in the first place).

So now we stay home. Necessary trips to doctor appointments and grocery stores we, of course, have no choice but to endure, but leisurely jaunts, day trips and especially vacations with Dylan are now, sadly, avoided at all costs.

And truly, aside from my own selfish desire to go away, what would be the point of schlepping Dylan on a vacation? He would absolutely abhor everything about the travelling process starting with the drive to the airport, the walk from the parking lot to the terminal, the crowds, the lines, the endless waiting, the flight and even the destination.  Assuming we managed to get him through the flight without a screaming episode, it would be all for naught because anywhere we go will ultimately be less than home for him. He doesn’t like swimming or sand so a beach vacation is out. He doesn’t have the energy nor the interest to go sightseeing so scenic trips won’t work. He does not enjoy eating, shopping, drinking or gambling so Vegas is out too. Where would we take him? My sister-in-law has suggested the Star Wars Disney Cruise, but even if we assume he would be interested in seeing the characters, which he clearly was not at Fan Expo, that excitement would last maybe half an hour.  He’d give each character a hug, begrudgingly pose for a picture and then immediately ask when we’re going home.  “D, we just got here. We’re not going home for 5 more days and then we have to go back to the airport to take a two-hour flight home“.

giphy-1

 

So why not go on vacation without Dylan then? Equally as inconceivable. If Mr. Bear and I were to go away together, without Dylan, someone would have to watch him. This is a huge ask of anyone. Not only am I asking someone to watch a very challenging five-year, I’m also essentially asking them to give up sleep. Dylan goes to bed at around 8:30pm. He is up again somewhere between 11pm and midnight for his first dose of Xyrem. And then again between 2am and 3am for his second dose. He is up for the day at 6am, hungry out of his mind for breakfast. Dave and I have no choice but to accept this sleepless nighttime routine, but asking this of anyone else, is  simply, well, inconceivable.

The other option is for me and Mr. Bear to vacation separately. We’ve both done this since Dylan has been diagnosed. I’ve taken Rylie to New York a few times and Mr. Bear goes on road trips with his buddies once a year to watch football games. I can’t speak for Mr. Bear, but for me personally, these separate vacations are extremely taxing. Either I’m left alone with both kids or I worry about Mr. Bear alone with both kids. Parenting Dylan as a team is tough; parenting Dylan solo is nigh impossible. Without my consort, the ability to divide and conquer is lost. This is tough on multiple levels. Logistically, it becomes a nightmare because one kid wants to stay home all day and the other kid wants to be anywhere but home all day. It’s also emotionally tough. Working in tandem, Mr. Bear and I can tag team, taking turns dealing with Dylan. When alone, it’s all you, all day and all night, which is extremely mentally and physically exhausting.

There’s also the guilt that comes along with vacationing these days. I feel, as I’ve always felt, guilty when I travel without my kids. I feel guilty leaving the responsibility of dealing with Dylan to someone else. I feel guilty about enjoying myself when I know Dylan is struggling. And I even feel guilty about the cost of vacationing. A vacation is sheer luxury and seems somehow frivolous when that money could so obviously be better spent on additional specialists and therapists for Dylan, for Rylie, even for myself. We spend close to $2,500/month on medications alone, just keeping our family alive and/or functioning; spending three times that amount on a few days away feels incredibly wrong.

So for now, I vacation vicariously through my friends via Facebook. This summer I travelled the world! I went to Hawaii with the Posens; spent the summer in Innisfil with the Newmans/Luks; saw the best of Paris, Nice and Belgium with my parents; and I even went to Israel a bunch of times for like 500 bar/bat mitzvahs. Now all I need is someone I’m friends with on Facebook to go to Vegas, place a $25 bet on #4 at the roulette table, spend Sunday by the pool at the cabana and I will have gone everywhere I’d want to go, right from the comfort of my own home.