Plot Twist – a Column by Valerie Tharp Byers

The Hard Part Is Not What We Thought It’d Be

When people learn what Sanfilippo syndrome is and that our 12-year-old son has it, their reactions are immediate. “Oh, I’m so sorry.” “I can’t even imagine.” “That must be so hard.” Sanfilippo is a devastating disease. There’s no way around that. It’s devastating to the child, feeling frustrated as…

It’s 1 AM, so I Must Be Tired

It’s 1 a.m. on a Wednesday, and I’m sitting in my living room debating my options while listening to my 11-year-old son repetitively clap and growl over the baby monitor we still keep installed in his room. Will isn’t sleeping tonight. Which means I’m not sleeping tonight. Although none of…

What Will Our Daughter Remember?

Parenting a child with Sanfilippo syndrome results in many forms of grief. There is the diagnosis grief, when you mourn the loss of the future you thought your child had. There is regression grief, as you watch your child’s skills slip away day by day, stolen by a monster you…

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…