Sometimes overshadowed in my writing and PANS advocacy—though never lost on me—is my incredible daughter, Gillian. If you’ve ever met her, you know she is a force!

Gillian is smart, witty, and fun, and also deeply sensitive.

She’s our theater girl, who commands attention and immediately captivates the room. I literally gasped the first time I saw the curtains open to her on center stage, because she was such a natural and so clearly in her element. 

She’s also our middle school cheerleader, all smiles and spirit on the sidelines, genuinely supporting her peers.

And she’s our straight-A honor roll student, who we never have to remind to do her homework, because it’s usually done before she ever gets home.

She is full of life and adventure and has a powerful voice she’s not afraid to use to stand up for herself or others. She is remarkably independent but still not inclined to let her brother’s needs eclipse her own. 

By all accounts, Gillian is an exceptional kid. Which is not to say she’s perfect, of course. She’s still finding her way in the world, as she should be at the age of 12, going on 13 next month. National Daughters Day offers a welcome prompt to write about my beloved daughter and also to remind us—all of us—that we never know what hardships people are carrying behind the scenes. 

Gillian and PANS

Anyone whose child has PANS/PANDAS will tell you that this is a disorder that impacts the entire family. Isaac’s onset was at age four, right around the time Gillian had her first birthday, which means she cannot remember a time before her brother had PANS—before screaming, thrashing, throwing, and threats were part of the daily menu of behaviors he couldn’t control and we (his parents) couldn’t contain. Isaac, now 16, was not and is not a violent person, but his symptoms were frightening to witness and traumatizing to live with for over ten years. And although we were never in danger, our home didn’t always feel safe. Which means my daughter didn’t always feel safe. And that kills me.

At times, Gillian comes across as so confident, you would never know the trauma she has endured, the life experience far beyond her years that has etched its pain and unfairness into her young heart. Middle school is hard for ALL girls, no doubt. But the feelings of isolation, that nobody “sees” or “gets” you or understands what it’s like in your world, and all of the worries about not fitting in, are tapping into insecurities that were already there for Gillian, rooted in our family’s unseen story. Behind my daughter’s bold and outgoing personality is a well of complex emotions that have been her constant companion from early childhood.

There are so many things I wish I could go back and do differently, none more than getting PANS diagnosed from the outset. God knows we tried. But you can’t treat what you don’t know—and nobody in our life knew about PANS and recognized what was happening. This is why I advocate for PANS/PANDAS awareness, not just for Isaac or for others who have the disorder but for entire families who are devastated by its impact. I advocate on behalf of Gillian, too.

Like all parents, I wish I could make life easier for my kids. But easy is not the life we are promised, and that’s a lesson Gillian has learned from her very beginnings. We can’t go back, but we can move forward from where we are now. And after a couple of especially challenging years, Gillian is growing and thriving. She can finally exhale and lean into a new normal with her brother’s neuroimmune disorder in remission and relative peace at home. I’m so grateful for the progress our family has made, as much for Gillian as for Isaac. 

A Message for Daughters

Today especially, with Gillian in mind, I want to remind all of us who have daughters and all of us who are daughters of a simple lesson: “Be kind, for everyone you meet is fighting a hard battle.” (Ian Maclaren, 1897)

Middle school drama hasn’t changed much since I was a kid. Girls can still be pretty mean, intentionally cliquish and dismissive. But one thing I’ve learned over the course of my life is that girls—and women—can be pretty magnanimous, too, intentionally expanding social circles and treating others with remarkable sensitivity and understanding. We do well to remember this when we help them through the difficult days.

I have been the beneficiary of many acts of inclusion and kindness, and friendships that have added immeasurable depth and joy to my life. I do my best to extend them, too. These are skills we can model and teach, and celebrate when we witness them. And we should. May this be the legacy we leave to our daughters.