Living with Stroke: A Sibling Story

Lindsay was 3 years old when her brother Jadon was born — nearly a month early and with significant breathing problems. After a series of tests and appointments, clinicians diagnosed Jadon’s condition: He’d suffered a stroke. He would need specialized care and extensive occupational, physical and speech therapy along his road to recovery.

Lindsay and JadonAt first, Lindsay didn’t notice anything different about her baby brother except that he was taking a lot of her mom and dad’s time. But as she grew, she wanted more information about his condition and sometimes grew frustrated with how Jadon’s condition was impacting the family.

Today, 7-year-old Jadon has made tremendous progress in his therapy. He plays soccer and takes a gymnastics class once a week, and has learned to do many things one handed to compensate for weakness on his right side. He most recently mastered playing video games using mostly his left hand. He continues to adapt and figure out ways to do everyday activities independently. Because of the brain damage from the stroke, he also has some ongoing developmental challenges including attention issues. 

Lindsay, now 10, and her mom, Laurie, discuss the challenges and rewards of living with a child with complex medical issues like Jadon’s and offer advice for others in similar situations.

Lindsay’s point of view

How do you feel about your brother’s stroke?

Lindsay: I was 3 when they diagnosed him with a stroke that badly affected the right side of his body. I didn’t really understand anything at the time except that my parents were really upset, which made me sad. When I got older and realized what was really going on, I was sad because we really couldn’t play together because he couldn’t sit up or talk and tell me what he wanted. 

What kind of extra help does your brother need?

Lindsay: He can’t really use his right hand, but we make him stretch a lot and he’s getting a lot better with using it. That makes me really proud of him.

Do your parents explain things to you when your brother is sick?

Lindsay: Yes, they explain things to me, but sometimes I don’t understand. Sometimes my mom uses big words. I usually just look it up in the dictionary when she uses words I don’t know.

What do you love about your brother?

Lindsay: When I’m sad, he can be really funny, especially when he is being stubborn.

What are your favorite activities that you do with your brother?

Lindsay: Long road trips; it helps us bond.

If you’re feeling upset, how do you cope and make yourself feel better?

Lindsay: Sometimes it's hard not to take it out on my brother and scream at him, but at my first SibShops we made a “Coping Kit” and we made a glitter wand in that kit. I like to stir it up and watch the glitter settle because it calms me down (and I like sparkly things).

Can you tell us more about SibShops?

Lindsay: SibShops is a place where you can explain your feelings to other kids who understand. There is always a theme and we do a lot of crafts. I like it because it calms me down. When I leave from SibShops, I feel like a cloud afterwards.

Is there anything else that has helped you cope?

Lindsay: I think that having a pet really helps with coping when you have a brother like mine. I have a puppy named Storm and he is so loving.

What advice would you give to other kids like you who have a sibling who’s had a stroke?

Lindsay: In times when they are making you crazy, take deep breaths and pet your pet if you have one.

Mom’s point of view

How did you explain Jadon’s medical condition to Lindsay?

Laurie: We started with small explanations in order not to overwhelm her, but Lindsay, being precocious, always wanted to know more. We tried to answer all her questions as literally as we could, but sometimes she would get confused.

When Lindsay is down or upset, what do you tell her? What is the most important thing you want her to understand?

Laurie: I tell her that I’m sad that she’s upset. I ask her what I can do to help her work through that feeling. I’ll ask things like: Do you need alone time? Or would you rather cuddle with me on the couch? Do you want to talk about it? And if so, who do you want to talk about it with?

What I most want her to understand is that it’s OK to feel any way she wants to feel, and that all of her feelings are a natural response to having a family like ours.

Is there any advice you’d offer other parents in your shoes for how to help siblings adapt and cope?

Laurie: Almost everything with parenting is trial and error and this is no different. As a mom, the first thing I want to do when one of my children is hurting is to make it stop, but I’ve found, particularly with my daughter, that trying to make those feelings go away wasn’t helping her. Once we encouraged her to embrace her feelings, she was able to work through them.

Originally published October 2016