Columns

It wasn’t until I started sharing the story of my daughter, Liv, and her Sanfilippo syndrome on social media that I heard the phrase “glass child” for the first time. I’d posted about how special Liam, Liv’s brother, is. Someone commented on my post, reminding me to pay extra…

Parenting children is challenging. Parenting children with special needs or developmental delays is even harder. You must consider many factors: age, ability, environmental and situational dynamics, setting, time of day, and more. My oldest daughter, Abby, was immediately admitted to the neonatal intensive care unit after she was born and…

It’s been more than three years since our daughter, Liv, was diagnosed with Sanfilippo syndrome type B. And in that time, our family has raised close to half a million dollars — $452,000, to be exact — for the Cure Sanfilippo Foundation. This money goes toward research and support…

“I can’t wait to be out of the diaper phase,” I remember thinking as we prepared to potty train our daughter, Liv, when she turned 2. I think it’s natural for any parent to look forward to the next phase, even though the next phase always comes with a new…

March is here, my least favorite month. My mother passed away on March 29, 2020, and I’ve hated this month ever since. Because she passed at the end of the month, I’m forced to anticipate this anniversary for almost all of March. My mother was the most loving, caring, and…

“I think Liv has a lysosomal storage disorder,” the text message read. It was from a stranger — a pediatric neurologist and friend of my sister-in-law — who had seen a photo of our daughter, Liv, on Facebook. Liv was 2 at the time and had been through several tests…

The rare disease community includes some of the strongest people I know. Upon entering this clan in 2017, after my sister, Abby, was diagnosed with Sanfilippo syndrome, I found comfort in reading works by other rare disease siblings and family members. When I began this column in 2019,…

Being a parent is one of the joys in my life. I fiercely love my daughters and cannot imagine life without them. My youngest daughter, Emily, is 27 and teaches first grade. She’s the funniest person I know, and we have such a special relationship filled with laughter, prayer, and…

The emotional roller coaster that accompanies Sanfilippo syndrome can be bumpy at times, and I’ve been feeling the ups and downs more strongly lately. I’m speaking of my extremely volatile emotions when caring for my daughter Abby and accounting for her needs. There’s the ebb and flow of happiness…

“Are you ready?” I asked my husband as we stood on the steps outside of a massive, intimidating building. “As ready as I can be, I guess,” he replied. We nodded at each other and walked to the front door. It was time to attend the first high school…

Have you ever sat on a plane stuck on an airport runway for an extended period of time? In that scenario, there’s a delay of some sort, and you just have to sit there and wait it out. There’s nothing you can do about it. Maybe it affects your emotions,…

I gasp as I watch the numbers flicker on the screen of our digital scale. Is that 116? 118? It’s certainly not 122, there’s no way. The anxiety I’ve been trying to meaningfully work through the past few months threatens to escalate again. The screen finally freezes: 120.6 pounds. The…

As we sat in the Denver airport waiting to fly home, our 10-year-old daughter gave me a big hug. “This was the best vacation ever, Mom!” she exclaimed. “I had so much fun.” I smiled and hugged her back but then made eye contact with my husband over her head.

My oldest daughter, Abby, has Sanfilippo syndrome, a rare, genetic disorder sometimes referred to as “childhood Alzheimer’s.” This horrible disease has taken away almost all her speech and much of her cognitive ability. Her motor skills are also worsening, and she needs help when walking to ensure she…

“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…