Columns

“Who’s ready to see the Easter Bunny?” I coo to my less than impressed 13-year-old. I’m sorry, he’s 13 and three-quarters, as of this month. He looks at me impassively and stifles a yawn. I’d let him sleep until 8:30 a.m., and he still wasn’t thrilled with me for waking him…

I recently had the fortunate opportunity to travel out of state to visit a dear friend. I have a disabled daughter who requires constant care and supervision, so it was a nice, yet brief, respite for me. I’ve known this friend for many years. We attended middle school through…

“Good morning, sweetheart. Ready to start the day with Momma? We’ve got a week of fun ahead of us!” I kept my voice light and happy as I woke up my son, Will, but my feelings were mixed. Will’s school district has added several extra weeklong breaks throughout the school…

“So how are you doing with the thought of leaving Will for that long?” my well-meaning friend asked as we discussed holiday plans after a workout class last month. “A week is a long time.” I looked at her speechless for a moment. I’d just told her that my daughter’s…

Starting a new year is exciting. It’s a time of anticipating possibilities, potential, and new beginnings. Christmas is behind us, and we start over. All the hastiness of the holiday season has slowed down, and we now contemplate what the new year will bring. During the holidays, there is an…

I sat in rapt attention in the dim theater, taking in every sound and motion on the stage in front of me. My husband and I had done it. We’d managed to get a babysitter so we could got on an actual date and enjoy one of our favorite holiday…

For many people, the holiday season is a happy, joyous time of year. It’s typically busy, as most of us prepare for family and friends to gather and celebrate. For others, though, this period can be sad and difficult, as they’re reminded of loved ones who are no longer here…

It was a cool spring night in early 2015 when we received the worst news of our lives. Our son, Will, had been diagnosed with Sanfilippo syndrome. How were we going to face this new journey? Within a few hours, we knew we wouldn’t have to face it alone.

Last week, my mom and I attended a fundraising event for the Cure Sanfilippo Foundation. It was an opportunity for us to spread awareness about Sanfilippo syndrome — a rare, terminal disease that has no cure — to many people who weren’t familiar with it. A slideshow…

My family recently had the pleasure of attending a gathering sponsored by the Cure Sanfilippo Foundation, a nonprofit that leads the charge in research, advocacy, and support for those affected by Sanfilippo syndrome. Eight children with Sanfilippo attended with their families. Several of us had connected via Facebook…

“Do we get to go to the Halloween party next week, Momma?” my 10-year-old daughter asked the other day. “We do get to go!” I replied happily. “They gave me the date a long time ago and we were able to schedule it in. Dad and Will are probably going…

Standing in front of my mirror, I fluffed my freshly curled hair. “Well,” I murmured, “let’s see how this goes.” I grabbed my bag and keys while calling for my daughter. It was time to drive her to school and get myself to work. Somehow, against all odds, I’d found…

At 25 years old, thinking about my future is scary. It will be filled with many life changes and milestones. As a Sanfilippo sibling, my future will also be filled with devastating loss and grief. At 28, my sister, Abby, has Sanfilippo syndrome, a rare, neurodegenerative disease. It has…

I recently attended the ADVANCE 2023 virtual conference about Sanfilippo syndrome, which provided a wealth of information about the disease: reports from researchers regarding experiments and findings, news of potential clinical trials and therapeutic advancements, and tips from parents on raising children who have it. As a parent…

It’s another season of chaos in our house. I don’t know why I’m surprised. Chaos is our normal. Life with our son, Will, who has Sanfilippo syndrome, is rarely easy. Sometimes the challenges we face are expected, given his condition. But other times they are things we never…

About once a month, a group of friends and I share our latest favorite memes. It’s always a witty and humorous collection, so I take a few minutes to read through them when they’re sent around. This time, though, one of the them stopped me in my tracks. It read:…

While chatting with a friend recently, I found myself talking about my sister, Abby, and my fears regarding her future. Abby has Sanfilippo syndrome, often referred to as a childhood Alzheimer’s. At 27 years old, she’s lost most of her basic life skills, and she’ll eventually lose her…

Our family recently gained a second caregiver for my daughter, Abby. Now we have two women who care for Abby and help provide respite for my husband and me. For families who have disabled children, caregivers are exceptionally important. They’re vital in allowing families to rest and recuperate. Abby…

Dear Husband, I love you. I appreciate you. You don’t have to go out of town the week before Father’s Day to prove how essential you are. With love (and sarcasm), Your wife You often hear about the bravery and courage of special needs moms, but there are a…

Recently, my parents created a TikTok account dedicated to my sister, Abby, who has Sanfilippo syndrome. One video they shared had pictures of Abby and me at different ages. As I scrolled through the comments, I saw one noting that I had gone from being Abby’s little sister…