← All Spaces

Uncertainty

Support for Parents of Children with Diagnoses
Starting Oct 22, 2026 5PM UTC

About this Session

So much of parenting asks us to live with uncertainty, but raising a child with a diagnosis can bring a particular kind of unknown.
There may be questions about development, treatment, school, independence, relationships, health, or what adulthood will look like. Sometimes there are clear answers. Often, there aren’t.

This session is about what it is like to live in that space between what we know and what we cannot know yet or maybe never will. We’ll talk about fear, hope, planning, control, and how uncertainty has changed the way we imagine the future.

About this Space

Come to a Space where you don't have to hold it together.
Parenting asks a lot of us. It often asks us to put our children’s needs, and sometimes even their wants, ahead of our own. It stretches our endurance, our patience, and our resources. When you add a diagnosis on top of what parents are already carrying, it can feel impossible.

Between care teams, doctor appointments, therapies, and illnesses, it can feel hard to find the capacity to even keep the dishes clean. We don’t just need a village. We need a whole city. This Space exists so parents can pause, be honest, and feel held by others who understand this kind of weight.

We can’t pour from an empty cup. Here, we practice staying full enough to keep going, together.

Low Pressure, Low Commitment
We know your energy and availability can change day to day. Join as you are, when you can. Seats are limited, so we ask that you release your spot at least four hours before the session if you’re unable to attend.

Community-Driven Support
This is not a therapy group or a medical support group. It’s a shared space for parents to connect on a human level. Our trained Keepers ensure everyone has time to speak and be heard. We do not fix, analyze, or advise. We listen, reflect, and hold space together.

A Note on Medical Advice
This Space is not for giving medical advice or directing others’ care. You are welcome to share your own experiences, but we do not tolerate pressuring others to follow a specific path. Every family has their own care team, and we honor the fact that no two journeys look the same.

A Safe and Confidential Environment
What is shared here stays here. Our digital platform is secure, and this Space is built on trust, care, and mutual respect.

What We Discuss
We talk about the realities of parenting through diagnosis: fear, grief, resilience, exhaustion, love, and hope. Topics are shared before sign-up to ease anxiety around joining. If you don’t see a topic that resonates, you’re always welcome to reach out with suggestions.

Who Is This Space For?
This Space is for parents and caregivers raising children with CP and other complex developmental or medical diagnoses. All family structures, identities, and experiences are welcome. Shaming, fixing, or forced opinions are not tolerated. Our intention is to create a place where parents feel seen and supported.

When and How Do We Meet?
We meet digitally every two weeks. Cameras are optional. You’re welcome to join from wherever you are, as long as you’re able to be in a semi-private space or use headphones to help maintain confidentiality.

Meet the Keeper

Hi, I'm Heather. I currently reside in the mountains of North Carolina where I split my time working for Totem and running a dessert company. Prior to living in North Carolina, I spent six years in Chicago where I founded a non-profit aimed at bridging the gap between people and …

Reach out to the Keeper: heather@totem.org
More from Heather (she/her)

    Building Something We Want to Come Home To

    with Heather (she/her)

    Oct 05, 2026 7PM UTC

    Join

    Fun Week!

    with Heather (she/her)

    Oct 07, 2026 11PM UTC

    Join

    Love Under Pressure: Diagnosis, Marriage, and Partnership

    with Heather (she/her)

    Oct 08, 2026 5PM UTC

    Join

    Trying on A Different Self

    with Heather (she/her)

    Oct 13, 2026 8PM UTC

    Join

    Falling into Change

    with Heather (she/her)

    Oct 19, 2026 7PM UTC

    Join

    The Power Of Comfort

    with Heather (she/her)

    Oct 22, 2026 4PM UTC

    Join