In a week, my girl will start pre-k at the local public school.

This new unknown is petrifying.

I know it should also be exciting; in my head, intellectually, I’m excited for her – she has been asking every day if its time for school yet, and I know she wants to try this. I want this for her too. But my body has been in perpetual fight-or-flight for weeks as I’ve been preparing all the paperwork, buying her tiny uniforms, meeting with teachers and nurses and the special education team, writing her emergency protocols, thinking about all the ways this could play out.

Evelyn’s mitochondrial disease means any big change to her schedule or increase in activity can be stressful, causing a mito crash and possibly a regression or even an irreversible health crisis. We’ve had several meetings with her team to try to plan it out in a safe and careful way. She will ease into the classroom for just an hour a day to start out. If she does well and doesn’t fatigue, we’ll gradually build out her day from there. She’ll have a one-on-one to keep her safe and a nurse on campus. She’ll have an emergency protocol and doctors on call. She’ll also have a mom and dad who are completely freaked out every day during that hour for the foreseeable future.

I want her to experience school, meet other children and feel the joy of exploring and learning with her peers. But I am constantly plagued with the fear that this choice could precipitate a decline that she can’t come back from.

Before Evelyn, back to school meant the end of lazy summer days and the annoyance of school supply shopping and early morning wake-ups. I never thought about what this experience might be like for someone with a child with exceptional or special needs. Now, I’m learning firsthand all the things no parent wants to know. I’m learning that parents of typical kids – parents like pre-Evelyn me – close our minds to these things, experiences outside our “normal,” just to protect ourselves from the fear of what could be. And now, with our family’s new normal, I’m learning to walk blindfolded into a future that I can’t predict or map out.

What’s most ironic is that Evelyn is not stressed or worried. She is just slowly walking me into this experience, eager and ready.