Growing Up as a Sib
By Julia Lipsit, International Chair of the Cerebral Palsy Group
Those of us who have a disabled twin or older sibling know nothing other than life as a sib. We are accustomed to the doctor’s appointments, meetings, stress, and forced independence that comes from this lifestyle. In a way we are lucky because we do not know anything different, so we do not miss that “normal” life that some sibs had before things changed. But at the same time, a lot of us long to have a taste of that freedom even for a day.
I am sharing my thoughts on growing up as a sib in the hopes that some of you will be able to relate to what I am saying and know that you are not alone. I hope you know that it is okay to feel the way that you do, however it may be, and that your emotions are valid. You do not need to feel guilty or be ashamed of your feelings. You are not alone. Hang in there, Stay Strong, and Always Keep Fighting!
My sister is 10.5 years older than me, so I have never really known a life without her or her cerebral palsy. We are lucky, her condition is only mild so she is able to live independently and has a few times throughout the years. She is a mother now, her son is 13 months old, and she is a great mom. She may not be able to do everything and when she is tired, she can’t do much, but she is still a great mom nonetheless.
Growing up, I knew that my sister was different; that she had a disability called CP (Cerebral Palsy) and that it was the reason she talked slower and walked differently, but I still thought our lives were pretty normal. Over the course of the last year or so, I have realized that a lot of the things that I thought were normal are not, but it is mostly the small things. I knew that being unable to play catch or draw with her were not really “normal” but they were normal to me and she was in high school anyway so why would she want to play with me? The other items were when I realized that when a person spills something they have to clean it up themselves, but my sister doesn’t. If she spills something my mom gets frustrated, sometimes yells at my sister, and then cleans it up herself. I thought moms just did that, but nope, it’s because my sister would make a bigger mess, according to my mom. I realized that having to have my sister hold my arm whenever she walks anywhere outside is not “typical sibling behaviour”. It is how when we talk, I have to watch her breathing and body language to ensure I don’t cut her off, because it takes a while for the words to go from her brain to her mouth. It is in how I have to pour her drinks, move her plates, do her hair, sometimes feed her the last bits of food or cut it for her. They are all small things, and I am grateful that she is as capable as she is, but it is frustrating to discover how “abnormal” your childhood was when you thought it was perfectly ordinary.
Growing up with a special needs sibling, no matter their age, also means, for a lot of us, feeling guilty for things you shouldn’t feel guilty for. It means that every time I played sports, or went to the mall, or did anything my sister couldn’t do, I felt bad. I felt like I was rubbing my “able-ness” in her face. When I go for walks, or hikes, or dance, or ride a bike, or slide across the floor, or sing, or speak quickly around her, I feel like I’m rubbing it in. I know that I shouldn’t because it is not my fault but I do, and I can’t help it. I feel guilty when she yells at me and I cry. I hate that I let her get to me because I know that she doesn’t mean to yell or be rude. I hate that I get frustrated with her. I hate that it gets to me when she is mad, and then she feels bad for getting mad. I feel guilty when she spills something on my homework or when I am in the middle of something and I have to put her hair up and I sigh. I don’t really mind, and I know it’s not her fault but it can be frustrating and I hate that. The thing is that those feelings are NORMAL for sibs, it is not unusual or wrong. It is not invalid and it is okay. I get frustrated for feeling frustrated and I know that some of you probably do, too. I’m sharing this to let you know that it is okay, that you are not alone, and that you don’t need to feel guilty about those things. Alright? Okay.
I hope that this article has helped some of you. You are all awesome, strong, and super courageous as a sib. It can be difficult but keep your chin up, smile, and remember to “Just Keep Swimming!”.
Love Always,
Julia
“You are a human being with one life, it is up to you to make it the best life you can.”- Dan Howell aka. danisnotonfire
Siblings with a Mission is an international organization established to serve and support siblings of individuals with special needs. All images are found on Google images and are solely used for education purposes. The stories and advice provided by Siblings with a Mission are not to be replaced by professional advice and counseling but to be considered as an additional source of support.
By Julia Lipsit, International Chair of the Cerebral Palsy Group
Those of us who have a disabled twin or older sibling know nothing other than life as a sib. We are accustomed to the doctor’s appointments, meetings, stress, and forced independence that comes from this lifestyle. In a way we are lucky because we do not know anything different, so we do not miss that “normal” life that some sibs had before things changed. But at the same time, a lot of us long to have a taste of that freedom even for a day.
I am sharing my thoughts on growing up as a sib in the hopes that some of you will be able to relate to what I am saying and know that you are not alone. I hope you know that it is okay to feel the way that you do, however it may be, and that your emotions are valid. You do not need to feel guilty or be ashamed of your feelings. You are not alone. Hang in there, Stay Strong, and Always Keep Fighting!
My sister is 10.5 years older than me, so I have never really known a life without her or her cerebral palsy. We are lucky, her condition is only mild so she is able to live independently and has a few times throughout the years. She is a mother now, her son is 13 months old, and she is a great mom. She may not be able to do everything and when she is tired, she can’t do much, but she is still a great mom nonetheless.
Growing up, I knew that my sister was different; that she had a disability called CP (Cerebral Palsy) and that it was the reason she talked slower and walked differently, but I still thought our lives were pretty normal. Over the course of the last year or so, I have realized that a lot of the things that I thought were normal are not, but it is mostly the small things. I knew that being unable to play catch or draw with her were not really “normal” but they were normal to me and she was in high school anyway so why would she want to play with me? The other items were when I realized that when a person spills something they have to clean it up themselves, but my sister doesn’t. If she spills something my mom gets frustrated, sometimes yells at my sister, and then cleans it up herself. I thought moms just did that, but nope, it’s because my sister would make a bigger mess, according to my mom. I realized that having to have my sister hold my arm whenever she walks anywhere outside is not “typical sibling behaviour”. It is how when we talk, I have to watch her breathing and body language to ensure I don’t cut her off, because it takes a while for the words to go from her brain to her mouth. It is in how I have to pour her drinks, move her plates, do her hair, sometimes feed her the last bits of food or cut it for her. They are all small things, and I am grateful that she is as capable as she is, but it is frustrating to discover how “abnormal” your childhood was when you thought it was perfectly ordinary.
Growing up with a special needs sibling, no matter their age, also means, for a lot of us, feeling guilty for things you shouldn’t feel guilty for. It means that every time I played sports, or went to the mall, or did anything my sister couldn’t do, I felt bad. I felt like I was rubbing my “able-ness” in her face. When I go for walks, or hikes, or dance, or ride a bike, or slide across the floor, or sing, or speak quickly around her, I feel like I’m rubbing it in. I know that I shouldn’t because it is not my fault but I do, and I can’t help it. I feel guilty when she yells at me and I cry. I hate that I let her get to me because I know that she doesn’t mean to yell or be rude. I hate that I get frustrated with her. I hate that it gets to me when she is mad, and then she feels bad for getting mad. I feel guilty when she spills something on my homework or when I am in the middle of something and I have to put her hair up and I sigh. I don’t really mind, and I know it’s not her fault but it can be frustrating and I hate that. The thing is that those feelings are NORMAL for sibs, it is not unusual or wrong. It is not invalid and it is okay. I get frustrated for feeling frustrated and I know that some of you probably do, too. I’m sharing this to let you know that it is okay, that you are not alone, and that you don’t need to feel guilty about those things. Alright? Okay.
I hope that this article has helped some of you. You are all awesome, strong, and super courageous as a sib. It can be difficult but keep your chin up, smile, and remember to “Just Keep Swimming!”.
Love Always,
Julia
“You are a human being with one life, it is up to you to make it the best life you can.”- Dan Howell aka. danisnotonfire
Siblings with a Mission is an international organization established to serve and support siblings of individuals with special needs. All images are found on Google images and are solely used for education purposes. The stories and advice provided by Siblings with a Mission are not to be replaced by professional advice and counseling but to be considered as an additional source of support.
