Columns

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…

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…

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,…

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…

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…

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…

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…

There’s nothing like a global pandemic to provide some perspective. Being forced to stay home, practice social distancing, and work less can alter your point of view. It makes you reflect on your life and your relationships — especially those within your own family. One realization that has evolved from…

My daughter Abby has Sanfilippo syndrome, a rare and terminal disease with no cure. Every year my husband, Jeff, my other daughter Emily, and I host a 5K walk/run in our hometown of Houston, Texas. We want to do what we can to increase awareness of Sanfilippo and raise…

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…

My daughter Abby has a terminal illness called Sanfilippo syndrome. This condition has stolen so much of Abby from our family. Witnessing her decline is extremely hard. It is difficult now to remember what Abby was like before her disease progression. She used to talk in complete sentences. She…

I am raising a terminally ill child, my daughter, Abby. This has caused many to call me a hero, warrior, or fighter, among other things. While these are flattering terms and to be taken as compliments, I do not necessarily feel like they describe me. One reason people have used…

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…

My daughter, Abby, is 24 and has Sanfilippo syndrome, which will one day claim her life. I already feel like she’s gone, though. I had never even thought of the idea of grieving the loss of someone who is still living until now. It is a sad reality, but I…

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…

Parenting a terminally ill child carries emotional baggage. It can be subtle or sudden and feel like an extra weight to carry around every day. The feeling of bitterness particularly resonates with me and has developed over time. I am normally an upbeat, positive person. I am generally happy…

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…