Reflection: 27 Years with a Brother with C-ACC

by Samantha Jones

It wasn’t until my coaches put one of the casts I was a part of aside and gave us an assignment. We were to write down an anonymous secret that would be assigned to another castmate to be performed. A few days later, we received our scripts and I watched my friend Priyanka end her monologue with my words, “I just wish I had a brother who was normal…and for that, I hate myself.”

I had never admitted that to anyone before, and to be honest, I haven’t said it again until this moment. Who wants to admit that? The fact of the matter is, having a sibling with special needs (various abilities, differing abilities, disabled, other abled, or however you feel most comfortable labeling it), is a treasure, and a miracle. We are the ones that are able to get them to eat when no one else can. We can get them to calm down, explain why things work, don’t work, or happen the way they do in a way they can understand. We are their translators. We know their likes, their triggers, and how to make them laugh, or calm them. We know all the intellect, and betterment they bring to the universe. We know that they have beaten odds just being alive, and their light is an extended bonus that a lot of times we don’t deserve. 

At the same time we know how many nights no sleep is had because of night terrors or insomnia or OCD and bathroom obsessions. We know doctors that have given up saying serious medical issues are “behavioral” or have tossed medication at our siblings in order to zombify them. We have seen our siblings be triggered by the color yellow or red and hit a stranger or melt down in public places. We have lost friends and family because they think our siblings are “weird” or “freak them out” or “don’t want them to touch me” so they won’t “catch” whatever it is “they have.” Hell hath no fury for someone who speaks poorly about my sibling.

We answer endless questions, or hear endless screams, or grunts, or bangs, or their favorite toy jingle for the ten millionth time in a day. We are so excited for our birthday when we remember that presents will also have to be bought for our sibling because they don’t understand and they will be set off if they don’t get gifts, too. We can’t wait for our game or performance for our parents to watch us when we realize that one of them stayed home because our sibling couldn’t handle coming out, so only one showed up; or if they both show up, they aren’t able to focus on us because our sibling needs their attention.

So, we work harder, longer, because maybe then we will be noticed, or we give up because what is the point, right? Regardless, we had to grow up a lot faster and rely on ourselves a lot more, but we can’t say that to our parents because they are doing everything they can to make all our lives great and to say anything would be selfish.

I am now 30 years old, reminiscing on 27 years with my brother while writing this. I don’t regret my admission or wish I made when I was 16. It was honest and the first time I spoke out about the realities of being an only sibling of someone with special needs. I feel like I would be doing you a disservice in writing this article if I wrapped it up on a “feel good” note because life doesn’t give you things wrapped up in a pretty bow. It’s hard. Being a sibling of someone with a disability who will always be dependent on you is hard. It takes mental strength, emotional strength, spiritual strength, and sometimes (a lot of times) physical strength.

My brother cannot go into public without strict supervision because he might hit someone and we are terrified he might hurt somebody or that someone might retaliate and really hurt him. What is worse is watching him collapse in on himself afterward asking why he can’t control it, calling himself degrading names, and hiding. Years after the fact, he will still bring up specific instances wondering if they are okay. I know planning my wedding will be different from most other weddings because we will have to plan a lot of things around my brother. Yes, every bride imagines this day as her special day with her soon-to-be husband, but you would be mistaken if you didn’t think my brother would be doing a special performance to Cascada’s “Everytime We Touch” at the beginning of the reception. 

The older I have become, the more I have realized that, though eyes might be on him, his eyes are on me. Though mom and dad couldn’t fully focus on my performances at the moment, my brother watches it on repeat every single day on his DVD player. He made sure the auditorium was full by announcing to everyone that his sister was in the play. Now-a-days we have “brother/sister midnight snack time” when I come home to visit where he fills me in on all the latest family gossip as we have late night snacks. Most recently, he let slip that my fiancé was proposing to me and that he got to see the ring. 

It wasn’t until last month that I realized there are more people in my position and I wish more than anything that I surrounded myself with a larger community of people who understood my life sooner. If I could do anything different I would take advantage of other people in my shoes, and make those connections for the extra support. Friends, and yes, though we may have not met yet, we are friends, please try this out. Even more importantly, no matter how difficult things are, I promise, it is worth building and strengthening that relationship with your sibling. Who knows, maybe one day, they will be your Best-Bro-Man-of-Honor at your wedding. 

Samantha Jones works in young adult ministry, and has a specific passion for addressing mental health and individuals with special needs. She currently serves at the Recruiter and Liaison for the Advanced Pastoral Degree Program at Northern Seminary in Lisle, Illinois, as well as an Adjunct Professor in the Theology Department at Trinity Christian College. She is a graduate of Truman State University (BA, Communication Studies, Minor in Theatre), and George W. Truett Theological Seminary (MDiv). She is starting the Doctorate of Ministry in New Testament at Northern Seminary in the fall of 2021. Samantha believes that Christ calls us to live unfiltered which leads to more authentic relationships and can be learned from the special needs community. She has a perfect dog, Harper, and her life would not be as joyful without her little brother, Zach. Connect with Samantha on Instagram @samjowritesstuff or her website: www.samanthamjones.com.