When I was 4 years old, my brother Patrick was born with a rare genetic condition. He had severe medical needs and required around the clock care. I don’t remember much of what life was like before Patrick was born. Everything in my family became centered around Patrick between the doctor appointments, medications, therapies, and hospital stays. My life revolved around Patrick, too, as I grew up – staying home to help take care of him rather than go out with friends and running the household when my mom had to stay with him in the hospital.
But then, just months before I graduated from high school, Patrick died. I felt like my world had shattered beneath my feet. I felt like a part of me had died with him. Memories of my senior year were just reminders of my loss – staying out late on prom night because I didn’t have to get home to Patrick and walking across the stage at graduation without seeing him in his wheelchair in the audience.
Moving to college was another challenge. Queue the dreaded “How many siblings do you have?” question in every freshman icebreaker activity. My mind would race, and my heart would pound when it came my turn to answer. “Would I be lying if I said I only had one brother? But what if I said 2 and then people asked me more questions about them? Was I supposed to tell strangers about my brother who died? What was the proper bereaved sibling etiquette – or was there even such a thing?”
Losing Patrick at such a pivotal point in my life left me scrambling to find my way without him. I started college as a nursing major, before I switched to a pre-med track. I thought I could hold on to part of Patrick by pursuing a career in medicine. And I thought that if I didn’t succeed, I was somehow failing Patrick.
It’s been almost 8 years since Patrick died. Even though I’m still finding my way, I’ve come to realize that I will always be Patrick’s sister. But I am also me. And it is possible to be both. It doesn’t matter what my career is or how I answer the sibling question. There are still times when things are undoubtedly hard, but I have found an incredible community of other brothers and sisters who have lost special needs siblings who are a great comfort and support. Being able to share the memories I have of Patrick making fire engine noises or laughing at fireworks on the 4th of July with them reminds me that I am not alone in this journey of grief.
Mikaela Fox grew up in St. Louis, MO and currently resides in Houston, TX. She is a MSW student at Simmons University. In her free time, Fox spends time volunteering with children with special needs or at a bereavement center in her community. She hopes to become more active in the sibling support community and spread awareness of the need for such support.
Written by Mikaela Fox | Missouri Sibling