SMA and Sibling Relationships: My Brother’s Perspective
Every sibling relationship is unique, but what happens when SMA gets thrown into the equation? I could tell you about its effect on my relationship with my brother, Lucas, from my own perspective, but today I want you to hear from someone else.
In honor of National Brother’s Day on May 24, I asked Lucas to share some of his thoughts on what it’s like to have a sister with SMA. Following are excerpts from our text conversation:
HB: My disability has been prevalent throughout your entire life. Growing up, did you notice the differences between our lives and those of other kids? What seemed different or the same?
LR: Yeah, I definitely noticed the difference between us and other siblings. You and I just kinda interacted differently with each other — we had more patience with each other — even though our relationships with our friends were the same. We all played the same games and didn’t treat anyone like they were different from ourselves.
You know quite a bit about my care, and helping me with things like repositioning my shoulders, placing items within my reach, or getting a snack for me seems to be second nature to you. Are there certain things you do or don’t like helping me with? Why?
I don’t think there are any care things that I really enjoy doing. It’s just something that needs to be done, and it’s not a bother for me to do it.
I honestly don’t really remember most of the hospital or surgery visits. I only really remember the regular doctors’ appointments and being annoyed at how hard it was to do homework during them.
SMA can create some unique experiences, interactions, and friendships. Do you have any favorite SMA-related memories?
I think some of the more fond SMA memories are from the [Cure SMA] conferences, just ‘cause I liked meeting new people and seeing you with all your friends.
In what ways has SMA affected your life? How do you think it affects our relationship?
I don’t really know if it’s brought us closer than other siblings are, but we certainly act differently around each other than most siblings. Primarily being that we don’t ever hold grudges, and when it comes down to it, any argument can be pushed aside at any second.
SMA has taught us both a lot of things, and I know you have plenty of wisdom to share. What’s something you want other SMA siblings to know?
People with disabilities aren’t different than anyone else. Some people see disabled individuals with pity usually because all they see is what those people can’t do. But just because you can’t walk or throw a ball as far as I can doesn’t mean that you are any different as a person. That’s the most important thing to remember as a sibling. It doesn’t change our relationship, just maybe it changes things we can or cannot do together.
I can’t help but notice a common theme in Lucas’ answers to my questions: Disabilities and the people who live with them are perfectly normal. I know a lot of aspects of life with SMA may seem unusual to those who don’t live it, but I think it can do the world a great deal of good to implement more of my brother’s perspectives on the matter.
Part of the reason why SMA seems so normal to Lucas is likely because he has grown up with its presence in his life. It’s all he knows. I also think it’s because he has such a kind heart, open mind, and compassionate personality. Regardless of the cause, let’s all try taking a page from his book.
If you’re a sibling to someone with SMA or another disability, what is something you want others to know? Please share in the comments below!
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.