top of page
  • Writer's pictureEmily Johnson


You know the feeling when you’re sitting behind a car at a green light - their turn signal on - fully anticipating they will promptly step on the gas to execute said turn? But wait … there’s no action.

That’s how I feel writing this. The cursor blinking away at me on the blank page - nagging me - come on Em … waiting for words here: __ .

I've been struggling with what to write and what to share. How much is too much? How much is too little? It’s a weird version of the fairy tale ‘Goldilocks and the Three Bears.’

Except this isn’t a fairy tale. And we’re not talking about porridge. We’re talking real life and real adult shit. And here goes the proverbial car banging a left on Vulnerability Road.

I am struggling. I am struggling with cumulative grief and the cumulative effects of the trauma that my child’s diagnosis has brought upon my family.

I am struggling through it - yet I refuse to be defined by it.

I am making choices. Some choices may not make sense to other people and that’s ok. We’ve made the choice to split up our family and have my in-laws care for our other son (for the 2nd time) and I’ve made the choice to take a break from teaching at the studio. I want my other son to thrive and I am committed to keeping my studio doors open. These choices center around preserving energy and my mental health. We are working hard behind the scenes to regain stable ground and unless you are in the arena of parenting a child with PANDAS you will never understand the work this requires.

You will never understand what it feels like to bear the physical and emotional burden of constant physical assault - the biting, hitting, kicking and overall physical destruction that tears through our house - these are the symptoms. Symptoms of brain inflammation and immune response. Our once cozy home has turned into an empty war zone with Ty and I on the front line. Eighty percent of PANDAS parents make the decision to divorce and we refuse to be a part of this statistic.

I’ve ridden the undulating waves of grief since January when Miles “disappeared.” I’ve answered exhausting questions and spent countless hours communicating with providers and advocating for him. It’s been a full time job amidst running a small business during a pandemic. There’s been moments I’ve wanted to give up and there’s been times I’m shameful to share that I’ve wished this was “just cancer.”

It’s ridiculous to even wish this and yet at the same time I know it’s not. I know there are parents whose children are in the ICU sick with cancer who wish their kid could just be at home ill with some other disease. I remember when my brother became paralyzed - a part of me wished that he had died. And then almost 3 years later he did die - and I got it.

There’s nothing to wish for … only acceptance and hope. Acceptance of reality and hope for the future. And one thing that’s clear ... my lens is focused on what lies ahead. I’m optimistic that we will get through all of this. It will most likely be years before Miles will be in remission and years before my studio will rebuild to where we were pre-COVID. Getting through this would not be possible without the support of many people. And for that support I am grateful. Every damn day - grateful.

P.S. -

If you would like to learn more about PANDAS there are plenty of resources out there. This is one website you can visit.

557 views0 comments

Recent Posts

See All
bottom of page