Helping Others During Times of Grief

Grief has been a prevalent part of my life for the past year or so. My mom unexpectedly passed away early last year, and because of the pandemic, her burial and memorial service were postponed to this summer.

I have spent a lot of time planning her service. This planning has involved many conversations with various people helping implement my vision for remembering my mom. It involved so many conversations with thoughtful, kind people, some of whom didn’t even know my mom.

One particular talk I recently had influenced me to write this column. Grief. It is such a heavy word. We talked about how many people are scared of grief, especially when confronted by it in another person. Most are scared because they fear the unknown. They don’t know what to say to someone who is grieving. We want to make it better and “fix” things. It is difficult to face a grieving person and be unable to help them.

Grief often appears in my day-to-day life also because of my daughter Abby, who has Sanfilippo syndrome, a rare and terminal disease. Parents, caregivers, and families of Sanfilippo children communicate with one another regularly. Because the disease takes these children’s lives, this community experiences grief all the time.

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Just in the last two months, five children I know of have died from this disease. It’s like grief boot camp, with training to be able to handle grief so that maybe it will get easier the next time a child dies. But it doesn’t get easier, especially for that child’s family.

When someone is in distress or grieving the loss of someone due to death, divorce, estrangement, or whatever other reason, what helps most often is your presence. Being there with them. Listening to them if they want to talk. And if they don’t want to talk, being silent with them. Holding their hand or hugging them, if that is helpful for them. Praying for or with them, if that is helpful or meaningful to them.

There are no magical words or acts that can fix the situation. But being wholly present with someone and affirming that their feelings are important and valuable is so impactful.

Ironically, my mom is someone who modeled how to help others who are grieving or just feeling sad. In my journey with cancer, while receiving chemotherapy, my mom came over every day, and we spent lots of time doing puzzles together. I lost my hair during this time, despite the doctors telling me I should not experience hair loss. As many know firsthand, it is devastating, and I was also blindsided by it.

I remember the day it happened, after a shower I had so much hair gone, and I sat down at the table to continue doing a puzzle with Mom. I just sat there crying at the table, and I was hopelessly sad. She sat next to me, cried some, too, and was just there for me. She knew there was nothing to say, but her being there was such a comfort. I treasure that time with her.

If you are dealing with grief, I hope you have someone who can be there for you. And if you don’t feel like you have someone, reach out to others. There are many caring people in the world — those who will help strangers out at the drop of a hat. If you encounter someone else who is grieving, just know that your presence and willingness to hear them out is a gift.

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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.