Loving a Disabled Sibling

What is Cerebral Palsy?

CP is a developmental disability that is not contagious or progressive. It causes physical and mental impairment. CP varies in degrees from mild where you would hardly notice to extremely debilitating.

The Beginning

I remember looking down at this little scrunched up thing that they were calling my sister.


Not fully understanding why there were tubes coming out of her or why she was in an incubator, I just thought that she looked like a porcupine.

I had no idea the challenges that were about to unfold. I didn’t know about the frustration, pain, and anger that this tiny girl would soon cause. No one told me that part. All they told me were these strange words that felt foreign in my mouth. Annabell, they told me, had cerebral palsy.

Disclaimer: These pictures are not of me or my sister. And in the interest of trying to preserve a little bit of anonymity, I've changed her name for the purposes of this hub.

The Tough Part

These words would soon become a normal part of my vocabulary:

“Yeah, she walks that way because she has cerebral palsy,” I would offer as an excuse for her awkward gait.

“Sorry she won’t stop yelling. She’s my sister. She has cerebral palsy.”

I have had to explain countless times to countless people who will never really understand what it means. They will never know what it is like to watch a little sister fall down the stairs because she couldn’t lift her foot high enough. They will never experience having to listen to her scream at the top of her lungs when lying in bed recovering from reconstructive surgery or screech in frustration after a particularly rough session of physical therapy.

Other People

Most people who meet Annabell don’t see that aspect of her. They see a smiling little girl who runs to me when I come home, yelling my name happily. They see her fall as she runs to me, but then she keeps grinning as she continues to crawl in my direction.

Consequently, my friends see an interminably happy little girl with an adorable, angelic face who loves me unconditionally.

To someone on the outside, it's got to be hard to understand the difficulties of having a sister with a congenital disability like cerebral palsy.

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More Hard Parts

But her glowing persona does not absolve the strain that her disability has put on our family, and -- honestly? -- it is sometimes hard to see the positive side of her.

Most families with eight-year-old kids can say, “Okay, make sure you go to the bathroom, and go get in the car.” With Annabell, it takes serious physical effort to help her walk down the steps, use the bathroom, and climb laboriously into the car.

With each small task taking so much extra effort for her and for us, I have truly come to appreciate how blessed I am. When I have an idea, I express it without stuttering. When I want to go to my room, I run up the stairs without holding onto any special railings. When I do homework, I do it without my parents helping me think through the questions or write down the answers. It is wearisome to constantly help her complete every small task.

(Photo by Marinka van Holten)
(Photo by Marinka van Holten)

Always a Silver Lining Making It Worth It

Despite the hardship that Annabell's condition has brought to our family, it has ultimately made us stronger. We have united to face the challenge of having a handicapped family member, and I know we are better for it. I appreciate the importance of teamwork to get something done because every day my family has to work as a team.

Admittedly, I sometimes get extremely annoyed or frustrated with her because she can be a little bit of a brat.

But minutes later when we are wrestling on the floor of our living room or laughing because a piece of food got stuck to her cheek, I know that there are things more important than being able to walk perfectly or easily hold a pencil. It is more important that we love unconditionally and that we are able to put others’ needs in front of ours own.

I can’t help but think, “I love this kid so much,” and that love overrides all the frustration. Annabell shows me every day how to be happy with what we are given, because it is all we have. She has to put so much effort into everything she does, but she still always has a smile for me. Her smile reminds me of her simple joy for life and of all the lessons she has taught me.

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Comments 21 comments

C.S.Alexis profile image

C.S.Alexis 8 years ago from NW Indiana

The Annabell's are here to teach us exactly what you have expressed here on your hub...and then some.Bless each and every Annabell on this earth.

helenathegreat profile image

helenathegreat 8 years ago from Manhattan Author

Thank you so much for reading, C.S. This is a very personal story, and I wasn't sure if it was time to share it on HubPages yet. I'm glad it went over well with you, at least!

Whitney05 profile image

Whitney05 8 years ago from Georgia

Touching story Helena. My little brother is handicapped. The doctor's have never actually diagnosed him, which is hard for everyone. He has the mental capability of a 2 year old basically, whereas he's really 16, 17 later this year. He can't walk either, and has seizures. But, dispite all that, he's a relatively happy kid.

helenathegreat profile image

helenathegreat 8 years ago from Manhattan Author

Thanks, Whitney. It must be REALLY hard to not at least have a word to put to it. While I don't think my sister defines herself by her disease title (I mean, she's only 11 anyway), it's still pretty helpful as a quick way of explaining things and networking. I hope this hub struck a chord with you even though our situations are a bit different. :)

Kenny Wordsmith profile image

Kenny Wordsmith 8 years ago from Chennai

Thanks for sharing, Helena. Lots of love to Annabel from me.

helenathegreat profile image

helenathegreat 8 years ago from Manhattan Author

We just put 'er to bed, Kenny, but in the morning she'll get a big hug from you!

Isabella Snow profile image

Isabella Snow 8 years ago

Great hub. I worked at a State School for many years. While I only worked in the Clinic, as opposed to in one of the homes, I worked with every type of physical and mental handicap one could imagine, both with men and women alike. If you think wiping food away is hard.. try doing a blood draw or taking a blood pressure on someone who really does not want to be touched, lol. Sadly, those members of that community rarely were visited by family, because it was easier to forget them. I'm always happy to see a family who did not send a relative away, good for you.

helenathegreat profile image

helenathegreat 8 years ago from Manhattan Author

We're lucky, Isabella, that we don't regularly have to worry about too much medical stuff with my sister (blood draw, etc). I can't imagine tucking her away and forgetting about her! Thanks for sharing your experience!

Cailin Gallagher profile image

Cailin Gallagher 8 years ago from New England

Very honest outlook from a sister's point of view. Living with a sibling with a severe disability truly affects the entire family. Expressing your feelings through your writing must be therapeutic for you. I'd love to hear more.

helenathegreat profile image

helenathegreat 8 years ago from Manhattan Author

Thanks for the comment, Caitlin. I do enjoy writing about this, if only to give others a glimpse into a different life. Maybe one day I'll write some more hubs about cerebral palsy and how to deal with (and even embrace) disabilities.

Christie 8 years ago

I cried when I read this story- I wish I had a sister like you.

I have Cerebral Palsy. I'm 21, and the last couple of years have been the hardest for me. It's hard growing up with any kind of difference- physical, mental, emotionally- but I think what hurts the most is what we think of ourselves.

Myself, I hate it. I hate living like this, because it's so hard, particularly having to accept that there are things I will never get to have- to do.

But I'm glad people like you exist, Helen. It makes the world a bit of a better place.

mariam 8 years ago

I don't know you but I think you are a very beautiful person. It is hard having a sibling with a disability but just imagine how much harder it is for them to go through what they are going through. I'm not saying that I wouldn't want my sister to wake up one day and be magically cured but I'm saying that her life touches me like nothing else I am a completely different and better person because of her, I would do anything for my sister and I dont think I would be the same person without her. What gets to me the most is that people cant look at her and judge her for who she is they will always judge her for her disability and that gets to me everytime. I would die for her. I have a soft spot for anyone with a disability, and I want you to know that you are a beautiful person.

Delicious Monster 7 years ago

cool. keep the good vibes coming.

Katie 7 years ago

I loved reading your story. Very personal, very touching. My little brother and my older cousin has Cerebral Palsy, so I can relate to just about everything you've said in here. My brother touches my life in a way that no one really understands and I love him more than anything. I can totally relate when you say the part about how no one really sees the rougher side, they just see the good, cute events. I remember my brother would lay in bed and scream for long periods of time because he wanted to be held and everyone would be frustrated because it'd be so late at night. Anyways, I started rambling XD. Thank you for sharing your story I enjoyed reading it. =)

Zollstock profile image

Zollstock 7 years ago from Germany originally, now loving the Pacific NW

I am so glad I stumbled upon this hub - the world needs more stories like these, heartfelt, real, eye-opening. I work with families who have children with disabilities, and the non-disabled siblings often get the short end of the stick and have to grow up rather prematurely. Then again, with the right support, they make the most amazing advocates for their brothers and sisters, as your hub demonstrates so well. As I am sure you have found out by now, disability really is a gigantic spectrum, and the labels that we, as a society, slap on people with disabilities make a difference for inclusion, acceptance, and quality of life. Thank you so much.

helenathegreat profile image

helenathegreat 7 years ago from Manhattan Author

Thanks for the comment, Zollstock. It's been hard for my parents to find the right balance of giving her the attention she needs and making sure that my brother and I don't get lost in the shuffle, but as long as they are aware of it, that's enough for us.

bigpapa81 6 years ago


Thanks for the insightful words. I stumbled across this because I was searching for a way to describe my sons CP to an older (soon to be) sibling. My son is 5, in regular Kindergarden and gets along fairly well...very well actually (I'm so proud of him). As you probably know; the title "mild" is a relative term but I assume if there HAS to be a category that he falls in, it's mild. By your description, Anabell sounds like she is very similar.

My reason for writing this was to say that I admire your courage to speak out. I have to think that being candid about your feelings and have a place to vent is as helpful as any therapy. I was particularly intrigued by your feeling of watching her (what I call) successes and oppertunities...the bathroom and getting in the car.

My son wasn't diagnosed until he was 18 months old. He started walking at 10 months, but walked on his toes. No biggy, but it never changed. There were a couple of other things; drooling, gate, and tone that made me begin to wonder if there wasn't an issue. Nevertheless at 18mo we went to visit a neurologist and w/in minutes (seconds probably) the Dr. knew.

He doesn't have any other siblings (biological sibs). So I nor his mother had to worry about what your parents have had to consider.

As a father I did and still struggle with the fact of what "is". What most probably don't understand is that I realize what CP is and that isn't what I struggle with the most. The biggest thing is that I will do and say the right things when they are needed. Even in pre-school he showed signs of recognizing he was a bit different. That blew me away! I suppose I had this preconcieved notion that he wouldn't recognize it until much later. I don't know what or if I should talk to him about it? I encourage him to do his best ALL the time in everything he does. I tell him how proud I am of him, that I love him unconditionally and I will always be there for him. Yet I wonder if I haven't failed somewhere if he already "gets" that he is a bit different.

My buddy told me, when I talked to him about this years ago when my son was 18mo, "hey if it isn't CP, he'll be too tall, too short, too fat, too skinny...it'll always be something! The only thing you can do is teach him how to deal with it effectively", THIS terrifies me!

Anyhow, I enjoyed your post and I appreciate having a place to talk...especially to folks who understand.

helenathegreat profile image

helenathegreat 6 years ago from Manhattan Author

Thank you so much for this comment, bigpapa81. My sister is 5 years older now than when I first wrote this piece, and 13 years old is much different than 8!! I want to write another one now that she has developed a real personality other than just Little Kid Cuteness.

You can't stop your son from noticing that he is different because children constantly compare themselves to each other. It's not a failure on your part; I actually remember in kindergarten realizing that not everyone could count to 100 and asking my mom why not. So your friend is right that children will notice any differences between them as they learn to distinguish themselves as individuals.

You love him unconditionally, of course, so as long as he continues to know that you are proud of him when he does his best, then that's the most important thing you can do. I know that it was also important for my parents to remain very open with my sister about what CP is, what causes it, why not everyone has it, etc.

The really important thing to remember (which is hard to understand) is that having CP is not different from normal for your son. It's not a condition. It is LIFE. He does not know the difficulties of CP as different from the regular day to day difficulties of life, which is why "feeling bad" for people with disabilities makes no sense.

He can compare himself to his classmates, but like I said they are all doing that anyway, so his difference in gait looks the same to him as his difference in hair color. As he gets older, he will be able to "label" his disabilities as CP and understand that other things (like hair color) are not due to CP, but they are all still part of his identity. And he will never know anything but his identity (just as you will never know anything apart from your own identity) so don't worry about his self-discovery.

I hope you'll write some hubs about your experience as a father! I would love to read them!

Matilda 5 years ago

Thank you so much for sharing this! I am 24 and my twin sister has cerebral palsy. I have always felt guilty for all the negative feelings I'd get towards my twin sister. As a child and teenager it was so difficult having to feel obligated to stay home for fear of my sister being jealous and she was. Once I started college I felt more freedom and started getting away from home and finally started having my own social life and job. Now, I have been laid off from my job and am waitlisted for a university and have been spending a lot of time at home. I am starting to feel some resentment toward my sister for making me feel guilty for trying to live my life. I am having a hard time especially since she was being sexually abused at a day program we enrolled her in so she could make friends and be social and get out of the house and so our mother could have time to herself and run errands. We have 3 older siblings and our brother is the last to be living at home with us and our parents. He is a college graduate and very smart and knowledgable when it comes to politics and arguable issues so he has helped with police reports and legal meetings. And HE makes me feel like I don't care and don't want to help my sister. That is not true. I just don't know much and am not good at arguing since any issue regarding my twin sister tends to make me cry and feel horrible about myself. I need too also mention that even at the age of 24 we still have bunk beds and share a room. I feel trapped and don't know what to do.

Katie Elizabeth Smith 5 years ago

Your words are very inspiring. I was wondering if I could use some of this story in a picture book I am making about siblings with cerebral palsy. Its only for a year 10 assignment and will probably never be published properly but your story is so touching I feel it would impact the audience of it as much as you have impacted me. I will of course give you full credit for your work, and will acknowledge this blog site. Please let me

know. Thanks.

ps: my email is redhead_753@hotmail.com

Huntgoddess profile image

Huntgoddess 3 years ago from Midwest U.S.A.

You and Annabelle are so lucky to have each other. God bless, dear, to you and your family.

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