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 something that I can relate to in my own life, and I let the writing guide me to my own ideas. Read More
It’s been a while since I’ve had what I consider a “depressive episode.” I had one this week. I lacked motivation to do anything, go anywhere, or be around anyone for a while. Every bit of stress and each unanswered question about my life were at the forefront of my mind. When a wave of sadness hits like that, it holds me captive. Read More
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 flood my mind. Read More
Growing up with a special-needs sibling, as I’ve mentioned previously, was (and is) difficult. Read More
One significant aspect of Sanfilippo syndrome is its life expectancy — many of those with the disease don’t live beyond the age of 20. My sister, Abby, is a special case. She turned 24 in August, so she’s much older than most of the Sanfilippo kiddos we know. Read More