Emily’s Story

My father Mark passed away in 2018 when I was 21 from cancer. About a month before he entered hospice, we went together to visit my mom in her small apartment about 15 minutes away from where we lived. She came outside, smiling and excited to see me.

My father then began his spiel, saying how when the time comes, he wanted my mom to promise him she would look after me. She agreed.

When we got back in the car, I cried, because I knew that wouldn't be possible.

Lori Jill was my mother. She passed away October 1st, 2020. 1 year and 11 months after my dad died. I was 23, but felt motherless long before that.

My mom was born with a neurological disorder called dystonia, and had a hard childhood. Her mother struggled with mental health issues and she often felt isolated and alone due to her disability.

Lori met my father, Mark, in high school because he also had a disability, cerebral palsy, and they ended up getting married and having me! When I was 3, we moved across the country from California to Pennsylvania for my fathers job. Until we moved, the family says she was an incredible mother. I look back at photos from that period of time and wish I could remember her then. We both look so happy.

When we moved, they say that is when the paradigm shifted for my mom. She began to retreat, isolating herself more, and her mental health struggles really came to light. Growing up, she rarely ever went on vacation or day trips with us. She would sleep a lot. She took a lot of medicine. She became very disconnected from us. At the time, I didn't really know or understand, but just knew she was my mother and that was that.

When I was about 11, she had a psychotic episode that put us in a lot of danger, and ultimately my dad decided to pull us out of the situation and they got divorced. From then on out, it was just my father and I, taking care of each other. The relationship between my mother and I became more strained as I got older, realizing what happened when I was younger and how uncomfortable I was when trying to talk to her. She would not make any sense, or she'd be fixated on something, or wanting to argue. It became really hard to talk to her rationally, and eventually we just didn't talk.

I separated myself in my teenage years, and when I went off to college nothing changed there. She would text me every so often, and because a part of me did care I'd make sure she was alive, and when she had some medical scares I'd drop everything to be there.

A large part of me carried anger and resentment towards her, for everything she put me through and her inability to be a mother. But then, on October 1st, 2020, I received a call that she was found dead in her apartment.

I had been anxiously awaiting this day for years, as my stomach would drop every time I had a number call me that I didn't know, anticipating it'd be THE call. It finally came true. There was no preparation for that as much as I thought I would be prepared. I instantly started sobbing, and the next week of figuring out her life and getting her cremated is a blur looking back.

Now that I am about 8 months out from her death, I'm starting to realize that she was sick. For the 24 years I have been alive, I always looked at her as Lori, the woman who couldn't be my mom, and not Lori, the woman who is sick and struggling to be who she probably wanted to be. I honestly still kind of see her that way, but I am working through it.

I have this newfound empathy for her, as now that she is gone I get to try and piece together who she was and who she never got to be because of her mental health struggles. I have discovered things about her I never even knew when she was alive. She wanted to be a writer, her dream was to have a family and be loved. Her favorite flowers were orchids, her favorite color was purple, and she was obsessed with Bon Jovi and animals.

What I have struggled with, is to have empathy for myself, and to allow myself the space to grieve what was, what could have been, and what will never be. Not a lot of individuals speak about complicated relationships and what that looks like in life after loss. It's messy, complicated, and changes day by day. You feel a lot of anxiety and guilt. Some days you honestly feel relief, and others your chest hurts from the pain and confusion.

Nothing can change what has happened, but what I can do is change the way I treat others and myself moving forward. I can have more empathy for those in similar situations like my mother. I recognize that everyone is going through something.

What my mother taught me is that I can carry every piece of our relationship and transform it into making the world a better place. No relationship is perfect, but I can carry who she was underneath it all and live the life she wanted for herself, and for me. I can carry and spread her childlike joy. I can carry and spread her kind heart. I can carry and spread her sense of humor. I can carry and spread all the things that made her Lori. There's still a place to grieve and honor her, even if it wasn't the typical mother-daughter relationship.

Our relationship was different, but it can also be different moving forward as I navigate this new world parentless.

I will live a life that my mom would have loved.