This year’s Thanksgiving was difficult. I lost my grandmother in March, so grief overshadowed a lot of the gratitude that should be at the forefront of this holiday for me. However, having grief at the center of Thanksgiving, among other holidays, is common for those affected by terminal diseases.
My sister, Abby, has a rare, terminal disease called Sanfilippo syndrome. She was diagnosed in 2017, about a month before Thanksgiving. Things have been very different during our three Thanksgivings since then. This isn’t to say we aren’t grateful for many things, but living in constant wonder about who will be present at the next Thanksgiving makes it difficult to pinpoint joyful feelings.
Last week, I became emotional as we prepared our Thanksgiving meal. Not only was this year different due to the pandemic, but also I was simultaneously battling two types of grief. I thought a lot about my grandmother, who loved Thanksgiving because it was a day when the entire family was together, and I grieved her passing. At the same time, I live with a cloud of anticipatory grief hovering above me at all times.
It took a while for anticipatory grief to find its place in my head. After Abby was diagnosed, I grieved the sisterhood that we’d had when we were younger. Now, I live with the fear of knowing that this disease will take her one day, and we don’t know when. You can probably imagine how prevalent fear is during the holidays, especially holidays centered around being thankful and gathering together.
Before 2017, I sat at the Thanksgiving table and was overwhelmed by gratitude. After Abby’s diagnosis, Thanksgiving is a battle. Instead of focusing on the blessings that surround me, my mind is clouded with thoughts of who will be sitting at the table next year.
As a Sanfilippo sibling, I find that many things are taken away from us, including the “normal” holiday seasons. Of course, this is still a season of joy and togetherness, but anticipatory grief (or in some cases, the grief of losing a sibling) can weigh on a person, as do the inevitable questions regarding next year, and the year after that.
While this is among the most joyful times of the year, grief can appear in many places — while we’re sitting at the Thanksgiving table or putting up a Christmas tree. It serves as a reminder to love, hope, and cherish each moment together.
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.
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