Twenty-Eight Years Later, My Body Still Remembers

Today marks 28 years since we learned our daughter had no heartbeat. On the 12th, it will be 28 years since we went through the gut-wrenching process of delivery with no happy ending.

I am not someone who believes we should stay in our grief. For me, learning to accept moments of grief, rather than pushing them away, has mattered. I’ve learned to let those moments fuel me, to work harder and live with purpose. But I also know this truth: our bodies remember grief and pain, even when our minds try to override them. Time does not erase loss; it teaches us how to live alongside it.

Loss changes you. I know for me personally, I was never the same after that experience. And that is not a failure, it is a reality. We don’t return to who we were before loss; we become someone new, shaped by what we have lived through.

I can try to pretend I’m unaffected, but my body knows. And in many ways, during these days each year, it begins to protect me, still, after all this time.

Why am I sharing this today, after 28 years?

This post is not about me seeking sympathy. It is about recognizing a gap in our society, an uncomfortableness with talking about loss. Miscarriage. Stillbirth. Loss to cancer. Trauma. Rare disease. NKH. We often avoid these conversations because they are hard, because they make us uncomfortable, because we don’t always know what to say.

And yet, these experiences are woven into our souls.

A beautiful pendant, gifted to me by our pastors wife, Nancy Blume.

Over the years I have talked with far too many moms and dads who say, “It’s been 40 years, and the pain can still catch me off guard.” Because loss doesn’t come with an expiration date. And because as a society, as a community, as humans, we can do better at honoring grief instead of minimizing it or rushing people past it.

Loss is loss. Whether it is at 6 weeks of pregnancy, at birth, at one year old, or at 35 years old. I do not compare my loss to yours. This is my loss, my experience, just as yours is uniquely yours. Different does not mean greater or lesser. It simply means human.

As a mom, I am incredibly blessed. I have three amazing sons and two incredible daughters-in-law. I never, ever take them for granted. At the same time, I will always wonder and wish what life might have been like had she survived. Both of those truths can exist together. Twenty-Eight Years Later, My Body Still Remembers

I can also say this with honesty: had our daughter lived, NKH Crusaders would not exist. We had planned for three children. I would not have my incredible third son, who changed my life in ways I never expected and helped me grow, find my voice, and discover my passion for advocacy. Thomas completed our family, and my heart. I cannot imagine a world today without Thomas or NKH Crusaders.

My hope is that NKH Crusaders will continue long after I am gone. Not only as a legacy of compassion, love, and community, but as a living testament to what happens when families refuse to give up. I hope it becomes a place of celebration one day; a celebration of a treatment, or even a cure, for a disease that just 20 years ago science said would never happen.

NKH Crusaders is built on a mission fueled by love, determination, and relentless hope; and yes, by loss. We are carried forward by parents, families, clinicians, and researchers, including families who have lost their precious child to this disease and still choose to fight just as hard for others, even while grieving. Together, we stand in the space where heartbreak and purpose meet, refusing to let loss be the end of the story.  

And if this hits at your heart today, tomorrow, or years from now, please remember this: you do not have to carry that pain alone. I am here. NKH Crusaders is here. Reach out. Lean on this community. We were never meant to walk through loss, or hope, by ourselves.

💙 Kristin Archibald, Mom, Founder, and Executive Director of NKH Crusaders

P.S. If you are seeking resources to help you navigate loss, medical trauma, grief, or just need connection, please click here and join Rare Connections Caregiver Support Group