Brother Died Before I Was Born

When was the first time I learned about death? I don’t remember a time when I didn’t know about it.

Hi, I’m Skye, and I was born two years after my oldest brother, Dakota, died from medulloblastoma, a brain tumor.

That’s right, my brother died before I was born. So it’s true when I say I was born understanding death. Most young people don’t have to deal with so much loss in their family. It’s had a huge impact on my life, causing pain but also giving me strength and understanding in the realm of grief and bereavement.

The truth is, my parents wanted me and my second-oldest brother, Dylan, to know and remember as much about Dakota as possible. Dylan was two when Dakota died, so his memories are minimal, but that doesn’t mean it doesn’t hurt just as much.

Sibling Loss Affects Whole Family

As for me, my brother died before I was born, but his spirit and his story has stayed with me for as long as I can remember.
Sibling loss is a real thing. You hear about parents and their losses and coping skills, and sometimes you hear of siblings who speak out about the loss of their loved one. It is very rare you hear from those who never even met their sibling, but boy did that loss have a huge impact on my life.

Growing up, we would make things for children at the hospital — funny masks with googly eyes, for example — with hopes it would bring a smile to someone’s face.

Dakota loved things like that. Anything weird or ugly was right up his aisle. We had a Relay for Life team every summer, lit a luminary, and walked for my brother. As years passed, we had luminaries for other loved ones, like my grandparents and my aunt. It seemed like death was ever-present in my life, and it was never strange to me until I was older and realized just how many people have never had to deal with so much loss.

Sibling Created Family Memories

As I got older, I would travel with Mom as she went to parent panels or conferences with doctors and nurses to talk about death and dying and the importance of palliative care. I remember playing an old home video, Batland, where Dakota talked about this magical place he’d created that was over the train tracks and past grandma’s house.

I’d seen this video so many times that I could almost repeat it word for word. So, as it played in this conference room, I (an 8- or 9-year-old) was mouthing every word. When the meeting was over, so many people told me how much they loved that I remembered the words.

I remember thinking how odd it was that people were impressed with that. Why wouldn’t I know all of the words to my dead brother’s video? He’s my brother, I love him, of course I watched it over and over and knew everything about the story.

Early Grief Made Me Stronger

Now that I’m older, I understand that I was the odd one. Most people don’t have the connection or understanding with death that I did at such a young age.

At another conference a few years later, I was probably 14 or 15, we were sharing our stories at a new children’s hospital. Doctors-to-be wanted to learn to deal with terminal patients and their families.

I was the only sibling there. I felt so alone yet so empowered at the same time. My experience was valued, and I was so honored to do so. I was keeping Dakota’s spirit alive by helping others know how to care for patients like him and families like ours.

We were also very involved with the Ronald McDonald House of Chapel Hill. Thanks to Mom being on so many parent panels, she met Nancy who worked at RMH. We helped them multiple years with their Butterfly Garden Remembrance Day.

Learned from Parents

Years earlier, Mom and Dad had started a business. They engraved wind chimes with names or sayings about their loved ones. Mom also made bears out of clothes that people would send us so that they could have something soft to squeeze when they missed the one they’d lost.

We had windchimes all over our house, and I had a “Kota Bear” made from Dakota’s clothes, my Pop’s clothes, and years later, my Grandma’s clothes. So, when we would go to the Remembrance Day at RMH, we always brought windchimes for them to remember their child. Mom would read a poem, Nancy would sing, and I would hand out the chimes.

The story behind the chimes began when Dakota died. Someone at his funeral shared an old saying that stated, “When a great soul dies, the winds will blow. The greater the soul, the greater the winds.”

That day the winds were high and wild, and they knew Dakota was sending them so much love. And then came the chimes. We still have them all around my parents’ house, and I think of Dakota every time I hear one.

The connection I made with people at RMH as a younger girl led to an internship when I was a senior in college. I had always wanted to work there, with those people and those families, and I’d finally made it. I was organizing a remembrance day for that Spring when COVID hit.

Talking about Brother Brings Joy

My plans never went through. I still hope it can happen.

Dakota’s death is something that I could talk about forever. It’s not uncomfortable, it’s joyous. It’s reviving and full of life and something that I do to keep his spirit alive. I have so many stories; of Dakota and how his death shaped me, of other losses I’ve experienced and how they’ve affected me, of the life I hope to live so that others never feel like they’re alone in their grief.

Thanks for being here and reading about so many things that make me who I am today.

Read Skye Page’s blog, Mentally Sailing