My brother, Kevin, has a rare disorder called Tetrasomy 18 P. His 18th chromosome is a little different than most people’s, and because of that, he’s a little special. Kevin has changed my life in more ways than I could have ever thought possible; I’m not exactly sure who I would be without him.
When Kevin was diagnosed 23 years ago, it was an extremely rare condition and my parents had very few people to talk to with the same situation. But over time, more kids were diagnosed and they created a conference to have once a year to celebrate, to research and to discuss this unique chromosome abnormality.
My first conference was about six years ago, and on the first night, when I saw all the affected kids and their families, I started to cry. I cried because I was shocked at how many kids I met that looked just like Kevin, that spoke like him, that flapped their arms like him. I cried because for once in my life, I felt normal having Kevin around. Every single family knew what it was like to have a special needs child in their life.
That week, I bonded with other siblings, and we laughed over the embarrassing things our siblings had done, the heartfelt moments we shared with them, and how it changed our lives for the better. I especially bonded with a girl named Bryanna. We had the deepest conversations about how having a special needs sibling has made us think differently, and how it has strengthened our bond with God. I bonded with the self-advocates, and was amazed at the diverse spectrum. Some could have conversations with me about boys at school they had a crush on, and some just smiled and nodded at me before bouncing around with loads of energy.
This past month, I attended my third conference. Every year, I am never really ready for how much it is going to impact me until I experience it. My mom and I often looked at each other with tears in our eyes, not saying a word because we knew exactly what the other was thinking.
One of my favorite moments was meeting a little girl named Grace. Grace had a little different of a disorder than Kevin did, but she was silly and so sweet. Grace couldn’t speak, so she used sign language and she clung to me throughout the entire conference. On the last night, there is always a dance, and I was still in a lot of pain from my leg injury, but I got up and danced a few songs with Grace because I knew how happy it would make her. When she hugged me goodbye, she signed to me, “You’re my friend.” My throbbing leg was so worth it, just to have that moment with her.
I have met incredible people throughout my experiences at the conferences. I met a single mom who takes care of her affected son while putting herself through college. I met a self-advocate who got married and had her own child. I met a family who got a paralyzed dog because their affected daughter said, “She’s special, just like me.”
This past week, the Chromosome 18 family suffered a great loss when my good friend, Bryanna’s sister, Heather, passed away suddenly. While Bryanna and I had gotten closer over the conferences, I had also gotten closer to her incredibly endearing family, including Heather. This past conference, Heather and Bryanna were up on stage answering a few questions. They asked Bryanna if there were a pill to change Heather to make her normal, would she give it to her? Bryanna said that she wouldn’t give the pill to Heather, but she would give her the opportunity to take it if she wanted to. Heather responded that she wouldn’t want to take the pill because she loved herself the way she was. Everyone was in tears by the end of the speech. Today, I am reminded of Heather’s smile, of her sweet personality and the way she moved everyone she met.
The Chromosome 18 Conferences have given me a sense of pride to be apart of a family that is a little different than most people’s, and who faces quite a lot of challenges along the way. I will never stop thanking God for giving me Kevin and all the people I have met because of him.
