by Jessica Rownd
About the author:
Jessica Rownd has two boys: one with Duchenne Muscular Dystrophy and one without. She has become a great advocate in our community, blogging her life experiences and collaborating with many of our non-profits. To read more of Jessica’s blog about her family’s journey with Duchenne, visit Laughing Through the Tears.
Over the past year I have focused this blog so much on my life with Wyatt but today I want to focus on Wynston’s life with Wyatt. I know Wynston is special but he definitely struggles with feeling left out or not feeling like he fits in all the time.
I wanted to know more about how he felt so I asked him if I could interview him and dig a little deeper into how he feels about his brother and Duchenne. It took everything in me not to cry while I typed word for word his answers. It is truthful and raw.
I hope it gives you a little perspective into what being a special needs sibling is.
When have you seen Wyatt excluded from activities? Why do you think he is being excluded?
I see him excluded when I have friends sleep over and he doesn’t, but we try to include him when we can.
I would think it is because he is different and a lot of people don’t like different. It makes me mad because I like different.
When have you seen Wyatt included and how do you help him feel included?
My friends and I play with Wyatt a lot. We help him feel included by talking to him while he is in his playroom. It’s harder now since he doesn’t come outside because he gets too tired and it’s harder for him to walk.
What are some of Wyatt’s frustrations? What makes him mad?
He gets mad at me when I don’t want to do something. Like one time he asked me to throw the ball and I said “no” because I was playing with my friends. He then got mad and told our mom.
Mom told me that he is sad because his legs are giving out and he wants me to play while he can still walk. That made me feel like I was a bad brother, and I wish he could express that to me because if I knew how he felt I would have stopped what I was doing and threw the ball with him for the short time he can do it before getting tired.
Talk to me about your relationship with Wyatt.
I feel like we have a love hate relationship. And a relationship that my parents don’t know about. We yell at each other and stay away from each other when they are not home and then quickly we make it up to each other and play together. Usually during that 5 minutes I am crying because I don’t like making him feel sad.
Do you feel like you have a good relationship with him? Can you talk about meaningful things?
I feel like I have a great relationship with him. We both suck at being verbal about how we feel. I try to get him to talk to me about what is wrong but he doesn’t say much because I think sometimes he doesn’t trust me.
But we do have a good relationship because I know we both love each other very much. I wouldn’t change anything about him except if I could get rid of Duchenne for him.
How do you feel about Duchenne?
I feel like Duchenne is a stupid thing. I feel like if I ever have free time when I grow up I want to research more about it and try to help find a cure. But right now I am only 12 and I feel like it is stupid.
I am happy to have him as my brother I just wish he didn’t have it because I want him to be able to play with me and to live the life he wants and become a pro baseball player because I know he could do it but Duchenne is just holding him back.
What good things have happened because of DMD?
One good thing that happened to me and my family is we got a dog and we get to travel a lot. I got to go New York and meet a pro golfer and I got to hit a golf balls with him.
We got to go to a mansion in Wyoming and went to Hawaii for his Make A Wish trip. I loved seeing Pearl Harbor.
Another thing is my brother gets to go zoom zoom in a wheelchair and he has a big 3 wheeler that he would ride on and we could ride it together.
What would you change about our life if you could?
I wouldn’t change anything, I wish we could keep everything we have and keep doing the things we do but I wish that Wyatt would not have DMD.
What are your wishes for Wyatt?
I wish for him a good life.
What does a good life mean?
He can live out his dreams.
What are your fears about Wyatt and DMD?
I am scared he won’t have a good life and is unhappy.
Do you think that DMD makes you a different type of person?
I am different because I have a brother with a disability. It makes me think about him more and I guess I may think of others more. I always worry about him.
Changed by His Brother’s Diagnosis
I want to add that I think Wynston is definitely changed by his brother’s diagnosis. I am told by many of Wynston’s teachers that he is always looking out for everyone. He makes sure everyone feels included. I think that is because he sees what Wyatt goes through and how he wishes it would be different for him.