About pages are weird.
How do I fit into a neat webpage 40 years of not only what I've done (simple) but who I am (infinitely more complicated)? One of my favorite quotes is, "Everything you say, you already know." Questions are the only way out of what I already know — so I've made a life out of asking the big ones, especially the ones we're not supposed to ask out loud.
Multi-gifted + multi-passionate
Am doing:
Hosting a podcast
Researching caregiver mental health (my honors thesis surveyed 58 caregivers of medically complex kids — half were never offered mental health support. I'm working on changing that.)
Building Nembry, so no parent faces a serious pediatric diagnosis alone
Facilitate grief retreats and mindfulness workshops
Speaking (TEDx alum)
Writing a book
Full-time mothering
Will do:
PhD (applying — ask me how round one went)
Publish the book
Change how hospitals treat the families of the children they treat
Travel
(this list is always a work in progress)
Have done:
BS, Psychology & Neuroscience, magna cum laude
Interior designer — including therapeutic spaces for special needs families
Closed that business on purpose when I figured out what I was actually here to do
Navigated insurance companies and medical systems for my daughter for 14 years
Stay-at-home mother
A bit more about me…
I used to think there was something seriously wrong with me. Why couldn’t I sit still in the neat little boxes that were built for me? I was a bossy kid. Big questions. Often too big for my britches. Somewhere along the way, I lost that part of myself. I did all the next-expected things, and (on paper) everything looked just as it should be.
My first child was born. A daughter, Annika. I became a mom, and that long-expected role was different from what I thought it would be. Not bad, just different. Then my second daughter was born.
And then the doctors told us that our first daughter was going to die in her mid-teens.
Life halted. All the normal things I expected were obliterated in a moment. For the next 11 years, I watched my amazing child steadily lose every skill she had gained. Talking in her husky little voice, walking and running, eating all the things…all those skills disappeared little by little. We managed seizures, surgeries, and specialists, knowing that there was nothing we could do to slow down or fix the degenerative, rare disease that was damaging her body and brain.
She died in December of 2022 at 14.
The experience of being Anni's mom changed me forever. Her short life made me think about my short life in a more expansive way. What's actually important? What does it mean to live fully, love wholeheartedly — and what did it mean for me to find myself again inside all of it?
So I went looking. I closed my business and went back to school in my late thirties, sat in classrooms with people half my age, and studied the science underneath everything I'd lived: grief, stress, resilience, meaning. I graduated the same year Anni would have. I ran my own research on caregivers like me and found out my experience wasn't an exception — it was the default. Now I'm building the thing I needed and never got.
I don't have all the answers. I have some, earned the expensive way, and a growing pile of better questions. If life has handed you something you didn't choose — or you just know it eventually will — you're in the right place. We can do the hard stuff together. I've had practice.
We don’t get to choose the hand we’re dealt, but we do get to choose how to play the game.
-me, at some point between arguing with a diagnosis and learning to live with it
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