Finding My Peace with Sanfillipo — Emily Wallis

I have an interesting relationship with my sister, Abby. Because she has special needs, our relationship has always been rocky. I often would become jealous of the extra attention she received, and it weighed on me for many years. When Abby was diagnosed with Sanfilippo syndrome, a rare…

I’ve known for a long time that I have anxiety. For obvious reasons, it hit an all-time high when my mom was diagnosed with cancer and my sister with Sanfilippo syndrome, which is terminal and has no cure. From that point on, I constantly worried about the future.

I recently accepted a teaching position out of town, and am moving into a new apartment this week. As exciting as this is, I can’t help but be sad about leaving my family. Extra emotions come with being a Sanfilippo sibling, including the guilty feelings that accompany events like…

The current state of the world is difficult for everyone. I’ve thought a lot about my sister, Abby, my family, and other Sanfilippo families. It’s been the perfect time to reflect on what our life is like behind closed doors. Last night, my mom was upset…

I’ve experienced several defining moments in my life over the last five years. My mom was diagnosed with cancer in 2015 as my senior year of high school began. We received my sister’s diagnosis of Sanfilippo syndrome, a terminal illness without a cure, in 2017 — the same…

My favorite part of writing columns for Sanfilippo News is the opportunity to reach people both in and outside of the Sanfilippo community. In this quarantine, we’re all sort of in the same boat. We’re locked in our houses, anxiously watching the news and wondering when exactly we’ll be able…

Last week, I passed an exam that will allow me to begin teaching this fall. I thought it would be fitting to reflect on how important teachers have been in my life, and how being a Sanfilippo sibling will make me a better teacher, just as it’s made me…

If I don’t have a topic in mind when it’s time to write a column, I read articles. I look into the lives of other siblings of special needs individuals, delving into the struggles, pains, and joys of their respective experiences. From this, I usually find…

I spent a lot of time with Abby a couple of weeks ago. Her caregiver was sick, so I knew I’d be spending several days with her. I had two options: I could be angry at Sanfilippo syndrome, which makes caregiving necessary in the first place, and fall…

It’s been a while since I’ve had what I consider a “depressive episode.” I had one this week. Some may argue that feeling low for a few hours shouldn’t qualify as an episode, and I’m not trying to diminish the severity of depression. However, the crippling…

Jan. 1 always brings up difficult feelings for me. Even before Sanfilippo syndrome entered our lives, New Year’s was a holiday for reflection — which isn’t necessarily an easy thing to process. Each year, thoughts about what the coming year has in store and what next Jan. 1 will look…

In this column, I want to focus on a word that has been particularly difficult for me to talk about in the past. While it has synonyms such as envy or desire, this week I’m writing about the “J” word: jealousy. It’s hard not to be jealous sometimes when particular…