Plot Twist – a Column by Valerie Tharp Byers

Moving From Helpless to Helped

One of the most difficult things about having a child with an incurable terminal condition is the feeling of helplessness that comes with it. When Will was diagnosed with Sanfilippo syndrome seven years ago this month, it was crushing to realize that we were going to bear witness to the…

The Gift of Grief Is Connection

March 5, 2015, was the worst day of my life. I had stumbled upon a story from the “Today” show about a little girl with Sanfilippo syndrome, and my heart instantly knew what my brain wanted to deny: My 4-year-old son, Will, had the same rare genetic disorder, which…

When Help Isn’t Helpful

A few years ago, I was chatting with a friend who was the primary caregiver for a family member with a terminal condition. Even though our stories were different, we had enough in common with caring for a terminally ill loved one that we could connect and have the “real…

I Mustache You, Do You See Me?

It happened. It came on so gradually I didn’t even comprehend what was happening until it was there. But there is no denying it now: Will has a mustache. I can’t ignore it any longer that my baby boy has a mustache. He has pimples. He has hair in new…

A Sanfilippo Parent Looks at 40

I was sore. It was nothing major, just the usual muscle aches following a good workout when you’ve been off for a while. It was late August, and the kids had returned to school. Summer is hard enough as a full-time caregiver to a child with special needs, but…

Some Kids Might Go to College in Diapers

“Don’t worry, they won’t go to college in diapers!” It’s the statement so many people give to parents as they go through the often difficult adventure of potty training. In the United States, potty training is normally started between 21 and 36 months, though only 40-60% of children…

The Things We Carry: Welcome to ‘Plot Twist’

Oh, the things my arms have held. I’ve carried my beloved stuffed animals and blankies, my school books and book bags, my moving boxes and furniture, and my babies. Emotionally, I’ve carried a sense of purpose, a sense of pride, a sense of responsibility. But the most significant thing I’ve…