Dad never liked baking, but in middle school my ultimate goal was to make him a part of our Christmas sugar cookie decorating. Unbeknownst to us, he was already sick. He promised that he would help out the next year, or maybe the next. He never did.

My dad passed away from Frontotemporal Dementia on Friday, Sept. 6 of 2019. FTD is a degenerative brain disorder affecting functions like behavior, speech and empathy, eventually leading to their death.

When September passed and I was able to deal with all my classes again, people seemed to believe the worst of my grieving was over. Instead, I’ve been thrust into a season of firsts: my first homecoming, my first Halloween, my first musical without him there. As we enter the holidays, it’s as if every memory is constantly teeming at the back of my mind, waiting for some kind of acknowledgment.

What is it about the holidays that makes grief so heightened? In my case, it was less about the holidays themselves and more the time I spent with my dad surrounding them. Since my dad worked full time, breaks were our chance to be together. He would film home videos as my mom ran last-minute Christmas errands; he walked me up to the houses with scary decorations on Halloween; we sat by each other each time we watched the Thanksgiving Day parade. I never truly realized how much time I used to spend with my family during the holidays until the core part of my routine memories was gone. Where I used to have my dad without blinking an eye I now spend every day wondering how I’m going to fill that void.

My issue is that I don’t know what I want. Since October I have been engaged in a constant moral battle- do I distance myself from memory this season or should I do everything in my power to keep it alive? I don’t think there’s a clear answer. 

There’s this instinctive expectation that people should grieve a certain way. Everyone knows the five stages of grief- denial, anger, bargaining, depression, and acceptance- but unless they’ve truly experienced them, most people view it as a straight line, leading to a life of complete acceptance. When people saw me in brighter spirits a month later, they seemed to assume that was where I would be forever. In reality, my grief changes from minute to minute. At one point I may be comforted, glad my dad is no longer suffering and somehow feeling that my dad is with me. An hour later, though, one song can send me into a state of depression for the rest of the day. 

Grief is not something definable; it is different for every person, for every loss. My grief therapist told me that this process isn’t going to stop. Although I wish that everything could be better, I know that would never happen unless my dad was back, so in a way it’s comforting. I don’t have to feel guilty for the days when I feel like I can’t face it. I don’t have to feel guilty for the days when grief hits me hard. I am taking time to grieve, but since my dad didn’t have the chance, I know he would want me to take time to live too.

With and without FTD my dad was a sweet person. His behavior and empathy certainly took a decline over the course of his illness, and there were a few years before we knew he was sick that we thought he was completely apathetic. But FTD didn’t stop my dad from shining through. Towards the end, when he was no more mentally capable than a 3 year old, when each day he was suffering significant brain damage, if you asked my dad what he was thinking about he would say “thinking about how much I love you.” I know that if my dad was here and his brain was well he would make those cookies with us in a heartbeat. It might be too hard to make cookies this year, but I will spend every second of every day keeping his love alive.