Columns

I’m Struggling with Bitterness This Holiday Season

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…

Dealing with Jealousy and Other Emotions

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…

Dealing with the Emotional Toll of Sanfilippo Syndrome

Parents of terminally ill and special-needs children experience a multitude of emotions. Our feelings lie across a wide spectrum, and sometimes we feel many emotions at once. Each person’s reaction is different, too — no two parents are exactly alike. However, I think that we all experience similar feelings at…

My Advice to Other Sanfilippo Siblings

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 it, I thought about the small, often overlooked population of Sanfilippo…

Growing Closer with My Dad

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 was smart and should have behaved better. We had our share…

Feeling Isolated While Parenting a Sanfilippo Child

Raising a special-needs child can be isolating. You think no other child is like yours, and other parents won’t understand the daily challenges you face. When I thought my daughter Abby had autism, I didn’t join a support group or seek out other moms of children with autism. I felt…

Sanfilippo Weighs on My Relationships

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 diagnosis of Sanfilippo syndrome would affect my friendships. I was carrying…

Parenting Siblings with Different Needs

Children with Sanfilippo syndrome often have neurotypical siblings. These are rough waters for parents to navigate. You love them equally, but how do you adequately care for their differing needs? My oldest daughter, Abby, has Sanfilippo syndrome. Her sister, Emily, is unaffected. Emily is incredibly smart, beautiful, kind, and…

How Sanfilippo Syndrome Has Shaped My Concept of Sisterhood

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 sibling, as I’ve mentioned previously, was (and is) difficult. It’s easy…

Please Ask Me About My Child

People often don’t like talking about sad topics. They probably feel they lack adequate words. Most want to offer advice, or say something to make another person’s life better. But if you have experienced a sad event, you can’t avoid it. You wake up thinking about it, and it is…

My Faith Brought Me Comfort at a Turning Point in My Life

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 into remission, but the threat of metastasis loomed. I looked at…

My Daughter Has a Terminal Illness. Now What?

My daughter Abby was diagnosed with Sanfilippo syndrome almost two years ago. It took a while to live with the shock of the diagnosis. Not long before she was diagnosed, I received the news that I had cancer, so my family was already in “adaptation” mode. We had shifted to…

My Daughter’s Journey to a Diagnosis

My daughter Abby was 22 when she was diagnosed with Sanfilippo syndrome. We were devastated. Like any other significant event, things are now classified as “before” or “after” the diagnosis. Abby was somewhat self-sufficient as a child. She could eat by herself and get dressed with some assistance. She…