Columns

It’s Time to Deal with My Anxiety

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.

Caregivers Should Take Time to Restore and Renew

The role of caregiver is a sacred responsibility. Caring for someone whose well-being rests solely upon you is an incredibly meaningful job. And it is a necessity, as there will always be a population that needs caregivers. Almost everyone at some stage in their lives requires someone to care for…

When Pushing Forward Is the Only Direction to Go

Loss is a theme that persistently has occupied my thoughts lately, not only because of current events in the world, but also because of my personal life. At 24, my oldest daughter, Abby, has Sanfilippo syndrome, a terminal disease that slowly is taking her from me. I’m losing her,…

Life Never Stops with Sanfilippo Syndrome

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 Find Comfort in Believing Loss Can Bring Peace

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…

Why I’m Feeling Numb

Do you ever feel like you are walking through life with no emotion? Getting up each day, going through your routine, but with little emotion attached to any part of the day? For some reason, that is my current situation. There are many reasons for me to be emotional each…

Finding the Silver Linings in Heartbreaking Moments

My 74-year-old mom unexpectedly passed away two weeks ago. It is still surreal to even type that statement. She was such an important presence in my life and my family’s life. My daughter Abby, who has Sanfilippo syndrome, had a very special relationship with her. My mom kept Abby…

Finding Your Home Base in an Uncertain World

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…