Your Joy is My Joy

In our culture, there’s a tendency to shy away from discussing loss. Conversations about death often feel absent, even though it is something that profoundly shapes who we are. Perhaps we avoid talking about it in the hope that by ignoring it we can somehow escape its reach. But the truth is, avoiding it doesn’t make it any less inevitable.

We can honor death in much the same way we appreciate the changing of the seasons. Winter, for instance, is a time for reflection and stillness—a season of turning inward and embracing pause. So it feels fitting to share this conversation with my mother where we reflect on our experience as caregivers for my late brother, Derek.

My brother was born with a rare genetic condition that ultimately claimed his life at seventeen, just a few months before he was set to graduate from high school. As one of his primary caregivers, he taught me the true value of life; that nothing is guaranteed, no matter how much our minds may try to convince us otherwise.

A couple of weeks ago, my dear client Jackie Shea shared a quote.

“You will lose everything. Your money, your power, your fame, your success, perhaps even your memories. Your looks will go. Loved ones will die. Your body will fall apart. Everything that seems permanent is impermanent and will be smashed. Experience will gradually, or not so gradually, strip away everything that it can strip away. Waking up means facing this reality with open eyes and no longer turning away. But right now we stand on holy and sacred ground, for that which will be lost has not yet been lost, and realising this is the key to unspeakable joy. Whoever or whatever is in your life right now has not yet been taken away from you. This may sound trivial, obvious, like nothing, but really it is the key to everything, the why and how and wherefore of existence. Impermanence has already rendered everything and everyone around you so deeply holy and significant and worthy of your heartbreaking gratitude. Loss has already transfigured your life into an altar"

This conversation with my mom is perhaps the most tender one I have ever shared publicly. Grief has a way of disarming us, leaving us vulnerable. Being a caregiver to someone who is suffering offers an opportunity to look at life squarely in the eye; to acknowledge the incredible gift it is to simply take a deep breath or to marvel at the miracle of being able to walk on two legs.

The holiday season can be especially difficult for those who have lost a loved one. I see you, and I’m holding you in this moment. I hope this conversation brings you some comfort and reminds you that you are not alone.

Lastly, there are some exciting things coming in the new year… MOTHERLANDS 2.0 will be released into the world in just a few weeks.

For now visit our new website, and join the waitlist to be the first to know about our new offerings!

4:29 Derek’s diagnosis and navigating early treatment12:55 Finding focus and creative solutions despite the constant fear14:34 The loneliness of an experience not many have experienced21:22 Navigating places and people that don’t prioritize accessibility27:16 Finding and building community28:24 Resources in schools and transportation for students with special needs33:27 When a child with special needs ages out of the medical system35:01 The expenses that come with caring for a family member with a disability46:37 The joys of Derek’s journey & the kindness of others56:01 Remembering and finding a meaningful way forward after loss1:01:30 How childrearing has evolved1:06:46 The transition into an empty nest1:08:47 Conversation as a cornerstone of parenting1:12:59 How spirituality, love, and compassion take you through difficult times1:15:06 Beauty now and how caregiving translated into doula work for Keely1:21:18 Debbie’s background in dance and the influence of movement1:23:42 Parting wisdom

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