Finding My Peace with Sanfillipo — Emily Wallis

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…

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 s…

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…

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…

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”…

I recently read a column about a teen whose brother has special needs. A lot of what the author said was spot on. She described what I experienced with my sister, Abby, when I was younger. As I read…

I have a love-hate relationship with the phrase, “Everything happens for a reason.” I understand why people say it and what it means on the surface. But when faced with a disease like Sanfilippo syndrome, it’s hard…

My relationship with my dad has always been about tough love. He has very high expectations for me, we’re both quick-tempered, and we have plenty of disagreements. When I was younger, my dad was strict because he knew I…

This week, I want to shed some light on a special group of people who carry me through this trying and emotional life as a Sanfilippo sibling: my friends. I didn’t know how my sister Abby’s…

Earlier this year, I wrote a post called “Special Sisters.” For this week’s column, I want to expand on some of the things I said about my special relationship with my sister, Abby. Growing up with a special-needs…

I have had many turning points in my life. I often divide my existence into “before” and “after” my mom’s and sister’s diagnoses, but I experienced another transformation after those milestones. Following the first diagnosis, my mom’s cancer went…

No two diagnosis days are the same. The day the phone rings with news of a diagnosis hits everyone differently, even among members of the same family. I remember feeling two distinct emotions on my family’s diagnosis day. The…