08/01/2026
Lately I’ve found myself thinking a lot about advocacy and what it really means.
The moment your child is diagnosed, life stops being about what you want. There were so many things I wanted to do with Kinlee. Trips I wanted us to take. Places I wanted her to see. Experiences I wanted to give her while I still had the chance. But cancer doesn’t care about our plans.
There were times we turned down beach trips, vacations, retreats, and countless other opportunities because Kinlee was tired. Not taking her to NYC for the tree will ALWAYS hurt, but just 3 weeks later, we found ourselves chasing a helicopter holding our baby down the highway. When her body needed rest, we rested. When she wasn’t physically able to enjoy something, my wants no longer mattered. My job wasn’t to make memories at any cost. My job was to protect her, comfort her, and give her what she needed most, even when it meant saying no to things I desperately wanted to say yes to.
That perspective didn’t end when we entered the advocacy world. If anything, it became even more important.
Advocacy is one of the greatest gifts we can give our children. It funds research. It educates families. It gives hope to parents who have just heard the words, “Your child has DIPG.” It creates change that our children may never have lived long enough to see, but that future children desperately need.
But advocacy also comes with responsibility.
Every one of us should be willing to stop and ask ourselves a hard question: Who is TRULY benefiting from the decisions I’m making? Is it the cause or is it me?
Because somewhere along the way, if the attention, the opportunities, the recognition, or the experiences become the goal instead of the mission, we’ve lost sight of why we started.
I would give back every donation, every interview, every follower, every invitation, every opportunity, every headline, every ounce of recognition if it meant I could have one more ordinary day with my little girl. None of those things compare to hearing her laugh one more time. To holding her in my arms.
That’s why I’ve always believed our children are not platforms to build OURSELVES upon. They are the reason we fight.
Their stories are sacred. Their diagnoses are not opportunities. Their battles should never become a means to an end or for personal or financial gain. They deserve advocates who will always put the child before themselves and the mission before personal gain.
If this post makes you uncomfortable, don’t ask yourself who it’s about.
Ask yourself why it made you uncomfortable.
The answer to that question is often where integrity begins.