“I spent the evening crying my eyes out while wiping pee off the floor and crap off my 8-year-old brother’s butt while he laughed in my face. No one would understand.” I wrote this in a journal of mine back in September 2021. Life as Kaydan’s sister has often felt this way. I often feel like no one else gets it. It feels like no one gets what it is like to have a brother that is different from other kids his age. What it is like to have a brother that does not talk like other kids do or even use the bathroom like other kids can. What it is like to have a brother whose brain and body simply does not function like it is supposed to because of one extra chromosome. However, my hope is that you get a glimpse of what it is like to be a sister to a special needs child.
When Kaydan was born, I was almost 11-years-old. I had never heard of Down syndrome and had no idea what it meant for my brother. Back then I did not know how much one extra chromosome was going to change my family. The fact that he had this thing called Down syndrome really had no effect on me for the first few years of his life. But as Kaydan and I both grew up, I began to notice how different he was. His face looked different. He was smaller than other kids his age. He could not talk like his peers could. His behavior was disruptive, aggressive, destructive, and unexpected. He was still in pull-ups at ages five, six, seven, eight, and now nine. I started to see that he was never going to be able to do all of the things that “normal” kids his age could do. He was always going to be behind.
I began to see how much Kaydan and his one extra chromosome also affected me and my family. I became jealous of my friends who had “normal” families and “normal” little brothers. My family could not even have normal dinners together anymore. We could not all go to church as a family anymore, and still do not. Taking Kaydan to church usually ends in some kind of embarrassing incident. My parents could not go to my basketball and soccer games together during high school. Their world became Kaydan, having eyes on him 24/7 making sure that he was not destroying something, taking him to appointments and therapy, and attending IEP meetings with his teachers. Kaydan consumed their time and attention causing me to feel like I was put on a back burner, as well as my other siblings I am sure. But it was not their fault. I blamed Kaydan. I blamed Down syndrome. I blamed God because He made Kaydan have Down syndrome. I was angry at God. I often asked God why he chose me to be Kaydan’s sister. Why He chose Kaydan to have Down syndrome. Why He did this to my family. But in the past nine years of Kaydan’s life, God has so graciously taught me that He did not do this to my family. God did this for my family and for me.
Being Kaydan’s big sister is hard. It is messy, it is loud, it is embarrassing at times, and sometimes it is literally crappy. I have cried many times. I have yelled. I have been angry and discouraged. But all of the messiness and tears are incomparable to the joy that I have experienced because of Kaydan. The laughter, his hugs, his smile that makes me smile, our dance parties together. The way he looks up at me and asks “Rissa, you okay?” at exactly the right time because he somehow knows that I am not. The times where he comes to sing with me at the piano. The moments when he has been the only one at times to see my tears and wipe them away for me. I have experienced God in a way that I never would have experienced without Kaydan. He has taught me how to be patient and understanding. He has taught me how to love and what it means to serve. Kaydan is the biggest challenge and an even bigger blessing and I cannot imagine a world where I am not Kaydan’s big sister.