Time is a crazy thing. Some days it feels like my daughter just passed away yesterday and other days it feels like she has been gone for years. Ever since she has passed, my concept of time has been all over the place. I’m not sure if this is something all grieving parents feel, but it is the case for me.
My daughter, Casey, passed away just a little more than one month before her 10th birthday. We were already working on plans for her birthday party and we were going to go all out for double digits. I still have the decorations and party favors that we were working on sitting in my closet. I don’t know when I will be ready to deal with them.
The first few months were foggy. I was a mess and felt numb most of the time. She was my only child and to meet her needs, I was a full time stay-at-home mom. She was my entire world. When she left, she took a big part of me with her. We gathered friends and family on what would have been her 10th birthday and did a balloon release. The numbness I was feeling got me through those first few months and through her birthday.
Eventually, family and friends stopped checking in on me every day (or multiple times a day), eventually everyone else went back to their normal lives. I couldn’t. The life I knew was gone. I didn’t have a job to bury myself in, I didn’t have other children that needed my attention.
I had a big quiet house with reminders of Casey everywhere.
I thought about going back to the work I did before I had Casey, but it didn’t feel right. I spent 10 years being Mom to the most amazing little girl. My life was no longer all about meetings, deadlines, and technical details; instead my life was all about Casey’s needs and the disability community. I felt like leaving the community that had become like a family to me would be dishonoring Casey.
After some soul—searching, I decided I needed to find a way to stay connected with the disability community and to build a legacy for Casey. She was such an inspiration to everyone that crossed her path during her life and the work she inspired needed to continue.
My husband and I created a nonprofit to serve as her legacy and now we work every day in hopes of making her proud and helping other families like our own. I have been able to bury myself in my new work to help get through some tough days.
There are still a lot of days I find myself crying after seeing something that just makes me miss her so much that my heart aches. Every moment of every day, I am thinking of her. I do my best to focus on the good memories and not get caught up in the bad days.
Her 11th birthday recently passed as did the one-year anniversary of her passing. I was really worried about the anniversary. Honestly though, the days and weeks leading up to the day were worse than the actual day. There was so much anxiety worrying about it, and when the day came, I spent some time alone with my memories and honored her in my own ways.
But the day came, went, and I was okay.
Her birthday was a little harder. The year before, I was still so numb, but this year I was very aware that she was not here and she is not coming back. Casey always loved her birthday, so I wanted to do something for her, but I wasn’t up for doing a big party or anything on a large scale. Some of her little friends came over and we planted flower seeds in her garden. I am looking forward to seeing them bloom soon.
The past year has been hard. I am still very much lost, but I know I am going to be okay. I will see her again someday, and until then I will use every day I have to make her proud.
Talking with other parents who have shared experiences can be a source of comfort and strength. Visit Connecting with Other Parents.
During the COVID-19 pandemic, we asked parents of children with disabilities and special health care needs to share their tips and stories about caring for their children during difficult times.