When I opened my eyes again, there was a startling visitor on my leg. I laughed out loud and allowed my little guest to explore a bit. After all, it found me yet again. The beetle crawled on my finger, plodding a course across my hand, bushwhacking through my arm hair. Every tickling step followed by 5 more. When it arrived at my bicep, tears sprang to my eyes.

I recognize this is a BIG topic, and I’m merely scratching the surface of this conversation. I also know that everything I share is coming from my own perspective and education as a cisgender, heterosexual, married woman in her 40s who has loads of built-in advantages in life. I want to share my experience as someone who spent my entire childhood and the majority of my adult life completely immersed in a lifestyle that orbited around religion. In the last 7 years, I’ve explored viewpoints from many different religions and spiritual practices, and have settled somewhat on a set of values that help me love others in a way that most deeply aligns.

For years, our family and friends wore purple. I would post about our ever-evolving experience with the disorder. I shared at Anni's school about why she was the way she was, about differences, and a kindergarten perspective on genetics. I sang one of my favorite songs from Mr. Rogers, "It's you I like, it's not the clothes you wear, it's not the way you do your hair, it's you I like..." I will never forget the little boy in Anni's kindergarten class who cried as I sang that, feeling so deeply the truth that in many ways, Anni was just like any other kid.

The greatest factor in positive well-being is connection and meaningful relationships.

When people go through hard times, they need other people. Meal trains, cards, flowers, prayers, donations in their honor...yes, all lovely and wonderful acts of kindness and solidarity. But do not neglect to be present--physically, emotionally, and mentally present for and with those who are suffering.

This is hard to show up when you don't know what to say. You don't want to mess up or make it worse somehow. You panic when you see them at the grocery store. You don't want to say the wrong thing and you don't want to use the often touted cliches:

PROFESSIONAL EXPERIENCE

2008-2024

-Managed comprehensive development programs for multiple children ages 0-14, focusing on academic achievement, social skills, and emotional intelligence

-Developed and implemented daily schedules balancing educational activities, recreation, and essential care routines for up to 3 children simultaneously

I gave a TEDx talk.

I typed into the chat bar:

“What’s a word that encompasses feeling mad, sad, longing, tired, grief”

Melancholy.

I put the kids’ bikes on the porch, angry that there are only 2.

I’ve stopped saying, “I’m sorry.”

Not in the heartfelt, knowing I messed up and seeking to repair, “I’m sorry”
but in the casual way I apologize for taking up space.

We remember moments experienced through a small black box
and we watch the screen as we watch for moments
to capture the scene
freeze the feelings
select the sense of being alive

I’m working on inviting more silence into my life.

My inner world, my outer world.

Put the phone away. Put the book down. Turn off the podcast. Quiet the mind. There are too many things pulling at my attention constantly. For years I have underestimated the power of stillness. Of a nap in the sun. Of the quiet, short moments of gazing into my children’s eyes. I am told in not so many words but certainly in so many ads that I should be doing more, buying more, trying more.

Over the next several months, I watched in amazement as new leaves sprouted, shiny and green and healthy. The bush grew twice its size, and when I saw multiple flower buds I just about teared up as I realized the power of this example as a metaphor for life:

Pruning is essential in personal growth. 

Resilience is the ability to adapt to change, cope with challenges, and bounce back from setbacks. It is a key skill that can help us to navigate the ups and downs of life with grace and strength. However, it’s not something that we are born with. It’s a skill that can be developed and strengthened over time.

Everything reminds me of her. I looked desperately for signs of her in the first weeks after her death, and now the reminders close in on me and suddenly I’m frozen in place at Target, with an urge to find a cute new top for Anni. No place for that urge to go, except in hot tears down my face.

From my bed this morning hearing them sorting the gifts that were freshly placed last night, knowing they’re doing their own tally to make sure it’s all even and fair.

I also have been shopping for urns. Looking for the perfect ceramic container for Anni’s ashes. Pages and pages of options in the catalog from the morgue, and endless websites and none of them feels like Anni, and this is the worst type of shopping and also feels sacred.

She didn’t fight
She danced.
A guide
A mentor
A light
A quiet acceptance of the surgeries and doctor appointments and feeding tube and seizures
A smile on the hardest days
She entered the world “I’m here”
And exited the world “I’m not”

I was kicking up dust, navigating rocks and tree roots, sweating puddles into my tank top. I was hiking to a lake and was pushing myself to keep up a good pace. I passed several people, always with a cheery on your left or beautiful day, isn’t it? Then I passed a woman who said to her hiking buddy, “What a showoff!”

I laughed out loud and kept going, her comment rolling around in my mind.

Sometimes I hesitate to share what I believe because my beliefs are subject to change with new information.

The more I evaluate my statement above, the more ludicrous it is that I feel any sense of shame for changing beliefs. And then I remember that I was taught from a young age to be proud that I was privy to divine knowledge, the secrets of the human condition, the one and only truth, and then it makes sense why I hesitate to share my shifting, flexible beliefs.

What doesn’t kill you makes you stronger.

But what if I don’t want to be stronger?
What if stronger sounds
impenetrable
independent
intact
What if I want the hard things in life
to make me soft

I was having a conversation recently with a woman who works for a national non-profit that assists families impacted by MPS (the type of disease Anni has), and she asked me this question:

“What makes the difference between someone who does amazing things in the world, and someone who can’t get out of bed?”

Do not let it harden you.

Do not let their words, their stares, their judgment, their whispers, be bricks to create an impenetrable wall around your heart.

Stay soft. Stay flexible. Stay open. Stay vulnerable.

It will be hard at times. You may feel many stings. You will hesitate to trust again. You may open yourself to others, slowly, and find that they were not safe to share your beautiful heart.