Remembering the Holidays Before Sanfilippo
The holidays can be a difficult time for me. My sister, Abby, was diagnosed with Sanfilippo syndrome four years ago, and since then, I find my heart pulled in two directions during the holiday season. On one hand, I’m grateful for the years I had with her before Sanfilippo took hold of her life. But I also miss those times.
Driving around local neighborhoods at night to see the various Christmas light displays has always been one of my favorite things to do at Christmastime. (Just ask the friends I drag along each year!) Last year, my parents and I took Abby to a neighborhood known for its fabulous Christmas light displays. As I snapped a photo of Abby looking out the window, I felt a familiar conflict arise in my heart.
I love this photo because I remember being in the car with my parents and Abby and listening to Christmas music as we viewed the lights. It reminded me of the times before Abby’s diagnosis, when we’d do the same thing every year. Abby would point out her favorite Disney characters and funny displays.
But the photo also makes me sad. The same joy isn’t there anymore on Abby’s face. She no longer has the ability to point out her favorite characters or colors.
It makes me wonder if I appreciated Abby enough before her diagnosis. I used to become so frustrated with her when she’d point out the same things during our drives. I was a teenager then, and I would overreact to my sister repeating things. But I’d love to hear her say those things now.
Holidays are hard for us now. For example, at Thanksgiving, I watched Abby pacing next to the dinner table while we ate our holiday meal. I thought about how things she’d do at the dinner table used to annoy me, such as the sounds she’d make while eating. Now, I’d give anything to have her sitting at the table with us again.
Opening presents on Christmas morning doesn’t take very long anymore. Abby and I used to take turns opening our presents, but now, our mom opens them and shows Abby what she’s been given. Abby doesn’t know to sit down and open her gifts anymore.
Whether I’m decorating, looking at Christmas lights, or singing Christmas songs, my memories of Abby before she was diagnosed with Sanfilippo seem to always find their way into my thoughts. This leads to regret as I wonder if I valued my time with her enough.
Sanfilippo has stolen a lot from my sister and our family, including our holiday cheer.
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.