Honoring — and missing — my mother 5 years after her passing

March is here, my least favorite month. My mother passed away on March 29, 2020, and I’ve hated this month ever since. Because she passed at the end of the month, I’m forced to anticipate this anniversary for almost all of March.

My mother was the most loving, caring, and patient person I’ve ever encountered. She was a pillar in my life. Thankfully, I recognized it when she was alive and shared my feelings with her daily. We had an incredibly close, symbiotic relationship, although I think she contributed more than I did because of her selflessness. She would show up to help me with something, and then I’d later learn she was actually sick but didn’t tell me. She put my needs above her own.

Recommended Reading

December 8, 2023 Columns by Kelly Wallis

How we’re honoring a gift from a Sanfilippo child and her family

A grandmother’s steadfast love

I share this tale because my mom was also a big part of my daughter Abby’s life. In 2017, Abby was diagnosed with Sanfilippo syndrome, a rare, genetic, neurodegenerative, and terminal disease. As Sanfilippo progresses, Abby continues to lose skills and requires more support. My mom was a huge part of that support system.

My mother lived alone and was quite independent for many years, so she was very involved with my little family of four. She was in the room with me during the births of both of my daughters and was always there when I needed her while raising them. When Abby was diagnosed, my mom was absolutely crushed. Unfortunately, I was diagnosed with stage 4 cancer just a couple of months after Abby’s diagnosis. The year 2017 proved to be the hardest of our lives.

Hindsight has revealed to me that my mom was quite depressed in her last years. That’s understandable, considering the gravity of both mine and Abby’s diagnoses. I don’t think I acknowledged it enough and didn’t consider her feelings as much as I should’ve. In her persistent, loving way, she soldiered on and continued to support us without fail. She never wavered and was there for anything we needed.

Does Abby know her grandmother has passed?

I often wonder if Abby realizes my mom is gone. I hope she doesn’t, because I don’t wish this grief on anyone. My gut tells me that Abby doesn’t know, only because of her cognitive decline. Her awareness has deteriorated so much over time. But this example is a situation where I’m thankful for her lack of awareness. The last thing I want is for Abby to experience sadness on top of everything else her body is trying to handle.

In my previous column, I mentioned my thoughts on heaven and being reunited with Abby after she passes away. I believe we’re destined to be saints in heaven after we die. For me, this belief provides solace when dealing with my grief when I think of Abby’s death preceding my own. I also feel peace when I think of the reunion I’ll have with my mom. The way she lived her life assures me that she’s in heaven waiting for us.

Note: Sanfilippo News is strictly a news and information website about the syndrome. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sanfilippo News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Sanfilippo syndrome.