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“Sweetheart,” a voice says as a gentle prod to my side starts to wake me. I growl incoherently. It’s got to be too early to get up. “It’s starting,” I hear my husband say. “The bad news is that the power already went out. The good news is that I…

June is a lot. I’ve written before about how the start of the summer impacts our family. Our son, Will, has a rare condition called Sanfilippo syndrome, and that diagnosis is thrown into full focus each June. As the school year ends, my caregiving responsibilities take…

I’ve written a lot about the past. My relationship with Abby, my sister, hasn’t always been the best, and it’s something I think about often. As I reflect on my relationship with her, I think about one of the biggest turning points, and how grateful I am for that period…

My 28-year-old daughter, Abby, has Sanfilippo syndrome. It’s a rare, terminal, genetic disease that is often referred to as childhood Alzheimer’s because it affects the body similarly. Most children with Sanfilippo pass away by their midteens, so the disease certainly takes its toll on the body quickly. However,…

“No, we are not moving. We can barely keep our heads above water with everything going on right now. How do you think we could add in a move?” I asked my husband incredulously. What was he thinking? This was nearly three months ago, in early March. Tim had recently…

“Mom. Mom!” I turn away from loading the dishwasher to find my daughter yelling for me and looking a little scared. “What’s up, sweetie?” “Daddy’s yelling for you. Will’s hurt. There’s a lot of blood.” My heart jumps as I tell her to finish getting ready for bed, and then…

I revealed in my column last month that I carry around a large amount of emotional baggage. Most of it is related to me having cancer and my oldest daughter, Abby, having Sanfilippo syndrome. My diagnosis was in 2015, and Abby’s was in 2017, so I’ve had several…

“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…