On This Journey Together

I am, by nature, an external processor. I love to communicate and go deep with people way too fast (ask my husband when he wants to leave a party!). As a right-brainer, I like words and writing, and my gosh, give me an acronym to organize thoughts and I’m happy as a clam. But this whole blog idea, though 5 years in the making, has been a tough one for me to even begin.

When entertaining the thought of blogging about PANDAS, my mind flooded with so many questions:  How do I put the last 5 years of my son’s life on your screen in an articulate, organized way? How do I convey with equal parts empathy and hope how PANS/PANDAS has both tortured and blessed our entire family? How do I make this suffering of ours a roadmap for someone else who stands where we stood not long ago, or where we could find ourselves standing again with one significant relapse?

In writing this blog, I want to acknowledge the frustration and fear of lacking medical help, the overwhelm and heartbreak of a parent searching for answers in a sea of over-information, and the panic triggered by a child completely changing virtually overnight. I want to discuss the horrible monster of a disease that hides behind the ironically “cute” acronym of PANDAS. But, if I’m being fair, that would only tell half the story. This journey has had incredible moments of hope and goodness, silver linings of friendship and generosity, and a retrospective appreciation of God’s hand guiding us carefully down the winding road.

So, I pretty much decided to stop thinking so much and just start writing, with the hope that the posts that follow will make other families feel more understood and less judged, more hopeful and less confused, and ultimately more aware that no matter how isolating and hopeless PANS/PANDAS may feel, you are sharing the journey with other families. My desire is that in reading this, you feel seen and acknowledged, less alone and in the dark, and more informed. I want you to KNOW that there is hope for healing. And that when you get to the other side, your story may be someone else’s hope, too.

Looking forward to this journey together…

Lindsey