A year ago this past Sunday, my mom died at the age of 56 after a lifetime battle with Type I diabetes. Her death, much like her life, was complicated and sorrowful. I grew up believing – in dark recesses I would never talk about – that I needn’t wonder if she would die early; I knew it was only a matter of when. Following complications from a broken leg, the when finally came last year. Knowing it was going to happen didn’t make it any easier when it finally did.

Grief has taken many forms during the past year, including me taking a literal baseball bat to my bed and beating it until my arms gave out. In other moments, things are calmer and more reflective, and I try to find the good memories from our too-short time together. For me, perhaps unsurprisingly, many of my happiest childhood memories of my mother took place within the confines of Lake Buena Vista. Just as I was a Disney kid, so was my mother and her siblings – my grandparents took my mom, aunt, and uncle to Walt Disney World for the first time in 1973, when my mother was 13. Ten years later, my grandparents took my mother, aunt, and me for my first trip to WDW. My uncle had died in a tragic accident the year before at the age of 20, and my mom and I were living

I’m in the shadows, my mom on the right, with Tigger – her favorite.

with my grandparents full-time following a messy divorce from my father. I still remember the flight down from Detroit. (I was incredibly excited and asked for a second dinner, and then promptly vomited it up all over the floor. My apologies to the poor flight attendant who dealt with that!) We stayed at the Polynesian, whose lobby I remember clear as day. I remember the old-school Mickey head balloons. The freely-roaming characters. The Skway. But mostly, I remember my mother: happy. Smiling. Content.

My aunt and me on the Skyway in 1984

A year later, another family trip, this time at the Contemporary. We watched the Detroit Tigers win the World Series, which elated both my aunt and mother. We went south and visited the Gulf of Mexico. Everyone was happy. I can’t imagine how much my family missed my uncle on both of these trips. He too was a Disney kid; my grandmother likes to tell stories about his first trip to the Magic Kingdom, and how he cried because he was so worried he wouldn’t get to see it all. In good times and in bad, Lake Buena Vista was my family’s happy home away from home.

Minnie, me, my mom, and my aunt – breakfast at the Polynesian

In 1987, my mother learned that she was losing her eyesight to diabetes. Before she fully lost her sight, she and I took what would be a final mother-daughter trip to Florida to visit my great-grandmother. Driving her grandmother’s borrowed car, the two of us went to the beach, tooled up I-4 with the windows down, listening to 80s music on the radio. We saw – and met! – the Tigers at their Lakeland spring training home, and then…we went to WDW together. Just the two of us. Even without fully comprehending what was happening to my mother, I knew that our visit was special. That I should remember it. And to this day, it remains one of the happiest memories I have of my mother. The two of us in our own world, in our favorite place, just being together.

This photo taken by my mom on our mother/daughter trip. Please don’t show this haircut to anyone.

Somewhere near Tampa; WDW still to come.

Less than a year later – after dozens of surgeries — my mother was pronounced fully and legally blind on her 28^th birthday. I was 7 years old, hardly capable of comprehending this sea change but intuiting that everything would be different. It changed me, and it profoundly changed my mom. Even though we lived in the same house, I lost her. Her inability to accept her blindness became the running narrative of her life, from the time the doctors pronounced her blind to the days and weeks before she died.

My grandfather, mom, and me, during the year in which my mom steadily lost her eyesight

She succumbed to dark depressions, sleeping in her room for whole days at a time. Sometimes she went to my school functions or went shopping with me and other times not; it was impossible to predict when bad days would give way to some sunshine. She was shrouded in a literal and metaphorical darkness, and while I could help her – I became a little adult starting on the day she went blind — she couldn’t really help me. I was small, often alone, and enveloped in an anxiety that never took a break.

One painful byproduct of this new reality was that the place we used to love together became the place I would go to escape her. In 1992, my family – minus my mother – took an epic trip to Walt Disney World, the first for my four-year-old cousin and his one-year-old sister. I had a mullet. I was sullen and obsessed with Guess jeans cutoffs. I took home an address book from our room in the Polynesian that I treasured like a prized gem. Beyond that, I have few actual memories of the trip, save a daily feeling of conflicted relief that I was not required to care for and about my mother. She was at home, alone, likely sleeping away the days that I was spending in the theme parks. I felt badly then; I feel even worse now.

Two years later, my ambivalence intensified. For months and months, I had looked forward to a WDW trip with my grandparents, aunt and uncle and cousins, our first trip together to Old Key West where my grandparents had recently purchased DVC points. I was especially eager for this trip because for nearly two years, my mother had been on a waiting list for a kidney transplant, the result of her worsening diabetes. It was unimaginably stressful on her, but also stressful for the rest of us, too. Literally the day before our trip, my mother got the call that delivered bittersweet news: a 12-year-old girl had died, but her parents had agreed to donate her organs. Her kidney was a perfect match, and my mother needed to be at the hospital as soon as possible.

Her surgery was a success, but there was a conundrum: did we stay, or should we go on our family vacation? Her doctors convinced my grandparents to go, as my mother would likely be fairly out of it for days following the surgery. There was nothing we could do from her bedside. And so the next day, we boarded our American Airlines flight to Orlando. 13-year-old me was over the moon to be going to our happy place. But after one good day in the parks, my mother called, distraught. She was alone, in pain, and miserable. Ultimately my grandparents changed their return tickets to fly home to be with her, leaving me with my aunt and uncle and cousins. It was a fun trip, but I felt like an outsider, a third wheel glomming on to my aunt’s and uncle’s family trip. Worse, however, was the guilt: I wasn’t with my mother. I couldn’t comfort her. I couldn’t be with her. I spent the rest of the trip drowning in shame.

This pattern continued until literally four months before her death last year. It held true during my College Program. It held true when my grandparents took five of my college friends and me for a week in 2001. It held true when my family had two major reunions in WDW, neither of which my mom could or wanted to attend. It held true on my last trip to WDW before her death: in January 2016, my girlfriend and I joined my grandparents for a week at Disney’s Animal Kingdom Lodge. I never told my mother, even when she called during that week. The guilt was crushing: there she was, struggling at home, dealing with a mountain of medical problems and waves of depression that would never end. How could I tell her that I was having fun without her? That I was simply having fun? And so I didn’t. And so I feel guilty.

Between 1992 and 2016, every trip I took to WDW was a special kind of reprieve, a week or ten days that I could savor before returning to the real world and its worrisome mix of dread and resentment and sadness.

My cousins and me on a family trip in 2001.

Every trip was a sacred week or so where I could not answer the phone and feel no (or at least less) guilt. That’s what I told myself, anyway. But the guilt was ever present: what used to be our place had become my place only, a place where I could have a particular kind of fun and relaxation that my mother could no longer have. 

There’s no redemptive ending to this story. I miss my mom terribly, and – as I did through much of my youth – wish I could have one more walk through the Magic Kingdom with her. I wish that for her, WDW could’ve been a continued place of happiness and solace, instead of a place she once went when life was easier and more open to her. Wherever she is now, I hope that she can find the peace and happiness that life so often denied her. For me, that means picturing her on I-4, smiling as the sun beats down and the wind ruffles her hair, headed to WDW without a care in the world.